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A narrative view of visual creative expression as psychosocial support for women with breast cancer 2003

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A NARRATIVE V I E W OF V ISUAL CREATIVE EXPRESSION AS PSYCHOSOCIAL SUPPORT FOR W O M E N W I T H BREAST CANCER by KATHARINE ROSEMARY COLLIE B.A., Binghamton University, 1982 M.F. A., University o f Massachusetts at Amherst, 1987 M A , University o f British Columbia, 1998 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES Individual Interdisciplinary Graduate Studies Program We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH C O L U M B I A July 3, 2003 €) Katharine Rosemary Collie, 2003 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of Jhi^trclJs. C ijyU\^u, <i' O The University of British Columbia ' Vancouver, Canada Date Ht^{y\ , Z^>P / \ 7 ' DE-6 (2/88) A B S T R A C T As breast cancer incidence and survival rates increase, there is an urgent need to make appropriate psychosocial support available to all women with breast cancer. In this qualitative study, narrative inquiry was used to examine how women with breast cancer used visual creative expression (art therapy and/or independent art making) to address psychosocial needs that arose for them after their diagnoses. Seventeen women, aged 37-82, participated in this investigation. Data analysis o f in-depth interviews with these women focused on narratives they constructed about why they turned to art therapy and/or independent art making and how it helped to be involved in these activities. Particular attention was given to the issue o f meaning making. Four storylines emerged from the analysis. "Art and art therapy as a haven" came from narratives about using art making or art therapy for comfort and affirmation. The narratives that comprised "getting a clearer view" were about using visual creative expression to create a clear picture o f emotional experience. "Clearing the way emotionally" came from narratives about self-expression and about processing difficult emotions. The narratives that yielded "expanding and enlivening the se l f were about the women fortifying and energizing themselves through visual creative expression. Two minor themes related to the role o f the art therapist and negative experiences with art therapy also emerged. In their narratives, the women portrayed visual creative expression as flexible, compelling, and powerful means of addressing multiple psychosocial needs simultaneously. Above all, the storylines show that the women valued visual creative expression as a way to reduce the feeling o f threat to existence, to aff irm present existence, and to promote the ongoing existence of both their psyches and their bodies. The results o f this study contribute to the field o f psycho-oncology by extending understandings o f meaning making in relation to breast cancer, supplying detailed explanations from the perspectives o f women with breast cancer o f how visual creative expression can be helpful, and providing valuable insight into how psychosocial support services based on visual creative expression might meet needs o f women wi th breast cancer that would not be met through other types o f services. Ul TABLE OF CONTENTS ABSTRACT i i T A B L E OF CONTENTS i i i ACKNOWLEDGMENTS vi Chapter 1: INTRODUCTION 1 Why this study? 4 Summary 5 Chapter 2: L ITERATURE REVIEW 1 Breast Cancer and Meaning Making 7 Ar t Therapy and Breast Cancer 15 Art Therapy 15 Literature about Ar t Therapy and Cancer 18 Summary 25 A Theoretical Perspective on Creative Expression and Cancer 26 Perspectives on Creative Expression and Health 28 Visual Art by Women with Breast Cancer 36 Summary 37 Chapter 3: METHOD 40 Theoretical Perspective 40 Procedures 42 Recruitment 42 Data Collection 43 Analysis 45 First readings 47 Second readings 48 Third readings 49 Fourth readings 50 Ethical Considerations 51 Confidentiality 51 Therapeutic interviews 52 Public meanings 52 Rigor 53 Summary • 55 Chapter 4: T H E PARTICIPANTS . 57 Annie 58 Hi lda 59 Donna 60 Sarah 62 Bonnie 63 Meredith 64 Heather 66 Patricia 68 Ursula 69 Galen 71 L i ly 72 Brenda 73 Serena 74 Gwen 75 Hannah : 76 Bessie 77 Laura 79 Summary 80 Chapter 5: STORYLINES A N D M I N O R THEMES 82 Ar t or Ar t Therapy as a Haven 83 Thematic Overview 83 Negative Cases 86 Art and Art Therapy as a Haven: Exemplar Narratives 86 Sarah's Narrative 87 Bonnie's Narrative 90 The Art Therapist and the Art Therapy Group 93 Summary 94 Getting a Clearer V iew and Clearing the Way Emotionally 94 Getting a Clearer View: Thematic Overview 96 Getting a Clearer View: A n Exemplar 98 Clearing the Way Emotionally: Thematic Overview 102 Getting a Clearer View and Clearing the Way Emotionally: A n Examplar. 107 Summary 112 Negative Cases 113 Expanding and Enlivening the Self 114 Enjoying Being Creative: Thematic Overview 115 Enjoying Being Creative: An Exemplar 117 Using More o f the Self: Thematic Overview 120 Using More o f the Self: An Exemplar 121 Connecting to a Larger Energy: Thematic Overview 123 Connecting to a Larger Energy: An Exemplar 124 Connecting to a Larger Energy. Another Exemplar 127 Vitalization: Thematic Overview 129 Vitalization: A n Exemplar 131 V Summary 133 Minor Theme: The Role o f the Art Therapist 134 Overview 134 The Role o f the Art Therapist: The Women's Stories 134 Reflections 137 Minor Theme: Negative Experiences with Art Therapy 137 Summary 141 Chapter 6: DISCUSSION 142 Introduction 142 Summary o f Results 143 Meaning Making 144 Coherence and Clarity 144 Resisting Discourses arid Owning One's Story 146 Af f i rming the Self 148 Meaningfulness 150 Meaning Making Summary 152 Emotional Expression 153 Visual Creative Expression 154 The Role o f the Therapist 157 Af f i rming Existence 158 Implications for Practice 159 Art Therapy and Narrative Therapy 159 Inward Focus and Outward Purpose 160 Art and Existential Therapy 161 Self-Care and Distance Delivery 162 Directions for Future Research 163 Limitations 165 Conclusion 167 REFERENCES 169 Appendix A: Flyers for Recruiting 179 Appendix B: Consent Form 182 A C K N O W L E D G M E N T S I would like to express my thanks to the 17 women who took the time to share their stories wi th me for this study, and to the people who helped me reach these women: June Slakov at the Brit ish Columbia Cancer Agency in Vancouver, Gail Konantz o f Abreast in a Boat in Vancouver, and Merijane Block at the Breast Cancer Fund in San Francisco. Warm thanks to my research supervisor, Prof. Joan Bottorff, and my committee members, Prof. Bonita Long, Prof. Maria Klawe, Dr. Simon Sutcliffe, and Cathy Malchiodi. Thanks also to Vincent Dureau for his conceptual input and his logistical support for the San Francisco portion o f the research. This doctoral research was funded by a L i Tze Fong graduate fellowship from the University o f British Columbia, a doctoral fellowship from the Social Science and Humanities Research Council, an Incubator grant from the Faculty o f Education at the University o f Brit ish Columbia, and a Hampton Fund research grant from the University o f Brit ish Columbia. I would like to acknowledge the support o f my graduate program, the Individual Interdisciplinary Graduate Studies Program, my academic home, the Institute o f Health Promotion Research, the Disability Resource Centre at the University o f Brit ish Columbia, and the Brit ish Columbia Cancer Agency. 1 Chapter 1: Introduction When a woman is diagnosed wi th breast cancer, not only does she have to very quickly learn about the range o f surgical, radiological, chemotherapeutic, and hormonal treatment options available to her, her social life and professional life may be turned upside down. She may have to stop working and her personal relationships may be jeopardized— as she undergoes invasive and sometimes damaging treatments. Her social and professional opportunities may be reduced due to social stigmas and negative stereotypes. Her plans, her way o f understanding the world, and her sense of who she is may all be called into question at a time when her physical health and possibly her survival are at stake (Bury, 1982; Nezu, Nezu, Friedman, Faddis, & Houts, 1998; Spiegel & Classen, 2000). She may not have the psychosocial support she needs while this is happening or she may exhaust her sources o f support while continuing to face challenges posed by breast cancer. Treatment and hospital stays can be terrifying and both cancer and its treatments are depleting. Surgery requires recovery time, and chemotherapy and radiation treatment negatively affect energy level, making it that much harder for a woman with breast cancer to mobilize her usual sources o f psychosocial support. Different women respond to breast cancer in different ways and it would be wrong to assume that all women with breast cancer face psychosocial challenges they cannot handle w i th their available resources. However, there is a large body o f research showing that interventions that address the psychosocial needs o f women with breast cancer have the potential to significantly improve quality o f life and possibly prolong survival (see Dreher, 1997; Helgeson & Cohen, 1996; Meyer & Mark, 1995 for reviews o f this research). It is important to make appropriate psychosocial interventions available to all who may need them, which may require developing new types of services as well as new forms o f delivery. This study was background research for developing forms o f psychosocial support for women wi th breast cancer to supplement existing services. The focus was on services based on visual creative expression. The term visual creative expression is used here to refer to 2 expression—whether skilled or unskilled and whether done in the presence of a therapist or not—that results in the creation o f objects or visual images such as drawings, photographs, videos, and quilts. Various theoretical frameworks have been put forward to understand the psychological, spiritual, and social dimensions o f cancer. Coping (e.g., Nezu et al., 1998) and adjustment (e.g., Classen, Koopman, Angell, & Spiegel, 1996; Helgeson & Cohen, 1996) are two o f them. In this study, I looked at psychosocial support for women with breast cancer through the lens o f meaning making. This conforms wi th my philosophical orientation and is a perspective that has been used by other researchers as a framework for understanding the experience of life-threatening illness (e.g., Baker & Stern, 1994; Fife, 1994; Nelson, 1996; O'Connor, Wicker, & Germino, 1990). The term meaning making has been used in many ways in reference to life disruptions such as cancer. It can be understood to be a process o f storying to create and maintain a coherent life story that casts the self as valuable, unique, and permanent (Arciero & Guidano, 2000; Becker, 1997; Edwards, 1993; Thompson & Janigian, 1988). Meaning making has also been described as a quest to detect and activate meaningfulness in life (Coward, 1990; Frankl, 1966). It is considered to be a dynamic and interactive process that occurs in relation to existing cultural discourses (Cortazzi, 1999; Crossley, 2003; Frank, 2002a; Gergen & McNamee, 2000; Mishler, 1986). As the population grows and ages and as medical technologies improve the rate o f detection, the number o f new cases o f breast cancer is expected to increase dramatically in coming years (Canadian Cancer Society, 2003). The survival rate is also expected to increase as detection and treatment improve. Thus, there wi l l be an increasing need to attend to the psychosocial needs o f women (and men) whose lives have been affected by breast cancer. Support groups are a common way to offer psychosocial support to people with cancer (Fawzy, Fawzy, Arndt, & Pasnau, 1995; Krupnick, Rowland, Goldberg, & Daniel, 1993; Trijsburg, van Knippenberg, & Rijpma, 1992). Some support groups offer informational support in the form of education about the disease, treatment options, nutrit ion, etc.; others offer emotional support through discussion with peers (Helgeson & 3 Cohen, 1996). Some include training in particular methods o f coping, for example active/assertive coping (e.g., Fawzy et al., 1993) or problem-solving coping (e.g., Nezu et al., 1998). The widely used supportive-expressive model developed at the Psychosocial Treatment Laboratory at Stanford University emphasizes social support in combination wi th emotional expression. Participants in these groups are encouraged to express a range of emotions and to both offer and receive social support within the group (Spiegel, 1993; Spiegel & Classen, 2000; Spiegel & Spira, 1991). The Stanford University supportive- expressive model has been adapted as a workbook journal for use by women with breast cancer in rural and remote areas who may not have access to support groups (Kreshka, 1997). Research about the potential benefits of psychosocial support for people with cancer has focused largely on group and individual interventions that are based on verbal expression (talking). However, other forms of psychosocial support exist. For example, the Stanford University supportive-expressive model has been adapted to include dance and imagery in groups for women with breast cancer (Serlin, Classen, Frances, & Angell, 2000). As the art and healing movement has expanded and hospital art programs have come into existence in North America—e.g. , Art That Heals at the Jonnson Comprehensive Cancer Center at the University o f California (Breslow, 1993), Art for Recovery at the University o f California at San Francisco Medical Center (Moynihan, 2001; Perlis, Wallace, & Rosenbaum, 1994), Arts in Medicine at the Shands Hospital at the University o f Florida in Gainesville (Lane & Graham-Pole, 1994)—art-based psychosocial support services have become increasingly common. There is a well established art therapy program at the provincial cancer hospital here in Vancouver. Group interventions have been developed for people with cancer that incorporate a range of types of creative expression. For example, Ferris and Stein (2002) have developed a workshop for cancer survivors called Cancer, Creativity, and Courage that combines art, drama, poetry, movement, ritual, myth, and mask making. Art-based psychosocial support services have received relatively little research attention compared to services based on verbal exchange, however, they may have advantages over services that depend on verbal expression, such as promoting emotional 4 expression and facilitating the expression o f things that are hard to put into words or that relate to taboo subjects (B. Mil ler, 1996). They may be particularly valuable for women with breast cancer. The large body o f visual art made by women with breast cancer suggests that visual creative expression may have special significance for women wi th breast cancer compared to people facing other illnesses (Malchiodi, 1997). I f services based on visual creative expression are to be developed further, a better understanding is needed o f how visual creative expression can be helpful to women with breast cancer from their perspective. The purpose o f this study was to examine how women have used visual creative expression—art therapy and independent art mak ing—to address psychosocial needs that arose for them as a result o f breast cancer and how visual creative expression was important to them, particularly in relation to meaning making. This dissertation research was part o f a larger study aimed at gathering information for the creation o f an internet art therapy service for women with breast cancer (Bottorff, Long, Conati, & Collie, 2000). It was the initial phase o f the study and was designed to provide background for the project. The research question was: "How have women wi th breast cancer used art making and art therapy for meaning making?" I begin my description o f the study wi th background information related to my personal motivations for doing this research. Why This Study? In order to illuminate my motivations for doing research about visual creative expression in the context o f breast cancer, I offer personal information about my background and my perspective. I worked as an artist for many years before becoming a counsellor/art therapist and researcher. During that time, I experienced major medical illness myself that resulted in residual disability. I came to understand that recovery from life-threatening or persistent illness requires treating the whole person. When the illness is severe, it is not enough to attend only to the physiological dimension. Personally, I could not begin to overcome my illness until I had paved the way emotionally and psychologically, which I did by making art. 5 As I have learned more about art and illness through my professional practice, I have come to believe that there is little relationship between artistic skill and the potential for therapeutic benefits from art making, except that some very skilled artists have diff iculty separating themselves enough from concerns about the quality o f their art to use the art process to address new psychosocial challenges. M y experience has been that people with little experience with art making who feel inhibited due to their presumed lack o f skill can overcome their hesitations quickly with the guidance of a teacher or therapist. I have carried a bias in favour of the therapeutic power o f visual creative expression while conducting this study. This bias is tempered by the fact that I am keenly interested in finding out i f it is justified. However, the purpose of this study was not to determine //visual creative expression can help women with breast cancer. Rather, the purpose was to gain a better understanding o f how visual creative expression can help. I chose breast cancer for this study because visual creative expression seems to have special relevance for women wi th breast cancer. I am interested in developing alternative and innovative ways to make psychosocial services widely available to people who are i l l . As someone who has experienced long-term illness, I am aware o f the burden that falls on patients who must repeatedly organize their time and limited energy to go to medical appointments—that often require long periods o f waiting. I am interested in relieving this burden and in removing barriers that prevent people from receiving services that could be helpful to them. There is a need to explore not only alternative types o f psychosocial support but alternative modes of delivery. M y interest in visual creative expression as an avenue for psychosocial support services comes in part from the potential it shows for adaptation to alternative modes of delivery, including delivery f rom a distance (Collie & Cubranic, 1999; Collie & Cubranic, 2002; Collie, Cubranic, & Long, 2002). Summary Given the increasing prevalence of breast cancer, the psychosocial challenges breast cancer can present, and the possibility that women with breast cancer may not have available to them the support they need, it is important to have in place appropriate psychosocial 6 support services for women with breast cancer that can supplement the women's own resources and that are readily available to them. Support groups based on talking are a common way o f providing additional support to women wi th breast cancer. However, psychosocial support services that employ visual creative expression may also be u s e f u l — the abundance of visual art made by women with breast cancer supports th is—and may have advantages over support based on verbal expression only. This study was an effort to gain a deeper understanding o f how art therapy and independent art making can be helpful to women wi th breast cancer and to illuminate the value o f visual creative expression as an avenue for psychosocial support, including its potential to expand availability o f support services for women with breast cancer. In the following chapter, I draw on theoretical and empirical literature, expert opinion from the field o f art therapy, and perspectives on visual art made by women with breast cancer to further explicate the rationale for the study. 7 Chapter 2: Literature Review In the first part o f this literature review, I present the theoretical perspective o f the study (meaning making) and examine literature about the experience o f breast cancer from this perspective. In the second part, I review literature about art therapy in relation to cancer to give a picture of current discourse about how visual creative expression can be helpful to people wi th cancer. Because this second body o f literature is limited, I then present additional perspectives on creative expression and health from a variety o f fields. In the final section o f the review, I discuss visual art made by women with breast cancer. Breast Cancer and Meaning Making The term meaning making has been used in a variety o f ways in reference to disruptive life events such as cancer. O f particular relevance to this study are the social constructivist conceptualizations o f meaning making as a process o f storying to create and maintain a coherent life story that casts the self as valuable, unique, and permanent (Arciero & Guidano, 2000) and the existentialist idea o f meaningfulness as self-transcendence (Frankl, 1966). Meaning making can refer to creating a sense of order in one's life (Becker, 1997) or a sense o f purpose (Edwards, 1993; Frankl, 1966). From a stress and coping perspective, i t has been described as a process o f arriving at the belief that life has both order and purpose (Park & Folkman, 1997; Thompson & Janigian, 1988). A n emphasis on a sense o f order is a characteristic o f definitions o f meaning making that focus on the individual. Becker (1997), an anthropologist who has studied the way people restore a sense o f continuity to their lives after disruptive events such as illness, claims that the need for a sense o f order and linear coherence is stronger in modern American culture, where individualism is emphasized, than in most other cultures. 8 Definitions o f meaning making that emphasize purpose tend to focus on the person in relation to others. These definitions may have spiritual and moral dimensions. This is the case for the definition proposed by Viktor Frankl (1966), an influential Austrian psychiatrist who developed an existential approach to psychotherapy called logotherapy (meaning therapy) and whose ideas about meaning making are referred to in many discussions o f illness and meaning making (e.g., Coward, 1990; Edwards, 1993). According to Frankl, meaning in life comes from self-transcendence, which is to say, from consciously looking beyond the self and seizing opportunities to respond responsibly to life's moment-to- moment possibi l i t ies—by offering oneself to the world through creativity (e.g. family, occupation, creative works), receiving what the world offers by being receptive to others and to the environment, and choosing one's attitudes to situations one encounters, particularly when one is faced with an unchangeable situation. These three forms of self-transcendence are ways to experience the self as part o f as larger whole, with a sense of purpose and significance in relation to that whole. According to Frankl, every situation, no matter how dire, contains the potential for a sense of purpose, because it is an occasion for meaningful, moral choice. From this perspective, meaning in life is a matter of detecting what life is asking o f one and responding by being generous, receptive, and wi l l ing to find opportunities for meaning in adversity. Frankl (1966) has described suffering as a primary life task ful l o f potential for experiencing meaning. Even in times of anguish and deprivation, it is possible to choose one's attitude toward one's circumstances and thereby to have the spiritual freedom that allows life's possibilities to be actualized as meaning. This spiritual and moral perspective emphasizes what Frankl called the will to meaning, the drive to satisfy the human need for meaning. According to Frankl (1966), a person does not need to ask the meaning o f his/her l ife, but rather needs to respond with moral choice when "questioned by l i fe," creating meaningfulness in the process (p. 111). This concept is central to Frankl's existential perspective: meaning is the responsibility o f the individual alone. It cannot be given or imposed. In logotherapy, existential despair—in the form of recognition o f the essential isolation o f each individual and the certainty of death—is considered part of life and 9 something not to eradicate but to experience, perhaps with a therapist to guide the way through. Intrinsic to definitions o f meaning making such as Frankl's (1966) that emphasize purpose is the idea of meaningfulness in relation to others or to spiritual goals and beliefs. This idea is generally missing from definitions o f meaning making that focus on order. I t is also missing from sociological conceptualizations o f meaning making that focus on the continuity o f one's life story (coherence). For example, in the symbolic interactionist framework (Blumer, 1969; Fife, 1994), meaning making is understood in terms of behavioural and linguistic responses to specific events that provide coherence, give a sense o f continuity between past and present, and function as a frame of reference for interpreting consequences o f events. Although the social interactionist view includes more than the individual, and frames meaning in terms of interactions and cultural processes, it does not include concepts o f morality, purpose, or meaningfulness. The narrative perspective on meaning making that underpins the research method used in this study contains elements o f all the definitions o f meaning making mentioned so far. A t its core are social constructivist theories that emphasize the role o f social interaction in meaning making and social constructionist ideas about the constraining effect o f dominant cultural discourses on the meaning making process (Gergen & McNamee, 2000). In this theoretical framework, meaning making is considered to be a dynamic and interactive process that occurs in relation to existing cultural meanings (Cortazzi, 1999; Crossley, 2003; Frank, 2002a; Gergen & McNamee; Mishler, 1986). Within the narrative perspective, meaning making is seen as an ongoing process o f storying. People compose and recompose their lives by generating meanings (evaluations, rationales, logical sequences) that are coordinated with other people's meanings, particularly the meanings o f significant others. The meaning making process is considered essential to human functioning. Symbolic mediation is required for the storying process, and the symbolic form that is generally assumed is verbal conversation—although it is recognized that other symbolic forms, such as visual imagery, can be used (Bruner, 1987, 1991). The stories, or narratives, people make this way give coherence and purpose to life experience and preserve the stability, uniqueness, and value o f the self (Arciero & Guidano, 2000). 10 Meaning making and identity formation are seen as intertwined. A n important aspect o f meaning making from this perspective is the ongoing struggle between a desire for normalcy and a need to resist existing cultural meanings i f they l imit the person's power and freedom. Adversive events such as cancer are thought to set of f an intense activation o f meaning making processes fuelled by "a profound stirring o f basic emotional themes" (Arciero & Guidano, 2000, p. 99). Diff icult emotions associated with the event provide motivation for restorying to restore coherence, sense of self, sense o f purpose, and meaningfulness. A characteristic feature o f meaning making seen from this perspective is the relation it establishes between restructuring the plot o f one's life story and modulating painful emotions (Arciero & Guidano, 2000). A deep reinterpretation o f one's past and a reordering o f present priorities are often part o f storying after an adversive event. Major transformations may be triggered as previously unarticulated feeling states are integrated into a revised and expanded self-narrative. When the integration has occurred, the uneasy emotions that were driving the process can subside. A new narrative coherence w i l l have been achieved and a satisfactory sense of self restored. Arthur Frank (1995), a sociologist who has written extensively about narratives o f illness, explains that storying is a dialogical and moral act that is reciprocally beneficial to the teller and the listener. The listener enables the story to be created and told. The teller is given an opportunity to make meaning, and, by revealing this process through tell ing, to show the listener or others faced with similar challenges how it was done. Thus, storying , after an adversive event serves others as well as the self. The listener is given a map o f the path taken by the te l le r—a map that the listener has helped to create. A key task o f storying is maintaining ownership o f the storying process, that is, holding on to the right to be primary author o f one's story and one's interpretation o f the events that have occurred, rather than letting one's power to define experience pass into someone else's control (Frank, 1997). The discourse o f a culture, which is to say, the set of meanings that make sense at a given time within that culture, constrains individual storying. Cultural discourse is a vehicle for exerting power over others through l imit ing the meanings that are available at a given time. People unwittingly subjugate themselves to the subtle forms of power carried by the 11 discourse o f their comrnunity, institution, etc., and accept the meanings held by those in power whether or not their own best interests are being served (Freedman & Combs, 1996; Gergen & McNamee, 2000). Meanings that support the structure o f power are more allowable than meanings that do not. I t is considered extremely difficult to construct meanings that run counter to dominant understandings. One reason is that efforts to resist dominant meanings are often blocked. Narrative therapy (Freedman & Combs, 1996; White & Epston, 1990) concerns itself w i th helping people establish patterns o f being that resist dominant meanings that l imit personal freedom and choice. In narrative therapy, clients are helped to recognize and mobilize their personal resources and to expand upon even very small incidences o f resisting disempowering patterns o f being. Power can be exerted over another person by claiming authority to ascribe meaning to the other person's distress without taking into account the person's own perspective, or by labelling the other person's meanings as pathological (Drewery, Winsdale, & Monk, 2000). Brown (2000) has pointed out that emotional distress and non-compliance with medical instructions are often considered pathological, even though they may represent healthy resistance to meanings that rob patients o f their power and choice. According to Brown, "a hallmark o f mainstream diagnosis is that it pathologizes the manner in which the powerless discomfort the powerful" (p. 302). So, for example, i f a woman wi th breast cancer exhibits a level o f emotional distress that goes beyond what is considered normal, or doubts the uti l i ty o f treatments that are recommended to her, her reactions may be considered pathological. The l imit ing power o f dominant discourses shows up well in the context o f breast cancer because of the role the female breast plays in the transaction o f power. Saywell, Beattie, and Henderson (2000) surveyed three daily papers in Br i ta in— two daily tabloids and two Sunday papers—all with national circulation, over a period o f 3 years in the 1990s and found that breast cancer was featured seven times more frequently than lung cancer, even though lung cancer kills approximately the same number of women as breast cancer in Britain. The media representations featured young women more often than older women, and focused on sexuality and maternity, often portraying sexually appealing women 12 martyring themselves for their famil ies—even though breast cancer is experienced by more older and post-menopausal women than young women, and the prototypical breast cancer patient is not a young women with the attributes o f a sexual icon who struggles heroically for the sake of her husband and young children. Say well et al. explain this by saying that in Western cultures, women are attributed value via bodies that are sexualized and commodified for male gaze and masculine consumption. It is typical for men to seek or assume ownership/control o f women's bodies and to use this ownership/control to gain and maintain power over women and power in relation to other men. Breasts are emblematic o f the female body and are important in this transaction o f male power. Saywell et al. claim that when breast cancer causes the breast to be something other than an emblem o f a sexual or reproductive commodity, a cultural discourse representing a deeply entrenched power structure (men over women, women as commodities for men) is disrupted. The cultural discourse can be upheld i f breast cancer is understood as a threat to feminine sexuality or maternity. This is problematic for women with breast cancer in two ways. Not only does it assume a narrow and disempowering definition o f female value, it takes that value away. A similar survey in Canada might not yield the same results. However, the two cultures are similar enough that the perspective provided by this study is useful for understanding power dynamics that may influence breast cancer discourse. According to Thorne and Murray (2000), breast cancer meanings are also constrained by residues o f historical views on breast cancer that linger in contemporary cultural discourse. They did a survey o f literary, historical, and medical sources from mainstream Western culture over the past century and found that during the Victorian era, the meaning breast cancer was given was based on a good/bad dichotomy in which women were simultaneously seen as having redemptive, purifying powers over men and as being containers o f bodily pollution. Women were considered to be intrinsically frail and flawed and incapable o f managing without male guidance. Female sexuality was denied and suppressed. In this era, breast cancer was treated with radical mastectomy to completely eliminate the inner pollution it represented. Breast cancer patients were expected to be tranquil and angelic, protecting those around them from distress. Later, during the post World War I I era, the meaning o f breast cancer was based on the satisfaction of males' 13 sexual desires through self-sacrifice. Thorne and Murray found that during this period, women were expected to be sexually attractive for the sake o f their husbands' sexual well-being, and because they themselves were considered to enjoy suffering and self-denial, they were expected to passive, resigned, and even masochistic. The language of cancer treatment was ful l o f military metaphors at this time, and breast cancer patients were expected to endure horrific, disfiguring treatments with passive stoicism, doing their utmost to protect the sexual power o f their breasts for their husbands' sake. Thorne and Murray show that these two perspectives have not disappeared even though feminism has brought perspectives on breast cancer that are less denigrating to women. They claim that having multiple conflicting attitudes toward breast cancer—that are all embedded in structures o f institutional power—-can make it hard for women with breast cancer to make sense of their experiences or to decide how to respond, for example to decide which treatments to accept. Thorne and Murray (2000) do not explain the method they used in their historical survey o f literature about breast cancer and it would be hard to ascertain that the picture they paint is an accurate rendering o f discourse around breast cancer over the last century. However, they point out that different eras carry different patterns o f meaning and that meanings from previous eras persist through becoming entrenched in institutions. The existence of multiple meanings, all needing to be upheld to maintain institutional power, all laden with gendered power dynamics, undoubtedly has resulted in conflicting and denigrating breast cancer meanings. Although Saywell et al. (2000) and Thorne and Murray (2000) illuminate challenges posed by cultural discourses surrounding breast cancer, they leave open the question o f what women do when they meet these challenges. A study by Mathews, Lannin, and Mitchell (1994) sheds light on this question. These researchers conducted a narrative study o f the sources o f knowledge 26 African-American women with advanced breast cancer used to determine the meaning o f their illness, and of the mechanisms they used to adapt their own understandings to pre-existing cultural models. The researchers wanted to understand why African-American women in North Carolina (USA) were not turning to the mainstream medical world for breast cancer treatment until the disease was very advanced. Many of the women who were interviewed held beliefs that ran counter to biomedical understandings o f 14 breast cancer. The study revealed that they were not wi l l ing to give up their own beliefs (identities) and by implication their power to make their own meanings as a prerequisite for receiving medical treatment. Mathews et al. identified three strategies the women had used in the face o f this discordance: (a) Some maintained their personal beliefs and refused medical help, (b) others replaced their personal beliefs with medical understandings, and (c) some found ways to combine their beliefs with medical understandings. The findings o f Mathew et al.'s (1994) study were heavily coloured by the specific cultural context—deeply entrenched racial segregation and oppression, including a profound mistrust o f White males on the part o f Black women—and therefore may have limited transferability to other contexts. On the other hand, because of the extreme power conflict it reflects, the study brings the issue of conflicts in cultural beliefs and strategies for addressing these conflicts into focus. Typically, people with major illnesses are expected to give themselves over to the very powerful biomedical world and to accept without question the meanings that support its power. One of those meanings is that a patient has little power or authority. Another is that illness is a bad thing. Yet another is that illness is a biological experience (the biological dimension being the one patients probably have the least latitude for adjusting). These patterns o f meaning pose problems for anyone experiencing major illness. They l imit an i l l person's ability to do his/her own storying, they tie the person to a story in which people who are i l l are relatively powerless, and they impose a story (illness is a biological experience) that an i l l person may not be able to modify in ways that would help preserve coherence, meaningfulness, or a sense of a unique and stable self. The perspectives on meaning making that I have presented here show meaning making to be a central life process that is particularly important when there has been a major life disruption and meaning making is required to maintain a sense of coherence and purpose in life and a sense of a unique, valuable, and stable self. Strong emotion is considered a crucial element o f the meaning making process, which may include a struggle between a desire for normalcy and a need to reject "normal" meanings that do not favour the person's freedom and power. Meaning making is considered to be a dynamic, interactive, and reciprocal process that is beneficial to the person who is storying to make meaning and also 15 to those who hear the stories that are being made, and who participate in their making by hearing them. These meaning making perspectives indicate a need on the part o f people who have experienced a disruption such as cancer for opportunities for interactive meaning making, including opportunities for emotional expression and for resisting dominant meanings. For people who do not already have these opportunities, they can be offered through psychosocial support services. Breast cancer poses particular challenges that may require specialized forms o f psychosocial support that can help women with the disease f ind their strength amid a complex array o f disempowering cultural discourses. Art Therapy and Breast Cancer Art Therapy The field o f art therapy is based on an age-old association between visual imagery and healing (Achterberg, 1985; Malchiodi, 1998). According to Edith Kramer (1958), an early art therapy theorist, the process o f art making is inherently healing. This idea continues to be a cornerstone o f art therapy thinking. According to Moon (1997), "The potent act o f expressing the truth o f one's existence is the healing agent" (p. 51). In art therapy, the therapy is transacted in relation to the art the client makes as well as in relation to the therapist. According to art therapy discourse, a client's art products, as well as the art making process, are a vehicle for healing. Margaret Naumburg (1966), another early theorist, saw art as a form of symbolic communication that can be used to facilitate emotional expression and bring insight and new understandings. One o f the conceptual foundations o f art therapy is the idea that visual creative expression brings forward emotional material that would not be expressed otherwise, and that this expression is a necessary first step to insight, integration, and resolution. Since the image precedes the word, we can through images ... evoke unknown aspects o f the psyche and bring them into the light o f consciousness; this results in understanding and often healing. For healing to take place, however, we must take the consequences o f what we have understood and bring our understanding into the reality o f lived life (Wallace, 1987, p. 115). 16 In art therapy, the expression o f emotion is considered important in its own right and also as a first step to therapeutic change. In art, emotions can be expressed that are related to topics that are generally not discussed openly, such as illness and death, or that are too complex, too terrifying, too new, or too contradictory to be put into words easily (B. Mil ler, 1996; Wood, 1998). Another early pioneer o f art therapy, Elinor Ulman (1961), defined art therapy as a melding o f art and therapy—art for discovering the self and the world and establishing a relation between the two, and therapy for fostering change that w i l l outlast the session. These ideas have been carried forward as the field o f art therapy has expanded from a predominantly psychodynamic (Freudian) foundation to encompass an array o f therapeutic perspectives (Rubin, 1987). Narrative theories o f meaning making have not been widely applied to art therapy. However, ideas about making sense of things, regaining a sense of control and purpose, integrating disruptive experiences, and enhancing sense o f identity are central to art therapy discourse—where art is seen as a meeting ground of inner and outer visions, and visual creative expression is seen as a way to simultaneously discover, express, and explore experience, and to realize and create meanings. There are many types o f art therapy, just as there are many types o f verbal therapy. Ar t therapy is used to address a wide range of problems, including severe psycho- pathologies, effects o f trauma, and ordinary life difficulties. I t is commonly used when there are barriers to verbal communication, for example, with people who have lost their ability to communicate verbally due to illness (e.g., Anand & Anand, 1997). For the purpose o f this study, I took an inclusive view of art therapy and use to the term to refer to any visual creative expression facilitated by a trained art therapist in the context o f an identified therapeutic setting. A key concept in art therapy is that art can function as a "container" for the expression o f diff icult material (Robbins, 1987). The containment gives a sense of security that makes it possible to confront and express things that are painful or threatening to the self. The art is simultaneously the vehicle and the safe receptacle that permits expression o f diff icult emotional material. It is a means for externalizing this material, taking it from 17 inside the person to outside, providing relief and reflective distance. It gives a visual display that others can see and acknowledge. Ar t has been used in medical settings since at least the 1940s when Adrian Hi l l advocated the use o f art for recovery from tuberculosis (Rosner David & Ilusario, 1995). Recently, the expansion o f the art and healing movement, the advent o f psychoneuro- immunology, and an increasing interest in mind-body connections have brought art therapy forward as an adjunctive treatment modality for people wi th medical illnesses. Ar t therapy is used in cancer settings with both children and adults (Malchiodi, 1993, 1999a, 1999b). The claims that have been made by art therapists and others about the power o f visual creative expression to help adults experiencing medical illness are far-reaching. They include: facilitating emotional expression (e.g., Anand & Anand, 1997; Borgman, 2002; Rudloff, 1985), reducing pain (Trauger-Querry & Highighi, 1999), increasing sense of control (Baron, 1989; Borgman, 2002; Hiltebrand, 1999), developing self-awareness (Lane & Graham-Pole, 1994; Zammit, 2000), amplifying the mind-body l ink (Baron, 1989; Long, 1998; Lusebrink, 1999), reducing stress (Breslow, 1993; Long, 1998), realizing and mobilizing inner healing powers (Baron, 1989; Corbat, 1997; Dreifuss-Kattan, 1990; Halpern, 1994; Predeger, 1996; Zammit, 2000), activating spiritual healing (Samuels, 1994), gaining inner strength and sense of purpose (Malchiodi, 2003; Minar, 1999), circumventing taboos around discussing illness and death (B. Mil ler, 1996; Rudloff, 1985; Wood, 1998; Zammit, 2000), reducing feelings o f isolation (Gabriel et al., 2001; Malchiodi, 2003; Perlstein, 1996), enhancing self-determination (Lane & Graham-Pole, 1994), strengthening identity and positive sense o f self (Luzzatto & Gabriel, 2000; Perlstein, 1996; Wood, 1998), enhancing self-love (Dreifuss-Kattan, 1990), facilitating meaning making (Edwards, 1993; Lynn, 1994; Malchiodi, 2003; B. Mil ler, 1996; Predeger, 1996; Trauger-Querry & Haghighi, 1999; Wood, 1998), transforming emotional states (Luzzato & Gabriel, 2000; Zammit, 2000), and bolstering immunity (Baron, 1989; Hiltebrand, 1999). These numerous and varied claims touch on physiological, social, emotional, psychological, spiritual, and existential dimensions o f illness. However, few are backed up by research evidence. They are significant primarily for the range of possibilities they propose. 18 Literature about Art Therapy and Cancer The field o f art therapy has a limited tradition o f empirical research. Ar t therapy knowledge is usually shared in case presentations and essays illustrated wi th case vignettes in which interpretations o f the author's own clients' artworks are presented as evidence. Typically, these case presentations and essays contain little or no information about: (a) the theoretical framework used for the therapy, (b) the specific interventions that were used, (c) how client artworks were interpreted, (d) negative cases, (e) other potentially influential factors, or (f) context information about the clients whose artworks are offered as evidence; it is therefore hard to assess the value o f the claims that are made, or their transferability to other situations. Often unexplained interpretations o f artworks are often offered as evidence that art therapy caused certain outcomes. Most o f the claims listed above are contained in case presentations and essays that indicate possibilities to be explored (Gantt, 1998) and that are valuable as expert opinion. In the fol lowing paragraphs, I examine published literature about art therapy and therapeutic art wi th adults facing cancer. I include four essays illustrated with case vignettes, two single case presentations, two research studies about art therapy and cancer in general, and one research study that addresses therapeutic art in relation to the experience o f breast cancer. I also discuss one unpublished research study about therapeutic art in relation to the experience o f breast cancer. The assumption that emotional expression is important during times o f diff iculty is stated directly or indirectly in much o f this literature. For example, in an essay about art therapy in cancer care, Minar (1999), an art therapist, begins with the premise that people experiencing cancer need to express their feelings about "the emotional trauma that accompanies the physical and medical aspects o f the disease" (p. 227). She says art therapy is a viable means for this because it involves "highly personal non-verbal communication" (p. 227). She also claims it is a way for people with cancer to discover inner strengths and a renewed sense o f purpose. Minar organizes her argument around the idea that people with cancer can use visual imagery to confront the "hurters" in their lives and discover the "healers." She illustrates her essay wi th multiple case vignettes that make these ideas seem real, but that do not give evidence that the positive outcomes she describes occurred, or, i f 19 they occurred, that they were caused by the art therapy and not something else. She does not provide any o f the following: a discussion o f the theoretical framework used for the therapy, a description o f the specific interventions that were used, a discussion o f how the art was interpreted, an analysis o f negative cases (instances where art therapy did not help), a discussion o f other factors that may have contributed to the effects she attributes to art therapy, or information about social or cultural factors that could have a bearing on the therapeutic interaction. Without this information, it is hard to understand what happened in the cases she describes and impossible to judge how the ideas could be transferred to other clients in other situations. Therefore, her argument stands as opinion only. In a presentation o f the case o f a young man who died o f cancer, Rudloff (1985) emphasizes the importance of emotional expression and states this as the main goal o f the art therapy she offered to the man. A theoretical rationale for this goal is supplied, namely that unexpressed negative emotions may play a causative role in major physical illness (Simonton, Simonton, & Creighton, 1978). A second goal is also described: to use visual creative expression to reveal aspects o f the inner self that are not knowable consciously and thereby to bring conscious insight. Rudloff offers no evidence that the client was interested in these goals and states that the second goal was not met in that the client did not discuss insights with her. Instead, she gives a rich and detailed description of the therapy sessions (as i f inviting the reader to attend them), the client, the client's many artworks, and what her interpretations o f the artworks revealed about the client's emotions and psychological defences. Thus, the case presentation illustrates clinical assumptions without validating them. Hiltebrand (1999), who is also an art therapist, argues that there is research evidence to suggest that cognitive and emotional states play a role in cancer etiology, particularly feelings o f helplessness/hopelessness and the inability to express emotions. She reasons (without providing justification for this reasoning) that factors that affect cancer risk probably also affect immune system functioning, such that psychotherapeutic interventions can be used to enhance immune system functioning for people wi th cancer. She says art therapy can: (a) reduce helplessness (lack o f control) through the control the person has over the art experience, (b) decrease hopelessness by reducing physical pain with distraction, and 20 (c) increase emotional expression through contained non-verbal expression. She uses case vignettes and interpretations o f artworks to illustrate her claim that at the very least visual creative expression can reduce feelings o f helplessness/hopelessness and increase emotional expression, and that it may also be a means of strengthening immune system functioning. Her argument is mainly hypothetical and is framed as a plea for more research on this topic. Baron (1989) makes a similar plea in an essay illustrated with case vignettes about (a) the power o f art images to reveal unrecognized somatic states and (b) the potential to influence the body by creating imagery representing desired states. She cites literature to back up the first o f these points and argues that art therapists who are trained to interpret images have an important role to play in assessing the progression o f physical illness through images made by patients. She backs up her second point wi th case vignettes that demonstrate how she tried to help two people with cancer use their art images to fight the progression o f the disease, without, however, providing any evidence o f success. She presents an optimistic argument that represents the clinical perspective o f someone who has boldly tackled the issue of creative expression as a catalyst for mind-body effects. Long (1998), another art therapist, also claims that people experiencing medical illness can use art to influence the functioning o f their bodies, by transforming the somatic pictures they hold in their minds. She uses the "Expressive Therapies Continuum" (Kagin & Lusebrink, 1978) as a conceptual framework for her argument that "we can directly influence the functioning o f our bodies via the process o f making images to positively alter pain signals and dysfunctional patterns o f illness" (p. 529), and builds on the idea that visual images are a means of communicating between the mind and the body (Lusebrink, 1999). She illustrates her argument with several case descriptions, including a description o f treatment she gave to a woman with breast cancer. She outlines the problems to be addressed—stress and "healing the wound in her breast" (p. 533)—and gives a detailed description o f the interventions she used to address these problems, which included hypnosis, guided relaxation, spontaneous art making, body mapping, and sand play. Long does not give enough information to support her claim that the client in question changed her physiological functioning with her imagination and visual imagery. The evidence she provides makes it seem plausible that the effects she claims were at least partially caused 21 by art therapy, but there is no way to judge i f the same effects might occur in other cases. Her argument is valuable primarily as expert opinion. Gantt (1998) has pointed out that a drawback to case presentations in art therapy is that generally art therapists use spectacular cases to present clinical ideas, thereby l imit ing the transferability o f their observations. A case in point is Zammit's (2001) use o f a spectacular case to present ideas about how art making during the experience of cancer can be a way to simultaneously: (a) create an awareness o f inner realities that were previously inaccessible, (b) diagnose the spiritual cause of illness, (c) illuminate what is necessary for holistic healing, (d) express a range of emotions, insights, and imaginings that might not all be socially acceptable, (e) predict recovery, (f) compensate for psychic imbalances, and (g) transform emotional states. The participant described in this case study was a highly educated, highly motivated female psychiatrist who responded to incurable cancer by going into spiritual retreat and using art as a vehicle for a holistic spiritual journey. She had no previous art experience, yet she produced a large number o f complex paintings as part o f her healing process (without the guidance of an art therapist or art instructor). This case study has greater credibility than most because (a) the research method and theoretical framework are described in detail; (b) data were collected from multiple sources (interviews wi th the participant, non-participant observation, existing documentation o f the participant's artwork, the participant's journals, and the participant's artwork); (c) interview excerpts are included in the report such that the interpretation does not rest solely with the author; and (d) the results were checked with the participant. The participant stated emphatically that art making helped her recover from an incurable disease. It is easy to believe that the healing that is described did occur and that art making had something to do with it, even though there is no analysis o f the other things the participant was doing simultaneously (meditation, intense emotional processing). However, it is an extraordinary case w i th limited transferability that points to possibilities only. In most art therapy case presentations, clients are present through their art, but their voices are missing. It has been acceptable in the field o f art therapy to privilege art therapists' interpretations o f their clients' imagery and to accept their descriptions o f therapeutic change without any corroboration from clients. The question o f whether or 22 not the clients who are used as examples would agree with the conclusions that have been reached does not get addressed, let alone answered. Zammit's (2001) study is an exception in that she used other sources o f data besides art and includes the participant's ideas in her report. However, she bases her conclusions almost exclusively on an analysis o f the paintings that are used as illustrations, without explaining what factors influenced this analysis. The participant's voice disappears in this final analysis. Thus, Zammit perpetuates the problematic idea that art therapy truths are contained in art therapists' interpretations o f client artwork and that these interpretations can stand as evidence of both therapeutic change and causation o f that change. Moreover, her conclusions focus only on ascertaining that art making helped, while ignoring the more important question o f how it may have helped. In addition to these case presentations and essays, there have been a few research studies on the topic o f art therapy with adults facing cancer that have used designs that allow for more than the presentation o f expert opinion. Luzzatto and Gabriel (2000) included the perspectives o f patients in an evaluation o f a 10-week art therapy program for adults wi th cancer called The Creative Journey. The stated purpose of this hospital program (that was developed by the authors) was to help people with cancer re-establish their self-identity and self-confidence through strengthening the inner self and building trust in the environment. The program was defined neither in terms of art nor psychotherapy, but rather as a possible way to f ind "a new source o f inner strength" (p. 266). Luzzatto and Gabriel give a detailed session-by-session description o f the program and present a synopsis o f an evaluation in which 70 people who participated in the program were asked to give written answers to the questions, "What did you find helpful?" and "What was unhelpful?" A n undescribed analysis yielded three categories o f responses pertaining to (a) positive changes in mood, including joy from creativity and peace from catharsis and acceptance from the group; (b) increase in self-awareness, including awareness o f both positive and negative parts o f the self; and (c) changes in attitudes toward others, including increased respect and compassion. There were no negative comments but the authors note that they were unable to include the few people who dropped out o f the program early on. Because the evaluation procedures are not described in detail, the results must be taken as anecdotal evidence—that is important because it is from the perspective of people with cancer. 23 Gabriel, Bromberg, Vandenbovenkamp, Walka, Kornblith, & Luzzatto (2001) describe a pilot study they conducted with The Creative Journey to determine its appropriateness for use wi th cancer patients who are isolated for bone marrow transplants (BMT) . The goals o f the study were: (a) to test the feasibility o f introducing art therapy as a supportive intervention for adult B M T patients in isolation, (b) to assess how patients would use the program, and (c) to identify which patients would most benefit f rom art therapy. A n ethnically diverse group o f 4 male and 5 female B M T patients (half o f those who were invited) whose ages ranged from 30 to 61 elected to participate in the program when they were shown the workbook version o f The Creative Journey that would be used in the study. Throughout their isolation, which ranged from 34-91 days, these patients had regular sessions with one of three art therapists, following the 10-part sequence o f activities that comprise The Creative Journey. They were also encouraged to make images on their own between sessions. The therapeutic goals were to help patients to express themselves, make things that are hard to put into words visible, and access new sources o f strength. The first goal o f the study (Gabriel et al., 2001) was addressed by chronicling the patients' involvement in the program. It was judged to be feasible based on the rate o f participation and the degree of involvement. The second goal was addressed wi th (a) a thematic analysis (done by three raters) of images made during art therapy sessions and the patients' comments about their images and (b) a process analysis of three case descriptions, one for each of the three themes identified in the thematic analysis: strengthening positive feelings, transforming distress, and sharing existential/spiritual issues. These analyses showed what issues the patients addressed with art therapy and how therapeutic change was registered in the patients' images. The researchers observed a difference between images made by patients on their own and images made during a session wi th an art therapist. When patients were alone, they seemed to focus on positive imagery; when they made images in the presence of an art therapist, they seemed to express a wider range o f emotions, including distressing emotions. The third goal was addressed by considering the other results together. The authors' conclusion was that patients who have diff icult family relations prior to admission and those wishing to explore existential/spiritual issues would benefit the most from the program. 24 Gabriel et al.'s (2001) small but well designed pilot study is a rare example o f a systematic approach to examining how adults with cancer can be helped wi th art therapy. The researchers' conclusions do not rest on unexplained interpretations o f client artwork, but on a wel l described and well verified analysis o f a range of other types o f evidence, including patients' own ideas about their artworks. The context, the intervention, and the study procedures are well documented, so that the value and transferability are easy to assess. What is missing is patients' opinions about the usefulness o f the program. Nevertheless, the study is a significant contribution to the task o f identifying how and where art therapy can be helpful to adults experiencing cancer. Predeger (1996) specifically addressed breast cancer in a qualitative feminist study about healing from breast cancer through group art making. For this study, 18 women with breast cancer met as co-researchers with the lead researcher every other week for 6 months to make art, reflect on their art together, and formulate themes from the audiotapes o f previous sessions. They also wrote and made art between sessions, all for the purpose o f shedding light on the two research questions: (a) "What is the meaning o f healing through the expressive arts for women living with breast cancer?" and (b) "What are the processes and outcomes of women co-creating personal and collective knowing?" (p. 49-50). The art making was facilitated by artists, not art therapists. Predeger's (1996) study gives a compelling picture o f an empowering healing process. The women's voices are present in the form of numerous quotes that contain descriptions o f benefits they said they received. The women analyzed the experience collectively to identify main themes. These were that the experience: (a) gave them an avenue for generating positive meanings about breast cancer, (b) stimulated their creativity, (c) allowed them to actualize an overwhelming need to express what they were experiencing and their drive to push forward, (d) helped them regain feelings o f control, (e) helped illuminate their changing perspectives, and (f) let them be both validated by and supportive o f other women with breast cancer. This study identifies vehicles that were used for healing and knowing (art making, dialogue, reflection, journaling, shared leadership) as well as some outcomes. However, it does not show which parts o f the experience helped in what 25 ways. This is a limitation o f many studies o f group psychosocial interventions for people wi th cancer: A multi-faceted intervention is studied as a whole and outcomes are identified, wi th no indication o f which parts o f the intervention might have mattered more or less (e.g., Fawzy et al., 1993). Moynihan (2001) conducted a small phenomenological study in which 3 women wi th breast cancer, whose ages ranged from 51 to 57, were interviewed during their participation in the Art For Recovery program at the University o f California at San Francisco Medical Center. Each woman was interviewed after each of three one-on-one sessions wi th an "attending artist" who was not an art therapist. The intervention, the analysis, and the findings o f this unpublished study are described too vaguely to assess the value o f the study. The discussion o f the six "general constituents" o f the experience that are the primary findings o f the study ("safe," "emotional," "discover new while i l l , " "artistic expression and hope," "attending artist's personal presence," and "unique complex o f meanings") gives greatest prominence to the ideas of emotional safety, acceptance, and revitalization, and thereby offers these as threads o f ideas that could be followed in further research. Summary The claims that have been made by art therapists about the potential o f visual creative expression to be helpful to adults experiencing cancer are largely in the form o f clinical opinion. These clinical claims are significant because of the great range of possibilities they present and because of the breadth of clinical experience they reflect. Benefits that have been proposed repeatedly are heightened emotional expression, increased inner strength, greater sense o f control, and improved immunity. These claims indicate possibilities to be explored with further research. Only two of the studies reviewed here focused specifically on the experience of breast cancer (Moynihan, 2001; Predeger, 1996). In Predeger's study, group art making was evaluated together with the other components o f the intervention and therefore the study does not show clearly how visual creative expression helped. There is a need for research about art therapy and breast cancer that focuses explicitly on visual creative expression as an avenue for psychosocial support. 26 A limitation o f literature about art therapy and cancer is that many positive outcomes have been described or proposed without any exploration o f negative outcomes or contraindications. O f the essays, case presentations, and research studies presented here, the pilot study by Gabriel et al. (2001) is the only one that included an effort to determine which patients would be most likely to benefit from the program they were studying. The few research studies about art therapy for adults facing cancer that have been based on the perspectives o f patients reinforce the idea that emotional expression, in particular creative self expression, is in itself a potential benefit o f art therapy, along with improved sense of control, positive changes in mood, and other emotional and psychological benefits that have been proposed in essays and case presentations. These research studies also highlight social benefits. The women in Predeger's (1996) study described the opportunity to offer support as a benefit o f the intervention. One of the positive outcomes mentioned by patients in Luzzatto and Gabriel's (2000) study was increased respect and compassion for others. These two examples suggest that studies about art therapy for adults facing cancer that are based on the perspectives o f patients can bring different kinds o f understandings than studies that omit patients' perspectives. Overall, the literature reviewed here indicates many possible ways visual creative expression might be helpful to women with breast cancer. However, only two studies were specifically about the experience of breast cancer. In order to better understand how art- based psychosocial interventions such as art therapy can be helpful to women wi th breast cancer, research is needed that (a) focuses specifically on breast cancer, (b) is systematic and well-documented, (c) includes the perspectives o f women with breast cancer, (d) examines both helpful and unhelpful experiences, and (e) identifies qualities that distinguish visual creative expression from other avenues of psychosocial support. A Theoretical Perspective on Creative Expression and Cancer In her book, Cancer Stories: Creativity and Self-Repair, Dreifuss-Kattan (1990) presents a theoretical explanation for how and why creative expression (art or writ ing) can help in healing from cancer. Her ideas are based on: (a) a review o f works by 32 authors who were diagnosed with cancer during their writ ing careers, (b) interviews with these authors, 27 (c) an analysis o f visual art made by art therapy clients o f hers who were experiencing cancer, and (d) psychoanalytical theory. The main ideas Dreifuss-Kattan (1990) puts forward are (a) that there are inherent links between creativity, loss, and mourning; (b) that creativity is always available to ease pain during times of actual or impending loss; and (c) that it is useful for clinicians to help people bring creativity forward at these times. She makes her case by quoting artists and writers and providing detailed information about these people's creative work and life circumstances at the time. She relates their perspectives to her theoretical framework and discusses the clinical potential and pitfalls of using creative expression to help people with cancer. Driefuss-Kattan (1990) uses psychoanalytic theory to explain how creative expression can help someone with cancer who has concerns about loss and death. She says creativity stems from a child's early experiences o f replacing the security and (timeless) comfort o f a caring mother figure wi th an imagined image o f the mother figure. This is done by "creating" transitional objects, such as teddy bears and favourite blankets that stand in for the mother's presence and that bridge the gap between the child and the mother figure. These imaginative acts let the child give her/himself feelings o f security and comfort while experiencing absence or loss. According to Driefuss-Kattan, any act o f imagination or creativity can counteract feelings o f absence or loss in this way. The ability to create gives the child another power, too: the power to tolerate a bad internal other, which is to say a negative internalized sense of the absent mother figure. The absent mother figure is a target o f anger and aggression, which, according to this theory, results in feelings o f guilt (about the anger and aggression being the cause o f the absence) and depression. The substitute for the mother figure (the teddy bear, the artwork) is a good internal other because it provides feelings o f comfort and security and is not touched by feelings o f guilt and depression. In this way it allows a person to have a positive sense o f self when experiencing absence or loss. According to this theory, all acts o f creation are extensions o f the childhood process o f creating feelings o f security and comfort for oneself, and a positive sense of self in spite o f feelings o f loss. A person with cancer who writes or paints w i l l be able to feel self-love and power over loss in spite o f a bad internal presence 28 (cancer). There w i l l be less fear o f death and a more positive sense of self, while intact, healthy, creative parts o f the self are revealed. According to Dreifuss-Kattan (1990), a therapist or some other support person is necessary for the process o f self-repair through creative expression to be successful. She claims that the feeling o f power that comes during the beginning stages o f creative acts can turn into a focus on the self that can cause feelings o f isolat ion—the opposite o f what is desired from the process—i f there is no one who wi l l receive what is being created. The therapist or support person is another l ink besides the artwork between the person's inner and outer worlds, a l ink that allows the person to feel connected, but separate. Like the good internal other (the art), the therapist cannot be destroyed by strong emotion. Dreifuss-Kattan's (1990) explanation o f how and why creative expression can be helpful to people wi th cancer is comprehensive and compelling. I t brings forward the idea that creative visual expression can give feelings o f power, comfort, and security in the face o f illness and loss, and a positive sense of self as healthy parts o f the self are revealed. This explanation requires an acceptance of psychoanalytic theory—a theory that, although venerable, remains untested by systematic research. Thus, it is a possible explanation for possible positive outcomes resulting from creative expression for people experiencing cancer. Perspectives on Creative Expression and Health Because research and theory about visual creative expression and cancer are l imited, I present additional perspectives and opinions on creative expression and health from a variety o f disciplines. I present these to give a more complete picture o f current discourse in this area. I have chosen perspectives that have been influential and that are based on many years o f work. They represent examples of how individuals have theorized about their observations and experiences. They reveal knowledge that has evolved from extended involvement in the authors' respective fields. I begin with the perspectives o f three creative arts therapists. These are followed by perspectives o f psychologists, creativity theorists, and leaders in the hospital arts movement. 29 Aldridge (1993), a music therapist, has made a compelling argument (based on extensive clinical experience and existing literature) for the use o f creative arts therapies in the treatment o f H IV /A IDS. The argument is based on two main ideas: (a) that creative arts therapies "offer an existential form of therapy that accepts patients as they are and affords them an opportunity to define themselves as they wish to be" (p. 285) and (b) that creative arts therapies focus on potential rather than on pathology. The key themes are maintaining integrity and fostering hope. Aldridge says the arts can give people facing death something to live for and can provide a vehicle for expressing feelings about death that might be hard to put into words. He sees the arts as a refuge from the emptiness o f existence. According to Aldridge, the arts stimulate an "awareness o f l iving in the face o f dy ing" (p. 295) through concrete achievements and personal expression. He claims that an important consideration for people experiencing HIV/AIDS is that their involvement in the arts positions them as actively partaking and self-defining, not passive and judged. They can express their being in ways that are not delimited by illness. The arts provide an arena for grappling with the meaning o f suffering by giving it form, and for making sense out o f challenging, unexpected experiences. Aldridge claims that wi th the arts there is the potential to bring form out o f chaos, which can make it more possible to f ind hope in situations that seem hopeless, and make it more possible to transcend, which is to say to "extend the self beyond the immediate context to achieve new perspectives" (p. 289). Although early death is not as likely for women with breast cancer as it was for people with H IV /A IDS at the time Aldridge wrote this article, his ideas about grappling with the meaning o f suffering, maintaining integrity and fostering hope, and defining oneself are relevant to the experience o f breast cancer and to the meaning making focus o f this study. Edwards (1993) is an art therapist who has also worked extensively wi th people wi th H IV /A IDS. She presents a theoretical framework for how art making can be an avenue for healing for people with HIV/AIDS, based on her clinical experience. She frames her ideas in terms o f meaning, which she defines as feeling a sense of purpose and holding values that guide actions and impart significance to life. She relates meaning to hardiness (i.e., resistance to disease), and proposes that creativity is a contributing factor in hardiness, along wi th the three qualities of control, commitment, and challenge that have been 30 identified by Kobasa, Maddi, Puccetti, and Zola (1985). Edwards says art making can help identify sources o f meaning and can, in itself, be a reason to live. Additionally, it strengthens problem-solving skills and increases confidence and sense of control. Edwards claims that expressing painful feelings and having them accepted by a therapist can help people with HIV/AIDS be less fearful o f the powerful emotions they may be experiencing. After some o f the diff icult emotions have been expressed, art making can be an avenue for creating hopeful or comforting images. She says people tend to create what makes them happy. She calls this "spontaneous restitution" (p. 326). People make images o f beauty, strength, caring, eternity, etc. to bring these things into their personal worlds so they can feel them and believe in them. Edwards says restitution can also come from the high that comes from creative accomplishment and from experiencing oneself taking charge. Thus, Edwards presents a comprehensive view of visual creative expression in the context o f illness that links creativity to meaning in life, self-restoration, and resistance to disease. B. Mil ler (1996) is a British artist, art educator, and art therapist who has worked wi th the elderly and the terminally i l l . He gives a perspective on art and death based on his experience offering art therapy to people who are very old, are l iving in institutions, who may be terminally i l l , but are not senile. He says the main issue with this population is fear o f the proximity o f death and that the purpose of art therapy in this situation is to work toward death in an open, constructive way. He says art therapy is uniquely suited to this because it can circumvent the great taboo around death and allow the "unsayable to be said" (p. 128). B. Mil ler postulates that the great fear o f physical death may have to do wi th the materialistic, empirical orientation o f our society. Reason cannot comprehend death and i f reason is the only way o f comprehending things then death is incomprehensible. However, he says there are other ways—symbol ic or primordial w a y s — o f comprehending and he offers various reasons why paintings are a suitable medium for coming to terms and expressing things that cannot be expressed in other ways. For example, he says "visual images are capable o f working on many levels and o f expressing seemingly contradictory ideas and feelings simultaneously" (p. 132). Abstract qualities and feelings can be depicted wi th great precision in art, as well as things that are infinite or oblique. B. Mi l ler explains that it can bring relief to externalize feelings that have not been expressed, but he says he 31 main purpose o f artistic expression in late life is self-development, in particular, self- illumination—which B. Mil ler sees as the primary objective o f later life. In this discussion o f art therapy wi th people who are close to death, B. Mil ler highlights important qualities o f visual creative expression that have relevance for people facing a major illness such as breast cancer (as wel l as for people facing death), in particular the capacity to express complex, contradictory, or taboo emotional material that would be hard or impossible to express in words, and the capacity for self-illumination. In an essay about creativity and mental health, Cropley (1997), a psychologist, points to similarities between established criteria for creativity and established definitions o f mental health—such as flexibil i ty o f thinking, tolerance o f uncertainty, empathy, positive self- image, independence, willingness to risk, and persistence—and proposes a causal relationship between creativity and mental health: by engaging in creative activities that require these qualities, characteristics of mental health can be cultivated. He claims it is possible and desirable to foster creativity in order to promote mental health. This is an important counterargument to the belief that creativity is inextricably linked to psychopathology and gives a framework for understanding the idea that is the basis o f the f ield o f art therapy, namely that creative expression can be intrinsically therapeutic. Csikszentmihalyi (1996), a prominent creativity theorist, describes creativity as the central source o f meaning in people's lives, and the thing that distinguishes humans from all other beings. He sees creativity as the cultural equivalent o f the process o f genetic change that results in genetic evolution. He says people create new theories, songs, recipes, laws, values, etc. in the same way genetic mutation and other biological processes create new material. The constant generation o f new material within a species or culture improves the chances o f adaptation and survival. On an individual level, Csikszentmihalyi claims that involvement in creative activities makes people feel we are part o f a larger entity and makes us feel that we are l iving fully. Thus, Csikszentmihalyi gives a picture o f creativity that has many levels, from the species level, to the cultural level, to the level o f personal meaning. He thereby paves the way for understanding how visual creative expression may have the capacity to be therapeutic on many levels simultaneously, as is often claimed (e.g., B. Mi l ler, 1996). 32 Over a period o f 10 years, Dissanayake (1988) conducted a comprehensive ethological analysis o f the behaviour o f art making across human history, in order to answer the question "What is art for?" Through a broad survey o f art behaviours, she shows that in non-industrialized and non-literate societies around the world, a primary purpose of the arts has been to make things special and to highlight behaviours and events through which group values—often o f a sacred or spiritual nature—are expressed and transmitted. She then provides a detailed analysis o f how the purpose of art making has been changed by industrialization, for example, by the shift to detached, mediated, and isolated experiences, and the renouncement o f immersion in experiences that are not mediated by words. According to Dissanayake, increased individualism and privatization have brought abstraction, self-consciousness, and critical, reflexive th ink ing—which have pushed the "making special" function o f art to the side and brought other things forward. She says art in industrialized societies still faintly signifies the special and the spiritual as it has over the millennia, but its main purpose now is to organize and integrate experience and to counteract the fragmentation o f individualism and abstraction. This integrating is done individually, not collectively, and is a form o f healing, or making whole. She says the onus is on individuals to give coherent form to experience. In a sense, each person must be an artist—whose reality is an individually collaged work o f art that is always being made and adjusted. Dissanayake's very fundamental view o f art making helps position visual creative expression in contemporary Western culture, where it is simultaneously revered and dismissed, and situates meaning making as the central purpose of contemporary art making. Furthermore, it identifies an ongoing need for meaning making (organizing and integrating experience) that would be a backdrop for specific meaning making after a disruptive event such as breast cancer. Flach (1997), a psychologist, has written about creativity and integration from another perspective. He proposes that psychopathologies may fundamentally be disorders o f the creative process. He questions the presumption that creativity and mental illness go hand in hand, and instead proposes the opposite correlation, citing studies that have shown that creativity is linked with ego strength and good coping. He provides a variety o f definitions 33 o f creativity taken from other people's work, all o f them sharing common themes, including tolerance for ambiguity and ease of movement from disintegration to reintegration. Flach's argument rests on the idea that movement from disintegration to reintegration is the crux o f creativity and o f mental health. He says creativity is triggered by disequilibrium, dissatisfaction, or dis-integration. The creative process occurs when existing mental, emotional, interpersonal, or environmental structures are disrupted and more suitable ones need to be built. In life, there is a recurring need for reintegration after disruption and, according to Flach, resilience is anything that allows the movement from disorganization to reorganization to go well. He says the essence of psychopathology is not that a disruption occurs, but how the disruption is managed, in other words, how the creative process o f moving from dis-integration to reintegration is negotiated. Flach sees psychopathology as an inadequacy o f this process. Thus, Flach proposes a preventive role for creativity and resilience relevant to any major life event that requires reintegration after disruption, including cancer. Halpern (1994), an artist and writer who has been a prominent spokesperson in the hospital arts movement, gives a spiritual and historical perspective on creative expression and health. She says answers to essential life questions have traditionally been put into artworks, and healing practices have traditionally blended art and music wi th medicine and spirituality. She gives examples o f traditional art used specifically for healing (like Navajo sand paintings) to show how contemporary healing art has roots in ancient cultures. In addition to Navajo culture, she mentions Tibetan Buddhism and medieval Christian mysticism. She claims that healing can come through art made by someone else or f rom the process o f making art oneself. The healing Halpern describes is holistic and includes body, mind, and spirit. She quotes Carl Jung on the use of mandalas to help wi th healing. Jung wrote that individual mandalas made by clients "often represent very bold attempts to see and put together apparently irreconcilable opposites, and bridge over apparently hopeless splits. Even the mere attempt in this direction usually has a healing effect" (p. 16). She also quotes Florence Nightengale on the physical healing effect o f visual beauty, particularly variety o f form and brilliancy o f colour. Halpern argues that artists have an important role to play because their artworks can move people toward healing, peace, and acceptance. She 34 claims that a lack o f spiritual connection can result in feelings o f isolation and aloneness at times o f trauma or health crisis, and that healing artists' art can counteract this. She says art can connect us to ourselves and to each other. When artists make images of their own suffering and healing, The articulation o f unspoken pain provides us wi th a sense o f recognition and the potential for release that is essential for recovery and serenity ... As we perceive and receive the abundant imagery o f the healing artist, we are brought back from our lost soul-wanderings into the map of clarity. We are brought back into the fullness o f the picture, and into the fullness o f our own lives. We are no longer lost and alone. We have found the charts to guide us homeward (p. 20). Halpern provides a comprehensive mind-body-spirit perspective that echoes Frank's (1997) view that s tory ing—in this case visual storying—is a moral act that can benefit not only the teller (artist) but also the listener (audience). Lane and Graham-Pole (1994) are co-directors o f Arts in Medicine at Shands Hospital in Gainesville, Florida, and are leaders in the hospital arts movement. Their views on art and healing relate very directly to major illnesses such as breast cancer and are rooted in two core ideas: (a) that self awareness leads to healing and (b) that everyone has the capacity to be creative. "We believe that we are all artists and that expressing ourselves through art empowers us. When we are i l l , we feel helpless, out o f control, and uncreative. Ar t and play restore us" (p. 206). They explain that their fundamental goal in providing art programs for hospital patients is to enhance patient autonomy and self-determination and to assist patients in giving voice to their values. Their approach to healing is holistic: they promote the use o f art for "enhancing and integrating our physical, mental, emotional, and spiritual well-being" (p. 205). They say art can be used for self-empowerment, for restoring a sense o f control, and for becoming aware o f the wisdom of the body. Emotions can be expressed and released in art, and energy can be discharged. The act o f externalizing painful emotions and making them into art can in itself be transformative and healing. The externalization o f the emotions gives relief and allows the person to move beyond them. Moreover, art making reveals a person's inner reality, which brings expanded consciousness and self-awareness. Lane and Graham-Pole see self-awareness as the key to health, saying 35 it leads to self-acceptance and healing o f the spirit. In this way, art is a route to self- actualization—or self-creation. Lane and Graham-Pole see the process o f art making as potentially transformative no matter what is being created. They say art has a very specific role to play in healing, in that it can be used to remake the self. Lane and Graham-Pole emphasize a concept that is central to art therapy thinking, namely that the therapeutic potential o f creative expression does not depend on the skill o f the creator or on the quality o f the creation. Samuels (1994), a physician known for his use o f visualization in medicine, is another leader in the hospital arts movement. He writes about art and healing in both spiritual and medical terms. From a spiritual point o f view, he says art is a way to open the heart to love and to "bring back traces o f the pure spirit" after travelling inward and seeing beyond physical reality (p. 66). He says the spirit or soul can speak to the body/mind through the language o f art and can tell it how to balance itself to free the body's healing energy. From a medical point o f view, he explains the mind body connection in terms o f the autonomic nervous system, hormones, and neurotransmitters, all o f which can be triggered by mental imagery to influence the body on a cellular level. However, Samuels says he prefers a model o f art and healing that includes the soul because this fits better wi th what people actually experience. "Art , prayer, and healing all come from the same source, the human soul" (p. 66). According to Samuels, the work o f the artist is "the making real, bringing to light, manifesting the sounds that are too subtle to be heard in the tumult, the singing o f the soul" (p. 72). From an unapologetically spiritual standpoint, Samuels points to practical uses o f creative expression in the context of physical illness. I present these 10 viewpoints to show the contours o f current discourse about creative expression and illness/health. Their perspectives represent prominent ideas about creative expression in relation to health and illness. Some o f these viewpoints focus on general healthful benefits o f creativity and thereby contradict the popular notion that creativity is more likely to be associated with mental illness than wi th mental health (Cropley, 1997; Csikszentmihalyi, 1996; Flach, 1997). Others focus on creative expression as a way to help with illness or with death (Aldridge, 1993; Edwards, 1993; Halpern, 1994; Lane & Graham-Pole, 1994; B. Mil ler, 1996; Samuels, 1994). B. Mi l ler emphasizes that 36 visual creative expression is a way to say the unsayable. The perspectives o f Edwards, Cropley, Csikszentmihalyi, and Flach point to creativity as a way to have resilience against illness. Samuels addresses mind/body/spirit connections, a perspective that is implicit in what many o f the others say. Both Samuels and B. Mil ler mention the benefits o f expressing and thereby externalizing feelings that are being experienced. From their different perspectives, Aldridge, Edwards, Csikszentmihalyi, and Halpern emphasize that creativity can be a way to feel potential, meaningfulness, and a sense o f fullness to life in illness and in health, and to feel a connection wi th a larger, perhaps spiritual, entity. From her ethological perspective, Dissanayake (1988) points to an idea that is common in discourse about art therapy, namely that making art is a way to integrate experiences that would otherwise seem fragmented and incoherent. Two striking themes contained in these 10 perspectives are the idea that creative expression is a way to experience autonomy and self-defmition (that may be threatened during illness) and that through making art one can achieve symbolic restitution and restoration o f the self. Visual Art by Women with Breast Cancer Visual creative expression seems to have special significance for women with breast cancer, who have made art about their cancer experiences in a way that people experiencing other life-threatening diseases have not. There have been numerous exhibitions o f breast cancer art made by women at all stages o f breast cancer, including women who were undergoing debilitating treatments while they were making art. The Art.Rage.Us travelling exhibition that was sponsored by the Breast Cancer Fund in San Francisco is one example (Art.Rage.Us, 2001). Many established artists, such as Nancy Fried, Matuschka, Susan Markisz, Jo Spence, Regina Kelley, and Hollis Sigler, have made art about their experiences wi th breast cancer. There have been breast cancer quilting projects and there are numerous books and websites wi th breast cancer art. The Breast Cancer Action Group in the US maintains a slide registry o f art made by women with breast cancer called Healing Legacies (Malchiodi, 1997). There is nothing like this tremendous outpouring for other illnesses, with the possible exception o f HIV/AIDS. This is evidence that women with breast cancer find 37 benefit in visual creative expression and are wi l l ing to give energy to it even when their energy is in short supply. In some cases, art made by women with breast cancer has an activist dimension. For example, Matuschka used photographs o f herself after a mastectomy to shape public attitudes about breast cancer. She has said she wanted to produce images o f women with mastectomies that would express power and strength rather than provoke pity. She asks: I f a man whose body has been damaged in war can be seen as strong, even sexy, why can this not also be true for a women whose body has been damaged by cancer treatment? (Malchiodi, 1997). Similarly, in the pastel drawings o f her experience of breast cancer that have been published as Breast Cancer Journal: Walking with the Ghosts of the Grand- mothers, Hollis Sigler (1993) makes the experience of breast cancer visible to the public. Her position is that for negative public reactions to breast cancer to change, women with mastectomies need to show themselves and show the world that they exist in great numbers. In an article about art and writing by women with breast cancer, Malchiodi (1997) outlines a variety o f ways art making might be useful to a woman wi th breast cancer— for example, to activate mind-body healing, to gain insight into the experience—but she focuses on the fundamental need on the part o f one who has confronted mortality to proclaim " I am here." She says creative expression is a way for people who are seriously i l l to aff irm their existence, reclaim personal power, and simultaneously create a legacy that allows their existence to be carried into the future. Artwork by women with breast cancer and these perspectives on it point to a need to affirm and to proclaim one's self and one's existence after being diagnosed with breast cancer and the power o f visual creative expression to facilitate this. Summary Literature about meaning making within a narrative framework shows the importance o f storying after a major life disruption. It suggests that breast cancer may pose particular meaning making challenges because ideas about breast cancer are embedded in complex and disempowering cultural discourses. Meaning making is seen as an interactive 38 and reciprocal process that benefits both the person who is storying and others who participate through hearing and receiving new stories that are made. This literature gives strong emotion a role in meaning making and suggests that resistance to existing meanings may be an integral part o f the process. Literature about art therapy wi th adults facing cancer contains a range o f clinical claims about the healing potential of visual creative expression, for example, that it can facilitate emotional expression, build inner strength, increase sense of control, and improve immunity. Only a few research studies have been conducted on this topic. Those that have included the perspectives o f patients have revealed potential social benefits from visual creative expression in relation to cancer. Dreifuss-Kattan (1990) provides a rare explanatory model that highlights the potential o f creative expression to bring feelings o f comfort and security and a positive sense o f self in the face o f illness or loss. In her explanatory model, a therapist or some other support person who wi l l receive what is being expressed is seen as crucial. People in related fields who have written about creative expression and health, as wel l as creative arts therapists who have written about creative arts therapies and illnesses other than cancer, have offered additional perspectives on healthful benefits o f creative expression. These include the potential o f creative expression to do the fol lowing: aid in meaning making, foster self-definition (perhaps in opposition to dominant discourses), facilitate self-restoration, promote mind-body healing, provide resilience against disease, give a reason to live, help others, and bring a sense of l iving ful ly. Artwork by women wi th breast cancer shows visual creative expression to be a way to aff irm and proclaim one's existence. It illustrates a desire to benefit not only the self w i th visual creative expression, but other women with breast cancer—by using art to resist and influence public attitudes. Taken together, these perspectives cast visual creative expression as a potentially valuable avenue for meaning making in the context of cancer that can (a) promote emotional expression o f material that is inaccessible to verbal expression, (b) provide a way to resist and perhaps change existing discourses, (c) yield visible and easily sharable manifestations o f new meanings, and (d) provide affirmation o f a unique, valuable, purposeful, self- 39 determining, and resilient self. Benefits that are not directly related to meaning making have also been claimed, including physiological benefits. There is a need for research on the under-researched topic o f visual creative expression as an avenue for psychosocial support for women with breast cancer. In order to generate new understandings that could guide the development o f art-based psychosocial support services for women with breast cancer, research is needed that focuses specifically on the experience o f breast cancer. Within the field o f psycho-oncology, it has been suggested that in order to assess the potential beneficial effects o f a psychosocial intervention, it is necessary to know not only the particulars o f the intervention, but how it is used— in recognition o f the fact that different patients w i l l engage wi th the intervention in different ways (e.g., Cunningham, 2003). A greater understanding is needed o f how women wi th breast cancer have used visual creative expression to address their psychosocial needs, including an understanding o f which, i f any, aspects have been important to them and what, i f anything, has been unhelpful. Additionally, it is necessary to identify qualities o f visual creative expression that might allow psychosocial needs to be met that could be met in other ways. The study I describe here focuses specifically on breast cancer. It was designed to produce a fine-grained view of how women with breast cancer have used not only art therapy but independent art making to address needs that arose for them after being diagnosed, and to shed light on qualities of visual creative expression that distinguish it from other avenues for psychosocial support. Independent art making is included in the study because art therapy may not be the only type o f art-based intervention that could be helpful to women with breast cancer. 40 Chapter 3: Method Theoretical Perspective Narrative research concerns itself with the process o f giving meaning to life through storying (Bruner, 1987, 1991; Cortazzi, 1999; Polkinghorne, 1988). It has been shown to be useful for investigating periods o f transition, especially wi th regard to renegotiating identities (Bruner). I t is often used to give voice to people whose voices have been absent from mainstream discourse (e.g., women) and is considered to be particularly suitable for new areas o f research (Cortazzi; Lieblich, Tuval-Mashiach, & Zilber, 1998). It is more able to accommodate ambiguity and complexity than other qualitative research approaches. Storying is considered to be an ongoing, ubiquitous, and fundamental way o f making sense o f experience, solidifying identity, and representing experience. The storying process is understood to be shaped by dominant discourses in such a way that stories and narratives that accrue from these stories reflect both personal and cultural meanings (Cortazzi, 1999; Mishler, 1986). Within this perspective, personal narratives and personal identities are indistinguishable, and meanings are seen as being simultaneously constructed, discovered, and transmitted through a dialogical process (Mishler). Events can be storied in radically different ways and narratives may have multiple purposes (Cortazzi; Riessman, 1993; Sandelowski, 1994). The events in the stories and the veracity o f the accounts are less important than the processes that yielded the stories and the meanings that are carried by them. The focus is on the way experience is interpreted, evaluated, and organized (Cortazzi; Riessman). Narrative inquiry yields socially situated interpretations that answer the question "What can it be like?" not "What is it l ike?" (Vezeau, 1994). Narrative research fit the purpose of this study well because the aim was to bring forward voices that have not been heard on a topic that I assumed would largely be about life transitions and renegotiation o f identity and that I expected would contain considerable ambiguity and complexity. It was the appropriate method to use to address the research 41 question: "How have women with breast cancer used art making and art therapy to make meaning?" It permitted a fine-grained interpretation o f accounts o f a type o f experience that is considered to be difficult to articulate (Rennie, 1992). I used a particular narrative approach that focuses on identity negotiation, cultural context, and dominant discourses (Cortazzi, 1999; Lieblich et al., 1998; Mishler, 1986). The goal was to gain insight into how and why the events the women recounted were meaningful to them within their own meaning systems. The terms story and narrative are used in different ways by different narrative researchers and are sometimes used interchangeably. I use "story" to refer to the ongoing process o f storying in people's lives, and also to refer to stories or story fragments that make up narratives. In this way, a story is the smallest narrative unit. I use "narrative" to refer to a set o f stories told by one person that are thematically related. I use "storyline" to refer a set o f narratives constructed by different people that have the same theme. Some approaches to narrative analysis focus primarily on the sequential relationship o f linguistic structure to the events referred to in narrative accounts (e.g., Labov & Waletsky, 1967), others focus on how language carries coherent meanings (e.g., Tanner), 1990), yet others focus on the functions o f narratives within their social contexts (e.g., Chase, 1996; Cortazzi, 1999; Mathieson & Barrie, 1998; Mishler, 1986; Riessman, 1993). In this study, the analysis was based on the third o f these perspectives. It is common in narrative analysis to use coherence—in the form o f linear structure, unitary rather than multidimensional subjectivity, a resolution to a problem, and a beginning, middle, and end—as a key feature o f narratives and a focal point for narrative analysis. The pattern o f privileging this kind o f coherence has been questioned by feminist researchers (e.g., Bloom, 1996; Gergen, 1997) who contend that linear coherence and concomitant unitary subjectivity are characteristic of men's stories but not o f women's stories. Systematic comparisons o f men's and women's stories support this view (e.g., Gergen & Gergen, 1993). During the analysis, I did not identify narratives according to typical patterns of narrative coherence but rather by the meanings they contained. I approached the analysis with the understanding that a person's sense o f self and o f the world is not static, rather that it is continually being created and re-created. It is a process o f doing rather than being, and, 42 especially for women, the stories made along the way may be multidimensional and may not fo l low the story patterns we have inherited through our patriarchal lineage (Bloom, 1996; Gergen, 1997; Gergen & Gergen, 1993). As I conducted the analysis, I was interested in how the women explained the things they said had happened and why these things mattered. I assumed that what each woman had said to me was true but could have been said in different and even contradictory ways at a different time or in a different context. Although I did not think I could not always know why a woman had told me one thing or another, I assumed that each woman had done more than simply recount her experience. I assumed that at any moment in the interview, a woman could have been making meaning for herself, solidifying her identity, advancing her political objectives, situating herself in relation to dominant discourses, or all o f these things—-in addition to being who she wished to be in my presence and offering me what she thought I needed. Procedures Recruitment I recruited women for the study who had experienced breast cancer and who had turned either to art therapy or independent art making after being diagnosed. For the purposes o f recruiting, I made no differentiation between "art" and "craft" or between amateur and professional or successful and unsuccessful artist. Although I initially used time since diagnosis (< 3 years) as a recruitment criterion in order to hear from women who could easily remember their experiences, this criterion was dropped early on when I found that there did not seem to be a relationship between time elapsed since diagnosis and ease o f remembering that time, and in light o f the fact that some women volunteered to participate who had had multiple diagnoses over many years. Neither stage o f disease nor type o f treatment was used as a recruitment criterion. I recruited in two metropolitan areas and their surrounding regions. One was the Vancouver area in Canada (my location); the other was the San Francisco Bay Area in the US. I chose the Vancouver area because I wanted the results o f the study to be relevant to my own community. I added the San Francisco area so the results would not be specific to 43 one area and because there have been many art and art therapy projects associated with breast cancer in the San Francisco area in recent years. Only 4 o f the 10 women who responded to the first wave o f recruiting (Vancouver area) had turned to their own art making after being diagnosed. The second wave o f recruiting (Bay Area) permitted me to be purposive in my recruiting. I added to the diversity o f the sample and also recruited women who had turned to their own art making after being diagnosed. Only 1 o f the 6 women who responded to the second wave o f recruiting had experienced art therapy. One other had extensive knowledge o f art therapy. After I had conducted the interviews with the women from the Bay Area, I interviewed one more woman in Vancouver, who spoke about art therapy only. I recruited in the fol lowing ways: (a) I placed announcements in appropriate agency newsletters and on breast cancer listserves, (b) I distributed flyers through breast cancer organizations and support groups, and (c) I asked art therapists and people involved in art or art therapy programs for women with breast cancer to give announcements or flyers to women they thought would be interested (see Appendix A for the announcement and flyer). The goal was not to find a representative sample, but to obtain a diversity o f viewpoints. Twenty-five women responded to the recruitment notices either by email or telephone. Each one responded to an announcement or flyer she had received from someone she knew. I spoke with each woman by telephone to confirm eligibility, answer questions, and possibly schedule an interview. I interviewed 18 women and did not interview the others because by the time they contacted me, I had enough material for the analysis—even after one women withdrew from the study. The woman who withdrew from the study contacted me several weeks after her interview to request that all information about her be removed from the study and that the audio recording o f her interview be erased. She gave as her reason feelings o f vulnerability related to her breast cancer. Data Collection The interviews took place either at a location o f the participant's choice (14 interviews) or by telephone (3 interviews). Although each women had the choice to be interviewed by telephone i f she preferred, the reason for the three telephone interviews 44 was geographical distance. I mailed consent forms in advance when the interveiws were by telephone and gave them to the participants to read and sign just before the interview when the interviews were in person (see Appendix B for consent form). The interviews were 1-2 hours long. I audiotaped them and afterwards reviewed the tapes, had them transcribed verbatim, and analyzed the transcriptions as described below. Although I did not suggest or request this, some o f the women showed me artwork during the interview. When a woman had art to show, we could use it in the way audiotapes o f therapy sessions have been used as a discussion framework in interviews about clients' experiences o f verbal therapy (Angus, 1992; Rennie, 1992; Wiseman, 1992). The art helped the women remember what they experienced at the time. I did not photograph any o f the artwork I was shown. In some cases, I described the work I was seeing so the descriptions would become part o f the interview transcript. I did this to help me remember what I had been shown. I did not believe it was necessary for me to see a woman's artwork to understand her stories about how art therapy and/or independent art making were important to her in relation to the experience of breast cancer. I did not wish to use artwork as verification o f or corroboration for what was said and do not believe that it would have been useful to attempt this. M y belief is that an art product provides little evidence of the significance o f the art process to the creator o f the art, especially when the art is separated from the context where it was made. The interviews were based on my invitation to each woman to tell me the story o f her experience o f art making and/or art therapy in relation to her breast cancer in whatever way she wished, so she could tell her stories in her own words in the context o f her own framework o f meaning. I phrased the invitation differently for different interviews, using the language of the conversations I had had with each woman prior to the interview. Some o f the women began by telling the story o f their breast cancer diagnoses, others did not. Some stayed close to the topic o f how art/art therapy helped them while they were experiencing cancer, some also talked about other related things. After each woman told her story, I asked for elaboration or clarification, to check my understanding and to encourage multiple perspectives that would give narrative depth. 45 To further facilitate narratives that would not conform to dominant narrative patterns, I encouraged the women to tell their stories from multiple emotional angles and I allowed for partial or conflictual stories, rather than always favouring narrative coherence and unitary subjectivity (Bloom, 1996; Mishler, 1986). I followed guidelines for narrative intreviewing: I took the stance of a learner, not an expert. I did my best to let the interviews be guided by the women's needs and interests as wel l as my own. I asked questions in a hesitating, searching way to encourage searching responses and encouraged the women to speak in their own voices (Mishler, 1986; Riessman, 1993). I assumed the women had a variety o f reasons for engaging in the interview process and that these reasons would generally be different than my own. For example, I knew I would want to extend the meanings created/expressed in the interviews beyond the interview setting, to integrate them with meanings from the other interviews, and apply them to the task o f improving or expanding services. I guessed that at least some of the women would be interested in using the interview for new storying or for advancing particular agendas related to breast cancer and art/art therapy, in addition to doing something that could potentially help other women with breast cancer (Josselson, 1996). I did my best to be respectful o f the women's stated and unstated reasons for participating rather than assuming my agenda should dominate. The research is for women with breast cancer and therefore I wanted all parts o f the research process to be helpful i f possible, including the interview process. I assumed that my background as an academic researcher, an artist, a counsellor/art therapist, and a person who has experienced illness/disability would influence the interview process—in ways that could be invisible to me. Immediately after each interview, I wrote interview notes in the form of narrative descriptions o f what had occurred, including: things that had been said before and after the interview that were not on the audiotape, information about the social context o f the interview, and aspects o f the encounter that were surprising or otherwise noteworthy. Analysis There were two goals for the analysis: (a) to create a synthesis o f what the women had said as a group about art making and art therapy in relation to breast cancer and 46 (b) to create meaningful representations o f what the individual women meant by what they said. To achieve the first o f these, I conducted analyses o f categorical content (specific topics mentioned) and holistic content (overall meaning) for each interview (Lieblich et al., 1998) and used this process to identify four major storylines and two minor themes that together represent the totality o f what the 17 women presented as important. The results o f this part o f the analysis are presented in Chapter 5 as thematic overviews for each storyline and minor theme. To achieve the second goal, I further analyzed 10 exemplar narratives for their narrative structure and for their meaning in relation to the women's expressed beliefs about themselves, breast cancer, breast cancer treatment, and healing (Agar & Hobbs, 1982; Frank, 2002a; Mishler, 1986; Riessman, 1993). In Chapter 5, these 10 exemplars are discussed in relation to the four storylines. In order to adequately include all the women's voices, excerpts from the other 7 women's narratives are incorporated into the thematic overviews. I began the analysis by reviewing each tape soon after the interview and wri t ing my initial impressions. The tapes were then transcribed verbatim, including repetitions, non- words, incomplete utterances, pauses, and affective expressions, using guidelines described by Morse and Field (1995). The transcriptions were done by professional transcriptionists. I understood the transcriptions to be interpretations o f the interviews, not an equivalent o f the spoken dialogue, and saw the spoken words as only one component o f the dialogue. I kept the transcripts in ful l verbatim form throughout the analysis process. When the analysis was complete, 7 o f the participants requested that I remove words such as " u m " and "you know" from the quotations I used from their interviews, arguing that verbatim quotations in print give a misleading and embarrassing impression o f spoken dialogue, because it is not customary to read unedited verbatim quotations. I accepted this argument and removed these kinds o f words, as well as some repeated words, from all the quotations I used to present the findings when I judged I could do this without radically changing the meaning o f what was said. I checked each transcript against the audiotape, made corrections as necessary, and added my interview notes to the transcripts. The resulting texts were what I used for the rest o f the analysis. The analysis proceeded in four stages, that I have called "readings." 47 I began the analysis after completing the first three interviews and proceeded wi th it in an iterative fashion as I continued conducting interviews. Throughout the interview/analysis process, I made memos about my emerging understandings and how they changed as the process unfolded. Most o f the changes in my understanding were minor. The biggest change was my recognition during the third readings that I had been assuming a greater degree o f personal diminishment caused by cancer than the narratives indicated and that in this way I had been unwittingly buying into a discourse o f illness and powerlessness. This insight facilitated the subsequent analysis and allowed a clearer understanding o f the women's stories. First Readings: General Impressions, Metaphors, and First Content Analysis I read paper copies o f the transcriptions to get a general impression o f the holistic content o f each interview and to develop a central metaphor for each one. As best I could, I read wi th empathy and an open mind. Examples o f the central metaphors I used were: " f inding self-love," "lightening her load," "piecing it back together," and "a more me, me." As I read, I made note o f striking features about each woman's stories and any apparent contradictions (Lieblich et al., 1998). I then pulled out everything each woman said about how art making or art therapy had helped her and put these in a list. I let the results o f this rough analysis o f categorical content fall into categories and then into a model, to help me keep the totality o f what the women had said in my mind. The model was for my convenience only. I made successive versions of the model as I tried to get a clear view of what I was hearing and what was important. The elements o f the model after I had read eight o f the texts were: "refuge," "clearer view," "new strength," "new self/life," and "helping others." These changed as I did more interviews. Initially the model gave me the impression that the elements might lead to or from each other, for example, that "refuge" might be a necessary precursor to "clearer view." As the analysis proceeded, I saw less evidence for sequential elements in the model and more evidence that the elements could stand alone. The process o f trying to make a dynamic model helped me dig more deeply into myself to understand what had been said. It helped me identify things I was not confident I understood that needed to be reread and reconsidered. As this provisional model emerged, 48 I made a chart to keep track o f which parts o f it were contained in which interviews. Additionally, I wrote a synopsis o f each interview (Lieblich et al., 1998). These first readings helped me identify what should be included in the next stages o f the analysis (Chase, 1996; Riessman, 1993). I decided to include stories about using art/art therapy for coming to terms, accepting, developing/discovering a satisfactory new sense of self and world, and gaining/regaining a sense of purpose. I did not include my impressions o f the women's artwork in my analysis. I found that although the art may have helped the women remember what they had experienced, it did not do much to help me understand what they experienced. One reason for this was that often the women let the art speak for itself, showing it to me as i f it could tell me more than it could. Second Readings: Context, Coding, and Narrative Questions To prepare for an in-depth narrative analysis, I pulled out all the information I could f ind in each transcript about the woman's personal and cultural context, and her motivations for participating in the study. I made notes on the transcripts about the interview context and the dynamics o f the conversation, for example, who was leading the conversation and how this changed during the course of the interview (Mishler, 1986). I coded each transcript using codes derived from my provisional model. Some o f the codes were: "REFUGE - art/art therapy as a refuge," "CV - getting a clearer view," "MS - using more o f the self," "NEWSS - new sense of self," " N - negative experiences wi th art therapy," and " D D - defying death." I added more codes as I did more interviews and adjusted those I started with. I then asked four questions about each interview to help bring the context information to bear on my understanding the narratives. These were: 1. How does the story differ from the expected? 2. Is the story typical o f a group? 3. What larger social narratives are represented? 4. Are these narratives accepted or rejected? (Frank, 2002a) 49 Third Readings: Identifying Narratives, Recoding, Writing Interview Narratives. Up to this point, I had been concerned with my own understanding of what the women had told me. From the third readings on, I concerned myself with creating a representation of my analysis and my understandings that would be useful to others. I switched from paper to electronic versions of the texts. In order to keep the texts intact, I used colour coding for the next steps. I identified in green the parts of each interview that contained stories relevant to the research topic. Within these text segments, I identified in red everything each woman said about (a) why she started art making and/or art therapy when she had breast cancer and (b) how art making and/or art therapy helped or did not help. I transferred notes from the paper copies to the electronic versions and in the process compared my init ial and later impressions and understandings of each interview. Where there were discrepancies, I reread and reconsidered the text. I recoded the relevant segments of the texts using a refined version of my initial coding scheme. I highlighted in yellow all segments of the text I was not sure I understood or I thought required special attention. The following text segment illustrates my coding methods at this stage. I adjusted the codes as the analysis proceeded. And I tried so hard to get my emotions under control but I just.. .1 just sobbed and sobbed. And I hated myself. I hated myself that I'd cried in front of these people and I left there and I thought, I 'm never going back to that again. I cannot go back. And I didn't. I never did go back, which was my loss. But the funny thing is I did feel better afterwards (laugh) (R: laugh) because I had gotten out an incredible amount of emotion. So, months later when this diagnosis was handed to me, all that came back to me again, and I thought... I just freely.. .1 was just absolutely... in despair that I wouldn't get to see this little grandchild, that I wouldn't see my children married. And I thought... I have to leave something for them. I have to make something that.. .that they'll never know their grandmother but that they have.. .there has to be something that can be given to them. D D And, um.. . so I... I.. .1 actually made two.. .two, um.. . children's quilts and a quilt for my daughter for when she became engaged. And that's the only time when I've quilted that I cried. And I sobbed. I sat and cried the whole time I made these quilts. But I still rJhink it was something I needed to do and, i f the diagnosis had ended up being true, I think at that point I would've been able to cope with it and.. .and would've done my best to make the next nine months to a year more positive. CV? NEWSS But I...1 was in that.. .in that limbo stage of . . .of feeling that it 50 was true but not knowing for sure and I had to do something to get me through that time, and so quilt ing to me was.. .was the only thing I could do. And it would leave a legacy if.. . i f it did turn out to be true it would leave a legacy for the.. .the... grandchildren that are already loved (laugh) but I would never know and that they wouldn't know me. And. um.. . so I.. .1. . . I can't say that it was a happy time, but it was something that helped me get through that month, and um.. . i t . . . i t . . .it, um... i t gave me a sense of . . .of at least doing something positive.. .at that point in my life. [Sarah] Once the texts were coded this way, I could follow each theme through the text and note transitions between themes, the context for each theme, and the relative salience of each one in the text. I wrote new narrative synopses of each interview, incorporating into each one the original synopsis, my interview notes, the answers to the four questions about cultural context, and my notes about both the women's personal contexts and the interview contexts. I wrote these as first person narratives so I could include myself and my experience of each interview, and thereby l ink the interview context to each woman's narratives. Fourth Readings: Storylines and Exemplars The fourth readings coincided with writ ing up the results. To complete the analysis o f categorical content (what the women said), I categorized the coded segments of the interviews into storylines that represented what the women as a group said about how art/art therapy helped or did not help and why this mattered. Each storyline was present in multiple interviews. There was enough diversity in the women's narratives that no storyline was represented in all the interviews, but each appeared in at least 10. One was present in 16 of the 17 interviews. Twelve of the interviews contained at least three of the four storylines. Two interviews contained only one. I wrote a thematic overview of each storyline based on excerpts from individual narratives on that theme. The thematic overviews of the storylines and minor themes represent what the women said as a group. To complete the narrative analysis of meanings (how the things the women said mattered to them), I chose one or more exemplar narratives for each storyline. I analyzed these in detail based on narrative structure, rhetorical devices, comparisons with other narratives, and the women's stated beliefs about themselves, breast cancer, breast cancer treatment and healing (Agar & Hobbs, 1982). I present the exemplars as excerpts from the particular woman's narrative on the 51 theme o f the storyline in question. In some cases, the excerpts are taken from many parts o f an interview, in others from just one part. The excerpts show the development o f the storyline within that woman's narrative. Each exemplar narrative is introduced with information about the woman's personal context, the interview context, and rhetorical devices the woman used. The presentation o f each exemplar narrative is followed by a discussion o f its meanings in relation to the woman's stated beliefs about herself, breast cancer, breast cancer treatment and/or healing. This holds each narrative within the woman's own structure o f meaning and makes it possible to show how and why the things recounted in the narratives mattered to the women. Where it seemed helpful, I compared and contrasted exemplar narratives wi th each other to further elucidate their meanings (Mishler, 1986). Ethical Considerations Confidentiality Participation in the study was completely voluntary and the women were free to withdraw at any time (one did) and to request that the tape be stopped during an interview (one did). I provided confidentiality and privacy. I protected the identities o f the women by removing identifying information from the transcripts and analysis, not revealing to others the names o f the women who participated in the study, and using pseudonyms in reporting the results. During the analysis, I was aware that I was handling sensitive material and that it would be hard to conceal identities while keeping the narratives intact and while discussing them in relation to the participants' personal contexts. Therefore, as I chose quotes to illustrate the storylines and minor themes, I avoided using quotes containing indications o f identity, and concealed identity where I thought is was necessary. A l l third party identities (e.g., physicians and family members) were also concealed. The audiotapes and all paper copies o f the transcription texts were kept in locked f i l ing cabinets. The hard drives o f the computers used for the analysis were password-protected. 52 Therapeutic Interviews Some narrative researchers claim that the interview process can be therapeutic for participants—that life contains very few opportunities to story in a deliberate and focused way in the presence o f a wi l l ing listener who is intent on understanding and who is giving importance to the storying process (Bar-On, 1996; M. Mil ler, 1996; Sandelowski, 1994; Vezeau, 1994). Some researchers have argued that narrative interviewing is quintessentially ethical because it provides an open dialogical framework for meaning making and increasing self-awareness on the part o f the participants (e.g., M. Mil ler, 1996). Others have argued the opposite and have said that an interview that is therapeutic is intrinsically hazardous because is does not have the clear boundaries and protections that normally delineate therapy (Bar-On, 1996). Although confidentiality is promised and informed consent is given, some say complete confidentiality is unlikely and no amount o f information can prepare participants for everything that may happen when they share sensitive parts o f themselves for public use (Chase, 1996). Even with the cloak o f anonymity, it is more likely in narrative research—where participants' stories are kept as intact as possible—than in other kinds o f research that participants and those who know them wi l l be able to recognize the stories. I t is impossible to tell participants in advance how their stories wi l l be used. M y stance was that the women should use the interaction as they wanted but that I would not assume or encourage therapy, my training as a counsellor and art therapist notwithstanding. I agree wi th Crossley (1999) who has argued that cultural stories o f illness are often based on the idea o f a minimal (powerless) self that needs to be reconstituted and improved, and that promoting therapeutic storying after illness reinforces a repressive assumption that a recovering self needs to be corrected. I did not want to reinforce this assumption. Public Meanings Although meanings are created collaboratively and dynamically in the narrative interviewing process, the researcher creates the final interpretation and cements it by making it public. The static written report may contain meanings that were only temporarily true while when they were spoken (Josselson, 1996), and, because it contains a synthesis of a number o f interviews, the report may not give importance to the parts o f a participant's story that were most significant to her. Thus, a participant could feel that her story and identity 53 have been seized and controlled. This would be the opposite o f my intention as a researcher, because I wish my research to be in the service o f each participant's freedom and agency as well as for the public good. These problems can be somewhat alleviated through collaborative analysis, i f collaborative analysis is feasible and appropriate. (It was neither feasible nor appropriate for this study). However, I agree with Chase (1996) that the issues o f temporary meanings and narrative synthesis cannot be completely avoided and that a narrative researcher must be wi l l ing to accept responsibility for the interpretive act represented by research. Rigor In qualitative research, data and analyses are understood to be systematic interpretations o f subjective experience generated in the context o f social and cultural discourses (other discourses would yield other interpretations o f the same experiences). Analyses o f qualitative data reveal both experiences and discourses. The guidelines used to ensure and evaluate methodological rigor in qualitative research vary according to the type o f knowledge a study is meant to generate (Sandelowski, 1993). In this study, a process o f verification was built into the study to ensure validity and reliability. The procedures were methodologically coherent with the research question. The analysis was iterative in that the data collection and the analysis happened concurrently and the fit between the data and the emerging understandings was repeatedly checked. The categorization schemes were revised as the analysis proceeded, moving toward a more robust interpretation and a more complete representation o f the data with each revision. Negative cases were identified and examined. The analysis was driven by theoretical thinking, which is to say that ideas emerging from the data were confirmed with new data, which in turn yielded new ideas that were confirmed against the data already considered (Morse, Barrett, Mayan, Olson, & Spiers, 2002). Addit ionally, the criteria o f plausibility, coherence, correspondence, and pragmatic use were applied, as explained below (Riessman, 1993). Plausibility, or persuasiveness, is the extent to which the interpretation seems reasonable in relation to the discourse o f the receiving audience. The primary beneficiaries for this study are women with breast cancer. Other audiences are art therapists and other 54 helping professionals, program developers, and researchers interested in visual creative expression and breast cancer. To maximize plausibility, (a) I based my interpretations on the women's words and my understanding o f their structures of meaning, (b) I repeatedly checked my understandings against the interview texts, (c) I examined negative cases that did not conform with emerging understandings, (d) I explored alternative interpretations, and (e) I reported the results in plain language for a mixed audience. I enhanced plausibility by providing numerous quotations from the interviews and by describing the results clearly and succinctly as an indication o f a thorough analysis (Lieblich et al., 1998; Riessman, 1993). Internal coherence refers to the absence of logical inconsistencies or unexplained coincidences that may indicate an incomplete analysis. I t also refers to the ways in which the thematic analysis is congruent with the apparent goals o f the research participants during the interviews. The internal coherence of the study was strengthened by linking understandings wi th the women's apparent intentions and modifying initial understandings accordingly (McLeod, 2001; Riessman, 1993). External coherence refers to how the analysis fits with accepted theories. I demonstrated this by describing how the findings fit and do not fit wi th existing theories and assumptions (McLeod, 2001). Correspondence refers to how accurately the research report represents what the participants said and meant. In addition to the strategies already mentioned, correspondence was ensured by doing a "member check." I mailed a synopsis o f the results to each participant together with my description o f her for her feedback. The purpose of the member check was not to determine i f the research interpretation accurately represented what the women experienced, but rather to determine i f they and their stories were well represented. Sixteen o f the 17 women responded. Some provided their feedback by email; I spoke to others by telephone. A l l o f the women who responded found the synopsis o f the results to be satisfactory. Five women found my descriptions o f them to be satisfactory; the others requested that I make changes. I made all the changes that were requested. They ranged from requests for different pseudonyms to factual corrections to conceptual clarifications. As mentioned above, 7 women objected to my use o f verbatim transcription in quotations from the interviews. They said they were embarrassed or humiliated by the presence of words such as " u m " and "you know" that they said gave the impression that they were inarticulate 55 or could not express themselves well. I removed from the quotations I use to present the findings all "urns," "ahs," and "you knows" that could be deleted without affecting the meaning o f what was said, as well as some repeated words—whether the particular woman had requested it or not. Pragmatic use refers to the usefulness of the study. The research topic was chosen in response to identified theoretical and clinical needs after extensive consultation wi th people in both the community and the academy. To help make the research usable by others, I wrote detailed and clear descriptions o f how I arrived at the results and of the social and conceptual context o f the study, including: (a) background information about the participants, (b) information about the social contexts o f the interviews, and (c) information about beliefs and assumptions o f mine that shape my interpretations (I kept track o f how my beliefs and assumptions changed while conducting the study) (Cortazzi, 1999; McLeod, 2001; Mishler, 1986; Riessman, 1993; Vezeau, 1994). Additionally, I did my best to describe the study clearly, making sure to define any specialized terms (McLeod). The study is descriptive and interpretive. The transferability o f the findings has been enhanced by interpreting the results in terms of abstract concepts (Morse, 1997). The primary d a t a — the transcripts o f the interviews—are available for others to examine. Summary The participants in this narrative study were women wi th breast cancer f rom Canada and the US who had turned to art therapy, independent art making, or both after their diagnoses. The 17 women who participated were interviewed according to guidelines for narrative research. The interview transcripts were analyzed for content and meaning through four readings. The readings culminated in a detailed analysis o f 10 exemplar narratives that provide a comprehensive description of the four storylines and two minor themes that emerged from the analysis. Ethical considerations included not only informed consent and the provision o f confidentiality and privacy, but attention to issues related to narrative interviewing as a therapeutic process and public versus private meanings. Methodological rigor was ensured 56 by building a verification process into the study and by conducting the study to ensure plausibility, internal and external coherence, correspondence, and pragmatic use. 57 Chapter 4: The Participants Seventeen women participated in the study. Eleven were l iving in or near Vancouver, British Columbia, and 6 were l iving near San Francisco, California. Two o f the women l iving in Vancouver had emigrated to Canada from Europe and one had emigrated from Australia. Ten women talked about their experiences with art therapy and 10 talked about their own art making (3 talked about both). A l l o f the women who talked about their art therapy experiences had received some group or individual art therapy free o f charge as part o f their cancer treatment or as part o f a research project. Three had also paid for private art therapy. Nine o f the women had little or no experience with art making or art therapy prior to their diagnoses. Five were amateur or professional artists prior to their diagnoses and still were at the time o f the interviews. Seven of the women with no previous experience had decided to continue on wi th visual creative expression in some way. For 3 o f these women, art making had become a central activity in their lives. Thus, there was a range o f experience and skill levels among the 17 women. A t the time o f the interviews, the women's ages ranged from 37 to 82. Their ages at the time o f their initial diagnoses ranged from 32 to 75. Six were under the age o f 45 when they were diagnosed, 9 were between 45 and 66, and 2 were over 60. A t least 4 o f the women had serious financial difficulties as a result o f breast cancer. Ten mentioned that they had children. Eight mentioned that they were l iving on their own at the time o f their interviews. Four had persistent or recurrent breast cancer, 1 was not expecting to live much longer, and 9 presented themselves as survivors and talked about breast cancer in the past tense. Five mentioned immediate relatives who had experienced breast cancer. I gave each woman a pseudonym and at the time o f the member check asked each woman i f she would prefer a different pseudonym. Two women asked for different names and one chose to have her real name used rather than a pseudonym. What follows are brief introductions to each woman that include information about each woman's personal context and the context o f my interview with her, as well as some of the main ideas contained in the 58 stories she told. These introductions provide context for the quotations and exemplars that are used to present the results o f the study in the following chapter, and can be referred to while reading that chapter. A l l quotations from the interviews are in italics to indicate the voices o f the women. Words that were spoken loudly for emphasis are in boldface. Annie Annie's story was long and complex. She had cancer three times over a period o f 17 years. She was diagnosed wi th cervical cancer first and subsequently with breast cancer 6 years before the interview and again within a year of the interview. Her father died when her mother had breast cancer. Annie lost a job that meant a lot to her when she was first diagnosed wi th breast cancer. Wi th no income and the frustration o f losing a job she knew she was good at, she said, "I'd cry for 2 or 3 hours and I couldn't stop. Everything made me cry." She experienced great financial challenges at that time, but now owns and operates her own company. When I arrived at her house for the interview, Annie offered me homemade turkey soup and talked about growing her own organic food. During the interview, she sat wi th her knees drawn up, perched in the corner o f her sofa like a bird as I listened from the other side o f the coffee table. She spoke with authority, an old hand at cancer. Her comments were pointed, rather than searching and reflective, and were often coloured wi th irony. Annie had used a variety o f forms of alternative healing, including bodywork, counselling, nutrition, and music therapy. It seemed that her reaction to cancer was to take things into her own hands as much as possible. She started art therapy at the cancer hospital at the time o f her first breast cancer diagnosis and art therapy groups were still an important feature in her life when I met her. She said art therapy gave her comfort, encouragement, and support and that she used it as the way to find out what she needed to know. The art therapy is enabling me to peel off the layers so that I can see what it is that causes my whole being to be... pre-disposed to dis-ease. And if I can do that, maybe I won't have to face another diagnosis. Or, if I can do that and I do have to face another diagnosis, it won't be as difficult. If it metastasizes or whatever, I'll be able to incorporate that as part of my life and accept that it's part of my life and it has to be... dealt with without, you know, despair. [Annie] 59 Annie said art therapy gave her a way to settle down enough to be with herself and her contemplations. She said the sense of unpremeditated possibility opened the way for new perspectives and gave her an opportunity she otherwise would not have to make meaning. Above all, Annie said art therapy was helpful because it was how she learned to love herself wi th the cancer. She said, The ability to start loving yourself and caring about yourself whether your life is going to be very long or very short... It's kind of a neat thing... If you love yourself then you 're not depending on other people, are you? You 're self sufficient. [Annie] Annie showed me examples o f artwork she had made in art therapy groups to illustrate how she came to appreciate herself as valuable and creative through her depictions o f herself. Hilda When I arrived at Hilda's home for the interview, I was struck by the warmth and comfort o f the place. She was a semi-retired counsellor/play therapist. She said she responded to my recruiting f lyer—that she received through the "Abreast in a Boat" Dragon Boat team network—because she understood that it can be difficult to get participants for research studies. Hilda had been diagnosed with breast cancer 4 years previously. She was single (divorced) and made no mention o f financial difficulties as a result o f cancer. She had surgery and chemotherapy, and also used alternative healing methods, such as nutrition and meditation. She had weekly art therapy sessions for a few months during her chemotherapy. She said she wanted therapy for extra emotional support and to clear away diff icult feelings related to a family member, and chose art therapy based on her previous knowledge o f it. I heard about it and decided that it would be a good idea because previous to being diagnosed with breast cancer, I had some issues that I knew were still there and I thought ... just having extra support would be a good idea when you 're going through ...a really invasive medical treatment. [Hilda] 60 Hilda's view was that emotional health is as important as physical health and that illness is a product o f emotions. She said art therapy was an integral part o f her cancer treatment and would have liked to have more, but was told she had to stop after a certain number o f sessions. She had no previous art experience. Hilda was open in discussing her experience with art therapy—something she said she had not thought about in 3 years. There were quite a few things she tried to remember but could not. She did not keep her art therapy artwork and did not seem to have a burning need to tell her story. Rather, it seemed that she wanted to provide me wi th something o f value for my research. She said art therapy seemed natural and easy to her even though she did not have previous art experience. She said she would leave each session feeling very light after releasing painful feelings. Hilda said she made a point o f letting the art therapy happen without directing it, but that she always felt in control and that this mixture of freedom in control was therapeutic. When I asked her how art therapy helped her work through her feelings, she said that seeing the visual evidence of the expression o f one's experience forces one to "face" things, and brings one to acceptance. She said the benefits of art therapy came through making—expressing herself without thinking, using a different part of herself—not talking wi th the therapist, but that the validation from the therapist was important. . Donna Donna and I met at a community centre near her home. She seemed pleased to have an opportunity to share her thoughts with me and talked freely without being prompted. I was struck by her exuberant positive attitude and the urgency o f her speech. She found out about my research through the Abreast in a Boat Dragon Boat team. She indicated that she wanted to be interviewed to help keep the art therapy program she participated in from being eliminated during a time o f healthcare cut-backs. She talked about breast cancer experience in the past tense, and about healing, strengthening, and embracing creativity in the present tense. Donna's story was set against the backdrop of her older sister having died o f breast cancer at age 39. She herself had been diagnosed with breast cancer 2 years previously. 61 ...It was an absolutely devastating diagnosis for me, because my sister had been diagnosed 20 years ago and had died 17 years ago and I had never thought that I would get cancer. I just had no worry about it whatsoever. So when it turned out to be that, it just brought back... my sister's death, much more so than my own life-or-death situation. ... So, it was an incredibly emotional diagnosis for me... on top of the cancer. [Donna] Donna said she did not want to have surgery because o f how surgery debilitated her sister, but did eventually agree to a mastectomy with immediate reconstruction followed by chemotherapy. She said she started group art therapy 2 weeks after her first chemotherapy treatment. She latched onto it quickly because it gave her comfort and respite from thinking about cancer. "It turned out to be one of the most wonderful things that happened to me. It was the first time in 2 months that I didn't think of the cancer. ...It was the first time that the nightmare had stopped." She said she felt comforted and strengthened by the group support. She said the "power" o f the other people, people with cancer and their supporters, transferred to her. She said art therapy helped her regain her faith in life and God, and helped her see that there is beauty in the ugly, and that beauty is always right there. " . . .things like the sea and the shore and flowers in gardens and people and all the things that I really like in my life, and it made me realize...that it's there all the time." Donna said the emotional dimension is important to cancer care. She said she did meditation and journal writ ing during her treatments. In addition to the group art therapy that was provided at no cost at the hospital, she had some individual art therapy sessions that she paid for privately, to try to resolve some long-standing family issues. She said this did not go well (she blamed the lack o f skill o f the therapist-in-training) because it stirred things up without resolving them and left her exhausted. Her conclusion was that art therapy can either be a way to confront pain, which is important but t ir ing, or a comforting refuge that is strengthening, and that she could decide which one she needed at a given time. Toward the end o f the interview, Donna said creativity, especially journaling and photography, had become an important part o f her life. She seemed very alive and excited when she talked about this. 62 Sarah At the time o f the interview, Sarah was active in the breast cancer community and was on the Abreast in a Boat Dragon Boat team, which is how she found out about my study. When I arrived at her house, she offered me a tour o f the quilts she had made since her breast cancer diagnosis 4 years previously. She had made many, many quilts since that t ime—qui l ts that were exquisite, expert, neat, complex, fairly traditional in most cases, and very personalized. They were piled in various places around her house as well as on beds, on the walls, and draped over furniture. Sarah explained that many of them marked turning points in her life since her diagnosis. I was bowled over by the quilts and the time and attention they represented, and said so. It was a cold and rainy day, which was a reason to ask i f I could wrap myself in one o f her quilts while we talked. During the interview, Sarah looked away from me most o f the time, especially while constructing her story. She looked at me at key emotional or evaluative moments. Sarah said her reaction to her diagnosis was to be brave and push her emotions underground—while carrying a lot o f anxiety. She had been quilting a bit prior to her diagnosis, and started quilting in earnest during her chemotherapy treatments. She said quilting quelled her fear and deepened her emotions. It immediately brought her serenity and peace, as well as pleasure, and soon let her see that cancer had not robbed her o f her l ife: ...a few months ago ...I wouldn 't have had the patience to... play with these little tiny scraps offabric and sew hundreds (laugh) of little pieces offabric that I'd cut up back into something that was, you know, that was a quilt. It was really encouraging to me. It made me feel ... like I... could do something—that perhaps breast cancer hadn 't... taken everything from me. [Sarah] Sarah said the first quilt she designed herself helped her grieve at a time when she was responding to the news that a second lump had been found. Later, she saw that her quilts had become a mirror for her growth and transformation: "As my life becomes more joyful, so do my quilts." When her treatments were over, Sarah continued to quilt, and watched as her quilting brought other benefits. She said her life came to have more meaning as her emotions 63 deepened and she could see how to make something positive from them and that her creativity blossomed into a confidence she never expected to have. She became a community advocate for women with breast cancer with a commitment to helping other women wi th breast cancer benefit from quilting and personal expression. She said she was doing things she never thought she would do, like speaking in public. She had organized group quilting projects for women with breast cancer to make quilts to hang in hospitals where women with breast cancer receive treatment. Bonnie The morning o f our interview, Bonnie had been photographed for a conference presentation about art therapy and cancer. When I arrived at her apartment, she came down to greet me and show me where to park. Throughout the interview, she seemed eager to tell the story o f how art therapy helped her through breast cancer. She said she thinks an art therapist is more important than an oncologist. She was planning to write a letter to the head o f the cancer hospital to say art therapy services should not be cut. Bonnie had been diagnosed with breast cancer about a year previously, only a few years after moving across the country to take a new job. She was l iving alone. She stopped working after her diagnosis and experienced some financial strain. She said the diagnosis came as a shock because the tumour was large even though a mammogram done less than a year previously had revealed nothing. A painful lump she had found herself was not given immediate attention. Her story was set against a backdrop of a previous bad experience with the medical world that resulted in her being mistrustful o f medical people—who, she said, should give patients emotional support and understanding. She said it was unacceptable to her not to have concern shown to her by physicians and to have her feelings dismissed. ...I'm not enamoured with ...the medical profession and so all this ...all these memories kept...were coming back when I was having the ultrasound ...Then I was referred to the cancer agency for, ah, treatment, and that didn't get off to a good start because, the oncologist... at one point I started, you know, started to cry because it was so emotional and she basically told me to get a grip on myself... There was no room for any discussion offeelings or fears and that bothered me a lot ... You 're supposed to be able to talk to [your doctor] about how you 're feeling. But...there was no time for anything like 64 that. The fears, because there are fears... And, I mean, although many questions are un... remain unanswered and will never be answered, I still think there should have been a little concern shown to me. And that's what...made the art therapy and the other...ah, therapeutic touch so important. [Bonnie] Bonnie began individual art therapy a few months after her diagnosis and continued to be involved with the free art therapy program at the cancer hospital after her treatment ended, including some group art therapy offered through a post-treatment program. She had no previous art experience. What she said about art therapy was very fresh in her mind. She said it was a "godsend'1 because it gave her a safe, non-judgmental place to express herself, be heard and supported, to explore her feelings, and to get a clearer view o f what she was experiencing. The story she told was about how this emotional support helped her to reduce her fear and claim herself within a medical world that seemed to expect patients to be passive, powerless, and nameless—and also to reclaim a sense o f a future. Again and again during the interview, she described how important it was to have a place where she could be herself, where she had permission to spend time exploring and expressing herself, and where her feelings were not dismissed. She used the word "expression" frequently as she told her story. Bonnie showed me her art therapy artwork as we talked. The art activities she described included: drawing her feelings, working with the drawings to overcome fears, making a "self box" depicting the inner and outer selves, and envisioning a future. She told a secondary story about the awakening o f her spontaneity and creativity. She said not only had she learned to live again through art therapy, but she was bolder and more creative in all aspects o f her life. She said it was important to have a creative outlet and something that was "from me coming out"—but she attributed the therapeutic benefits she received primarily to her interaction with the art therapist. Meredith Meredith and I met in her downtown apartment, which was painted in interesting colours and had a stunning view. She talked for about an hour before I turned on the tape recorder—about her apartment, her move from the other side o f the country, and the many 65 places she has lived. Meredith stood during the interview. She moved around as she spoke and delivered her comments in a performative way, speaking with expertise on art therapy and the transformative power o f archetypal imagery. She kept close eye contact with me as she did this and talked at length without prompts from me. At the end of the interview she said one o f the reasons she wanted to be interviewed was that she thought I might be able to help her wi th a project she wanted to undertake as she launched a career in the arts. Meredith was diagnosed with breast cancer a year and a half before the interview and had surgery and chemotherapy, but refused radiation. She had been married but had no children. She said she had been l iving on her savings since her diagnosis. She said a key turning point in her life was her decision as a senior in high school to choose Chinese over calculus. Her father's death (about 25 years previous to our interview) was another major turning point that led her to become involved in Christian theology and to 30 years o f work in the China/intercultural field. A t the time of her diagnosis, Meredith said she had been seeing an art therapist privately for about a year and a half to.work through difficulties related to a different major illness as well as professional and cultural issues. She had just returned from working in China. She said she had a lot to process and "for me the only way to really process that kind of thing is through drawing." She said she stopped seeing this art therapist shortly after her diagnosis because I was getting very, sort of out there in terms of the anxiety and that kind of thing, and it... seemed to become evident she couldn't go there with me... She couldn't deal with it, which was quite upsetting. [Meredith] She subsequently had a few sessions o f art therapy at the cancer hospital, but she said her primary art and healing experiences after her breast cancer diagnosis were in mask- making and theatre workshops where she could use her body, expand beyond her individual self, and connect wi th the archetypal energies that would "pull her through" the cancer experience. " . . .just this wonderful healing and expressive and creative energy. And I knew from the start that's what I needed to get through." She said she needed things that would take her beyond herself and keep her from collapsing in on herself. She also joined the Abreast in a Boat Dragon Boat team and did daily journaling. 66 Meredith had extensive personal and academic experience with psychology (especially Jungian psychology), therapy, mythology, and theology. She had been a long time believer in the healing power o f art and clearly was steeped in beliefs in the transformative power o f image and archetypes. She said, ' 7 don't have any question about the... heal ing nature of... of image." Heather Heather and I met at her house—a beautiful house surrounded by tall trees that she, w i th sadness, was going to be showing to a prospective buyer later that day. She offered me tea and had art ready to show me that she had made in art therapy. Heather had been diagnosed with breast cancer about a year previously. She had been working in the business world at the time. She was a divorced mother o f grown-up children. She said her breast cancer had been a profound spiritual event that came on the heels o f two other life-threatening events in the previous 2 years. She said she was in counselling at the time o f her diagnosis. She had art therapy sessions at the cancer hospital (at no cost) and also at a private healing centre—where she found the cost unacceptable. In addition to art therapy, she said she did relaxation, music therapy, and many other things to help herself heal. She began art therapy after surgery while waiting for radiation. The experience seemed fresh in her mind. Heather told her story by showing me her art therapy artworks in order, telling the story o f each one. She made eye contact wi th me about half the time as she did this. She was expressive with her gestures as well as with her words. For example, when she was talking about a box she had made, she held it reverently in front o f her with both hands as she tried to remember the difficult thing she was experiencing at the time. It was as i f she were holding something alive. I was struck by the depth o f her expression and the bold power o f her art. She said she had no art experience prior to starting art therapy. As she showed her artworks, I described each one out loud for the tape recording. Heather said she was attracted to art therapy because breast cancer was a primal experience that needed a non-verbal form of expression. 67 ... It's on a cellular level. It's really at your, almost, your most basic level of existence. And it was very much a spiritual journey for me, and what Ifound was that I was almost inarticulate. I couldn't express verbally the experiences that I was having; the fear and the... anger and the despair and the feelings that I was feeling about having this cancer after having survived two other very serious events. [Heather] Heather said she had a revelatory experience with art therapy right away and therefore continued wi th it. The revelation was that she could take something horrible, that was linked to previous sexual trauma, and through art turn it into something absolutely beautiful. It was an absolutely amazing experience to just, through this act of doing this art, I turned something that was absolute shit into something that was absolutely beautiful and it was amaz... it was an extremely good process. ...I think my healing through art started at that moment. [Heather] Heather described her art and healing process in detail, paying close attention to chronology. Childhood sexual abuse was woven into the fabric o f her story. The feeling o f safe haven wi th complete freedom from judgment was a pivotal aspect o f art therapy for her. She said it gave her the freedom to trust the process and herself, which was "freeing" for her and made it possible for unexpressed material to come forward. "When you can just not care at all what you produce and just tap into the process, then all this unconscious stuff comes into whatever you do produce." To explain how it helped that her artwork captured her feelings and let her see them, she told a story o f a collage that helped her see that fears o f death connected to sexual abuse were in the past and that she was not carrying them wi th her into the future. Toward the end o f the interview, when Heather stepped back from her story and told me her ideas about art therapy, she said art is a way to access channels that are additional to scientific ways o f healing. She said healing is a question of balancing all parts o f one's life and in order to do this, one needs access to deeper, non-scientific types o f information. What struck me most about the interview was Heather's responses to my matter-of- fact descriptions o f her artwork for the tape recording. The spoken evidence o f her work being looked at seemed to have a positive effect on her. As I left, she thanked me for taking an interest in her art, not her story. 68 Patricia At the time o f the interview, Patricia was experiencing recurrent, metastatic breast cancer, having been initially diagnosed with breast cancer 17 years previously, at age 41 . She was a married mother o f grown-up children who was l iving wi th her husband. Her breast cancer had flared up after she had heart surgery. She had recently experienced other major health problems and said she felt "betrayed" by her body, considering that she had been taking good care o f herself. I spoke with Patricia in her home. We did not chat very much before the interview began. Once she had helped me get set up, she told me essential information about her cancer and her art therapy experience without taking the conversation on any tangents. She seemed comfortable talking with me, and was open and fluent in the medical language o f treatments, drugs, and symptoms. She spoke directly except that when she was at the heart o f her s tory—which was about art therapy helping her make a diff icult treatment dec is ion— she spoke in the second person, not in the first person. Patricia talked to me about some individual art therapy sessions she had at the cancer hospital. She explained that when she first had breast cancer, she minimized it and gave it as little attention as possible, but that when it recurred she was emotionally "overwhelmed" and decided she needed extra emotional support to get through the experience. She said she was drawn to art therapy because o f previous experience with art making and art therapy, and that she expected that just making art would make her feel better because that had been her experience in the past. She also said she wanted to get rid o f some of the diff icult feelings she was having. Patricia told me about two sessions that she claimed let her see more clearly what she was experiencing and helped her decide to have chemotherapy even though she had promised herself she would not do that again. The story was a dramatic account o f gaining insight from spontaneous drawing and immediately translating the insight into emotional resolution and action. Again and again, Patricia said she was "amazed" that spontaneous art could reveal so much. "I was very much amazed at what came out. I would have never believed that this amount of information would come out through... just letting something flow onto a piece 69 ofpaper" She said she had expected other benefits from art therapy, but not this. I was surprised that the process had been so instantaneous. Patricia explained i t by saying that in the supportive atmosphere o f the art therapy session she was able to relax enough to release her feelings and let an unconscious process occur. In this way, she was able to make a symbolic representation o f her inner self. Guided by the art therapist, she then searched the image for its meaning to her. When she saw her feelings displayed on the paper, she had a clear view o f how she was feeling and quickly decided that some action on her part was required. She said this experience gave her a sense o f acceptance that the outcome was out o f her hands. She described how she felt strengthened and empowered by her decision to take action. "7 was given insight that I wasn't aware of, which gave me a sense of empowerment and then I was able to make the decision that I wanted to from that." She explained that the art therapist was crucial because it is the supportive atmosphere that helps one get past habitual ways o f thinking. I think Patricia agreed to be interviewed because she wanted to help preserve the art therapy program at the cancer hospital. Patricia and I talked about why creative expression makes one feel better. Her view was that it allows feelings to be released, which feels good, and focuses one's attention so much that nothing else matters. She said that when one makes something creative, part o f the self goes into the creation, and that this release creates a peaceful, expansive feeling and a sense o f accomplishment. Ursula I interviewed Ursula by telephone. She spoke to me about her experiences wi th art and art therapy in relation to her own breast cancer and about art projects she has organized that have involved other women with breast cancer. She spoke from the position o f an artist who is dedicated to art and healing. Ursula was diagnosed wi th breast cancer 7 years prior to the interview, at age 53, after she found a tumour herself. She said she was having relationship difficulties at the time. Her mother and two of her aunts had died o f breast cancer. She said she had some individual art therapy sessions at the cancer hospital, and participated in other art/healing activities, such as dancing and writ ing. However, most of what she said had to do with 70 making art for exhibition. She spoke from a social perspective, emphasizing helping others and educating the public. Ursula said her breast cancer art projects were aimed at addressing and exposing the emotional scars o f breast cancer—scars that touch on sensuality, femininity, and sexuality, among other things. She said the artworks make these scars visible to the world and let women "unmask themselves. Ursula said the art projects demand great emotional courage on the part o f the women who have been involved and that the result has been confidence, trust, and improved self-esteem. The women (and men) could stop hiding the effects o f their cancer and experience themselves as more whole. When Ursula was describing the transformations she has observed in the women she has worked with, she said the reactions were something like: "I count, lam not just a scar. I am a woman with a story that matters" Ursula explained that the public purpose o f the art was to help others understand. She said that people who have not had the experience of cancer are often too afraid to try to understand, which can cause a person who has cancer to be isolated and alone. When Ursula talked about her own art and healing experiences, she said writ ing and art are particularly important when there is no one to talk to and that they are ways to reach into oneself and bring out fears, pain, and doubts that otherwise would just sit there. She said her art experiences brought her to an acceptance that allowed her to live ful ly each day. She described this as a "washing" that has let her start anew. When I asked her to elaborate on this, she said when our fears are expressed physically through wri t ing, story telling, or visual art, this can bring about understanding and acceptance. I t is then easier to look at the fears and let them go. Ursula claimed that when things make sense, they are not as frightening and that art allows this, even i f it is not shared with anyone else. She said others may be healed, too, by seeing the art, but only the maker needs to see it for personal healing. She explained that doing artwork allows her to go to the place inside her that is peace and that when she feels peace she can "deal with things." 71 Galen I interviewed Galen in her home. She had been diagnosed wi th breast cancer 214 years previously, at age 46, and was treated with surgery and chemotherapy. She spoke to me about art and art-related things she had done since that time, making it clear that art is part o f who she is. A t the time of the interview, she was making plans for finding commercial outlets for her work. Much of what Galen said was cloaked in laughter and irony. However, she seemed to be 'telling it like it i s ' — n o t pulling any punches. Galen told me things that were quite different from what the others had said. The focus was on defiance, not acceptance, o f cancer. She did not say anything about using art to move more deeply into the experience o f cancer, to see her situation more clearly, or to process her feelings. She downplayed the power o f cancer to negatively affect her life and downplayed her emotional reaction to it. She described how she used her art and her creative flamboyance to hold her own and to define her cancer experience in her own terms. She said she deliberately used colour and expressiveness to keep herself and others in a positive frame o f mind. So it was the colours then for my self-expression and just... exchanging ... happiness and all that kind of thing, and humour, and making light of things. I mean, it's not like I don't see anything as serious about all this, for myself or anybody else. It's just that which one's going to be the stronger impact, or response. And then I take this way as being quite positive ... being on the upbeat, and colourful, and not getting ... withdrawn, and doubty about it. [Galen] She took symbolic control by charting and documenting the entire experience. She said she could not make artwork while she was going through treatment—it was not a time for that; all she could do was feel wretched—but she could wear flamboyant hats and hand out playful stickers, spreading happiness around the cancer agency and be appreciated for this. When she was well enough, she started making art again and said she appreciated how this was an indication o f her improving health. With her art, Galen created ego gratification where there could have been emotional devastation. She showed me a card she had made with a drawing o f herself as a flower 72 making a face at the big bad cancer monster. She said she should also have made a drawing o f herself afterwards as St. George standing on the cancer dragon. The art Galen talked about was directed at other people—people who helped her and the general public. She said her art pulled her out o f herself and her past and into action and the future. So, it gives me a structure ...future vision of what I could be getting into, so it doesn't keep me focused on the past, or the now with the cancer. So, you know, very outwarding ... action ... and, colour... [Galen] Galen did not talk about recreating herself through her art, as some o f the other women said they did. She talked about reclaiming the self that she likes. She deliberately used art to energize herself, stay positive, strengthen her ego, and give herself pleasure. She described art as a very particular kind o f distraction that nurtures while it distracts. She made it clear she did not want her art making equated with art therapy. Lily I interviewed L i ly by telephone. She was diagnosed with breast cancer at about age 75, and was 82 when we spoke. She was leading an active life that included a lot o f traveling, and was married to man who at age 90 was still commuting and working ful l time. She had been working as an artist for many years. L i ly 's story was similar to Galen's in that it was not about introspection and turning inward for self exploration and self awareness. It was about momentum, movement, excitement, being with people, and traveling. L i ly talked about her own art production and about her involvement in the art world in general, including reading art magazines, organizing art exhibits, traveling to exhibitions in different cities and countries, and developing interesting friendships this way. L i ly said she had had a heart attack shortly before her breast cancer diagnosis and that she did not want to think about the breast cancer "because it was too much to think about." She said she just continued on, not talking about the cancer to anyone but family, not missing a single social engagement, and keeping up her involvement with various art organizations. "Ijust felt I, I wasn 't gonna disrupt my life, there was no reason to. " 73 (She did not tell me i f she continued playing tennis.) L i l y explained her beliefs about art by reading a statement she had written: "Art surrounds us in nature and in man-made forms. It has been imbedded in all cultures around the world from ancient to modern. It influences every aspect of our lives. We can draw from these forms to express ourselves. Creating and being involved with art offers new challenges, replenishes energy, andfacilitates growth, reawakening and refreshing the senses, and awareness of life's forces. All these elements combine into an exciting, satisfying, healing experience, which enriches the human potential and carries us through life's challenges. Happiness comes when we are able to waken our minds and hearts, and extend them to the farthest reaches of which we are capable." When I asked L i ly to explain how art replenishes energy, she said completing an artwork is like "winning something." She also said getting a vision for a new artwork is so exciting that sometimes she can't wait to get up in the morning or can't go to bed before doing one last thing to the piece she is working on. L i l y described art as something that "is going on" and went on to say, "There is always something new evolving. It isn 't static... and you never know in a way, what's coming next, and there is going to be something coming next." Brenda Brenda was diagnosed with breast cancer about five years before I interviewed her. She was 32 at the time, married, and pregnant with a second child. She terminated the pregnancy and started chemotherapy and Tamoxifen treatments just when she was going through the hormonal changes associated with the pregnancy termination. She said she was very sick and had a difficult time even though she had good support from family and friends. She said she was "fust slayedf by the chemotherapy. Brenda said the cancer diagnosis resulted in a major transformation in her life that included becoming an artist. She had been working as a video producer prior to her diagnosis, but said she could not continue being the "efficient" producer because o f memory loss and the "poisoning" from chemotherapy. She said she had to find out what else there was, which led her to visual art. 74 I interviewed Brenda in her home and was able to see works in progress in her studio as well as completed pieces in her house. Her first art piece was a collage she made of get- wel l cards that she did to transform fear into power. Shortly after this, she made a video o f her breast cancer story, which she said was tremendously cathartic and useful for her. From there, she moved to photography and has since built a career as a photographer. She also wrote a series o f ironically humorous stories about her experience of breast cancer. Brenda's artwork was linked to her advocacy for women with breast cancer. She said one of her artistic goals was to disrupt stereotypes of female beauty and acceptability and to promote the idea that the female body can be lovely even after it has been broken. She showed me examples o f photos o f women who had had breast cancer who were not hiding themselves or their scars but were letting themselves be "available to the world and the sky." Brenda described her activism as self-imposed t i th ing—paying back, while making changes she had the ability to make. However, she said she wanted to contain her activism and not have it f i l l her life, because activism was easy for her and she was interested in embracing a new version o f herself: the "artist who doesn't feel like an artist." She said it was much more interesting for her to figure out how to be "quiet enough" to do art than to do the things that were easy for her, such as advocacy, and that depended on her "personal charm and charisma." She said that since having cancer she had come to feel like a different human being. "I don't feel like not me. I definitely feel like more me." Serena Serena was diagnosed with breast cancer about 6 years before the interview, at age 56. She was single at the time and had no health insurance. She had been working as an artist and continued making art all through the time when she was fighting for money and for her life. She said she fought hard to make sure she would have the very best medical care. As we talked, her wry and sunny attitude was in stark contrast to her stories o f the diff iculty she had experienced. When I commented on her determination, she said it was the result o f terror. I interviewed Serena in her home studio, surrounded by her artworks. She said she kept going with her artwork because art was her "sanity" and that i f she was not engaged with her creative process she would lose a sense of who she was. 75 I feel like... if I don't have my hands in clay, or I'm not painting, or I'm not doing prints, or I'm not, I'm not making something, if I'm not engaged in some way with that creative process, that I start to lose a sense of who I am. [Serena] Serena talked about art as a way to connect to a larger source o f energy. She said her art comes from beyond her; she is only the vehicle. She said that for her, making art is a way of drawing on the energy o f the planet and therefore is a way o f being engaged wi th life. Her view was that making art takes one outside o f one's mundane concerns and that healing comes from being connected to a larger energy while not being involved wi th one's body or one's thoughts. Serena described this as a type o f meditation. When I asked her i f this kind o f healing goes beyond the moment o f creation, she said it gives one hope and "if you don't have hope, on some level you 're not going to have that desire to live, or that desire to overcome." I asked Serena i f making art helped her understand her experience o f breast cancer. She said it may have, and it was a way to "gather" her feelings, but that what mattered was the art process itself. She said the act of making art is "positive," no matter what is being made and no matter whether others see it. "I think just to be connected with something that is so positive, that creative energy, (pause) is healing." Serena showed me a journal she had kept while going through treatment for breast cancer that was illustrated with her drawings. She was also writ ing a book about her experiences. Gwen Gwen was diagnosed with breast cancer about 6 years before my interview wi th her. She was 62 when she was diagnosed. She was a divorced mother o f adopted children. She said she had a steady partner in her life at the time of her diagnosis. She talked about her own art making, not art therapy. While we talked, she showed me snapshots o f her paintings and drawings, many o f which had provocative political content, sometimes related to cancer. Gwen's interview was different from the others in that she talked more about how cancer had helped her art than about how art had helped her get through cancer. She told me 76 many things that happened in her life before she was diagnosed with cancer, as background for her stories. She said she had been interested in art all her life, and had been an art major at college, but that she gave up art while she was married due to unproductive competition wi th her artist husband. She said she felt there was "no me" while she was married and that it was only when she took courses in Women's Studies toward the end o f her marriage that she began to feel that there was "some being" to her. Right after that, she started taking art classes again. About two years later she was diagnosed with breast cancer, which "devastated" her. She joined a group o f women with breast cancer that met every week and that it was during one of those meetings that she realized she wanted to "be an artist"—that she wanted to identify herself that way. She continued taking art classes and became more involved wi th art—paint ing, exhibiting her work, and organizing exhibitions. She said the cancer gave her a 'what have I got to lose' attitude, and that with this attitude, her confidence and colour sense grew. The main point o f Gwen's story was that art gave her a sense o f identity that she had never had. She explained that when she decided to be an artist, it was the first time in her life she had chosen her path herself. Unt i l then, she had gone along with other people's ideas about her life and had done things she had not wanted to do. She described her art as a "lifesaver." She said it took her away from her worries and got her out o f herself. She finally could feel good about herself and, in addition to that, her cancer had "stayed away." She commented that without her art she would not have had anything except the "damn cancer." As it was, she kept making art, in spite o f cancer and in spite o f other major medical problems she had experienced since then. Hannah Hannah was diagnosed with breast cancer at age 54, 6 years before our interview. I talked wi th her at her mother's home, surrounded by her mother's paintings. We were a bit pressed for time. Hannah had been working as an art therapist at the time o f her diagnosis. She talked to me about both art making and art therapy in relation to breast cancer. She spoke from the point o f view of an artist, a cancer survivor, a recipient o f art therapy, and an art therapist who organized art projects in cancer settings and recently had been offering art 77 therapy to people with cancer. A series o f her comics about her experience o f breast cancer were on a cancer website. She told me she volunteered to be interviewed because she "wanted to help" As we talked, she seemed glad to be discussing art and healing. Hannah explained that although she felt overwhelmed after being diagnosed with breast cancer, she did not want to "be her own art therapist." Instead, she set up a system for herself where for every "bad" thing she had to do, for example, see a doctor or have a radiation treatment, she would match it with something "good\ such as making art. "Ijust wanted to do art because I knew that that gave me pleasure and I knew it was counter to, all the awful things you have to do." She said it was important to her to keep from being reduced to merely a cancer patient. She said the difficult part o f the experience was not the cancer, but the way she was treated as a cancer patient. She described going in for surgery: The whole experience from beginning to end was horrible ... They were running behind so they took us out of our private little places and put us all in kind of a holding area ... The whole thing was so grim ... They picked us up one by one, sort of like ... condemned people ... All the experience of heading into... and then you go into a freezing cold room. Everybody's masked; there's not... a human thing about any of it. [Hannah] Hannah said the way to help someone who is experiencing a life-threatening illness is not to place her/him in a bleak, cold environment, but to provide things that stimulate the life force. Her approach to art therapy was to provide a life-promoting sensual environment as wel l as opportunities to work with art materials. Her view of working with imagery was also expansive. "What art can do is it gives you... access to a larger part of who you are." She said making art can take people away from their pain and show them that they are more than pain, and therefore can gives a sense of control. Hannah talked about how using the hands relaxes the rest o f the body and brings memories forward, and how just looking at evocative pictures can put people in touch with things that matter to them and can remind them that there is "health in them." Bessie Bessie was diagnosed with breast cancer for the first time 13 years before our interview, at age 41. She was diagnosed with a recurrence 2 years later and again 6 years 78 after that. She talked to me about short-term art therapy she received at the cancer hospital (free o f charge) wi th a family member shortly after her most recent diagnosis. Her breast cancer story included the story o f her immigration to Canada from Australia 10 years before her first diagnosis, a divorce immediately after that which left her with no money and children to support, and what she called the disintegration o f her family after her breast cancer diagnosis. I had spoken to Bessie several times on the telephone before we met and knew that she was very wi l l ing to talk about her experiences and that she felt some emotional vulnerability. A t one point during the interview, she asked me to turn o f f the tape recorder. For Bessie, cancer was not separate from the rest o f the person's life. She claimed that the physical side is the final manifestation in the body of what lies at the core o f the disease which is "dis-ease" and blockage o f the creative being. She explained that she had learned to associate cancer with resentment and painful events that are "too massive to handle." She said healing from cancer is primarily emotional healing, but that medical treatment is necessary to recover the body. She acknowledged that thinking about emotional causes o f cancer is treacherous territory, but said, "If I put it in, I can put it out." She emphasized that trusting that one wi l l be cared for and having an opportunity to address the emotional issues underlying the "dis-ease" of cancer are the most important dimensions o f cancer treatment. Bessie said it "changed the face of having cancer" to have so many more support services available after her most recent diagnosis than when she was first diagnosed wi th breast cancer. She explained that she chose to go to art therapy (with a family member) in order to "heal the family." She also participated in other programs offered by the hospital, such as relaxation and meditation groups. She said cancer gave her an opportunity to ask for what she needed. Bessie showed me an artwork she and her family member made together in one of their art therapy sessions and used it as a touchstone as she described how non-verbal communication in the sessions got her and her family member past their communication barriers to some "common ground." They said again and again that it was the opportunity for non-verbal communication that was usefu l— i t took her past her "defences"—coupled 79 wi th skilful guidance from the art therapist. Like many o f the women I interviewed, she expressed unquestioning belief in the truth of non-verbal, visual expression. She said she had learned not to trust what people say and connected this with being an immigrant. When I asked her why she could trust the art image she showed me, she said, "Because it's totally true, it's there, you know, how can you deny it, it's just there." She said the experience o f art therapy was painful and "nerve-racking," especially at the beginning before she started to trust the process, but that art therapy is something she might use again in the future. Laura At the time o f the interview, Laura was very i l l wi th metastatic breast cancer, having been diagnosed 5 years previously at the age of 43 . We had planned to do the interview in person, but because o f logistical problems had to do it by telephone. Consequently, I did not see the artwork Laura would have shown me i f I had visited her in person. Before becoming i l l , she had made her l iving as a mural painter. She talked to me about her own art making in relation to her breast cancer. Although Laura spoke slowly during the interview, probably with considerable effort, she seemed very eager to share her story and her ideas about art and healing. She said she was pleased I was doing this research. She asked me to prompt her with questions to make it easier for her to speak to what I was after. Unlike some o f the women I interviewed, who told me their overall cancer stories to give context to their stories o f art/art therapy, Laura spoke only o f art and healing. For every point she made, she gave a specific example o f something she had experienced. The three main things Laura talked about were releasing emotions by making art, the importance o f doing this physically, and seeing more clearly what is going on as a result o f getting in touch with emotions and expressing them. These three ideas intertwined in her stories. She also talked about soothing herself by painting, and mending herself. She said it is part o f her being to make art, and to be physical about it, and that she does not feel like herself and does not feel centred i f she does not make art. Laura described making art as a form of "meditation" that lets her think her thoughts and process her feelings. She explained that she has always thought o f her art images as 80 "messages from the interior" (her interior). She "reads" her images to know what they are saying to her and sometimes wi l l write to f ind out more. She gave two examples o f seeing things in a new way through her art and coming to acceptance this way. Her stories o f seeing things more clearly contained stories about using her art to symbolically make things better or to give herself what she needed. Laura said breast cancer brings so much emotion that there has to be a way to deal wi th it, and that it is important to release emotion rather than to hold it in. She talked urgently about the importance of releasing emotion physically: crumpling paper, using messy materials like dirt and rocks, pounding clay, being physical to symbolically "re-shape" the situation. She explained that i f she did not have a way (art and dance) to get in touch with and release her feelings, especially her anger, she would hold them in. This was clearly where the real charge was for her. When she was recapping all that she had said about art and healing, she said: I think that getting in touch with those feelings ...getting the sort of the kinesiology, or the physical, the... touch of you know... the anger, getting the anger out, and pounding cancer cells, or something... That's a good release, too. So it's not just an intellectual exercise that, but physical releases the anger, too. That's important. [Laura] Summary The 17 women who contributed their stories to this study were diverse in age, stage o f illness, socio-economic background, and living situation (partnered or not). There was diversity in the motivations they expressed for turning to art therapy and/or independent art making after being diagnosed with breast cancer. Their stated motivations included wanting emotional support, wanting a creative outlet, wanting to resolve specific personal issues, wanting to connect to certain kinds o f energy and life force, wanting to attend to non- physical dimensions o f illness, and wanting to accentuate particular aspects o f themselves. A l l o f the women seemed enthusiastic about helping with this study and seemed comfortable talking wi th me. A n equal number o f women talked about art therapy and about independent art making. In each group (art therapy and independent art making) there were some who said they had previous experience and some who said they had none. Ten o f the women 81 showed me examples o f their artwork. The women provided a range o f viewpoints on the research question. In the fol lowing chapter, I use excerpts from the women's narratives to present the results o f my analysis of what they said. 82 Chapter 5: Storylines and Minor Themes The primary results o f the analysis were four storylines derived from the participants' narratives about using art therapy and independent art making in relation to their experiences o f breast cancer. These storylines were: "art and art therapy as a haven," "getting a clearer view," "clearing the way emotionally," and "enhancing and enlivening the se l f " Each storyline was in at least 10 o f the 17 interviews. Five interviews contained all four storylines, seven contained three, three contained two, and two interviews contained only one. Overall, the storylines were represented equally in narratives about art therapy and narratives about independent art making. The exception was "getting a clearer view," which was derived primarily from narratives about art therapy. Two minor themes also emerged from the analysis. These were: "the role o f the art therapist" and "negative experiences wi th art therapy." In this chapter, I discuss the storylines and identify relationships between them. Each is presented first wi th a thematic overview that represents the first task o f the analysis, which was to synthesize what the women said as a group. Then, for the four storylines and the four subcategories within the fourth of the primary storylines, I present exemplar narratives that represent the second task o f the analysis, which was to determine what the women meant by what they said and how the things they recounted were important to them. I comment on the overall narrative structure o f the exemplars and outline my examination o f each one in relation to the interview context and the women's personal contexts and beliefs. I present "negative cases" to show that there were some narratives that ran counter to the main storylines in ways that are important to the overall understanding o f the findings. The chapter ends wi th a discussion of the minor themes. 83 Art and Art Therapy as a Haven "You get the feeling of a haven in it—all these art supplies and all these caring people... " Thematic Overview One storyline that wove through the interviews was that o f art making and art therapy as a haven where the women could find comfort and acceptance and where they could have temporary respite from the cancer storm. The women's "haven" narratives pointed to a need for a haven and showed why it was important to spend time there. In this storyline, involvement in art making created a setting for healing that was separate from the rest o f life and that let the women be accepted and affirmed for who they were. In the accepting shelter o f the haven, the women could attend to their personal needs. The haven narratives were generally preceded by comments about the emotional weight o f the experience o f breast cancer—"I was just off the wall in terms of the overwhelming aspect of the diagnosis" [Meredith], ".. .It was an absolutely devastating diagnosis for me ... I can see that in my early writing, how scared I was" [Donna]—and the need for relief: "I had to have support... I had to ease my mind somewhere" [Ursula]. Some women felt trapped or oppressed by what they were going through: To get down to emotional aspects of this, I just feel like I have been beaten up, you know, there's been one thing after another... Ifelt very, very overwhelmed... I almost felt trapped by what was happening with my body in that I couldn't get on and get going with life, that this body was keeping me trapped with all the problems that it had. [Patricia] Sometimes it was the treatment that felt oppressive. "[I was] just slayed by the chemotherapy... it was just horrendous" [Brenda], " . . .you 're just so sick and... you 're totally out of control 'cause... all these drugs they put into your body... " [Hilda] The haven narratives that followed these opening remarks were often the first chapters of longer stories. That was the case for Donna, who said this when she was orienting me to her stories about group and individual art therapy: [Art therapy] turned out to be one of the most wonderful things that happened to me. It was the first time in two months that I didn't think of the cancer... It was the first time that the nightmare had stopped. ... When I was in therc.it just... seemed to be like a gentle rain falling on me. You know, it 84 was...what's the word for U? Beneficial...like a blessing almost coming over me. [Donna] Then she went on to tell stories about other benefits o f art therapy. In some cases, "art and art therapy as a haven" was not the first chapter, but the primary narrative throughout the interview (see Bonnie's haven narrative below) or the setting for the events o f other stories the women told. Throughout my interviews with Serena and Gwen, they talked about their independent art making as a place to go that is out o f reach o f cancer. Serena created a backdrop for her story about keeping herself together professionally and emotionally with her art making—after being diagnosed wi th breast cancer at age 56 in the US with no health insurance—by repeatedly describing her art as a way to be away from her fears and cancer concerns: When I 'm making art it's like... (pause) I think that there's something about making art that you're... outside yourself. You 're not involved with yourself. You 're not involved with my "This hurts, "or my "What am I going to do? " about whatever ... It's almost like you've stepped aside from... the mundane aspects of your life... [Serena] Gwen's story o f finally choosing what she wanted in her life and turning herself into an artist after her breast cancer diagnosis was also set against a backdrop o f comments about art taking her away from her worries. For example, she said: It... always did take me away, you know. ... You can get lost doing it. You... forget about everything when you 're doing it. [Gwen] The haven narratives showed how pain and overwhelming emotion could be countered wi th comfort and pleasure in the haven. Some of the women oriented me to their stories by saying that a need for a haven is what drew them to art making or art therapy when they were diagnosed. Hannah, who is an art therapist, said she did not feel a need for therapy, but wanted to get away from the confining pressure o f cancer and to have the pleasure o f art making. ... whatever was pleasurable, and the opposite of this sort of awful, what I called Cancer World. 'Cause when you get into Cancer World it's sort of (pause) well, it's all that you do and you begin to see yourself as just a cancer, a person who has cancer. It's ...overwhelming ...It wasn 7 like I... felt like I had to express myself, or I had a story, or anything. Ijust wanted to 85 do art because I knew that that gave me pleasure, and I knew it was counter to all the awful things you have to do... And... so, I looked around for as many things as I could do, and I did find this one group called Have Cancer Make Art, and it wasn 't a support group particularly; it wasn 't a... therapy group. It was just we got together once a week and made art. ... There's no way to kind of describe how insular your world gets, and you forget that you have anything to do with the rest of the world ...I mean, forget that you 're somebody else as well ... You 're a fuller, richer person than what Cancer World makes you be. [Hannah] Patricia, who had two individual art therapy sessions during a recurrence o f breast cancer, began her story by saying she chose art therapy in part because she thought it would be pleasurable: This time I felt very, very overwhelmed. And, I was talking with the community health nurse who's coming around, you know, checking on my breast and the problems and also who was bringing me the bandages and... it was somebody to talk to, somebody to help me, somebody that could give me advice. And, I asked her about art therapy. I felt I wanted to do something creative because when you do something creative you feel belter, at least I do. I can remember coming home from doing pottery and having a high. I mean, I didn't need marijuana. Just, it made you feel wonderful... I've always found that anything artistic makes you feel better. [Patricia] Comfort, pleasure, and relief from cancer were important aspects o f the women's haven narratives, but not the whole story. As they put together these narratives, the women described a quality o f the haven that touches on a core dimension o f meaning making: re-establishing a satisfactory sense o f self. This metastory permeated all the women's stories, beginning with their haven narratives. In the haven storyline, the woman who comes to the haven is taken for who she is, cancer, fear, and all, without negative judgment. Whether it is art therapy or her own art making, she can let down her guard and show parts o f herself she might otherwise conceal. The art therapist and the art w i l l receive whatever she offers. Even when she expresses her terror, her shame, or her anger, she wi l l be heard. Not only that, she wi l l be encouraged to express herself as she is—including the darkest parts o f herself—either explicitly by the art therapist or implicit ly by the nature o f artistic expression. In the haven, she has the freedom 86 to focus on herself and to experience herself as an expanded self, not a deflated, diminished self. Ar t therapy as a place to be accepted and heard was the primary narrative in my interview wi th Bonnie, who had been diagnosed recently and who was l iving on her own (see below for more about Bonnie's haven narrative). In some of the narratives, this aspect o f the haven was described as "freedom"—freedom from habit: "[There was] total permission... to just be totally not like I am most of the time... " [Annie], freedom to construct a new self: "I'm not the person I was before so now... with the playing and that... I'm learning to become a different person..." [Bonnie], or freedom from dominant discourses: Because if you didn't... have preconceived notions of what cancer's going to be like, you might not be frightened of it. If somebody told you that it was very similar to a big box of Purdy's chocolates, you might have a whole (laugh) different idea when you 're first diagnosed. I know it's very out there and I don't fully understand it yet ... it's something I'm working with, but the art helps me... [Annie] Negative Cases Ten o f the 17 interviews contained haven narratives. In a few o f the other seven interviews, the women made comments about seeking art therapy in part because they wanted emotional support and/or affirmation. In some of the interviews, however, there was no inkl ing o f anything like a haven story and other storylines dominated, such as vitalization (Galen and L i ly) and clearing the way emotionally (Hilda and Bessie). The idea of art or art therapy as a haven would have gone against Galen and Li ly 's stories about barely acknowledging cancer and just getting on with making their art. Both o f them said they did not use art as therapy. Hilda and Bessie both said they used art therapy in very specific ways to clear up problematic feelings about family members, not to find emotional shelter, be affirmed, or to be free from "cancer patient" identities. Art and Art Therapy as a Haven: Exemplar Narratives Sarah's account o f her quilt making and Bonnie's account of individual art therapy sessions featured the "art and art therapy as a haven" storyline in different ways. Sarah's account began with a haven narrative about finding comfort in quilting and a positive sense 87 o f self as a quilter, and from there moved to other narratives. In contrast, "art and art therapy as a haven" was the primary narrative throughout my interview with Bonnie. Her stories about how art therapy comforted her and also kept her from feeling dismissed—as i f her entire being might have been brushed aside i f she could not express herself and be h e a r d — wound through the entire interview. Sarah's narrative. Sarah said she had been quilting a bit before her breast cancer diagnosis 4 years previous to our interview, and that after being diagnosed she began quilting in earnest—first to take her mind o f f her distress and then for other reasons: to give herself pleasure, to feel like a creative person rather than a cancer patient, to focus on her feelings, to commemorate future events she thought she might not live to experience, and to offer something o f value to others. In addition to making quilts for loved ones, she involved other women in making collaborative quilts for hospitals where women receive treatment for breast cancer and thus used quilt making as a way to pay back for the cancer treatment she received. When I arrived at her house for the interview, Sarah gave me a tour o f her quilts. When she began telling me how quilting had been and still was a haven for her, she already knew I was captivated and impressed. Although Sarah did not say this outright, my impression was that the reason she volunteered to be interviewed was to let other women wi th breast cancer know how helpful creative expression can be. When I reflected on Sarah's narrative, it reminded me of her quilts. She told her stories wi th tenderness and precision, putting every piece in place, only backtracking i f I asked her to. She put together her narrative without asking me to guide her with prompts and questions, or to hold the fabric (the narrative) steady as she spoke about personal things. Although there was deep emotional pain at the core, overall it was a comforting and reassuring narrative that began with a small inkling o f personal healing and expanded to cover her entire sense of self. Sarah's haven narrative had a cumulative power, like a quilt where the first pieces remain as more pieces are added and where the totality accumulates, piece by piece. By the end of Sarah's haven narrative, quilting had taken her to a level o f confidence she never expected to have in her life. 88 In Sarah's narrative, she convinced me, the listener, o f the depths o f her pain and o f the accumulating healing power o f quilt making in two ways: by telling her stories as an eye-witness who watched, often with surprise, as the story unfolded, and by presenting verification in the form of consequences o f the quilting events she recounted. The metaphorical quilt o f her healing journey seemed to make itself as she repeatedly said "Ifound..." to show how the benefits o f quilting unexpectedly revealed themselves to her, just as the overall pattern o f a quilt might seem to make itself as each piece is put into place. Sarah told the story as i f the healing benefits emerged out o f nowhere and were caused by something beyond her control. (She also described her reaction to her diagnosis as something that "happened" to her.) Even though the driving force behind the story was obviously her long hours o f quilting, there seemed to be some other force at work that had to be respected. The descriptions o f clear consequences and the invocation o f something beyond her control made the narrative convincing, even without the very convincing physical evidence o f dozens o f exquisite qui l ts—that gave the message that she must be gaining something o f great value from her quilting for it to be worth so much o f her time and attention. The fol lowing excerpts are from different parts o f my interview wi th Sarah, beginning with the first things she said when I asked her to tell her story. I was diagnosed about 4 years ago. ... I am the sort of person that ... pushes my own emotions underground and takes care of everyone else and that's precisely what happened. Underneath it all, I have a lot of anxiety, a lot of fear. I had, I had been quilting for a few years, just making small items: ... I decided when I was diagnosed and I found out that I needed to have chemotherapy almost immediately that I would make myself a bed-size quilt. I thought it would be a good project and it would keep my mind busy and off of... off of my fears. So what I did was I started... I found a very simple pattern and started making a block...a six inch block...before my treatments and I found that the days that I did that I...felt so much better when I... arrived at the hospital. I got through the treatment... with very little anxiety and... it brought serenity and peace and just...a very calm feeling to me when I did that. ... The days that Ifelt well enough after my treatments, between treatments I also made a block. That was usually enough. I mean I was pretty ... tired and pretty sick. By the time my chemotherapy was over, I had completed a quilt and had started on a second one... and...1found that... (pause) that my colour sense was changing ... As my quilts kind of... kind of 89 grew more complicated, so did the colours that I chose. And my second quilt... I chose the pattern out of a magazine that was truly ugly and that the women at the quilt shop thought it was incredibly ugly. But when I brought it back to show them when it was done, they couldn't believe it was the same thing...because I'd ... done it in completely different colours. So I... I had started not designing my own quilts but at least choosing my own colours and playing with colour and I really found that... it was really almost healing to go into the store and... I would say that half the joy of buying fabric is to bring it home and lay it out and touch it (big laugh) and feel it and (laugh) ... It just really brought a lot ofpleasure to my life. ...It just made me feel good. ...I was still in treatment at that time and... when I took that quilt to show those women, I didn't have breast cancer anymore. I was a quilter and I was speaking to them one on one and they were admiring something that I'd made, that a few months ago I wouldn 't have ... had the patience to... play with these little tiny scraps of fabric and sew hundreds (laugh) of little pieces offabric that I'd cut up back into something that was, you know, that was a quilt. ...It was really encouraging to me. It made me feel like I could do something, that perhaps breast cancer hadn't taken everything from me. I gained a new skill, which I think eventually became... a way of me to express myself in an artistic way. [Sarah] Sarah began her haven narrative by moving quickly past information about her diagnosis and making a strong identity claim, which is to say, a statement about the kind o f person she is: "I am the sort of person that ... pushes my own emotions underground and takes care of everyone else and that's precisely what happened. Underneath it all, I have a lot of anxiety, a lot offear." This identity statement was bolstered by stories Sarah told about not wanting to cry in front o f other people, and about doing things for people she cares about. The stories illustrated personal values: that emotion should be kept private and that doing for others is important. Sarah's account contained other narratives in addition to "art and art therapy as a haven." Within these subsequent narratives were stories about processing feelings while quilting and about turning her emotion to good work and using it to make a difference for others. In light o f Sarah's identity claims about being a person who suppresses fear and anxiety and instead takes care o f others, it is easy to appreciate how quilting became an important haven for her. In the haven, her fears were subdued and she could see that cancer had not "taken everything''' from her. In her narrative, both these things happened in ways 90 that were in keeping with her pre-cancer values and sense of self. She could experience and address her feelings privately while doing something for others and experience herself not as a cancer patient but as a creative person wi th something to offer. Bonnie's narrative. Bonnie had been diagnosed more recently, only 14 months before our interview. She began individual art therapy at the cancer hospital shortly after being diagnosed and later participated in some art therapy groups. The art therapy activities she described included activities for experiencing, expressing, and releasing feelings; treating anxiety; developing insight; and building bridges to the future. She said she had no previous art or art therapy experience. At the time we talked, she was still actively and enthusiastically involved in the art therapy program at the cancer hospital. Before the interview, Bonnie explained that she lived alone and had moved to the city where she was living a few years before her breast cancer diagnosis. She said she had to stop working after she was diagnosed and had financial concerns while dealing with the shock o f the cancer diagnosis. The shock was amplified by the memory o f previous traumatic medical experiences. Bonnie's haven narrative was made o f stories about not knowing who she was after her diagnosis and about needing emotional support that she did not easily f ind within the medical world, but did find in art therapy. Her haven narrative extended through the entire interview, rather than leading to other narratives. It resurfaced each time I asked her about other things. The fol lowing excerpts from Bonnie's narrative are taken from different parts o f the interview. ...I was referred to the Cancer Agency for treatment, and that didn't get off to a good start because the oncologist, do you know when she came in to speak to me she... at one point I started, you know, started to cry because it was so emotional and she basically told me to get a grip on myself. I should've come to terms with it by now... and I had only been diagnosed officially a week. ... The only good thing the oncologist did was to send me down or ...suggest I go to Patient Family Counselling. ...I called for art therapy. ...I had tried relaxation therapy and that was too stressful because I would lie on the mat and Fd be in tears. So I thought art therapy (laugh) was the way to go. ...I found it was very helpful to me because I was able to express how I was feeling and my feelings wer en't dismissed and ... it was...I'd say a safe place which to express myself because sometimes I didn't know what I was feeling, you know. I was angry, sad, etc. And Ifound it did help with the drawings 'cause [the art therapist] encouraged me to draw whatever I felt... ...So it was a way, as I say, of expressing how I was feeling in a very safe environment with an opportunity to be creative.... And there was...also Ifound ... how can I say ...self exploration ? 'Cause Ifound I... I didn't know who I was anymore. It was like my pa... the person I was before the cancer was gone and I thought what is my life going to be or I didn V see a life. I didn't see a future. A lot of the time Ijust felt I was drowning and it... the art helped me to stay ... you know, not totally submerged but just, you know, my head was above the water. And it also helped me to going through meeting the oncologist. ...It helped me relax by doing the art. Then I could go and be more psychologically prepared for the ordeal of the appointment. ...Ifound the art too was also outside the cancer... I really found it helpful because in the... with the arts because although it was, say, cancer-related, I felt that I wasn't a cancer patient then.... And it also helped me through the loss of my hair, you know, and the wig because that was devastating. And all the side effects I had through the treatment... ... And the art too was comforting 'cause it was ... peaceful and I could just be me. It was just a self expression and it was my time for me and there was never any criticisms which... well, it was very (laugh) important going through this. And you 're...neither of my feelings or fears or whatever were dismissed as being irrational or ... out of context. It was my time and my place and I could do what Ifelt like doing. ...[It was] a very stressful time and I would go to the art therapy session and be totally stressed. Either because, say, I knew I had a vi... upcoming visit with the oncologist or because of the...adverse side effects of the chemo, and...just being able to express to [the art therapist] how I was feeling... ... When I started there, I felt like I was a frightened little child, you know. I didn't know what was going to happen... and... I also felt, too, going into it that my concerns wer en't being addressed on a medical level and, you know, I was... What is this treatment going to do to me? and, say, all my concerns were sort of dismissed. And there was a certain point when it was so bad I thought... if it hadn 't been for the art therapy, being able to go there and, say, express myself and work out how I was feeling, I would have stopped the treatment, because it was just...the mouth sores and... you know, the fatigue and the nausea...and then 92 losing hair was ...devastating. So that...it just helped me get through ... a very difficult time... I couldn't have gone through last year if I hadn 't, say, had that to look forward to—have that, the art therapy sessions, to look forward to. [Bonnie] These excerpts give a sense o f how Bonnie repeated herself again and again as she explained that art therapy provided her with the support she wanted. As she told and retold her stories o f finding emotional support through art therapy, she made many mentions o f losing her identity after her diagnosis and of being dismissed in one way or another by medical people. She said her art therapy sessions gave her a place where she could "just be me, " where she would be heard, and where she could begin to re-establish a satisfactory identity. Bonnie's repetitions functioned as a powerful rhetorical strategy. She spoke with glee. It was as i f she were showing a treasure she had recently found, pointing to it again and again as she marvelled at it, perhaps not totally believing her luck. Although she mentioned some consequences o f art therapy (e.g., being better prepared for meeting the oncologist), her persuasiveness about her loss o f identity, her need for support, and the benefit o f art therapy came mainly from her repetition and from her description o f hypothetical dire consequences that would have occurred i f she had not had art therapy, e.g., "there was a certain point when it was so bad I thought... if it hadn't been for the art therapy ...I would have stopped the treatment.'1'' She made her case almost as a child would, which underscored her argument that she needed emotional support after her diagnosis because she felt like "a frightened little child" During the first part of the interview, Bonnie's identity claims were mainly about identity loss and about being dismissed - "I had no idea where I would be or what I would be doing after treatment was over..." "and I still don't know who I am..." "I really have nowhere to go" "it's like you 're dismissed1' "I was in no man's land." She also claimed to be someone who is mistrustful o f the medical profession, and someone who is likely to be "too logical." I t was only toward the end o f the interview, when she was showing me images she had made to envision bridges toward a future, that more positive identity claims emerged. She showed me collages representing things she liked, things she had done, and things she 93 said she would like to do, but she presented these things as somewhat disconnected from her. These images gave hints as to her personal values, but the only values she stated outright were about how she thinks patients should be treated by medical people. Bonnie's narrative was about comfort, emotional support, and identity affirmation. In art therapy at the cancer hospital, she received the support she wanted. She said this was comforting and reassuring and that it helped reduce her anxiety—which she claimed was considerable due to previous negative experiences in hospitals. Additionally, she could work on re-establishing a sense o f self by making images and by expressing feelings that were not dismissed, using an avenue that let her not be "too logical" Her narrative shows that art therapy helped her feel that she existed and helped her believe that cancer would not take her sense o f self and her feeling o f existence away from her. The Art Therapist and the Art Therapy Group Haven narratives were told both by women who talked about art therapy and by women who talked about their own art making. In the narratives that had to do with art therapy—either individual or group—there was more to the haven than art making. The women who said they found a sense o f haven in art therapy groups (Annie and Donna) talked about the group experience as a haven. Annie described a sense o f haven from the permission to be herself and to make a mess, and also from the atmosphere in the room. There's some real genuine support—that the people in the group want to support each other, that we are genuinely interested in each other's health, both physically, emotionally ... We wanna see each other overcome this setback, and... or, you know, at least find something in the journey it presents that's valuable. You know? There's that. ... I particularly enjoy having little candles on my table when I'm working. I find that really lovely. ... I might go, 'Ahhhh, what did I do that for? I messed up.' And I look at the candle and then it's okay to have messed up. [Annie] Donna also spoke about the group as a haven: When I was in there, it... seemed to be like... a gentle rain falling on me. You know, it was... what's the word for it? Beneficial...like a blessing almost coming over me. I could just feel it. It was a combination, because it was a group out of the art therapy and the instructor ...and the people... When you 're in a group setting and everybody else there has had cancer or is a 94 supporter of somebody with cancer, there is an extremely strong feeling of power of those people that... transfers. [Donna] Similarly, in Bonnie's narrative about finding a sense of haven in individual art therapy, the most important things were the supportive, non-judgmental atmosphere and that someone— the art therapist—did not dismiss her feelings as irrational or inappropriate. When Bonnie talked about expressing herself, she talked about expressing herself to the art therapist. In these instances, the therapist and/or the group were integral to the haven. This was not the case in all the haven narratives. In some, the sense of haven came simply from making art. Summary The storyline "art and art therapy as a haven" paints a picture o f both art making and art therapy as places separate from the rest o f life where the women could have shelter from the cancer storm (and cancer patient identities) and where they could experience pleasure, comfort, and relief. In the narratives that yielded this storyline, the importance o f the haven was not simply that it provided distraction and comfort. It was a place where the women could be affirmed and accepted for who they were, and where they could attend to their needs. In the following section, I present two storylines that show two ways the women attended to their needs while in the haven. Getting a Clearer View and Clearing the Way Emotionally "Because [art] is nonverbal, because it gets past all the shit on top. ... It's very direct.'''' In the previous section, I discussed a storyline made o f women's narratives about art/art therapy as a haven where they could find pleasure and comfort and where they could let down their guard and attend to themselves. The two storylines I discuss in this section begin to show why it mattered to the women to be in this and not some other kind o f haven. The storylines come from stories the women told about using art making or art therapy to get a clearer view o f their situations and/or to clear the way emotionally by releasing or working through emotional pain. I discuss these storylines together for two reasons. The first is that although one or the other storyline stood alone in some o f the interviews, in many of the interviews the two were intertwined and interdependent. The second is that I want to pull 95 into view a fundamental similarity between "getting a clearer v iew" and "clearing the way emotionally" that is contained in the women's narratives. The storyline that I have called "getting a clearer view" was easy to see in the interviews. The women told many stories about gaining insight and coming to understand their situations better as a result o f art therapy, and in one case (an artist who has had extensive exposure to art therapy), through personal art making. I t required very little interpretation on my part to bring this storyline into focus. On the other hand, the storyline I have called "clearing the way emotionally" was articulated overtly in only a few o f the interviews and indirectly in others. It required subjective interpretation on my part about the meanings and significance o f the women's narratives for this storyline to emerge. The interpretive process happened in the following way. I was struck by the similar feeling o f the two groups o f narratives that became the two storylines. As I tried to capture this feeling for myself, I referred back to the haven metaphor. I imagined preparing to leave the haven to go back out into the storm. I pictured wiping the steam from the windows to see out, deciding which path to take, ascertaining that the path was clear, and making decisions about what to take along and what to leave behind. These images matched the quality o f the women's stories and gave me a way of understanding stories that seemed to be about getting a clear view o f where one is and moving forward from there as freely as possible. The conceptual similarity between the two storylines is that in the stories, the women got a clearer view by making a clearer view, just as they made clearer paths for themselves by making the way clear with art. In the end, the storyline I called "clearing the way emotionally" contained the stories the women told about "processing" "releasing" "getting rid of" and "resolving" diff icult feelings—as well as stories about "expressing" feelings when I could determine that the word "express" was used to mean "expel" as well as "make manifest." One woman's narrative o f "clearing the way emotionally" was very specifically about lightening her emotional load as she went ahead with chemotherapy. Other narratives were about processing feelings and resolving emotional issues about cancer or other things in order to "move through" them. It is noteworthy that this storyline—that was made o f the women's 96 narratives about actively processing feelings and coming to resolution (things that are typically associated wi th the word "therapy" in common parlance)—was only one piece o f a much larger picture evoked by the women's stories. Getting a Clearer View: Thematic Overview A l l but one o f the 10 women who had received art therapy (and one of the 10 women who used her own art making to help her during the experience o f breast cancer) told stories about how art/art therapy helped them to see and understand their situations more clearly. Ten o f the 17 interviews contained "getting a clearer v iew" narratives. For example, it was the main narrative in my interview with Bessie, who told a "clearer v iew" story that wove through the entire interview. The story was about a few art therapy sessions she had had wi th a family member while she was being treated for a recurrence o f breast cancer. She said, among other things, that art made in art therapy wi l l "point out to you ...exactly how you are feeling." "Getting a clearer v iew" was also a main narrative in my interview with Laura, a professional artist who had been l iving with breast cancer for 5/4 years. She said analyzing one's art is a way to "see where one is." The women's "clearer v iew" narratives contained stories about a variety o f ways that art/art therapy had revealed what was happening for them. In some of the narratives, art/art therapy functioned as a mirror that could reflect the women's experience back to them. More often, art/art therapy was described as a lens that could show more than one usually sees or a probe that could see past the surface to what is inside. For example, Laura and Bessie both repeatedly said things like this: "...whatever [art] I've done has always kind of helped me see clearer what's going on... it tells you different things about what's going on inside" [Laura] and "Because [art] is nonverbal, because it gets past all the shit on top.... It's very direct. It gets to the spot..." [Bessie]. Even in the interviews that did not contain prominent "clearer view" narratives, there were many comments about seeing into the self more deeply through art. Annie had been a regular participant in group art therapy since her first breast cancer diagnosis 6 years previously. This is one of the things she said about seeing beyond the surface: "The art therapy is enabling me to peel off the layers so that I can see what it is that causes my whole being to be... pre-disposed to dis-ease." 97 In addition to stories about art/art therapy being a mirror, lens, or probe, the women told stories in which art/art therapy provided a vantage point for getting a better perspective. When Annie and I were talking about whether art therapy helped her make sense o f the experience of having breast cancer, she said, "The art...puts me in a space where I can start thinking about those things..." As Hilda was beginning to tell me about having individual art therapy sessions during chemotherapy, she said, " ...even though it was short term, I... I think it...it did give me some sort of perspective on what I was going through and the issues I was dealing with. " The women did not introduce their "clearer v iew" narratives by saying they turned to art therapy (or art) because they wanted to see their situations more clearly. They gave other reasons, such as wanting emotional support or wanting a creative outlet. However, in their stories about how art/art therapy was helpful, getting a clearer view stood out as a valuable, sometimes unexpected, benefit. In the "clearer v iew" narratives, seeing was equated with understanding. The women used the word "see" to mean both see and understand. In many o f the narratives, "seeing/understanding" was an initial event that led to other things (e.g., acceptance, resolution, empowerment, healing, decision), but in some of the narratives, seeing/ understanding seemed to be enough in itself and was the end of the story. For example, when I asked Bessie what happens after art/art therapy brought an important revelation, in this case a painful realization about a family situation, she said: You just go home and sort of weep about it a bit, and start to understand a few things, and then the old things are still there. But you have a new understanding of them, and then ... you can cope, you can understand. [Bessie] Ursula said very simply: "Once you understand something you lose the fear." Ursula's "clearer v iew" narrative was about getting below the surface first to see and then to show emotional scars in order to heal them. Her stories were about working with other women wi th breast cancer to make ful l body casts that symbolically showed emotions lying beneath the surface. 98 A striking feature o f the "clearer view" storyline was the women's implicit trust in what they revealed to themselves in their art. The core o f Bessie's clearer view narrative was her descriptions o f the power o f non-verbal (visual) expression to get past barriers and reveal what is "true." I asked her why she trusted images more than words. She held up a painting she had done in art therapy and said: ...Maybe you've learned not to trust what people say. You instead work out what they mean. Maybe that's what it is. But, I trust this. (R: 'And why would you trust this?') 'Cause I know it's true! Because it's totally true. It's there, you know, like, how can you deny it, it's just there! ... People don't mean what they 're saying, You can't always trust verbal cues. (R: 'But they mean what they paint?') Yes. They do. Yes, they do. [Bessie] For Hilda, having the "undeniable'''' truth o f her images "looking her in the face'" seemed to give her a shortcut to acceptance. She had individual art therapy for a few months during chemotherapy. As she cast her mind back to that experience, she said: ...And I remember talking about this...this whole mortality thing and I think just seeing what I'd drawn and talking about it kind of came to ... some kind of resolution for me.... It's like looking you in the face, you know, so you...you can't deny that what you have created is... is what's happening for you and so...you 're forced to accept it almost. [Hilda] I wondered why their images seemed more trustworthy to them than their words. Ursula explained it this way: I think when you 're talking to somebody, I think it's (sigh) How can I say? The other person's opinion, or view, sometimes quite unawares can come into play, you know. Whereas when you are the one, when it's your hand that is leading, putting it out there... it is definitely coming from your centre, from your ... your being, your energy... [Ursula] Getting a Clearer View: An Exemplar A n implicit trust o f her art imagery was central to a narrative of seeing more clearly contained in my interview with Patricia. Her "clearer view" narrative was made of the telling and re-telling o f a story in which seeing and understanding were synonymous, and seeing and resolution were simultaneous. The story was about seeing her situation more clearly and making a diff icult decision based on what she saw. She introduced the story by saying she chose to have individual art therapy sessions because she wanted extra emotional support at 99 a diff icult time and because she thought, based on previous experience, that doing something creative would make her feel better. She said she had a "strong feeling" she needed something creative at the time. Patricia said she had first had breast cancer 17 years previously and had been diagnosed wi th a recurrence less than a year prior to the interview. She said the recent diagnosis hit her hard because it came on the heels o f heart surgery and at the same time as other major health problems, and after years o f taking good care o f herself. She said that when she had breast cancer the first time, she ignored it as much as possible and put her energy into aspects o f her life that were meaningful to her, but that this time she was approaching breast cancer with a different attitude. She said she was "very, very overwhelmed'1 and had been feeling depressed at the time she went for art therapy. She felt she had been "beaten up" by disease and treatment and betrayed by her body and hoped that through art therapy she could "get rid of some of these feelings." Patricia had a few individual art therapy sessions with the art therapist at the cancer hospital where she was being treated. The story Patricia told was about "releasing" feelings and seeing her emotional situation more clearly through discussing two quick spontaneous drawings made in individual art therapy sessions. She said that once she had a clearer view o f her emotional situation, she was able to decide on a course o f action, which was to have chemotherapy even though she had promised herself she would never do that again. She explained that decisions about cancer treatment can be very diff icult because one has to consider the needs o f family members as well as one's own needs. In this case, she went against her own convictions. The events Patricia recounted had happened very recently and were not over at the time o f the interview. She had yet to live the consequences of her decision to have chemotherapy and she was planning to continue art therapy. She said she had made arrangements to do a couples' art therapy workshop so her husband could use art therapy to release and get rid o f his painful feelings, too, and so they could work out their feelings together. Her situation was similar to Bonnie's, who also had been diagnosed recently. Bonnie's haven stories were fresh in her mind and not over, as was Patricia's single story 100 o f expressing, understanding, and deciding what to do. Both women began wi th detailed introductory stories about the medical side o f their breast cancer that were followed by primary narratives—"haven" in Bonnie's case, "getting a clearer v iew" in Patricia's case— that continued through the entire interviews and did not lead to other narratives. There was an in-the-moment quality to both interviews, as both women celebrated what they had experienced in art therapy sessions. Patricia did not tell me exactly why she volunteered to be interviewed. She said her art therapist suggested that she might like to. My impression was that the interview gave her an opportunity to reinforce her conviction that art therapy had helped her make a life-and- death decision—as well as to tell her story for the sake of anyone who might like to hear about how quick and powerful art therapy can be. As was the case with Bonnie's haven narrative, in Patricia's "clearer v iew" narrative, her persuasion came primarily from repetition that amplified her main point (that art therapy helped her see more clearly what she was experiencing). This was augmented by repeated expressions o f surprise that positioned her as an eye-witness observer. As she expressed her amazement again and again, it was as though she was describing something beyond herself that could not be denied. She clarified her story as she repeated it and brought it to an evaluative synthesis when she answered my questions about creative activities making her feel better. The following excerpts from Patricia's "clearer v iew" narrative are taken from different parts o f the interview. And, so I went to see what would happen just to be able to get rid of some of these feelings. And I was totally amazed at what came out... You talk about things and that's one thing ... but when you actually take ... pastels ... and start just letting it flow onto the paper ... you 're not drawing any particular thing that you 're perceiving in your mind, you 're just letting it flow... Afterwards when you 're finished and you put it up and then you start trying to see what this means to you... it was totally amazing what came out. In the last session, I had basically drawn almost like I was in a mine shaft or a tunnel, and the essence that I was like a shaft of light but was not being able to get its way out. And it was almost like I really did feel trapped by my health and the problems that I had. And it was a revelation to me ... I found that it was very interesting and was totally amazed by what does come out from art therapy. 101 It kind of opened things up for you. You, you kind of get more of an idea of how you were feeling. And it was a bit of a release as well because you got those feelings out whereas before you were not even acknowledging them or, or even aware that you felt that way. So, it brought that to the surface and made you aware of really what you were really feeling. And it was a release. I felt better once I was able to look at that. And then I was able to make up my mind exactly what I was going to do and ... whatever the outcome is that's up to whatever happens I presume, but at least I was more clear about what I wanted to do and how Ifelt in this matter. It's a hard thing this because it's not just you, you know. You have your family that you have to think about and you can't make decisions totally on what you want to do. You have to consider how this affects everyone and if, for example, I opted not to take this treatment and the cancer got worse and I, you know, died, am I going to leave my family thinking 'Well maybe if she did this then she might still be here' or, you know. I think you have to look at every avenue. I could see that I really have to do something to work myself out of that [mine shaft]. You know, like to expand my energy and that I needed to basically go the route where I would get the most help. I never thought, I never presumed, I never imagined that that amount of information would come out of a, a small drawing that, that's on a paper... It was amazing how much did come out of that. I was surprised. It's very much like a counsellor. You know, someone you can talk to, but it's... the art therapy itself brings a direction and a symbolism that helps to bring those emotions and feelings out. Ifound it truly amazing. I was given insight that I wasn't aware of, which gave me a sense of empowerment and then I was able to make the decision that I wanted to from that. [Patricia] Patricia seemed very focused during the interview. After tell ing the story o f the medical side o f her breast cancer, she constructed her "clearer v iew" narrative and only that narrative. She elaborated and explained in response to my requests, but each time returned quickly to saying how amazed she was by what her images had revealed to her and how this had allowed her to make a crucial decision. Her sharp focus on the key elements o f her story echoed the swift and focused effect she said she had from art therapy. Patricia used the words "amazed' and "amazing" again and again. She did not talk about other things that had 102 helped her, as many o f the women did, or about anything that was not directly related to her story. A t one point she said that after a cancer diagnosis one finds out everything one needs to know and then focuses one's entire self on dealing with the situation. The interview was like that. She did not give me the impression she was reluctant to spend her time and energy on telling her story. Quite the opposite—she seemed eager to talk, and she seemed very open as she talked. As I was leaving, she engaged me in a complex conversation about political issues in such a way that it was hard for me to leave. Therefore, I interpreted the sharp focus o f the interview as a reflection o f her feelings o f urgency about her situation and o f the life- or-death significance o f the story she told. The only identity claim Patricia made during the interview was that she is someone who takes care o f herself. She said, "I do take care of myself I walk every day, regularly, and, you know, do exercises for my back and I don't sit around watching TV and I try and eat healthy." She made no direct value claims, but expressed a value about family indirectly when she said treatment decisions are difficult because the effect on family members has to be considered and when she said she had arranged to attend a couples' art therapy workshop wi th her husband because her cancer affected him. Patricia's narrative was about using art therapy to be a person who takes care o f herself actively and who considers what is best for her family. Throughout the interview, she seemed to be constructing a story that would make it be true to her and to others that insights from art therapy allowed her to make a bold, diff icult, and correct decision that could keep cancer from engulfing her life and keep her family from regretting that she hadn't tried "every avenue." Clearing the Way Emotionally: Thematic Overview The storyline I have called "clearing the way emotionally" came from narratives about processing feelings and releasing emotional pain. In these stories, the women talked about "expressing" themselves as a way to "release" or "get rid of" feelings, and about making clear emotional paths for themselves this way. This was a significant storyline in 12 o f the 17 interviews. The women's narratives o f "clearing the way emotionally" and "getting a clearer v iew" were interrelated. Although some of the interviews contained one or the other o f these storylines, in about half the interviews, the two storylines intermingled. For example, 103 Patricia's narrative o f seeing more clearly was intertwined with a narrative o f releasing emotion, as the fol lowing excerpt shows. I had asked her why creative expression makes people feel good when she said this: I think it's, as well, a release of some of the inner self that comes out with the creativity. Like, when you make something, you are putting something of yourself in it. Particularly clay is a real good example. I loved messing with that stuff. But you could really put your own feelings and things... of yourself. Part of you goes into that. ... You 're releasing some emotions and putting them out. I think that's basically what you 're doing. Feelings and emotions are coming through and it's being transferred from you to an object, either a drawing or a piece of pottery or whatever. I think sometimes the shape you use, the colours, the... particularly what you want to express has a lot to do with how you 're feeling within yourself. And it's somewhat of a release inside. ... You take those feelings and you transfer them onto that paper. And then you sit and look at it and while you 're doing that you 're, you analyze it and you 're feeling it and you 're getting rid of it. [Patricia] In some of these narratives, the women talked about releasing feelings about having breast cancer (e.g., Laura's narrative below). In others, they talked about unloading emotional pain they had been carrying with them prior to their diagnoses. This was the case for both Gwen and for Hilda. Gwen said she decided to devote herself to paint ing—to be an artist—after she was diagnosed with breast cancer at age 62. As she showed me photos o f her paintings, she talked about emotional issues she addressed and resolved by painting. " When I think about it, I did this picture, and it was kind of like, this is a part of my cancer thing too, to get rid of that feeling of not, of not pleasing [my mother]" As mentioned above, Hilda told stories based on her experience o f individual art therapy sessions she had while she was having chemotherapy. The stories were about working through feelings o f grief and loss about a family situation, not about having breast cancer. The following are some excerpts from Hilda's narrative o f clearing the way emotionally: ...And so, you know, it was major loss issues for me, at...at having to say I can't do anymore, I've done what I can do and she's an adult now, you know, she's gone and...and it caused me a lot of pain going through all this 104 and I knew, you know, coming up to being diagnosed with breast cancer that that was my major issue. Well when I started the art therapy, it was so obvious that the pain was still there ...this pain of having this daughter that I couldn't help. ...I decided that I was just carrying around this baggage that I needed to get rid of... It felt good to get rid of it rather than be trying to carry that around and go through treatment at the same time, you know. ...I remember coming out of the sessions and feeling really good. You know, just like, 'Phewww! Dumped that, let's get onF [Hilda] I asked some o f the women to explain to me why it was important to express/release painful feelings. Galen and Ursula, who talked about their own art making during the interviews, both spoke in terms of stagnation and toxicity in the body: Well, I think they just impede, you know, smoother lifestyle. Internal, external. And if you 're always fighting the angries, and you've got nowhere to go with it and, I mean, you could either internalize it, and get...depressed from it. Or externalize it and punch out walls, I mean, it just ... sucks up all this energy that could be used for a wholesome, more wholesome lifestyle. ... Hey, just the more congested it all gets, it gets more toxic... [Galen] It is a tool that you can reach into yourself and bring that stuff out that sits in there. Those fears, you know, the pain, and the fears, and the doubts, and the, just all that stuff. All the stuff, you know, you can, you can write it out, you can paint it out, you can dance it out. ... If something sits in a dark place, it doesn 't grow... There's no movement. You've gotta have movement to heal. You've gotta get rid of stuff. You know, it's just, it stays there, you know ...I feel really strongly about that. [Ursula] Although "clearing the way emotionally" was a primary storyline in the interviews, the women did not always give much detail in the narratives o f self-expression that comprised this storyline. Perhaps the material was too tender or too complex to lend itself to explanation in the context o f an interview, but that was not how it seemed. Other tender and complex things were explained in detail. It seemed, rather, that it went without saying. Serena said it was "just necessary" for her to keep an illustrated journal while she was going through treatment. She said, "... it was just necessary for me to put it down. To write... and to draw about everything that was going on. It was just necessary." Similarly, Brenda said 105 very convincingly that it was "really usefuF'to make a video diary o f her experiences, without explaining how it was useful. I started editing a [video] piece to tell the story, and it was hugely cathartic for me. It took a tremendous amount of time—that became more of a diary for me, but I call them emotional impressions to music. It's less than a documentary, but it's the best I show of my treatment process. And, it was really, really, really, really, really useful. And, I don't know, I've said I've probably saved thousands of dollars in therapy. [Brenda] Many o f the women told stories about clearing away emotional pain simply by expressing/releasing it. Others told stories about working through or working out emotions with art/art therapy—again without giving much detail about exactly how they did this. Donna simply said, " . . .it's helped me in trying to just work out all that emotional stuff that churns up... " Heather told a story about working through painful feelings related to childhood abuse ("the old stuff') by making a painting in group art therapy. When I asked her to explain how this happened, she pointed to images in the painting and said: ...That's the old stuff. That's me looking out at the future with bars across, like being stopped. The bars are stopping me, and then I just started to feel better and I started to feel like this was an adult and this is a healthy adult and maybe this adult could heal this hurt here and that is where I started to do hearts. [Heather] Some suggested that the art/art therapy helped them work through their feelings by focusing their thoughts and feelings and holding their attention. "Clearing the way emotionally" was not a primary narrative in my interview with Serena, but part o f a story about why it was important to keep her own art practice going after being diagnosed with breast cancer: "... if a woman is going through breast cancer ... whether she's painting, drawing, it's, it's a way of gathering your feelings" In my interview with Bonnie, "clearing the way emotionally" was a minor narrative that bolstered her haven narrative that was about the many benefits o f having the emotional support o f art therapy. Bonnie said one of the benefits was that art therapy helped her focus her thoughts and feelings, and as a result she stopped feeling so much fear and shame: "And that was what I liked about the art was just to focus ...and then it's when you 're asked to 106 explain it... again it helped me think and focus." Similarly, Sarah told this story about her response to the news that another tumour had been found. I started quilting that day and within two weeks I'd finished the quilt from ... first snip to... last little... needlework, and it... Ireally worked through all... the issues that I was... really suffering over. And I decided that, well maybe my life will never be the same as it was, but it was...my life now had, I thought had more meaning and... that my... feelings were much stronger, my emotions were stronger and that it was perhaps time to put... this emotion...and this...feeling to good work, and I decided that... somehow I would try to make a difference, that breast cancer was part of my life and so be it, that... I would find some way to... make it a positive part of my life. All the time I was...I was sewing on the quilt I was...Iwas thinking about things and I do that anyways when I'm quilting, I still do that, but it was particularly intense and I have... I have a pretty understanding husband and I just...I just locked myself in there, in my...in my workroom for...for that two weeks and... and just as I was...I was sewing the quilt I was thinking very, very strongly about my life and how it had changed and ...and how, yes it will never be the same again, but...but it is more meaningful and... and it just... it just helped me spring from one... one step of the grieving process to another. [Sarah] I asked Sarah i f quilting allowed her to stay with her thoughts and feelings so she could work them out, and she said: That's right. Yeah. It's...while I'm quilting, it's...I'm almost in a different world. And it's... sometimes I'm working through things that are difficult and other times... it's coming to grips with things about, about life, and how I feel...about it, how I feel about having had breast cancer... [Sarah] In some o f the stories, physical movement seemed to be the key to working through or working out emotions. Meredith said she was receiving art therapy at the time o f her breast cancer diagnosis but later gravitated toward forms o f expression that were more active and physical, like mask making and theatre. She said the fol lowing as she showed me a mask she had made in a workshop: You close your eyes, you work with the clay and you make the mask really from the inside out. And then you work with it in terms of directions, you work with it in terms of colour so there's a lot of movement and... this was critical 'cause...and this was a movement. This one really helped me move through it. [Meredith] 107 Getting a Clearer View and Clearing the Way Emotionally: An Exemplar The importance o f action and physicality for releasing and moving through feelings was stated most strongly by Laura, a professional artist who grew up around art therapy. A t the time of our telephone interview, Laura was very i l l wi th metastatic breast cancer. We had to reschedule the interview several times for logistical reasons. When we were finally able to do the interview, Laura began her account of art and healing without setting the stage by telling her cancer story, as many of the women did (especially those who had been diagnosed recently), or with some other kind o f introduction. She spoke slowly, perhaps wi th physical effort, which gave me the impression she was telling me the essentials only. Hers was one of the interviews in which the two storylines o f "getting a clearer v iew" and "clearing the way emotionally" were intertwined. Laura made numerous identity claims and value claims during the interview. For example, she said she believed it is necessary to go through the grieving process and to have some way of dealing with the emotions that arise when one is i l l wi th cancer: "... you need some way to deal with it, 'cause it's just, it's just too much emotion ... fear and anger, and all the things that come up. ... You have to have some way to deal with it." For her, the feelings need to be let out and expressed. She also said that ever since she was a teenager she has used her art to get a better view of what is going on for her. Laura used the word "satisfying" frequently as she described being physical, rough, and destructive wi th her artwork. She described herself as someone who does not let her aggression out (and thinks she should) and who does not like to hit things or people: "I don't like to just explode with feelings at any moment." She explained that she was so highly trained as an artist that it was hard for her to be spontaneous or to make things that do not look harmonious. Therefore, to release her feelings about cancer, she found ways o f working that were a departure from her usual (professional) way o f painting and were more physical. She described herself as someone who is sensitive enough to her feelings "to know when to express them and how to do it." She said she was not a big talker and, although she wrote sometimes, her modes of processing and releasing feelings were intuitive and physical. She discussed her involvement in dance therapy. 108 Laura said she believed in dealing with cancer by accepting it rather than fighting i t—a f te r all, she said, her cancer was part o f her body and had made her "a deeper, richer person"—but she thought a more aggressive attitude might be better. She expressed the complexity o f simultaneously accepting and resisting cancer, and her own ambivalence: I can't fight it or hate it all the time because it's part of my body, so I have to (slight pause) accept it while it's there, and I'm living, and it's living. And that's not really a very healthy attitude (laugh). I should have a much more aggressive attitude, but it's part of my nature to be like that. We 're coexisting together, and I'm still here. It hasn 't got the better of me. [Laura] Laura emphasized that art was integral to who she was and could not be separated from other parts o f her life. She said she was always processing her feelings when she was making art, no matter what kind o f art it was, and that i f she did not make art, she would feel o f f centre. She described art as a way o f meditating that is physical. In this context, she said love and spirit are what matter most because one cannot "take all this other stuff with you," and that one has to keep love and spirit kindled. I began the interview with Laura by simply asking her to tell me about her art in relation to her breast cancer. She immediately told a story about seeing things more clearly fol lowed by two stories about physically releasing feelings. Okay, well the first instance of... I remember after I had my first lumpectomy, 'cause I was afraid that... how disfigured I was or the scar looked, and so I did a selfportrait of ...I don't think I inclu- no I didn't include my head, just that part of my body, you know, from neck to the waist of my ...(laugh) so that I could... and after drawing—I did it fairly detailed, realistic drawing as I could—and after doing the drawing, I realized that... it wasn't really as bad as I had thought. I mean it didn't look as awful, and, 'cause I had been looking to do the drawing, I had to stare at myself and look at and really inspect it. ...So that was a positive experience... Well, it's always... whatever I've done has always kind of helped me see clearer what's going on. ... Cancer cell pihata is another good example. This year for my daughter's birthday ...she had the idea of making a cancer cell, so that nobody would object to hitting it, and breaking it, because of course, you want to knock the thing around. So she and I made one ...just made a hideous looking, you know, lumpy thing... It was very satisfying, because it turned out I was the one that actually broke it... That was a very satisfying experience of being 109 able to bash the pihata ... I actually, I've had lots of good art experiences. My daughter, she's 7, we would make ugly blobs of clay and then we would slice them up with knives and pound them with our fist... Again, a very satisfying way to get very physical. And destroying the cancer cells, or thinking about imagery. [Laura] As we continued to talk, Laura's stories o f seeing more clearly and releasing emotions intermingled. She had requested that I give her questions to respond to. After she had told her first few stories, the interview became a conversation. Laura was the last women I interviewed and I told her some of the things the other women had said, for example, that art/art therapy was a haven for them. She gave her perspective on these things (e.g., she said she does not use her art to escape) and told more stories about her art experiences. The stories included detailed descriptions o f the artworks that were the focus o f the stories and that I could not see as we talked on the telephone. In this way, she provided evidence for the points she was making. The fol lowing two sections o f her narrative are about simultaneously getting a clearer view, releasing emotions, and transforming emotions through making art. The stories l ink "getting a clearer v iew" with expressing emotional pain and self-soothing. I had just checked wi th her to make sure I had understood her first three stories (above), and I had used the term "striking back." This prompted her to reflect on what she had said and to explain the importance in terms o f letting feelings o f aggression out, being physically active with her art, and allowing herself to make things to destroy. I guess a lot of the times I don't let my aggression out... I don't like to hit things or people (laugh), you know, that kind of stuff. To actually allow myself to create these—and also the kind of artwork that I normally do is... a lot of time on it, so carefully and the colours are harmonious—and so to do the kind of work that, where things are active, they 're fast, they 're rough, they're...ugly combinations of colours... The textures aren't all pleasing to the eye and then to destroy it... to create it, in a mind in which is was meant to be destroyed and destroy it. Very satisfying. It's exposing feelings that I have about the cancer or myself. I did one felt picture ...It was kind of one where I allowed myself to feel sorry for myself (laugh), and make myself naked, and kind of hunched over, the knife above my head, the breast cut off, dribbling blood and the cancer cells around... 110 So then I felt really bad that this had happened to me, but that's part of it, you have to go through the grieving process. Crying that I had to go through this and then ... in the middle of the picture, I think I had made... a kind of cave, and cancer cells in the cave. And then up in the sky, it was like, okay this is enough of horror. I put (pause) my breast in the cloud and surrounded by yellow (slight pause) light, like sunlight, and a pillow, a cloud pillow, and wrapped it up so it was all nicely taken care of. But it soothed my-myself and comforted myself that it was okay, I was going to be okay. ... Even when Em doing paintings that don't have anything to do with the cancer ...Em always processing. I like the process of painting, and when Em painting Em thinking of how Ifeel about things. [Laura] Later in the interview, I asked Laura to elaborate on a story she had told about doing a lot o f sewing after surgery to symbolically stitch herself up, and using creative expression to put herself back together. This conversation about artistic analogues for physical healing, with its emphasis on the physical, prompted Laura to say more about the physicality o f art making. ...I enjoy ... to do the kind of crumpling and getting out the aggression of crumpling paper or..., work like that, or doing things like that. ... This hands- on messy, crumpling, physical part, I, I really enjoy that. I feel like that's very healing for me, because it's like massage, or pounding, or re-shaping, or... That kind of activity feels very satisfying, like it's really doing something. [Laura] The two storylines of "getting a clearer view" and "clearing the way emotionally" continued to intermix as the interview went on. We had been talking about art as a way to feel connected to a larger spiritual force when Laura spoke about art as meditation, which led back to "getting a clearer view." ... If I don't do it, sometimes then I feel like I'm lacking my... getting off centre ... like I need to get to my meditation (laugh) to, to paint. And when I do, I sit down and start painting, sometimes it's very hard... and I'm not getting what I want. But Ifeel like... if I don't, I don't feel right about myself for the day. The final result mightn't always be what you wanted or desired, but...it tells you different things about what's going on inside... even when I was little, or in highschool, I'd call my drawings 'messages from the interior, 'you know, and then kind of find out, well, what's going on with me. [Laura] I l l I asked Laura i f she gets the messages just from looking at her art or i f she has to do something more. She answered by telling a story about getting a clearer view and clarifying for herself the attitude she would like to have toward her situation. A moment later, she said that one has inside all the answers/remedies one needs. Well sometimes I write, too. But, yeah, just by looking ... Like the other day I was painting with my daughter. I was looking at this little watercolour I'd done that's hanging on my wall. And I started with some flowers over in the corner, and I put a rabbit in, and a sea, and then I put a boat in, with—my favourite colour's magenta and hers is yellow—so both of us are sitting in the boat. She's supposed to be driving the boat, but we 're sitting there in the sailboat, and my hair, that was once long, but no longer is. Anyway I painted it long, and I'm just sitting there, and enjoying... the boat ride and...I didn't know when I started the picture that's what was going to come up... and it seems like at this point in my life, I'm not in charge of my own boat. Other people are, but my job is to sit, sit and relax, and go where the wind takes me. ... if I enjoy that, then it's okay, and it'll turn out okay. ...People do run all over the world trying to chase after all the cancer cures, but, I don't know (laugh). I think the answer really is just inside, wherever you are. [Laura] As the interview went on, Laura put more and more emphasis on the importance o f releasing emotion through action and physicality. At the end of the interview, when I asked her i f she could summarize how she thinks art making can help wi th healing, she started her summary wi th comments about seeing more clearly and releasing emotion, and ended wi th an emphasis on physical expression. ... When you start analyzing your painting, you configure out all kinds of things. It's fascinating...to see where one is ... I think it's a good way to get in touch with one's feelings. Certainly, going through this process, everyone is going to have a lot offeelings. ...I think, expressing them, and letting them out, and getting to know what they are, and allowing oneself to go through all the stages, you know, shock and horror, and grieving ...I mean, you need some way to deal with it, 'cause it's just, it's just too much emotion—fear and anger, and all the things that come up, you have to have some way to deal with it. I think that getting in touch with those feelings ...getting the sort of the kinesiology, or the physical, the... touch of... the anger, getting the anger out, and pounding cancer cells, or something... That's a good release, too. So it's 112 not just an intellectual exercise that, but physically releases the anger, too. That's important. I can't imagine trying to live life without art. [Laura] Laura's narrative contained more detail than the others about how making art can give a clearer view and clear the way emotionally. Perhaps this was because Laura was a professional artist who had a life-long familiarity with art therapy. The first story in her narrative was about getting a clearer view o f her body by doing a self-portrait and seeing that "it wasn't really as bad' as she had thought. A later story was about looking at a painting she had made and seeing that she can let other people 'drive her boat' while she relaxes and enjoys the ride. These stories were convincing corroboration o f her assertion that one's art gives one a clearer view o f what is going on and show why it can be worthwhile to use art this way. They were about seeing things in new ways and feeling better as a result. They reinforced Laura's artist identity by confirming that it is useful to make art. The emphasis on physical expression in Laura's narrative, and on the satisfaction this brought her, f i t with her stated beliefs about how to deal with cancer (e.g., release feelings) and her identity claims about how accepting and aggressive she was or could be. Her stories about art and physicality created a vision o f letting aggression out while still being someone who does not hit people or lash out toward others. The stories also showed how physical expression connected with other things, for example, physical healing. According to Laura's narrative, her art registered what was happening with her inner self and influenced her psychic and bodily self. Her art showed her what was happening in her interior, and this mirroring went both ways. Her art accurately mirrored her self, and when the reflection was changed, the self changed, including the bodily self. Summary The two storylines "getting a clearer view" and "clearing the way emotionally" show how the women valued the processes o f revealing themselves to themselves in their art and clearing the way emotionally with creative expression. In their narratives, it is as i f an external power made these two things happen. But the women made the clearer views and the clearer paths themselves (sometimes with the help o f an art therapist). 113 In some o f the narratives, these two storylines were intertwined. The links between expressing, releasing, seeing, understanding, resolving, and feeling empowered were strong and complex. Releasing and seeing were simultaneous and synonymous in some of the narratives, as were seeing and understanding. The narratives o f seeing and releasing that were constructed by women who told stories about art therapy (e.g., Hilda, Heather, Patricia) were predicated on the idea of seeing as a precursor to releasing. Once something was seen i t could be resolved and/or released. However, in the narratives o f releasing constructed by women who talked about their own art making (e.g., Sarah and Laura), seeing was not a necessary first step to releasing or resolving feelings. In Sarah's narrative, she resolved her feelings through the process o f quilting without using the quilts to show her what she was feeling. In Laura's narrative, she released feelings physically, by pounding and crumpling, not by creating images of the feelings she wanted to release. She could have released her feelings wi th her eyes closed. The benefits the women described in their "getting a clearer v iew" narratives depended heavily on non-verbal, visual expression, and, in most cases, on interaction wi th a therapist. The benefits described in the "clearing the way emotionally" narratives also depended on visual expression—talking would not have been enough—and in some cases on visual expression that was dynamic and physical. Negative Cases Narratives o f "clearing the way emotionally" appeared in 7 o f the 10 interviews wi th women who talked about their own art making and in 7 o f the 10 interviews with women who talked about their art therapy. "Getting a clearer view," on the other hand, was derived mainly from narratives about art therapy, not independent art making. There were two interviews that contained neither of these storylines. Galen and L i ly both talked about their own art making during their interviews and both said they did not use their art making as therapy. Galen talked about past experiences with art therapy related to things other than breast cancer and said that when she turned to art making after her breast cancer diagnosis it was not to "purge" her feelings, as she had done before in art therapy. It was to bring positive energy into her life. L i ly talked about another woman she knew who used her art to get her painful feelings "out of her system," but said she did not use her art 114 this way. She said she did not want to "fill her life" with fear and dark feelings and did not give attention to thoughts and feelings about cancer after her diagnosis. She said she used art for pleasure and excitement. Expanding and Enlivening the Self In the previous section, I discussed two storylines that began to show what the women did in the haven o f art/art therapy and why it was important to be in a haven where they could make art. The storyline I discuss in this section, "expanding and enlivening the self," was in 16 out o f the 17 interviews. It shows more o f what the women did while in the haven and further illustrates how visual creative expression mattered to them. The storyline is made o f narratives about feeling good about oneself as a result o f being creative, using more o f oneself, feeling a connection to energies beyond the self, and feeling vitalized by art making. This storyline is an extension o f the "haven" storyline, in which there was a focus on being oneself, not being dismissed, and seeing that cancer had not taken everything away, in other words, seeing that important parts o f the self were intact and perhaps enhanced as a result o f cancer. It overlaps with the two storylines "getting a clearer view" and "clearing o f the way emotionally," in which revealing the self to see the whole self, or more o f the self, was an important feature. The narratives in this storyline could have been categorized in other ways. I pulled them together into "expanding and enlivening the s e l f because as I read and reread the interviews, I got an image of a woman's 'se l f being deflated by breast cancer, or at least being threatened by diminishment, and of this being counteracted by art making and art therapy—as i f a diminished self could be pumped up and reinflated through creative expression. The women talked about diminishment and potential diminishment in different ways. Some talked about being broken or damaged, or feeling robbed. Hilda said chemotherapy "knocks you down" no matter how strong you are. Laura talked about f ixing her broken self wi th symbolic mending. Patricia said she felt betrayed by her body that in spite o f her best efforts to take care o f it was suddenly breaking down in multiple ways. Nine o f the women told stories about having the rug pulled out from under them in one way or another. Several had stories about being diagnosed with breast cancer even though recent 115 mammograms had shown nothing suspicious. Five o f the women said they had to stop doing the jobs they had been doing when they were diagnosed. Bonnie said it felt as i f her former self had disappeared after her diagnosis and that she felt lost and dismissed. She said she used art imagery to create a sense o f future for herself when she had no future. Many o f the women talked about feeling diminished by having their identities reduced to "cancer patient". Gwen said she would have felt she had nothing but "the damn cancer" without her art. Not all the women made comments about diminishment, but there were enough to indicate a need for a counteracting force—something constructive and powerful. A t first I thought the important thing about this storyline was the beneficial outcomes the women mentioned—inner strength, confidence, peace o f mind, sense o f control, optimism, hope—that perhaps were results o f being in the haven and working on getting a clearer view and clearing the way emotionally. However, the analysis showed that although "expanding and enlivening the s e l f followed from the other storylines in some interviews, in most, it stood alone and reflected processes that were important for their own sake. I have grouped the narratives that comprise this storyline into four categories that I discuss separately. These are: "enjoying being creative," "using more o f the self," "connecting to a larger energy," and "vitalization." Enjoying Being Creative: Thematic Overview "I think there's great satisfaction if you've made something and it's from you." Almost all the women who talked about art therapy told stories about feeling good about being involved with creative expression. The women who talked about their own art had stories about this, too, that were often phrased the other way around, that they did not feel good about themselves i f they were not making art. One o f these women, Galen, said when she sees herself making art, it is a sign she is well. The women spoke with pride about being creative. Their stories displayed a belief in the inherent social value o f creativity and were often tinged with regret about not having been involved with artistic creativity previously as adults. When Annie was talking about what she has gained from being involved in group art therapy, she said her pride in her creativity gave her an opportunity to have good feelings about herself. 116 And also it gives you an opportunity in a way ...I mean, I didn't think I could create anything artistic. When I showed it to my friend, Chad, he went, 'Oh, wow!' and he stood looking at it for like 20 minutes, you know, and I'm thinking, that's what they do in the Louvre, to very famous artists. Oh my God! Somebody's looking at something I created. This is incredible! [Annie] Several o f the women who had not been involved in art before receiving art therapy told stories about wanting creative expression to be ongoing in their lives. For example, Donna said this about art therapy: ...It got me into thinking that I want to nurture that creative...side, that I don't suppose since being a very young child I'd ever really done anything with. I've never really been a writer.... I did dabble in photography for a few years ... But now... it definitely has a place in my life... I'm... learning to nurture that creativity that absolutely everybody has and is an important part in being a healthy, happy person. And I never thought that before. [Donna] Bonnie said she had always been interested in art, but, like many adults, did not think she was capable and had been afraid to try it. She said this as she was evaluating her experience of art therapy: And also [art therapy] let me explore the new directions for me 'cause art is something I've always been interested in but never thought, well, I could draw and... (both laugh) but not that I can draw any- Yeah, and it, so it was good... So I got over the fear of drawing and I think also too with it ... I can say I learned to live again. [Bonnie] She went on to talk about how she has become more creative in all aspects o f her life. In some o f the narratives, a key element was the satisfaction o f offering something meaningful to others. This was the case in Sarah's narrative about involving other women with breast cancer in group quilting projects that have resulted in quilts for women with breast cancer to see in hospitals where they go for treatment: "I got to include a lot of women in those two projects and it really was satisfying—very, very satisfying to me to do that" Later in the interview, she added, " / was incredibly moved that... something that I'd made to help myself helped somebody else, and that was really powerful. ...Ijust felt so good after that." A l l Galen's stories about art making were about things she had done or was doing for others. Her first story was about wearing flamboyantly decorated hats to the cancer 117 hospital and handing out cheerful stickers to make people smile. She said the reactions she got to her death-defying sassiness "stroked her ego." Most o f what Ursula said had to do with including other women (and men) with breast cancer in public art projects, and how these people became involved because they believed their involvement would help others. Sarah said her quilting led her to be a community advocate for women with breast cancer. Brenda's art making was also linked wi th advocacy. Both Sarah and Brenda talked about paying back by using their art/advocacy to help other women with breast cancer. When Sarah was telling the story o f the first group quilt ing project she organized, she stated that it "was meaningful for them and it...made me feel like I was paying... something back for the treatment that I'd got and also including all these other women... who had made this same journey" When Brenda was talking about the links between her art and her advocacy, she said: I felt this great need to, if I'm going to survive, to give back to a certain level. ... It wasn't quite like a life for a life, or, you know, the cost of my life is that I have to pay this back, but there was a way that it felt necessary to pay back, or necessary to make the changes I'm capable of making. [Brenda] The pleasure o f making nice things and the satisfaction o f including creativity in one's sense o f self were part o f this storyline. At the core was the profound gratification o f making things that are meaningful to others—something that would clearly be very important when one's ability to contribute has been called into question by illness. Enjoying Being Creative: An Exemplar Gwen was diagnosed with breast cancer when she was 62. Her narrative about enjoying being creative came at the beginning o f the interview and merged with a narrative o f vitalization as the interview went along. She provided a context for the narrative by telling stories about difficulties she had experienced in her life and how she had never been in a position to choose her life path herself until she had cancer. She said that at that point she made a sudden and conscious decision to be an artist. This was significant not only because it represented taking control o f who she would be, but because her earlier interest in art had been extinguished by the dynamics of her marriage. She showed me photos o f her paintings and drawings as we talked. Most had something to do with breast cancer. She said 118 she was very pleased to be exhibiting and selling her work. A striking feature o f her narratives was that most o f what she said had to do with cancer helping her be an artist, rather than art helping her with cancer. She linked negative life experiences with getting cancer, and linked making art wi th surviving cancer. Gwen did not tell me exactly why she volunteered to be interviewed. It was clear that it was important to her because she responded to the email announcement she received very quickly and then went to considerable effort to meet me. She chose to come to my location and had to arrange for a ride for the hour-long drive. I assumed she volunteered as part o f her general involvement in art and breast cancer activities. During the interview, she told a life story that started wi th her youth and ended with her present self at age 70. It seemed that she used the interview as an opportunity to integrate her feelings about her current artist self into her life story. The fol lowing excerpts are from different parts o f the interview, beginning with the first things Gwen said. Well, the art came first, before the breast cancer.... I was an art major in college, but...that was a long time ago, and I gave it up, sort of, when I got married... I got the house, and the kids ... I started the life drawing class, and I just took to it. I really liked it. And, I was...maybe a couple of years into it, I guess, when I... I found a lump on my breast and, this was in '94. ... I was still taking the art class... when Ifound out I had cancer. I really thought I was going to die (laugh) right then. I mean, I, and I really felt awful about it, and I wandered around ... one day, looking for the Cancer Society. ...It was the luckiest day of my life 'cause I found The Wellness Community. ...It was free and they had counsellors, and they had group meetings, and they had all these resources for people who have cancer. ... I went to the breast cancer meeting Tuesday nights ... when I was in ... the first group, a woman ... came in and she introduced herself as an artist, and I thought, 'Goddamn, that's what I want to be is an artist... that's what I want,' you know, T want to be able to say that about myself.' Even though I didn't do any art therapy in the group, I certainly did a lot in the other classes I was taking ... and my colour sense really grew ...I thought to myself... while I was doing the art after being diagnosed and in treatment, I thought, 'What have I got to lose?' you know, 'Why am I so tentative with how I...? What the hell, you know, (laugh) I mean, I may die here.' So, 119 I really just kind of exploded with colour, I started using pastels, and did portraits, and figures in pastels. ... I've just been doing my art ever since. And... it's a lifesaver. I mean, it's something that I should be doing, I think. I mean, I'm getting, I get positive feedback most of the time for my stuff. ... Anyway, and my cancer has stayed away. ... I feel good about what I am ...Ifeel really good. ...I don't know what I would have done without it because it was lifesaving for me. (R: What do you mean by that?) Well,... Iwouldn 't have had anything but (laugh) the damn cancer... [Gwen] In her narrative, Gwen hinted that art making may have helped her survive cancer without saying it outright. What she convinces us o f is that cancer provoked her to be an artist and that this brought her a positive sense o f self and satisfaction that she had not had before in her life. To make her point, she said that when she thought she might not live much longer, she dared to become an artist because she had 'nothing to lose.' She provided evidence o f the wisdom o f the decision by saying that she has had positive feedback from others and that she feels good about herself. She probably would not have been able to provide evidence that turning to art saved her life, but she called her art a "lifesaver," to let us know that the effects on her life and sense of self have been profound. As Gwen spoke, she made an identity claim that she had wanted to be an artist when she was younger but did not go forward with this due to competitiveness with her husband while in a marriage that she said was not good. She underscored the absence o f positive identity before taking up art when she said she felt there was "no me" at the time o f her divorce, and that without art, she would have had nothing but the "damn cancer." During the interview, she gave extensive background information about pressures in her life to make the point that she had never before made a free choice about what she wanted to do. She made it clear that it was important to finally choose for herself after her cancer diagnosis. As she talked about this, she said: Yeah, that's the first time in my life I got some kind of feeling, 'That's what I want to be.' And, so I've just always been grateful that I lived long enough to do that because I, you know, I'm seventy years old now, so... and I was 60 something during all this stuff. Some people don't get that chance. [Gwen] 120 Using More of the Self: Thematic Overview "It doesn't seem like a different me, perhaps a more me, me" One o f the ways the women explained the importance o f creative expression after their diagnoses was by saying art/art therapy lead them to use more o f themselves or to be fuller selves. The narratives that contributed to this storyline came from 12 o f the interviews. Almost all the women mentioned this as a benefit o f art making and art therapy. Many o f the stories were about accessing intuitive or spiritual aspects o f the self. For example, Patricia said this when I was asking her why it makes her feel good to be involved in creative expression: I really don't know why. I guess it's because you 're using a part of yourself that you don't normally use, that you 're touching maybe an inner aspect of yourself, maybe a spiritual part of yourself. It's an expansion...there's an expansion that takes place. [Patricia] In some o f the stories, the point was that it was necessary to access these aspects o f the self to heal because rational ways o f being are not enough. At the end o f my interview wi th Heather, when she was giving me an evaluative summary o f the stories she had told about group art therapy, she said: [The] pathway [art therapy] gives you into your ability to heal yourself is ... just so profound and so valuable and so important in...self-healing because it opens a ... connection with yourself that is intuitive and not necessarily conscious. It opens that pathway that allows you to use additional channels in which to heal yourself. ... The allopathic part is only a little part of healing, of getting you better. It's important and I'm not putting down that part, but it's only one part of it and all these other parts...you know, if you don't do this, you 're going to go get cancer again. [Heather] In other stories, the point was that the self gets diminished by the experience o f cancer and needs to be fi l led out again. Hannah's stories were about her own experiences with breast cancer and also about her work as an art therapist in a hospital cancer ward. They were about rekindling the life force with art and helping people experience themselves as whole. She said this in reference to her hospital art therapy program: This is what I'm seeing with patients now... You 're so focused on doing what you 're supposed to do, finding out about it, that that's all you think about. 121 I mean, forget that you 're somebody else as well. You know, you 're a person with a past, you 're a person with presumably some kind of a future... You are a person with a past that has talents, and interests, and humour. You 're a fuller, richer person than what Cancer World makes you be ... The artwork is the medium that you get to that fuller person. [Hannah] Using More of the Self: An Exemplar Brenda was 32 at the time of her diagnosis and was pregnant wi th a second child. She decided to terminate the pregnancy and thus had two major emotional events to deal wi th at once, both o f which profoundly affected her physiology. She described her cancer diagnosis as "phenomenally shocking" and explained in vivid terms how it affected her body and her life. She had been working as a video producer, sometimes in collaboration with her husband who was a video artist and cameraman. She said he was "the creative one" while she was the "efficient" producer, organizer, and editor. She said she could not continue her work after her diagnosis because of memory loss. Most of her account was about turning to artistic expression as something she could do while she was going through breast cancer treatment and recovery, and activating a new part o f herself in the process. Her perspective on this was that life is too short to be a social conformist and that she needed to abandon concerns about social acceptability while she found a new way to be. The fol lowing excerpts are from different parts o f the interview, beginning with things Brenda said as she was beginning her story. So, all the pregnancy hormones were gone. I started chemotherapy and Tamoxifen all at the same time. So, I had this, like, hormone dump that made it impossible to think and remember. It was very difficult. No, not think so much. I had an active creative or thought life, but no memory at all, and, so, being an efficient person wasn't possible in that way of being creative. Very disturbing. So I began to find other ways to express that were... it feels like a complete personality change. It doesn 't seem like a different me, perhaps a more me, me. Maybe one that wasn't as easy to get at if the surface stuff's an easier place to land. The most obvious easy place for things that I had facility at was where I'd spent my time, and that wasn't available to me, so, I had to drop down into myself and find out what else was there. As Brenda explained how she moved into art making, she told a story o f first making a large collage with her get well cards, then making a video about her breast cancer experience 122 (her first experience o f the creative side of video making), and finally taking up photography and turning it into a career. She explained that she made a collage with the cards because they were "scary to her and she wanted to turn them into something "powerful" to her. I started using my camera and finding movable humans, and it really started my interest in photography again. And, actually a career in it, I mean, in that I have a viable product, and sell them... ... There's a great Ani DiFranco song when she says, T don't care if they eat me alive, Fve got better things to do than survive. 'And, what that means to me is that, I think, humans, at least in this time and space, and where Fm used to living, spend a lot of time doing what they think is appropriate, and it may not always have much to do with living, at least finding out what pleases us, so... I don't have much interest in surviving if it's what, not in a life or death way, but in the looking good, doing the right things way. Brenda's art making was linked to advocacy for women with breast cancer. However, she said that she did not want to be too involved in advocacy, because it was easy for her, as being a producer was easy for her, and it did not necessarily support her desire to develop new parts o f herself. That producer part of me, that's the easy place, the easier place that I have facility. And it's much more interesting to be the artist who doesn't feel like an artist, that has acceptance in an art community, has, you know, people paying me, which is another form of acceptance, and yet, internally it doesn't feel like me, and much more interesting to figure out how to be quiet enough to do this work. I was telling a friend of mine ... I sort of grew up an athlete, and... it would be less strange to my family of origin for me to tell them Fve decided to become an Olympic speed skater at thirty-seven than it would be to tell them Fm an, Fm an artist, and Fm... and I primarily shoot nude women, and it's the venue of breast (laugh) cancer. It's just bizarre to them that I would... so unlike their sense of me, and my sense of me. But, you know, going to be a really kick-ass advocate, an activist, and making a huge difference is the easier way for me. And, I got to have a lot of that already, but I haven't had a lot of this. And, the other thing I like about the photography is it has nothing much to do with me. It has everything to do with what I show you, but it has nothing to do with sort of my personal charm and charisma, which has been a tool, and useful, and I understand it. But, I like that I might be able to figure out how to communicate in a way that isn't reliant on that because cancer does not give a shit about personal charm and charisma. It did not help me one bit. It 123 helped me in the medical community get response, but... So, it became a place I didn't want to rely on quite as much, and find a place that I could build. ...Ifeel like a different human being than I was. I don't feel like not me. I definitely feel like more me, but that I had this facility in the easy sort of topical way, that fits very nicely with the American work/worth ethic, and looks good, and is, has a lot of agreement, and I loved it, and I could very happily exist. I mean, I, I love the life I have, and it's way richer and deeper than if I had not been diagnosed with cancer, but I'm, I'm fond of saying I'd much rather be a spiritual dolt and, you know, have a 5-year old, and a 9-year old, and be doing what I was doing. I loved my life before, no doubt about it. I'm not one of those blessing of cancer people. I'd rather have skipped the blessing, but given that I had a big way of looking at my life, I did get to do that, and life's short so I want to do this. [Brenda] Brenda made numerous identity claims during the interview, more than any o f the others. Most o f her stories were about remaking her identity and redefining who she was. She was the youngest woman I interviewed. She told many stories that had transformation as their theme. Not only did she describe turning "scary" get well cards into a collage that would be "powerful" for her, she told a story about turning the remains o f a burnt-down house into a mosaic, and she showed me stories she wrote in which she turned the pain o f cancer into humour. These stories were about taking something that "comes to you broken" and turning it into something of value. Through her art, Brenda found a way to bring new meaning to her life that seemed to go beyond what she had experienced prior to her diagnosis. She convinces us o f the value o f her new involvement with art making by saying that it was worth giving up an "easy" way o f being and worth unhooking herself from social expectations and conventions, in other words, it was worth considerable professional and social risk. When I asked her i f she thinks the deeper, more spiritual part o f herself is more reliable, she said yes. Connecting to a Larger Energy: Thematic Overview " ...when you 're in that stream, I think just being there that's the healing part." "Connecting to a larger energy" was the primary storyline in two of the interviews. Meredith's narrative was about social energy, creative energy, and Jungian archetypes. Serena's narrative was about connecting to creative energy that exists in the ether, being 124 pulled out o f mundane concerns, and being engaged with life. Meredith and Serena described these energies as transpersonal, which is to say beyond the self, and both talked about them with great confidence. They described what seemed to be long-standing, solidly held beliefs. Both said it was crucial to connect with these energies when they had breast cancer. Other women seemed to be talking about similar things when they talked about connecting with other people through their art and when they expressed their delight about making things that seemed to happen spontaneously, as i f some other force was responsible for what had happened. Connecting to a Larger Energy: An Exemplar Meredith had been diagnosed a year and a half before the interview at age 49, in a city where she had no family. Her stories were about art therapy as well as other art activities. She said she was "swamped'' on all levels—physical, emotional, spiritual, intellectual, and existential—after her diagnosis. Although she had not been working as an artist professionally prior to her diagnosis, she had been making drawings for many years, often in relation to traumatic experiences. She explained that she had extensive prior experience with healing imagery and psychotherapy. She had been working with Jungian archetypes in particular, and said, "I knew myself well enough that I knew it was that energy, that internal archetypal art energy that would get me through [breast cancer]." She told stories about seeking out certain types o f art activities after her breast cancer diagnosis, and about deliberately calling on specific archetypes. She had been receiving art therapy at the time o f her diagnosis, but said she turned toward types of artistic expression, such as theatre, that involved movement and other people after her diagnosis. As she talked, her persuasion came partly from her highly expressive and dramatic way o f speaking. She stood up during the interview, and moved around as she spoke, as i f on stage delivering a dramatic monologue, giving emphasis to her words with her voice and her gestures. She did not require prompts or questions from me, but maintained steady eye contact wi th me as I responded with facial expressions. She took the stance o f an expert, and validated her expertise with descriptions o f her academic and professional credentials. In Meredith's narrative, images and archetypes were like l iving entities. "They have energy in and of themselves... The energy never dies, so that I can go back 25 years, pull 125 something out and it pulsates." She explained that over the years she had created a cast o f characters in her drawings, representing different archetypes, and that she could turn to these characters during diff icult times. She described these characters as parts o f herself and also as belonging to something larger than herself She began her narrative with a story about the emergence o f "the grumpf," a protective creature that appeared in a drawing she made in an art therapy session after her diagnosis, on a day when she had intended to discuss a drawing she had made of a great mother archetype. That particular day I walked in and I picked up the chalks and I just started drawing. And that's when the grumpf came out. ... When I was going home and realized that I'd brought...the mother archetype with me, but hadn't brought it up—I'd ended up drawing the grumpf. When I was going home I realized that [the mother] had given me the grumpf. ...You need something like the grumpf that is fierce and is going to chase the shadows away and (laugh) attack anything that's there.... The grumpf got me through. ...I knew myself well enough that I knew it was that energy, that internal archetypal art energy that would get me through it. ... The grumpf was one aspect. [Meredith] Although Meredith talked about the importance o f working with an art therapist when using art to process difficult feelings, most o f her narrative was about activating archetypal energy in other ways than through art therapy. For example, she showed me a mask she had made and told the following story about taking a mask making workshop, which led to her decision to move forward with an art career. I started [the mask workshop]... I told him... straight up what my situation was. ...The way I put it at that point is I need trickster energy to get me through.... From the time of the surgery through the chemo ... we 'd go over and do his mask workshop. ...And this got me through it, this mask got me through. And it's not just the mask, it's the movement with it... but this was critical 'cause...and this was a movement. This one really helped me move through it. The grumpf stayed here, but this really helped me, as I said, work through... So, and then, it was at that point... that would just tapping back into this wonderful, I could call it trickster energy on a certain level, but just this wonderful healing and expressive and creative energy. And I knew from the start that's what I needed to get through. But by last summer... having tapped into... those energies, the theatre energies, the trickster energies through all this that, I knew I wanted to go forward with it. 126 ...It was like, ohhhh, life is so short that if there's anything I wanna do, I better do it now. And that means all this arts stuff that I'd done all my life on the fringes ...comes into the front burner. [Meredith] Meredith's narrative revolved around the word "energy" In her stories, the energy was a force that could pull her through the experience of breast cancer, and take her beyond herself. I knew I needed that energy to get me through ... the mystery aspect, that life and death, mortality, all of that kind of stuff and the kind offear that can come up around that, that the art energy, whether it's on paper, whether it's mask, whether it's dance or movement, is an energy of that mystery. It is a life...it's life-force and... it's that mystery and...it keeps me from getting too much into my own personal head and fears about my own mortality. It takes me beyond myself. ...Ifind the art and the kind of energy that's going to the arts is just...it's the yellow brick road out of... just shrinking and collapsing into... yourself. ... I turned to doing the mask and then the theatre because that was communal rather than just being an individual. And I was very clear and made a lot of effort right from the beginning of my diagnosis to get out there and network and use the network because I'd only been here a couple of years, didn't have any family, didn't have old friends, and I knew I couldn't do it alone, and that I needed to get out there. ...Part of it was body—to get back into the body and to be feeling (laugh, moving her body around) the body ... Part of it was ... doing it with other people. So there's a social energy ... it's being taken into another realm ...whether it's singing or dancing or moving or ... it takes me to beyond myself. [Meredith] Meredith made several identity claims and value claims during the interview. She said the "touchstones" in her life are beauty, justice, and mystery. She described herself as an intellectual person who has extensive knowledge o f religion, philosophy, psychology, imagery, myth, and especially Jungian archetypes. However, she said she wanted to distance herself from "contentious" intellectualism and from theoretical and philosophical approaches that are based on individualism. As she spoke, she linked these views wi th her desire to be involved in "communal" rather than individual healing activities. She explained that she has lived in many countries and has lived through culture shock, including the shock o f returning to her home country. She has had strong allegiances to different countries at different times. A t various points in the interview, she talked about how she has or has not 127 fit in with the culture o f the country where she was, which gave me the impression that this is an important issue in her life. She was critical o f North American patriarchal culture where women's bodies are commodified. Meredith said she has had a lifelong interest in the arts and has been "blessed with many small talents" so that she has been able to be involved in a variety o f types o f art, including theatre. She illustrated the importance o f the arts in her life with exuberant descriptions o f her artistic successes. Above all, she claimed to be someone with knowledge o f the healing power o f image and archetype, and the importance of "mystery." She described the archetypes she works with as being "internal," which is to say, part o f her, and also as being not l imited to her. She said, "They don't belong to me," and said they pul l her "beyond'' herself. During the interview, Meredith talked about needing both the (internal) energy o f art and archetype and (communal) social energy to get through cancer. Although she did not say this outright, her descriptions o f the archetypes made them seem like a bridge between her internal and external (social) worlds. Meredith ended the interview by telling me about community arts projects she was planning as part o f her new career in the arts. One or the reasons she gave for volunteering to be interviewed was to seek my help with these projects. As she described exhibitions o f art made by women with breast cancer that would have educational and (non-didactic) advocacy dimensions, I could see how art gave her a way to be true to her three touchstones o f beauty, justice, and mystery, while keeping the archetypal energy activated in a communal way. In other words, involvement in art reinforced her sense o f self, as she expressed it that day, and her core values. It kept her within her academic expertise, but took her away from contentiousness and individualism. Connecting to a Larger Energy: Another Exemplar Serena was diagnosed wi th breast cancer at age 56 at a time when she was single and had no health insurance. She had been working as an artist and continued working during and after her treatment. She said she was determined to keep going with her work while she was being treated and while she was finding the money to pay for the treatments. She also said that she made up her mind to walk a few miles every day no matter how weak she was. 128 When I commented on the determination it must have taken to do these things, she stated that the determination came from terror. Serena explained that she continued with her art during this time because "art is my sanity" and went on to say: I feel like ... if I don't have my hands in clay, or I'm not painting, or I'm not doing prints, or I'm not, I'm not making something, if I'm not engaged in some way with that creative process, that I start to lose a sense of who I am. It's like the groundedness, the me just starts to dissipate, and I get to a point, you know, if I don't do anything for 2 or 3 weeks, I sort of get to a point where I don't know who I am. I don't know how to put it any better than that. ... It's almost like an addiction...[Serena] When she elaborated on this, she talked about being connected to a larger creative energy and why this helps with healing. She said it pulls one out o f one's own mundane concerns and is healing in itself because the energy is positive and gives hope. She explained that art making is a way to stay connected to life and to move in a positive direction. The fol lowing excerpts are from different parts o f the interview. I think that there's something about making art that you 're ... outside yourself. You 're not involved with yourself. Your not involved with my 'This hurts,' or my 'What am I going to do?' about whatever. You 're just in this process, and it's like, I sort of see the world as this... all this energy, and it's just kind of around, in the ether, in the planet. And the creative process is connecting to that energy, and drawing [from it] ... like, sometimes certain ideas will show up ... through history, certain ideas happen at certain times ... because that's what's in the ether at that time. ... I don't know if that makes sense to you, but... it's like, you 're drawing on that energy. And it's not you that's making this. It's like you're drawing it from there. ... When you 're in that stream, I think just being there, that's the healing part, because you 're in that stream without regard to being involved on some really personal level with whatever's going on in your body, or your mental stuff. You 're just in that space. I think this is what happens with people who meditate. I mean, I see art, and music, and writing and anything of the creative process as a very meditative kind of occupation. ...I think just to be connected with something that is so positive, that creative energy... (pause) is healing. 129 ... I mean... if you're doing your work, as long as you're working, it's like you 're engaged with life. ... I think it gives you hope. ... Being connected to the creative process, I think, is a very positive thing. And, I think the more you can (pause) put your life in a positive direction, and remove the stresses from your life, the better, you know, the better that your body and your whole system is able to cope. I mean, I think if you don't have hope, and whatever it is that gives a person hope, if you don't have hope, on some level you 're not going to have that desire to live, or that desire to overcome. ...I think the fact that you 're making something, that you 're tapping into this creative process and letting it come out... whatever it is, whatever the form it takes, I think, just that process is healing, and helpful. [Serena] Serena's narrative was one o f determination and self-reliance. As she was telling her stories, she gave some background about painful family and relationship experiences to explain her fighting spirit. She said, "I'm not very trusting," and "I had to find it in myself" She stated that she was determined not to let cancer beat her and that she was "selfish" as she went through treatment, always asking for what she needed and demanding the best. Her narrative tells that this determination kept her engaged with her art process. She was determined to keep her obligations to galleries and stores and to keep earning money. Consequently she was able to stay connected to her sense of self and her "groundedness." At one point she said art is "who I am" In her narrative, making art keeps her engaged with life and connected with positive energy. Vitalization: Thematic Overview "It's whatever that package of energy is that keeps you kind of going." Many o f the women told stories about being energized by art making and using the positive energy o f art as an antidote to illness and death. I pulled these stories together in a storyline called "vitalization," which was prominent in 6 of 10 o f the interviews with women who spoke about their own art making and appeared in less prominent ways in several o f the interviews with women who spoke about art therapy. It was the single dominant narrative in two interviews (Galen's and Li ly 's) . In the narratives o f vitalization, art was described as a form o f energy that could be administered almost as a medicine to counteract illness and death. Gwen talked about breast 130 cancer trying to do her in while she stubbornly made art to keep this from happening. Serena's stories about her art making were also inbued with this idea—that the way to keep herself going was to keep making art. Hannah talked about art as a way to activate the "life force." She said when she had breast cancer, she drew on her experience as an art therapist to find ways to use art to counteract the grimness o f what she referred to as "Cancer World." When she was "overwhelmed'' by the experience o f breast cancer, she decided she would match every bad thing she had to do, for example, every radiation treatment, wi th something pleasurable, such as art or dance. Her stories o f her own experience o f art making in relation to breast cancer contained elements o f "art as a haven," "using more o f the self," and "vitalization." They were not about getting a clearer view or clearing the way emotionally. She said she did not feel a need to use art in these ways, but instead used it to keep her whole self alive and to keep from getting swallowed up by a "Cancer World." She said, "There's no way to ... describe how insular your world gets, and you forget that you have anything to do with the rest of the world," and "You 're a fuller, richer person than what Cancer World makes you be." Her perspective was similar to Brenda's, who said, "I think when I was first diagnosed ... it encompassed every piece of my life, and I had to really fight to have it not take over my heart." Hannah also talked about working as an art therapist with people who have been hospitalized because o f cancer. It was in this context that she outlined her beliefs about art and the l ife force. She explained that she uses art making and art images to activate sparks o f life force in people who have had their lives shrunken down by cancer. She emphasized that one has to work hard to counteract the constriction of a "Cancer World' and ... ... The life force is what gets you through. When I'm working with patients, that's what I'm looking for. I'm looking for that little spark, as sick as you are, there's a little spark and you can see it light up for people when it's stimulated by something sensuous ... We use paints, or beautiful paper, or glitter with patients. We set the best... What I tell my interns is you set... it's like setting the banquet before somebody who has a diminished appetite. You wouldn't give them macaroni and cheese. You give them the little, tiny, most delectable, delicious things so that their appetite and their—which comes from your eyes, and your smell, and whatever—is stimulated. We do the same with art materials. 131 ...It's the life force, I believe, that is helpful to making you well. And, even if it doesn't make you well, if your cancer is so advanced, it makes you happier, because you 're alive before you 're dead. ...I don't know what [the life force] is, but you know it when you see it. ... Whatever it is, you can feel it. You feel when your energy, I mean, you feel when your energy is high, and you feel when it's diminished. And, sometimes, illness diminishes it, and sometimes stress diminishes it, and when you get old, it's diminished. When you 're getting closer to dying it diminishes. I don't know what it is, but it's whatever that package of energy is that keeps you kind of going. [Hannah] Hannah made the point very strongly that art is something that people can do even when illness has made it impossible to do other things they may be accustomed to doing to feel alive and whole. She gave examples o f simple art activities people can do in their hospital beds, even when they are very i l l . The "vital ization" storyline dominated my interviews with Galen and Li ly . Like Hannah, both o f them made it clear that they did not use their art to process their feelings about cancer or to move more deeply into the experience, but instead to keep themselves going and to overshadow cancer. Galen described art as the opposite of illness. She said her art making was an indicator o f how well she was. As she got stronger after her cancer treatment, she saw herself making more art and was heartened by this. She turned to art for energy. She said, "The colours kind of revitalize, and keep things charged up. I mean... (pause) there's a vitality perceived from the colours." After she had talked for a while about f itt ing art making into the schedule o f her cancer treatments, I said, "You sound unstoppable." She smiled and said, "Unstoppable, well, Hike that one." Vitalization: An Exemplar When L i ly talked about vitalization, she went beyond her own experience of making art and talked about the vitalizing powers of the entire art world, including art magazines, exhibitions, and other people's art. She was 82 at the time of the interview and was about 75 when she was diagnosed wi th breast cancer. She had experienced other major medical problems prior to her cancer diagnosis, which she said affected her reaction to breast cancer. 132 So ... in a way the cancer didn't take a back seat, but (because I went through chemo)... I didn't even wait for all the hair to fall out. Ijust had it shaved off, bought a hat, got a wig, got a bandana, and off I went. And, I just didn't think about it at all, because it was too much to think about, andjust continued. Actually I never missed ... anything that I was invited to socially. [L i ly ] She explained that she decided not to talk about breast cancer outside her family and that she thought to herself at the time, "I'm not going to express it unless I have to." Later in the interview, she said, "I mean, I thought about it, I think one time I was thinking about, 'Oh, I wonder if... this would possibly be the end,' and I thought, 'I'm not gonna really think that way...' Ijust felt I wasn't gonna disrupt my life, there was no reason to." Li ly had been working as an artist for many years at the time o f her diagnosis, teaching, exhibiting, travelling to see art, and working with art organizations: "I have a studio at home and I'm an exhibiting artist. I belong to several art organizations ... so, there's something always going on that I could enter into." Her narrative was about the excitement and energy o f the art world. Her stories gave me the feeling that art was like a train she could ride knowing it would keep going forever and always take her to new places. She described her art life this way: "... There's always something new evolving, it isn 't static ... It's something that's going on and on." Li ly read me a statement she had written about her beliefs about art that ended wi th: "Happiness comes when we are able to awaken our minds and hearts, and extend them to the farthest reaches of which we are capable." She went on to describe what art making is l ike for her: ... You just sort of get excited about what you 're doing and it's like winning something (laugh) that ... you can complete something. Maybe you don't complete it but you 're moving on ...It's maybe a new vision that you've got, and you get sort of excited about it. Can't wait to get up in the morning and finish it, or you want to add a little more glue to something rather before you go to bed at night. ...It fills a life. It, it fills it up so much ... And you never know, in a way, what's coming next. And there is going to be something coming next. [L i ly ] Li ly 's narrative was not about introspection, fear, or turning inward to process feelings. 133 As we talked, she kept the focus on art, the art world, and others, not on herself. She revealed her values and her sense o f self only very indirectly. She said she simply wanted to keep going with her life and that her involvement in art gave her a reliable way to do this. Summary I grouped the women's narratives o f "expanding and enlivening the s e l f into four sub-storylines to clearly show how they talked about using art therapy, and especially their own art making, to counteract diminishment and potential obliteration o f the self. The narratives about enjoying being creative show how meaningful it was to the women to experience themselves as creative people, especially those who were making art for the first time in their adult lives in art therapy. These narratives tell o f the tremendous gratification that came when the women could overcome a lifetime of believing they were incapable o f artistic expression. They also show the women's beliefs in the inherent social value o f artistic creativity. In some o f the narratives, this was linked with the pleasure o f feeling they had something to offer to others. Four o f the women said they started art careers as a result o f being diagnosed with breast cancer. The narratives about using more o f the self show how some of the women wanted to activate more parts o f themselves in order to deal wi th breast cancer and how others wanted to activate a new kind o f self when the former self had been undercut. In these narratives, the new parts o f the self were "deeper" aspects, including intuitive and spiritual aspects. In some o f the narratives, the threat o f death gave the women the what-have-I-got-to-lose courage to take the personal and social risks involved with being an artist. There were several kinds o f stories about connecting to larger energies. Meredith's narrative contained stories about connecting to social, archetypal, and creative energies. Serena's narrative was about connecting to energy she said is in the ether. Both Meredith and Serena were on their own when they were diagnosed and described themselves as self-reliant people who look to themselves in times of crisis. Both their narratives tell o f extending themselves and making themselves part o f something bigger through art making. The narratives o f vitalization were simple and profound. In Galen's stories about enlivening herself and others with art and in L i ly 's narrative about maintaining momentum 134 in her life through her involvement in the art world, art and creativity have a raw and reliable energy that is like a train that w i l l go forever. A l l one has to do is ride the train. L i ly 's and Galen's narratives express determined defiance, and refusal to be taken over by cancer. Not all the women talked this way. Some talked about accepting cancer and making the best o f it, or o f simultaneously accepting and resisting. However, in the narratives that yielded "expanding and enlivening the s e l f there was a pervasive feeling o f taking control o f the situation and taking control o f what breast cancer would mean. Minor Theme: The Role Of The Art Therapist Overview Seven of the 10 women who talked about their experiences with art therapy told stories or made comments about the role the art therapist played. There were not enough stories or comments to constitute a storyline, but enough for a minor theme. Most o f what was said about the role o f the art therapist related to individual art therapy and was about: (a) the atmosphere o f non-judgment created by the art therapist, (b) the sense o f trust that could develop as a result, (c) the importance of having a "guide" when entering uncharted emotional territory, (d) gaining insight through talking about art images with the art therapist, and (e) feeling emotionally exposed during art therapy sessions. In most o f the interviews, comments about the role o f the art therapist were brief and were embedded in other narratives. An exception was my interview with Bonnie, in which the art therapist played a central role in the main narrative. The Role of the Art Therapist: The Women's Stories Two women told stories about the non-judgmental atmosphere created by the art therapist and the effect this had on their experience o f art therapy. Heather said the absence o f even the slightest trace o f judgment on the part o f the art therapist let her trust the art therapist and the process enough that she could enter deeply into herself. The greatest gift I had from art therapy... is that... it really does not matter what you make...to let go of the outcome, like the product. [The art therapist was] really great at creating safety ...It was a total acceptance of what was happening in the moment, right? ...so I started to trust it because I wasn't picking up any judgments, and I started to trust her and I started to trust the 135 process ...and then I started to enjoy the process ... and because I trusted the process and had some enjoyment out of the process, the process took me deeper... [Heather] Bonnie described the absence o f judgment in a similar way. I relaxed ...I thought it doesn 't matter if I just draw a straight line. It's how I feel. And that was what was good.... I always found that very relaxing, very therapeutic, because again there was no judgment. It was just how I was feeling and ... that was... that was it, you know...so it helped me look into myself...say, much deeper. [Bonnie] Several others talked about the importance of being able to trust the therapist. Donna, who talked about both group and individual art therapy, said the art therapist was "very instrumental" to the process and that one must be able to trust the therapist. Bessie took a similar point o f view, and, like Heather, talked about how the trust for the art therapist extended to other kinds o f trust. In reference to art therapy sessions she went to with a family member, she said: ...To me it matters a great deal who the therapist is. I don't think art therapy on its own would do anything for me without a very skilled, and very therapeutic person at the other end. ... I just, Iwouldn't have opened up at all to someone I didn't trust. It was either floodgate or nothing. ... And the trust got deeper and deeper as time went on. And, I learned that we could actually let go and feel awkward in the room and still be okay by the time we walked out. ... You've learned to trust that you can be helped, and ...I think this aspect is the root of it. [Bessie] Four o f the women described the art therapist as a "guide"—a guide through the potentially dangerous territory o f unexplored pain, and one who guides the therapy session. Bonnie said the therapist is a guide who can "helpyou through the pain." Meredith, who talked about art therapy as well as her own work with Jungian archetypal imagery, said an art therapist is essential for someone who is a beginner (she saw herself as a seasoned expert, not a beginner). For a beginner, I think a guide is essential... because you 're moving into the shadow in many ways. You 're...moving into unexplored territory. You 're moving into the realms ofpotential madness. If you don't know how to get back ... you should be very careful. Don't go out into the woods alone. 136 I mean really, have a guide that does know those realms because those are the archetypes that people can stumble into and it's a madness that they don't know how to get back. [Meredith] Meredith said that when she had art therapy, she could explore further and deeper "if there was somebody that I trusted... that was sort of standing on the shore." Bessie used a similar image when she said art therapy is like going swimming. " . . . the safety factor, you know ... it's like going swimming. You wouldn't trust yourself to someone you didn't trust. You have to be able to let go." She also said an art therapist needs to be there to "guide you through the maze." O f the major storylines, "getting a clearer view" was the only one that was not represented more or less equally in narratives about art therapy and about independent art making. Because an obvious difference between art therapy and independent art making is the presence or absence o f an art therapist, I paid particular attention while analyzing this minor theme to what the women said about the art therapist in their "getting a clearer v iew" narratives. The art therapist was not mentioned in all the "clearer v iew" narratives. Some o f the women said they got a clearer view simply by seeing their art. However, several said the clearer view came from talking about their images with the art therapist. They said they appreciated the therapist's outside perspective—not that the therapist offered her own interpretation, but that she could bring a fresh perspective into view. Patricia said "the therapist directs the looking" by asking questions that one would not think to ask oneself. She claimed that without the therapist, one might "stick with what you were already thinking," and that "a lot more can come out with the therapist's direction." Meredith said having the therapist as a witness to the insights that she derived from her art made the insights "more real." Hilda said the presence of the therapist was validating. There were several stories about feelings o f vulnerability and emotional exposure in and after art therapy sessions and about feeling let down (see "negative experiences with art therapy"). The women linked these negative experiences with the skill o f the art therapist. For example, Donna had critical things to say about an art therapist who led sessions during which Donna would get emotionally "stirred up" to such an extent that she would leave the sessions feeling weak and exposed. Meredith was critical of an art therapist who she said 137 "couldn't deaF wi th her strong emotions related to breast cancer. The women had positive things to say about art therapists who helped them feel emotionally safe. Reflections This minor theme provides insight into whether and when interaction wi th an art therapist is necessary for the benefits o f visual creative expression that are presented in the four storylines. Some o f the women claimed that the help o f an art therapist was crucial, especially for deep self-exploration and "getting a clearer view." Safety, trust, and non- judgment were key ingredients. On the other hand, some women said the help o f a therapist was not necessary for the types o f healing they described in their stories. Moreover, the narratives constructed by women who talked about art therapy and those constructed by women who talked about independent art making (without an art therapist) were generally very similar. Minor Theme: Negative Experiences With Art Therapy The interviews contained very few stories about negative experiences wi th art and art therapy. Although several women who talked about art therapy said they had to overcome inhibitions about art making and that this was difficult initially, the discomfort seemed minor and seemed to quickly give way to the satisfaction o f getting past the inhibitions. For example, Heather said: I never at all saw myself as having any talent whatsoever. So I had all those blocks and all those negative messages going around me, inside me. [Heather] She immediately went on to add: ... What I learned ... was that it absolutely didn't matter what I produced. It just absolutely didn't matter, and that was the most freeing event because you know, I never could make anything look like anything and the colours were wrong and the perspective was wrong and you know, I can't do it, but it didn't matter! [Heather] The women told stories about feeling grief, anger, despair, and other dark emotions through art/art therapy, but generally described their encounters wi th these painful emotions as beneficial. Bessie said she sometimes felt frustrated during her art therapy sessions, 138 but that the frustration was worth the reward. Negative experiences with art therapy were described in only two of the stories the women told before I asked for elaboration. Several other women had stories to tell about negative experiences when I specifically asked about this. "Negative experiences with art therapy" was a significant narrative in only one interview. None o f the women who talked about their own art making told stories o f negative experiences. The women mentioned two kinds o f negative experiences: (a) having emotions activated but not resolved during their art therapy sessions, and (b) having the art therapy end too soon and/or abruptly and wishing they could have more sessions. A "negative experiences" narrative was a central feature in my interview with Donna. Near the beginning o f the interview, she told a story about an experience she had in a weekend art therapy workshop. She said she tried to make a depiction o f the "terror" and "nightmare''' o f her cancer experience to show that even though "on the outside I present an image that the world is my oyster ... inside there's a whole lot of stuff in there." However, she said she got "weaker and weaker" as she did this and could not finish. She told a similar story about individual sessions with an art therapy practicum student. She had mentioned that her breast cancer diagnosis had reactivated unexamined and unresolved feelings about her sister's death from breast cancer and other family matters. When she tried to address these feelings in art therapy, she once again felt debilitated: ... With this gal I did try to kind of open up the whole family thing again, and I just (laugh)... I ended up just stirring stuff up, so that by the end of an hour I'd be absolutely exhausted and usually in tears. [Donna] Donna decided she could either use art therapy to get strengthened and nurtured or to "stir up" and address painful emotional issues: And then if I didn't do that, if I didn't do some family issues, I was fine. I would leave the art therapy class and I would feel really rested and strengthened from it. ...I thought to myself, I need to just make sure I balance this. That I get the benefits of it, of the relaxation and the creativity that I'm trying to nurture and not tackle too many of the emotional aspects at one time. ... When I phoned up to...to register for the March one-day course I was wondering which I'd do. ... I'll just wait and see that day, see how 139 I feel about it, but...yeah. So, I would like to continue with art therapy the rest of my life. I really would. [Donna] Toward the end o f the interview, Donna ascribed her negative experiences to lack o f skil l on the part o f the art therapist: On trying the art therapy on a one-to-one, the... art therapist was... is very instrumental, I think, much more so than in a group, the group dynamics, 'cause the group itself does a lot of interacting ... and I found that... you've got to feel extremely comfortable with the art therapist then. I think that may be why I stopped the... one that I was doing ... because I think they can...they can be a lot of help, but if they are not skilled and particularly when you 're dealing...with stuff... you're kind of opening doors and you're left with just that door open. You 're feeling kind of vulnerable. [Donna] The other women who told stories about negative experiences used these stories for particular purposes. The feeling of being left hanging was the main thread in the "negative experiences" storyline. Galen told a story about an art therapy workshop she attended at a hospital and made the point that when emotions have been activated in the presence o f a therapist, there needs to be fol low-through—the therapist needs to take responsibility for the resolution o f the emotions that have been activated. Galen had been talking about the importance o f releasing painful emotions that would create " toxic i ty" i f they were held in. ...They had a day of art therapy and I thought, 'Oh, this is for me,' 'cause, again, that was the self-expression, nonverbal. And then, it came around to saying, 'Well, that was that,' and 'We 're not going to do that again.' It's like, pull the rug out from under me. It's like, 'But, but, but, I need that 'cause it's, it was helping me get rid of this yuck out of me... 'So it's a kind of a tricky thing, I think, when... It's like any other kinda contact, just talking to somebody therapeutic professional, and something breaks, and you start really spilling out your feelings 'cause you trust that person, you feel good, whatever ...I think, that has to be, kind of considered of having somebody available. [Galen] When I asked Hilda what stood out the most when she looked back on her art therapy experience, she used a story about the sudden termination o f her individual sessions to show that art therapy had been beneficial to her. 140 I remember...when the therapist... said to me, 'You know, like, we have to terminate the individual sessions,' because, I guess, they must have a time limit or something on it, 'But, you know, I can offer you the group sessions after Christmas.' I remember feeling really disappointed that it was having to come to an end, so, you know... I obviously was getting a lot out of it. ... That stands out for me, the fact that...the feeling of like I didn't want it to end. [Hilda] Meredith told a story about what happened with her (private) individual art therapy when she was diagnosed with breast cancer, as a prelude for her main narrative o f using visual imagery to draw on her own inner resources. So I worked with [the art therapist] from '99 to 2000 and then that was doing art therapy with her oh...mmm, twice a month at the time. ... We came to... to one session that I was just off the wall—this is before the surgery—and I was just off the wall in terms of the overwhelming aspect of the diagnosis. So I'd been doing all this drawing but...I was getting very, sort of out there in terms of the anxiety and that kind of thing. And it suddenly became... seemed to become evident she couldn't go there with me, and it was ver...it was somewhat traumatic ... She couldn't deal with it, which was quite upsetting ...Okay, it was like the last time or the second to last time that I...that I saw her... I'd gotten a card from a friend when I was first diagnosed. 'Do you ever get that feeling... that your guardian angel went out for a smoke? ' I mean, it was the greatest card of that I've ever gotten, but what it made me realize... I mean in a certain level, it's like, guardian spirits? you know, or angels, guardian angels kind of thing? That wasn't going to get me through the cancer. [Meredith] Most o f the women said they thought it was important to get in touch wi th their feelings and bring emotions forward, and many told stories about how their emotions were activated through art therapy. These stories are a testament to the belief that strong emotions can be brought to the surface very quickly in art therapy. However, they show that i t is not automatically or universally beneficial to activate emotions. Donna said she felt it "weakened" her to stir up her emotions. Others said they felt painfully, exposed, or let down by the art therapist, when the process o f activating difficult emotional material was initiated in art therapy but not completed. 141 Summary The four storylines that emerged from the analysis were derived from narratives about feeling sheltered and accepted in the haven of art making and art therapy, making a clearer view o f inner experience through visual creative expression (especially art therapy), clearing the way emotionally through expressing and releasing feelings, and enhancing and enlivening the self. There were also two minor themes relating to the role o f the art therapist and negative experiences with art therapy. In order to present the storyline "enhancing and enlivening the s e l f clearly, I divided it into four sub-storylines having to do wi th feeling good about being creative, using more o f the self, connecting to larger energies, and vitalizing oneself through visual creative expression. These storylines and minor themes summarize what the 17 women who participated in the study said as a group about how they used art therapy and independent art making in relation to cancer. I have described each storyline and minor theme in detai l—using the women's own words to validate and clarify my descriptions—and I have made note o f surprising and less-than-obvious features o f each one. A l l the quotations from my interviews wi th the women carry context information with them about the women's backgrounds and circumstances. In addition to the descriptive overviews of each storyline and theme, I have presented exemplar narratives for each storyline. My analysis o f the structure and meanings o f these exemplars gives a deeper understanding o f what the women meant by what they said and what was most important to them and why. The exemplars are examined in relation to the women's beliefs and values. They illuminate discourses about breast cancer and healing as wel l as the women's personal meanings and concerns. The extensive contextualization o f the storylines and exemplars allows them to be considered beyond the women's individual situations. In the following chapter, I interpret the storylines in relation to the literature that was reviewed for this study and draw conclusions from these interpretations. 142 Chapter 6: Discussion Introduction Psychosocial support services based on visual creative expression have not received the research attention they deserve, given the promise they show for meeting needs o f women wi th breast cancer that might not be met through other types o f support services, and given the urgent need to find ways to provide appropriate psychosocial support to all women wi th breast cancer. This study addressed the need for research on this topic with the research question: "How have women with breast cancer used art making and art therapy for meaning making?" The results give a detailed view of how art therapy and independent art making were important to 17 women with breast cancer, from their point o f view, and provide insights into the particular role visual creative expression can play in psychosocial support services for women wi th breast cancer. The primary results o f the study were four storylines that revealed ways in which the women found it helpful to use visual creative expression to address their psychosocial needs. The processes and outcomes the women described as important to them touched on a variety o f aspects o f meaning making, including establishing a sense of a stable, unique, and valuable self; providing a sense of purpose; resisting disempowering discourses; and experiencing meaningfulness. A strong thread that wound through all four storylines was affirmation o f existence. The findings o f the study show that underlying the other benefits the women described in their narratives was the power o f visual creative expression to support the affirmation, proclamation, and verification o f a stable and valuable psyche within a threatened body—and additionally to reduce feelings o f threat to the existence of the psyche within the body and to promote ongoing existence of both body and psyche. In this chapter, I summarize the procedures and findings o f the study and explain the results in relation to existing literature, giving particular attention to key topics identified in the literature review: (a) the importance of meaning making after a disruptive life event, (b) creative visual expression as a way to resist and influence disempowering discourses, 143 (c) non-verbal emotional expression, (d) the role o f a therapist or some other receiver for what is created, and (e) visual creative expression as a way to aff irm existence. I discuss the implications o f the findings for practice and research, describe limitations o f the study, and offer concluding remarks. Summary of Results I addressed the research question "How have women with breast cancer used art making and art therapy for meaning making?" by interviewing 17 women with breast cancer who had turned to art therapy or independent art making after being diagnosed. The four storylines and two minor themes that emerged from the narrative analysis o f the interview transcriptions showed that the women interpreted their use o f art therapy and independent art making in ways that both echo and extend existing understandings o f the therapeutic potential o f visual creative expression in relation to breast cancer. The four storylines and two minor themes are summarized briefly in the following paragraphs. The storyline "art and art therapy as a haven" was derived from narratives about art/art therapy as a place to experience comfort and affirmation and to have respite from the cancer storm. In the accepting shelter of the haven, the women could be themselves and give attention to their needs. The two storylines "getting a clearer v iew" and "clearing the way emotionally" were often intertwined. "Getting a clearer v iew" had to do wi th bringing clear definition to inner experience and making this visible, primarily through art therapy. The narratives that yielded "clearing the way emotionally" were about self-expression and about releasing and processing difficult emotions (that were not necessarily about cancer). The storyline "expanding and enlivening the s e l f was derived from narratives about the women fortifying and energizing themselves with art making and art therapy—as i f they could pump themselves up this way and feel stronger and more positive. The women talked about feeling energized and alive when making art, feeling valuable, using more o f themselves, and connecting to energies beyond themselves. The minor themes that appeared in some of the women's stories were "the role o f the art therapist" and "negative experiences with art therapy." Some o f the women described how the guidance of the art therapist helped them get the benefits they experienced; some said the benefits they received from art therapy came simply from working with the art materials and 144 the images. A few women described negative experiences wi th art therapy: feeling too emotionally exposed at the end of a session, feeling that the art therapist had not been supportive enough, or feeling that the art therapy ended too soon or too abruptly. Overall, the stories the women told were similar whether they were about art therapy or independent art making. Surprisingly, stories about processing and resolving diff icult emotions were a small part o f a much larger picture that included vitalization, self- affirmation, and altruism. In the following sections, I discuss these findings in detail and explain my interpretation o f their significance. I begin with the topic o f meaning making. Meaning Making The four storylines that emerged from this study reinforce what has been written about meaning making and visual creative expression in relation to the experience o f cancer, and also contain ideas that go beyond the literature I reviewed for this study. In the fol lowing sections, I discuss similarities and differences related to: (a) meaning making as a process o f creating a sense of order or coherence in one's life story, (b) resisting discourses and maintaining ownership o f one's storying process, (c) self-affirmation, and (d) meaningfulness. Coherence and Clarity Meaning making has been defined by some writers as a process o f creating or maintaining a sense of order or continuity to one's life story after a disruptive event. The coherence o f a person's life story is a central concept in theories and discourse about meaning making (e.g., Blumer, 1969). Becker (1997) has found that a sense o f order and linear coherence is particularly important in cultures that emphasize individualism. Overall, the findings o f this study do not show that the women used art therapy or independent art making to make meaning in this way. The lack o f emphasis in the women's narratives on re- establishing a life story that has a coherent plot with a beginning, middle, and end, and resolution o f conflict, conforms with the views of Bloom (1996) and Gergen (1997) who claim that the need for a coherent and linear plot structure to one's life is more important to men than to women. However, because of the importance of this concept in meaning making discourse, I examined the transcripts o f the 17 interviews carefully for indications o f this kind o f meaning making. 145 The only woman who talked directly about using art making or art therapy to reconstruct a coherent chronological narrative was Bonnie, who, o f the women I interviewed, was the one who had been diagnosed most recently. She talked about her former self being gone, having no sense o f a future, and using art therapy to reestablish a sense o f a continuous past, present, and future. Perhaps some of the other women had done this kind o f storying closer to the time o f the their diagnoses, or i f they did it, perhaps they did it in less deliberate ways than Bonnie. I t is possible that the other women never felt as "lost" as Bonnie did in a new city wi th no family and suddenly no job, or that breast cancer came as a ready-made, coherent story for them. Some o f the women talked about reworking the stories o f their lives before breast cancer through art therapy, and some seemed to have involved themselves in art as a way o f ensuring a satisfactory future story. Rather than a sense o f order or chronological continuity, the quality that seemed important to the women was clarity regarding their immediate experiences, regardless o f how this clarity related to the overall plots o f their life stories. "Getting a clearer v iew" was one o f the main storylines. Other indications o f the importance o f clarity were the satisfaction the women expressed with their art that depicted their experiences, and the value they placed on "seeing" I was pleased and honoured that many o f the women showed me art they had made while they were actively dealing wi th breast cancer, including art specifically about their breast cancer experiences. The women's satisfaction with their art that depicted their experiences was apparent to me when they showed me artwork and said wi th great o f depth o f feeling that it showed what they had experienced and said nothing further—nothing about how this helped, nothing about what it led to. I could see that they were telling me something important and eventually saw that the act o f giving clear visual form to experience had been profoundly significant to them. B. Mil ler (1996) has written about the importance o f self- i l lumination in later life as death approaches. The importance the women gave to visual representations o f their experiences bears some similarity to B. Mi l ler 's concept o f self- i l lumination, but seems more fundamental. Visual representations were important to some women in the study simply because they gave visual, concrete, and clear form to experience. They perhaps gave what Aldridge (1993) has called an "awareness o f l iv ing in the face o f dy ing" (p. 295) and clarity where there might otherwise have been chaos. 146 The women told many stories about "seeing" in which seeing, simply seeing more clearly what was happening as a result o f revealing themselves to themselves in their art, was presented as a valuable end in itself. This may reflect a strong cultural discourse in which "seeing" things wi th one's own eyes is valued and encouraged, and in which seeing means "knowing the t ru th "—wh ich is considered desirable. However, the women's narratives suggest something else. M y interpretation o f the way the women said they valued "seeing" as an important end in itself is that seeing makes a clear something where there was a vague nothing before. To have "something" is to exist. Vague nothingness is like non-existence, which is probably intolerable. Although in many o f the stories, a sense of clarity seemed to be enough in itself, there were also stories in which seeing and understanding brought moments o f epiphany when a woman's perspective on herself and her life changed, in other words, when clarity operated as insight and served a further purpose. Laura told a story about looking at a picture she had made o f herself in a boat and realizing when she saw it that it was all right to let other people drive her boat. She said: It seems like at this point in my life ... I'm not in charge of my own boat. Other people are, but, my job is to sit, sit and relax, and go where the wind takes me. If I enjoy that, then it's okay, and it'll turn out okay. [Laura] Patricia's whole story was about seeing her situation in her drawings and, as soon as she saw, knowing what to do. "I was given insight that I wasn't aware of, which gave me a sense of empowerment and then I was able to make the decision that I wanted to from that." These stories and others like them showed how the women used art making and art therapy to bring clarity and how this clarity helped. They exemplify Dissanyake's (1988) ethological understanding o f the purpose o f contemporary creativity as a way to give form to experience that otherwise would be fragmented and incomprehensible, and demonstrate the revelatory potential o f art making and art therapy. Resisting Discourses and Owning One's Story The four storylines and two minor themes did not reveal resistance against the kinds o f disempowering and conflicting breast cancer meanings that have been described by Saywell et al. (2000) and Thorne and Murray (2000). The women did not present their breast cancer experiences in terms of worth measured by sexuality or maternity—not even Brenda, who terminated a pregnancy when she was diagnosed with breast cancer—and they did 147 not talk about fighting against seeing breast cancer in these terms. There were one or two comments about the effect on sexuality o f treatments that radically change the body, but the women talked much less about the effect o f breast cancer on their breasts than on their very existence. Perhaps issues related to sexuality and worth are too personal to be discussed in a first encounter with an interviewer. However, the women were wi l l ing to discuss similarly personal issues and I do not think this is the reason the topic did not come up. It could be that the kinds o f disempowering and conflicting breast cancer meanings that Saywell et al. (2000) and Thorne and Murray (2000) have described are so subtle and insidious and so nearly invisible that it would be hard to struggle against them. However, the women did present themselves as struggling against cultural meanings. The storylines "art and art therapy as a haven" and "expanding and enlivening the s e l f show a struggle against disempowering meanings associated wi th the designation o f "cancer patient." This struggle seemed to have a very direct bearing on the women's needs and concerns. Embedded in their narratives were descriptions o f resisting being reduced to "cancer patient," welcoming opportunities to escape their cancer patient identities, and working hard to counteract the diminishment o f the cancer patient designation. The loss o f social value that comes wi th "cancer patient" seemed to far exceed the loss o f social value that could come from the loss o f sexuality or maternity. Cultural discourses that uphold existing power structures and l imit available meanings are created and reinforced primarily through language. Verbal expression, especially talking, brings meanings into existence by producing common understandings about what things are and what is possible. Some ways o f talking open up possibilities and others close them down. Verbal expression is seen as the primary and most potent way o f establishing a discourse and setting up limits on what is knowable and sayable within that discourse (Drewery, Winsdale, & Monk, 2000). The power to l imit meanings and therefore freedom is wielded through language in a variety o f ways, including: speaking about people as objects rather then as l iving beings, speaking to people in ways that invite them to assume passive positions, reducing people's identities by equating them wi th labels or diagnoses, and using language to turn ideas into indisputable facts. Brown (2000) has pointed out that in the medical sphere, the act o f claiming the authority to name another person's distress and to presume to know what it means for that person is a way of exerting power, and of l imiting the person's freedom 148 to define her/his own identity and meanings. Subjugation results from naming another person's experience without taking into account the person's own perspective (Drewery et al., 2000). In his writ ing about illness and narrative, Frank (1997) has emphasized the importance o f maintaining authorship o f one's story. He and others have pointed out that one way to have power over another is to take control o f the other's story. The women's narratives were permeated by a strong resistance to having their identities/stories overtaken by patterns o f meaning and language that reduced them to "cancer patient." The narratives showed the capacity o f visual creative expression to promote ownership o f stories and meanings and to facilitate resistance to disempowering discourses. When Heather told me it had been "therapeutic" to make a particular image, I asked what she meant by that and received this response: "It gave me...I don't know... control isn't the right word, but ownership or a relationship with it that I didn't have before.... The experience was mine in a different level than it was before." The women could define their experiences in their own terms in their images. They explained that they could circumvent the untrustworthiness o f words and create meanings they could believe in. In their narratives, they describe this as a source o f strength. Aldridge (1993) and others have pointed to creative expression as an important means o f self-definition during illness. It is likely that the deep satisfaction the women in this study expressed about the images they made that depicted their experiences came also from this. Individuality and nonconformity are allowable in visual creative expression. Not only could the women make their experiences clearly visible to themselves wi th their images, they could name their experiences with images, and maintain control o f their identities and meanings in this way. Affirming the Self A l l four storylines touch on a process that has been described as a core dimension o f meaning making: establishing a satisfactory sense o f self (Arciero & Guidano, 2000). Stories about creating a sense o f a unique and valuable self wound through most o f what the women said. These stories were about the women positioning themselves in relation to breast cancer, sometimes defiantly, and about using more o f themselves, activating deeper parts o f themselves, expressing themselves in unique ways, making art to offer to others, f inding peace within themselves, and appreciating validation from others. 149 The storylines also suggest that the women valued visual creative expression as a way to solidify a sense o f a permanent self, in other words, an identity that feels stable and reliable (Arciero & Guidano, 2000). The significance of this is apparent in the women's stories about feeling glad when they could see that aspects o f their identities that were important to them, for example, having something o f value to offer, had not been taken away by cancer. A l l o f the women who identified themselves as artists prior to being diagnosed with breast cancer kept going with their art, f itt ing art in between chemotherapy treatments (L i ly) , keeping up gallery commitments in spite o f low energy (Serena), and doing whatever it took to keep making art. Serena and Laura both said they did not feel they were themselves i f they were not making art and they did not want to be without it. Throughout the women's narratives, there was a strong undercurrent o f concern about annihilation o f the self—annihilation by being dismissed, by being reduced to merely a cancer patient, by losing social roles, or by death. Stories about refusing to accept a diminished self were numerous and powerful. When Brenda was "stayed" by chemotherapy and had to stop her work, she created another kind o f work that demanded more o f her and allowed her to be a "more me, me." After Annie was fired from a job she liked because she had cancer, she started her own company. L i ly , who was 75 when she was diagnosed, said she did not want to be pulled toward death by cancer, so she kept making art and did not miss a single social engagement. Gwen chose her life path for the first time at age 62 and gave herself a strong new identity as an artist. Sarah quilted to feel better during her treatments and kept going afterwards, building up a new and stronger self. Galen wore flamboyant hats and handed out colourful stickers when she went to the cancer hospital for her treatments. Hannah deliberately counteracted the diminishment o f the self caused by "Cancer World" by activating the life force with art. Bonnie insisted on finding someone in the medical world who would not dismiss her. These stories suggest that the women were doing something more than re-establishing a satisfactory sense o f self in these ways—that they were using art making and art therapy to aff irm and confirm their very existence. This echoes what Moon has said about the healing power o f artistic expression: "The potent act o f expressing the truth o f one's existence is the healing agent" (Moon, 1997, p. 51) and what Malchiodi (1997) has written about women with breast cancer using art to say " I am here." 150 Aff irmation o f sheer existence showed up even in the storyline "art and art therapy as a haven." A n important dimension o f this storyline was that the women said they could be themselves in the haven. They described the haven as a non-judgmental place where they were accepted for who they were, cancer and all, and where they had time and permission to focus on themselves. They said it mattered to be affirmed, validated, and valued. This was comforting, but the women's stories show the haven to be more than just that. It was a place where they could simultaneously not be devalued for having cancer (keep their cancer patient identities wi th them) and forget about being cancer patients (shed the deadening weight o f those identities). It was a place where they could feel their existence strongly. According to Lane and Graham-Pole (1994), two leaders in the hospital arts movement, to make art is to make the self. Ar t is experienced as an extension o f the self. The women's stories reinforce this viewpoint and cast art making and art therapy as ways to make oneself as someone who feels unique, valuable, and permanent. Meaningfulness Frankl (1966) has defined meaningfulness as self-transcendence (significance beyond the self) that comes from offering oneself to the world through creativity, receiving what the world has to offer, and choosing one's attitudes to situations one encounters. According to Frankl, every situation, no matter how dire, is an occasion for meaningful, moral choice. In the realm o f creative arts therapies, meaningfulness has been defined as believing there is a reason to live or having a sense of purpose (Aldridge, 1993; Edwards, 1993). Creativity theorist Csikszentmihalyi (1996) has described creativity as the central source o f meaning in human l i fe; it gives people a sense o f l iving fully and of being part o f a larger entity. The storylines contain elements o f all o f these perspectives. They show that the women found creative expression to be an important way to offer themselves to the world and to choose and shape their attitudes toward breast cancer. The women's narratives demonstrate that they believed in the inherent social value o f art and the intrinsic meaningfulness o f visual creative expression. Several of those who had not been making art before said were proud to be involved in creative expression. The storyline "expanding and enlivening the s e l f included stories about using more parts o f the self and becoming part o f something larger than the self through visual creative expression. There were many stories about finding or maintaining a sense o f purpose through art making. Several o f the women who had not been involved in creative expression much or at 151 all prior to being diagnosed wi th breast cancer said they took up art as their main l i fe's work after being involved with creative expression in relation to their breast cancer. The stories these women (Sarah, Gwen, Brenda, Meredith) told about their commitment to art all included involving other people in art—usually other women with breast cancer—through organizing exhibitions and group projects and making art for others. The women who already had been making art also told stories about maintaining a sense of purpose through their art making. For example, L i l y described art as the engine that pushed her along in her l ife, always giving her a reason to get up in the morning and always giving her something new to look forward to. In many cases, the sense of purpose and value that came from art making was linked to having something o f value to offer to others. The theme o f self-transcendence through altruism was a strong undercurrent in the women's narratives. The findings o f this study suggest a potentially significant relationship between self-focus and altruism. Some of the women said cancer opened the way for them to focus on their own needs and wishes in ways they had not before, and many told stories about being able to focus on themselves through art making and art therapy and to aff irm and take care o f themselves. However, not all the women expressed these perspectives. There were cultural and generational differences in the degree to which the women embraced a focus on the self, or "selfishness" as Serena described her fight for good help and funds to pay for it. As mentioned above, in some women's narratives o f independent art making (e.g., Ursula's), the emphasis was on directing art making toward others. In Bessie's narrative o f art therapy, the focus was not on herself, but on her family. In some narratives (e.g., Sarah's), a focus on self and a focus on others blended together. Several o f the women (Sarah, Meredith, Ursula, Brenda) described how they very quickly moved from realizing personal benefits from art making to extending those benefits to other women with breast cancer and working to improve conditions for women wi th breast cancer by shaping public opinion through their art activities/Both Sarah and Brenda said they wanted to "pay back" after they had been treated for breast cancer. Frank (2002b) has questioned why someone who has lived in the world o f suffering as a result o f illness would choose to stay there when free to leave, as some of the women in this study chose to do. Frank has described a story "template" offered by society to those who have suffered and survived illness that he has named the template o f "extensive responsibility" (p. 248). His tentative answer to why someone would choose this template 152 and take on an ongoing responsibility for the suffering o f others is that personal suffering brings recognition o f the self as part o f a larger community and of a "web o f reciprocities" (p. 253), such that life can no longer be lived for the self alone. Ar t making is a relatively socially acceptable way to be wi th the self and it is easy to combine self-focus with other-focus in art making. A combination o f self-focus and altruism allows the self to be bolstered while also building meaningfulness and self- transcendence. Perhaps for some women the self-focus is only acceptable i f there is also other-focus. The importance of self-focus and the importance of altruism have been described separately in literature about art therapy and meaning making. A focus on the self is expected wi th in a therapeutic model o f art therapy where the purpose is to express the truth o f one's existence (Moon, 1997), illuminate the individual psyche (Naumberg, 1966; Wallace, 1987), or foster personal change (Ulman, 1961). The potential therapeutic importance o f altruism is largely absent from discourse about art therapy and cancer, where the emphasis is on self expression, personal insight, personal strength, individual sense o f control, and bodily healing (Hiltebrand, 1999; Long, 1998; Luzzato & Gabriel, 2001; Minar, 1999; Zammit, 2001). The focus is inward, toward the individual only. In literature about meaning making, Frankl's (1966) concept o f self-transcendence and Frank's (2002b) notion o f "extensive responsibility" provide frameworks for understanding the pull to help others after suffering illness oneself. However, these views do not include the idea that certain kinds o f other-focused activities might permit a needed self-focus during a time of difficulty. Meaning Making Summary M y analysis o f the 17 interviews that were the basis o f this study showed that the women understood their art therapy and independent art making as ways to create a sense of clarity; to resist certain discourses; to create a sense o f a unique, valuable, and permanent self; and to produce meaningfulness. In these ways, the findings conform wi th theories o f meaning making. They deviate from the ideas about meaning making contained in literature I reviewed for this study in three important ways that have to do with (a) linear narrative coherence, (b) resistance to discourses, and (c) altruism (other-focus). The findings o f the study do not show that the women saw art therapy and independent art making as ways to reestablish a sense o f order and linear continuity to their life stories. Rather, they show that the women saw creative visual expression as an avenue for bringing clarity to what they were experiencing 153 in the moment. The storylines do not cast creative visual expression as a means o f resisting the types o f problematic breast cancer meanings identified by Saywell et al. (2000) and Thorne and Murray (2000), but do show it to be a means of resisting meanings and identities (e.g., lack o f identity) associated with the designation of cancer patient. The storylines show that an inward and an outward focus were both important to the women in the study and suggest that an outward altruistic purpose may facilitate a needed self-focus for some women. The findings o f the study give a special ring to the term meaning making because in the women's narratives, meaning making was done through deliberate acts o f making— making objects and images that the women could witness as their creations. The narratives show the women getting clearer views o f their inner situations by making these clear v i e w s — out o f nothing in some cases—and making clear emotional paths to the future by sweeping obstacles away through art making. They cast visual creative expression as a way the women could be proactive about meeting their psychosocial needs and a way for them to take ownership o f the meanings they made and the strengths they found. Emotional Expression In research about psychosocial interventions for women with breast cancer, reduction o f distress is often used to evaluate the success o f an intervention (e.g., review by Helgeson & Cohen, 1996). This may obscure a positive role for strong emotion in the context o f a disruptive experience such as breast cancer. Some theories of meaning making (e.g., Arciero & Guidano, 2000) hold that painful emotions are an important fuel for meaning making after disruptive life events. In art therapy discourse, it is considered generally helpful and even necessary to express strong emotions that have not been expressed—as a first step toward insight, integration o f painful material, and resolution (e.g., Naumberg, 1966; Wallace, 1987). In essays, case presentations, and research studies about art therapy and cancer, emotional expression is usually described as a positive outcome o f the intervention that is being studied or discussed (e.g., Hiltebrand, 1999; Minar, 1999; Rudloff, 1985; Zammitt, 2001). Emotional expression is a central element o f certain psychosocial interventions for people with cancer, for example, the supportive-expressive group model developed at Stanford University (Spiegel & Spira, 1991), and reduction o f control of painful emotions has been used as a measure o f success for some psychosocial interventions for people with cancer (e.g., Giese- Davis et a l , 2002). 154 The findings o f this study show that the women who participated placed high value on emotional expression. Although visual creative expression as a way to directly reduce distress was an aspect o f one o f the storylines ("art and art therapy as a haven"), a stronger theme in the storylines was the importance o f visual creative expression as a way to both experience and release difficult emotions. Some o f the women gave reasons why it was important to express painful emotions (e.g., to eliminate emotional toxicity), but in many o f their stories, the value o f emotion and emotional expression was taken as a given. Several o f the women said very directly that it helped them to have a form o f expression that was non-verbal. A core concept in art therapy is that emotions that would not or could not be expressed in words can be expressed in images (e.g., B. Mil ler, 1997). The women's stories about non-verbal expression taking them past the surface and opening up unexpressed parts o f themselves reinforced this idea strongly. The storylines "getting a clearer v iew" and "clearing the way emotionally" showed that the women valued "expressing" and "releasing" emotions in their own right and also as the precursors to "seeing" "understanding," and "resolving." These five experiences were tightly intertwined in the narratives. Sometimes expressing was just expressing; sometimes it was also releasing. Sometimes releasing required seeing and understanding first; sometimes it did not. Usually "seeing" meant instantaneous understanding and resolution; sometimes for understanding to be resolution, processing was necessary. The women's descriptions o f these processes present art making as an avenue for emotional expression (and release), the physical thing that makes the emotional experience seeable/knowable, and the vehicle for bringing understanding and resolution. Visual creative expression could be used in all these ways at once, as evidenced by the way expressing, releasing, seeing, understanding, and resolving all seemed to pile on top o f each other in the narratives. I t gave the women a way to feel, to know, and to use their emotions. Visual Creative Expression Some of the benefits o f art therapy and art making illuminated by the findings o f this study could have occurred without art. However, most depended heavily on the art. The storylines revealed seven qualities o f visual creative expression that were instrumental in facilitating the beneficial processes and outcomes the women described as important. These are described in the following paragraphs. 155 As mentioned above, the findings give convincing evidence that art therapy and independent art making facilitated emotional expression, particularly expression o f material the women had not expressed previously and that they said they would not have been able to put into words. The findings show that the women valued this quality o f visual creative expression in its own right and also because it opened the way for other things. Visual creative expression involves the creation o f images and objects that are visible and concrete. Artworks can be seen and touched; they endure. In the women's narratives, visual creative expression was a way for them to go beyond the potentially deceptive level o f words to something they said they found more trustworthy. The trustworthiness came from accessing what the women described as deeper, less rational parts o f themselves and also from the visible concreteness o f their images. Hilda talked about the "undeniable'" truth o f her images "looking her in the face." When the women could "see," they could understand, and they could believe in their understandings. Visual creative expression favours unique and individual expression. The possibility o f originality and nonconformity is wide open. People may carry restrictive assumptions about "good" art, about how a drawing "should" look, etc., but contemporary Western discourse defines creative expression as an arena for uniqueness and originality. Thus, it is a useful arena for self-definition and for resistance to disempowering discourses. It is a place to 'be yourse l f The storyline "art and art therapy as a haven" tells o f the women being themselves in the haven and benefiting from this. A l l the storylines were permeated wi th the idea that the women could define themselves and breast cancer in their own terms through visual creative expression. The women's stories about feeling proud of newly awakened creativity reflect a cultural discourse in which artistic expression has inherent social value. The narratives show that the women were pleased to be involved in creative activities, especially i f this was a new thing for them. Whether or not it was new, the women expressed profound gratification from making art that had value to others. The aesthetic dimension of visual creative expression is another o f its distinctive qualities. Visual creative expression can result in images and objects that are beautiful. (This does not have to depend on skill or experience. A person without much skill can make something that is simple and beautiful, perhaps beautiful through its heartfelt meaning.) 156 The women's narratives revealed several ways the aesthetic dimension was important to them. Whether they were talking about art therapy or independent art making, the women said it was gratifying to make things with aesthetic qualit ies—not only for the ego gratification and the possibility o f offering something o f value to others, but because of the sheer pleasure o f colour, form, texture, pattern, etc. In some o f the narratives, this pleasure pulled the women forward in their lives. It provided intrinsic motivation and sense of purpose. The storyline "expanding and enlivening the s e l f revealed several ways in which visual creative expression was experienced as an entity larger than the self that the women could attach themselves to and that was rich with energy and potential. In some cases, the larger entity was a social community o f other artists. In others, it was the ethereal energy o f archetypes or artistic inspiration. For L i ly , the art world was a dynamic force that could carry her on forever. These are seven distinctive qualities o f visual creative expression that were important to the processes and outcomes the women described in the narratives they constructed. Visual creative expression was presented in the narratives as something that can (a) promote emotional expression; (b) permit trust in what has been expressed by virtue o f being non- verbal and visual; (c) facilitate unique expression that favours self-definition and resistance to disempowering discourses; (d) bring a sense o f personal worth through the inherent social value o f creativity; (e) be intrinsically motivating because o f its aesthetic dimension; (f) bring a feeling o f connection with a larger whole; and (g) support a range o f simultaneous beneficial processes. Taken together, the findings o f the study paint a picture o f the women engaging in multiple beneficial processes simultaneously—that could yield emotional, psychological, physiological, spiritual, social, and existential benefits at the same time. A woman could be feeling the comfort and affirmation o f the haven (an important benefit in itself) while also finding clarity amid an overwhelming array o f emotions, clearing her way by resolving and releasing painful emotions, activating spiritual and intuitive parts o f herself, f inding a new sense o f purpose, vitalizing herself, connecting herself to a larger whole, defining and proclaiming her existence in her own terms, and creating meaningfulness through making things to offer to others—all at the same time. Although visual creative expression is not the only avenue for psychosocial support that might yield multiple simultaneous benefits, the array o f simultaneous beneficial processes presented in the women's narratives is remarkable. 157 The Role of the Therapist Within the narrative theoretical framework, meaning making is considered to be a socially interactive process that involves coordinating new meanings wi th the meanings o f others. Personal interaction is also central to art therapy discourse, which is predicated on the idea of interaction with an art therapist. Dreifuss-Kattan (1990) claims that for creative expression to be beneficial to someone with cancer, there must be a therapist present or someone else who can receive what is being made. She has said that without a therapist or some other kind o f receiver, the feeling of power that comes during the beginning stages o f creative acts can turn into a focus on the self that can cause feelings o f isolat ion—the opposite o f what is desired from the process, according to her way o f thinking. Frank (1995) has described storying as a reciprocal and interactive process that is mutually beneficial to both teller and listener. Moreover, social interaction is an important dimension o f activist artwork made by women wi th breast cancer. Thus, the literature and artwork that was reviewed as background for this study point to a significant role for social interaction in relation to meaning making through visual creative expression for women with breast cancer. Most o f the women in the study who told stories about their art therapy experiences positioned the art therapist as a crucial guide, witness, and catalyst for insight. They claimed that there needed to be someone there to direct the process and receive what was expressed. Additional evidence of the importance of the art therapist (or some other receiver) is conveyed by the stories the women told about negative experiences with art therapy. These stories had to do wi th poor reception o f visual and emotional material by an art therapist— either inadequate reception or reception that ended suddenly or too soon. On the other hand, some of the positive outcomes the women claimed they achieved through art therapy did not depend on an art therapist—for example, pride about being involved in creative expression, the feeling of activating more parts o f the self, and the feeling o f being energized. Two of the women who talked about their own art making said no one had to see the art for them to benefit from it. Indeed, there was a remarkable similarity between the stories the women told about art therapy and the stories they told about independent art making. The storylines "art and art therapy as a haven," "clearing the way emotionally," and "enhancing and enlivening the s e l f crossed both groups more or less equally. There were 158 many stories about processing and resolving difficult feelings through art making without the help o f an art therapist. The women's stories about achieving therapeutic benefits through art making without an art therapist suggest great potential for visual creative expression as an avenue for psychosocial self-care. It is important to bear in mind, however, that none of the women in this study made her art in isolation. Those who made art independently were either exhibiting and selling their work, making things for other people, or involving others in their art making. They all had 'receivers' in the picture somewhere, even i f not present with them while they were making art. Some kind o f social interaction was involved. Therefore, the findings do not contradict Dreifuss-Kattan's (1990) warning and do not suggest that art making done in isolation can yield the same kinds o f benefits as art therapy. Although they do not preclude the possibility that art making done in isolation could be beneficial, the results o f this study provide no evidence for this. Affirming Existence The strongest thread winding through the four storylines was the importance the women gave to affirming their existence. They presented art therapy and independent art making as ways to: (a) reduce feelings o f threat to existence, (b) affirm and proclaim present existence, and (c) enhance the possibility o f ongoing physical and psychological existence. In the narratives that yielded the storyline "art and art therapy as a haven," the women described the haven as a place where they could have relief from thinking about cancer, in other words, where they could have temporary respite from the looming threat to existence. They also described the haven as a place where they could be accepted and affirmed for who they were and where they did not have to hide their cancer or feel stigmatized and diminished by it. The stories the women told about getting a clearer view of their situations, through independent art making and especially art therapy, also contained an element o f affirmation and confirmation o f existence. These were stories about making clear pictures o f their situations, bringing their experience into focus and making it visible and concrete—making it into something tangible and believable that would give the feeling o f " I ex is t—my existence has not been taken away." In their stories about "expressing" themselves, the women sometimes described purposes served by self-expression, but often it was presented as an 159 end in itself: an assertion o f one's existence. The storyline "enhancing and enlivening the s e l f contained a great array o f stories about energizing and enlarging the self, activating more parts o f the self, and making the self part o f something larger. These can be understood as stories about fortifying the self against the threat o f annihilation by cancer and thereby promoting continued psychic and well as physical existence. This view is in keeping wi th Malchiodi's (1997) understanding o f activist artwork made by established artists wi th breast cancer—who, according to her, have used their art to proclaim their existence and to say " I am here." I t is a more fundamental view than what is found in the usual discourses about the psychosocial dimensions o f breast cancer. When the purposes o f art therapy and self-expression are seen in this way, the goal o f art therapy and independent art making in relation to breast cancer is less to help a woman feel better about what is happening or to help her resolve emotional difficulties, and more to help ensure her continued existence as a psyche within a body, no matter what happens to the body, and to maximize her belief in this existence. Further implications for clinical practice are discussed in the fol lowing section. Implications for Practice The results o f this study have significant implications for the provision o f psychosocial support to women with breast cancer, for the practice o f art therapy in particular, and for the field o f psychology in general. Of particular importance are implications related to (a) the compatibility o f art therapy wi th narrative therapy, (b) the potential o f the outward focus o f visual creative expression to be a catalyst for a beneficial inward focus, (c) the significance o f visual creative expression as an avenue o f existential psychotherapy, and (d) the possibility o f adapting art-based psychosocial support services for self-care and distance delivery. Art Therapy and Narrative Therapy Narrative therapy (Freedman & Combs, 1996; White & Epston, 1990) concerns itself wi th helping people to overcome disempowering discourses and to establish ways o f being that favour individual freedom and choice. The findings o f this study point to an important role for visual creative expression within narrative therapy. Narrative therapy typically begins by helping a client to externalize the problem being addressed and thereby to separate the 160 problem from the client, in recognition o f the way problems are often imposed and cemented by cultural discourses. The client is then helped to identify personal strengths and resources that w i l l be useful in dealing with the problem. From this vantage point, the client can imagine a new pattern o f being that w i l l reduce or eliminate the power o f the problem. The client then decides what first steps to take to initiate this pattern. The new way o f being replaces the old when it is witnessed and acknowledged by significant others. The women's narratives tell o f how they found new ways o f being through visual creative expression and how these ways o f being gave them the power to define themselves, build or rebuild strength, and reduce the l imit ing power o f cancer and the designation o f "cancer patient." They could separate themselves from cancer while making art, and they could use visual creative expression to bring forward personal strengths. For some o f the women who had little or no previous experience with art making, visual creative expression gave them a new path to f o l l o w — a new narrative trajectory that allowed them to define themselves in their own terms. The new ways o f being they charted for themselves were readily witnessable because the art supplied visible evidence. It is perhaps because o f the great difference between the postmodern theoretical foundation o f narrative therapy and the traditionally psychodynamic (Freudian) theoretical foundation o f art therapy that the two do not often overlap. There has been some introduction o f art making into the practice o f narrative therapy (e.g., Carlson, 1997) and some introduction o f narrative theory into art therapy practice (e.g., Riley & Malchiodi, 2003; Riley, Malchiodi, & Oster, 1999), but in general, the potential for using visual art within a narrative framework br narrative therapy within art therapy has not been actualized. This study illustrates the compatibility o f art therapy and narrative therapy and suggests that a blend o f the two could be a useful approach to psychosocial support for women wi th breast cancer. Inward Focus and Outward Purpose The capacity o f visual creative expression to foster an inward or outward focus or both is apparent in the findings o f this study. A dimension o f "art and art therapy as a haven" is the potential o f visual creative expression to facilitate self-focus and introspection. An aspect o f "enhancing and enlivening the s e l f is visual creative expression as a way to offer oneself to others. With creative visual expression, the possibility of the opposite focus (inward or outward) is always available. 161 For some o f the women in the study, it seemed important to have privacy while they were involved in art making and also to be directing their artwork to some receiver. For example, Sarah's narratives tell o f benefiting from being with her emotions in private and also from offering both her quilts and her quilting expertise to others. It may be important to provide opportunities to women with breast cancer for art making that promote both an inward focus and an outward purpose. An outward focus may facilitate an inward focus that is needed when existence has been threatened. A n altruistic purpose may permit introspection, self-expression, and attention to personal psychosocial needs, particularly for people who are not accustomed to turning inward to attend to themselves. I f this is the case, then more attention should be given to art-based psychosocial interventions for women wi th breast cancer, such as group quilting projects, that have an outward purpose and that also allow an inward focus (as well as allowing other kinds affirmation o f existence that the women in this study said were important). Art and Existential Therapy Art therapists and others have advocated the use o f existential approaches for psychosocial interventions for people with life-threatening illnesses (e.g., Aldridge, 1993; Serlin et al., 2000; Spiegel & Classen, 2000). The Stanford University supportive-expressive model o f group support for women with breast cancer is based in part on the ideas o f existential psychologist, Irvin Yalom (Yalom, 1995; Yalom & Greaves, 1977). Logotherapy, the existential approach to psychotherapy developed by Viktor Frankl (1966), concerns itself above all with the meaning o f existence. According to Frankl, the role o f the logotherapist is to help make a complete spectrum of meanings and values conscious and visible, including meaning derived from choosing one's attitude to suffering. According to Frankl, major life disruptions such as cancer can destroy previous life structures resulting in a structureless freedom that can lead to dread. However, it can also provide freedom to choose who to be, what to value, and how to respond to the tasks presented by life. In narrative therapy, freedom to choose one's meanings is defined in terms o f resisting disempowering discourses. In existentialism, there is also recognition o f the importance o f ascribing meaning oneself. In Frankl's description of how logotherapy emerged from his experiences in a Nazi death camp, he writes that it was an insult worse than a physical blow to "listen to a man judge my life who had so little idea o f i t " (Frankl, 1966, p. 24). In logotherapy, the key constraint on freedom to choose meanings and attitudes 162 is considered to be lack o f purpose. According to Frankl (1966), when life has been made provisional by life-threatening illness and important life goals have been eradicated, it is diff icult to actualize one's freedom of choice because the provisional present seems unreal and faith in the future has disappeared. Therefore, it is important to f ind enough value in the present to allow active responding to life's opportunities and to build enough faith in the future to permit striving. Meaning is in the present moment and the wi l l to meaning is fueled by the pull o f goals. Re-establishing a sense of purpose often requires redefining oneself and one's priorities, embracing responsibility toward others in spite o f illness, and choosing to live ful ly in the present. According to Spiegel and Classen (2000), "anything that affirms your life force, meaning and importance to others counters [the] sense that death has already claimed you" (p. 198). The essential isolation o f the individual is an ongoing existential challenge that is accentuated by the isolating effects o f illness. How can life have meaning in the face profound aloneness? In existential therapy, self-transcendence is an answer given to this question. Meaning comes from finding significance beyond the self, for example, by giving oneself to the world through acts o f creativity and by receiving what the world has to offer, including the experiences o f beauty and love (Frankl, 1966). A t the core o f the findings o f this study was the importance the women gave to the value o f visual creative expression for reducing the sense of threat to existence, affirming present existence, and enhancing belief in ongoing existence, in other words, to lessen the impact o f existential despair, to accentuate existence in the present, and to build faith in the fu ture—al l at the same time for some of the women. In the narratives, visual creative expression was an avenue for redefining the self, detecting meaningfulness through creativity, transcending the self through altruism, re-igniting sense o f purpose, and feeling connected wi th a larger whole. Thus, the findings show visual creative expression to be a multi-purpose means o f carrying out the recommendations of existential therapy in relation to life- threatening illness. Self-Care and Distance Delivery There was a remarkable similarity in this study between the narratives about art therapy and the narratives about independent art making. The only storyline that was specific to one or the other was "getting a clearer view," which was present primarily in narratives about art therapy. However, some of what the women said they gained from art therapy, such as feeling good about being creative, did not depend on interaction with an art therapist. 163 Moreover, several o f the women told stories about resolving diff icult emotions through independent art making, without the help o f an art therapist. Thus, the findings o f this study point to intriguing possibilities for both self-care through visual creative expression and distance delivery o f art-based psychosocial support services for women wi th breast cancer. None of the women who talked about independent art making was making art in isolation, so the findings o f the study do not suggest that there could be therapeutic benefits from making art that nobody else wi l l receive (perhaps there could be, but this study does not provide evidence for this). The findings do suggest that the reception o f what is made, whether by a therapist or someone else, can be delayed, and that there does not necessarily have to be someone present during the art making process for the process to be beneficial. Ar t therapists are beginning to provide art therapy services via the internet (e.g., Petterson, 2003). A straightforward way to do this is wi th email: the client creates artwork and emails it to the therapist who receives it and responds after some delay. The findings o f this study suggest that neither the delay nor the lack o f physical presence of the art therapist precludes benefits and therapeutic gains o f the sort the women in this study described as important. Indeed, art therapy may lend itself to distance delivery (and vice versa), because in art therapy the therapy is transacted in relation to the art as well as in relation to the therapist. The client can be with the art even i f the therapist is somewhere else. Perhaps there are therapeutic benefits o f visual creative expression that can only be gained through interaction with an art therapist. However, the narratives constructed by the women in this study provide convincing evidence that there are many positive outcomes that can be achieved without the help o f an art therapist. This suggests a place for art-based self- care for women with breast cancer, in which women make art on their own that w i l l be received not by an art therapist or trained facilitator, but by someone else, perhaps a friend or another woman with breast cancer. Directions for Future Research The findings o f this study raise questions for further theoretical research and give direction for the development o f art-based psychosocial support services for women with breast cancer that could provide alternatives to existing services and thereby allow more women to be served. Further research is needed to assess the value o f visual creative expression as an avenue for psychosocial support for women with breast cancer and to 164 determine its potential to make appropriate psychosocial support available to women wi th breast cancer whose needs are not being met by existing services. To advance the development o f new art-based services, findings o f studies such as this one should be introduced into focus groups in which women with breast cancer, art therapists, and others are asked to generate guidelines for creating services that would take advantage o f distinctive qualities o f visual creative expression and provide forms of psychosocial support that could augment what is currently available. A hypothesis generated by this study is that art therapy and independent art making have an important role to play in facilitating affirmation o f existence for women wi th breast cancer. Research is needed to test this hypothesis and to deepen our understanding o f the significance of this dimension o f psychosocial support. For example, we need to know more about how women's lives are affected as a result o f using art making or art therapy to aff irm and confirm their existence. This study raises questions about the necessity of having an art therapist or some other kind o f 'receiver' for the art that is made in the context o f psychosocial support for women wi th breast cancer. As breast cancer incidence and survival rates increase, and as pressure on health care resources grows, it w i l l be increasingly necessary to know i f and when a trained clinician is necessary and how to adapt services for distance delivery and self-care. The results o f this study suggest that visual creative expression has significant potential as a modality o f self-care for women with breast cancer and that it may lend itself to distance delivery. There is a need for further research to gain a better understanding o f the necessity o f a trained clinician for facilitating the kinds o f beneficial processes and outcomes that were brought forward in this study and to learn how to support self-care through visual creative expression. Also, pilot studies are needed to determine i f and how women with breast cancer could make use o f art-based psychosocial services delivered from a distance, possibly via the internet or via workbooks sent through the mail. Another hypothesis generated by this study is that having an outward focus or an altruistic purpose with one's art making enables a beneficial inward focus and that visual creative expression has special relevance for psychosocial support for women wi th breast cancer because the possibility o f an inward and/or an outward focus is always there. Research is needed to determine whether an outward or altruistic purpose does indeed make helpful introspection more possible for some women. 165 Another important question has to do wi th knowing in advance who would benefit from visual creative expression during the experience of breast cancer and what form o f visual creative expression would be most useful to a particular woman: independent art making, individual art therapy, group art therapy, community art projects, or some alternative form o f art-based psychosocial support? This study leaves the question o f who might benefit wide open and gives only a few clues as to what form of visual creative expression might be most useful in a given situation. Additional research is needed to determine who is most l ikely to benefit from visual creative expression in relation to the experience o f breast cancer, how this could be known in advance, and what format might be best for a particular woman. The rich results o f this study show that narrative inquiry based on interviews wi th those who have actively participated in art therapy and/or art making can be a fruitful research approach for addressing questions about art therapy. Historically, research about art therapy has been conducted almost exclusively by art therapists who have used their interpretations o f client artwork as their primary research evidence. The reliance on interpretations o f artwork as evidence is a severe limitation o f much art therapy research. The expectation that interpretations o f artwork wi l l be the primary evidence (e.g., Wadeson, 1992) precludes other important sources o f research evidence, such as the perspectives o f those who have received art therapy. Qualitative approaches based on interviews are well developed and well understood in fields that are closely related to art therapy. Art therapy researchers can broaden the scope of art therapy knowledge by using these approaches. There is a widely acknowledged need for more research about art therapy (Gantt, 1998; Kaplan, 1998). This study is an example o f research about art therapy that does not rely on interpretations o f client artwork and therefore could have been conducted by someone other than an art therapist. For the field of art therapy to continue to gain legitimacy and significance within the wider world o f helping professions, it is important for people in other fields to become involved. Interdisciplinary research endeavors have significant potential to advance our knowledge of art therapy. Limitations The observations contained in this discussion are tied to the stories o f the women who volunteered for the study. Most o f the women volunteered because they wanted to talk about how they had benefited from art making or art therapy in order to help other women with 166 breast cancer. Some wanted to help keep art therapy services from being cut from hospital budgets. Women wi th different motivations might have said more about negative experiences, disappointments, or other aspects o f their experiences. Although the 17 women were a diverse group in some ways— fo r example, there was socioeconomic diversity, a range o f ages, and a range of attitudes about art/art therapy—they were similar in others. Many of the women who talked about their experiences wi th art therapy had at least some o f their art therapy wi th the same art therapist (she helped wi th recruiting). At least four countries o f origin were represented, but there were no women in the study from some of the major ethnic groups in the two regions represented in the study (e.g., there were no Asian women in the study). Women wi th other backgrounds might have told very different kinds o f stories—about not f inding visual creative expression helpful, or finding it helpful in ways that were not mentioned by the women in this study. To gain a deeper understanding o f how art making and art therapy can be helpful to women with breast cancer, it would be useful to hear from women wi th other backgrounds. This is particularly important given that the purpose o f this research was to help find ways to make psychosocial support more widely available, including to women with breast cancer for whom standard (verbal) forms o f support may not be culturally acceptable. I chose to ask women directly about their experiences because so much o f what has been written about creative expression and illness has been from the perspectives o f people other than the patients/clients themselves. Women wi th breast cancer are the first-line authorities on the topic o f the study and it was important to hear what they had to say. I spoke to women wi th breast cancer directly, even though it is considered difficult to f ind out about therapeutic process from the client's point o f view because the process is reflexive and covert and because recall and construction are impossible to separate (Rennie, 1992). Although all the women seemed surprisingly able to put words to their experiences, which I attribute in part to their strong desire to be helpful, I recognize that there probably was much more that could have been said, and that the women might have told different stories in a different context. 167 Conclusion The study produced comprehensive answers to the question "How have women with breast cancer used art making and art therapy for meaning making?" As a descriptive study presented through the research participants' own words, it gives a clear and well-validated view of how 17 women in two countries used art therapy and independent art making to address psychosocial needs that arose for them as a result o f breast cancer. The study provides detailed explanations from the perspectives o f women with breast cancer o f how certain beneficial outcomes that have been proposed in existing literature—such as increased inner strength, heightened emotional expression, reduced distress, increased sense of purpose, and improved sense o f sel f—can be achieved through visual creative expression. As an interpretive study in which abstract concepts have been generated from descriptive findings, the study provides understandings that are transferable and widely applicable. In their narratives, the women who participated in this study portrayed visual creative expression as a flexible, compelling, and powerful means o f addressing multiple psychosocial needs simultaneously. Above all, this study shows that the women valued visual creative expression as a way to reduce the feeling o f threat to existence, aff irm present existence, and promote the ongoing existence of their strong psyches within their threatened bodies. The findings o f the study advance understanding o f meaning making in relation to breast cancer by (a) distinguishing clarity from coherence as a goal o f meaning making, (b) illustrating resistance to the designation of "cancer patient," (c) proposing a significant interplay between altruism and self-focus for women with breast cancer, and (d) highlighting the importance of self-affirmation. Through the examination o f independent art making in addition to art therapy, the study illuminates qualities o f visual (non-verbal) creative expression that distinguish it from other formats for providing psychosocial support to women wi th breast cancer—qualities that can be harnessed for the development o f psychosocial support services that would increase the choice of support services available to women with breast cancer, and further enhance the availability o f appropriate support through translation into self-care, adaptation to distance delivery, and incorporation into narrative therapy and existential psychotherapy. When taken together, the four storylines that are the primary results o f the study tell a story o f distress and existential despair being soothed and actively counteracted. Clarity, purpose, and meaningfulness are achieved in the women's narratives. Identities are revised and solidified. Existence is affirmed, confirmed, and proclaimed through the making o f images and objects that are witnessed by others. Art has its own energy in the narrat ives— as archetype and raw life force. It has a momentum that pulls those who touch it. It links women wi th each other and with larger energies. It gives the women an avenue for taking charge of their situations and for satisfying multiple needs according to their own terms. This study is a story in itself. It is for women with breast cancer who would like to know how others took visual creative expression as a path. It is for clinicians, researchers, and caregivers interested in rising to the urgent challenge o f making appropriate forms o f psychosocial support available to all women with breast cancer, and for those who can use the understandings generated by this study to clarify and strengthen their own endeavors, whatever they may be. 169 References Achterberg, J. (1985). Imagery in healing: Shamanism and modern medicine. 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Appendix A: Recruitment Flyers 180 BREAST CANCER and ART THERAPY The University of Br it ish Columbia is doing a research study about breast cancer and art therapy. We would like to hear from women who were diagnosed with breast cancer in the last 3 years and who have done art therapy. W e are gathering information that will help us provide a r t therapy to women with breast cancer across Br it i sh Columbia. I f you would like to be part of the study, we will want to talk with you one-on-one e ither once or twice, and possibly invite you to join a group discussion. Please pass this on to anyone you know who might be interested in participating. To join the study or f o r more information, phone: Kate Collie xxx-xxx-xxxx or Joan B o t t o r f f xxx-xxx-xxxx 181 BREAST CANCER and ART THERAPY As a PhD student at the University of British Columbia in Vancouver, Canada, I am doing research about breast cancer and art therapy. I am gathering information to help improve art therapy services for women with breast cancer. A portion of my interview study will be conducted in the San Francisco area in June 2002.1 would like to hear from women who have had breast cancer and have done art therapy - or who have used their own art making to help with healing from breast cancer. I f this describes you, please contact me to join the study. I will want to talk with you either once or twice for about one hour. You will receive $20 as a thank-you and to cover the cost of any long-distance phone calls required to get in touch with me. To join this Health Promotion study, or for more information, please phone xxx-xxx-xxxx PST (Kate Collie) or J^JCX *"* ̂ CXX "*  xxxx PST (Prof. Joan Bottorff) We will phone you back. Or email Kate Collie at kcollie@interchange.ubc.ca Appendix B: Consent Form 183 Informed Consent Form for Interview Participants Title of study: Meaning Making through Art Therapy for Women with Breast Cancer: A Telehealth Project Investigators: Dr. Joan Bottorff, Professor, School o f Nursing, UBC xxx-xxxx Dr. Bonita Long, Professor, Counselling Psychology, UBC xxx-xxxx Dr. Cristina Conati, Assistant Professor, Computer Science, UBC xxx-xxxx Kate Collie, PhD Student, Institute o f Health Promotion Research, UBC xxx-xxxx Purpose of this research study: The purpose o f this study is to gather information that w i l l be used for the creation o f an Internet art therapy service for women with breast cancer. Information w i l l be gathered through individual interviews, in-person focus groups, and email focus groups. We are particularly interested in hearing from women who have experienced breast cancer themselves and who used art or art therapy while dealing with breast cancer. Procedures: I f you choose to take part in this study, one o f the researchers or a research assistant w i l l meet either once or twice to talk to you about your art experiences since you were diagnosed with breast cancer. Each meeting wi l l last no more than two hours and w i l l be held at a time a place that is comfortable for you. I f this format is not suitable, you may choose to have shorter meetings and/or to answer the interview questions in writ ing. You may also be invited to participate in a 2-hour group discussion about creating an Internet art therapy service for women with breast cancer. Confidentiality: Any personal information contributed to this study w i l l be kept confidential. A l l documents w i l l be identified only by code number and kept in a locked filing cabinet. The computer used for preparation o f transcriptions, analysis, and reports w i l l be password-protected. Participants w i l l not be identified by name or by other identifying information in any reports o f the completed study. The data from this study may be used again for more research, but only i f approved by the appropriate university committees. The information collected in this study may be used for teaching purposes without revealing any information that could identify you. Page 1 of 2 184 Risks/Benefits: You w i l l not receive any direct benefits from participating in this study and you wi l l not be paid to participate. But we do think that your participation w i l l help make psychosocial support, particularly art therapy, more available to women experiencing breast cancer. There are no expected risks (problems) related to taking part in this study. Contact: I f you have any questions about this study or desire further information either now or later, please contact Dr. Joan Bottorff (phone: xxx-xxx-xxxx, email: Bottorff@nursing.ubc.ca) or Kate Collie (Phone: xxx-xxx-xxxx, email: kco 1 lie^interchange.ubc.ca). I f you have concerns about your treatment or rights as a research participant, you may contact the Director o f Research Services at the University o f British Columbia, Dr. Richard Spratley, at (604) 822-8598. Consent: I understand that my participation in this study is voluntary and that I may refuse to participate, or withdraw from the study at any time without penalty o f any kind. I understand that my future health care with not be changed in any way by the choice I make about taking part in this study. I have read the above information and have had a chance to ask questions about the study. I have received a copy o f this consent form. I freely choose to take part in this study. Please print name Signature o f Participant Signature o f Witness Date Page 2 of 2

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