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Drawings from a dying child : a case study approach Bertoia, Judi 1990

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DRAWINGS FROM A DYING CHILD: A CASE STUDY APPROACH By JUDITH DIANE BERTOIA A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES (Department of Counselling Psychology) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1990 © Judith Diane Bertoia, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, 1 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. The University of British Columl Vancouver, Canada Department Date DE-6 (2/88) i i ABSTRACT Only in the past two decades have adults become aware that terminally i l l children do know at some level when they are dying. This research used a case study format to investigate the changes in how one child dying of leukemia viewed herself. Specifically, i t looked for symbolic and emotional themes which emerged in the material, including Decathexis (separation) and Rebirth. Each of twenty-eight drawings created by this child was analyzed in-depth for content by the researcher. Convergent material from hospital records and a parent journal supplemented the stories and teacher notes accompanying the drawings. Six experts from three countries also categorized each drawing for images of Decathexis and Rebirth. I n i t i a l l y , themes of threats, dreams, trickery and intuition appeared along with fear and sadness. Once the child seemed to clearly understand that she would die, these changed to fading and distancing images, indicative of separation. There was a slight increase in images supporting themes of resignation and happiness. Physical deterioration and resistance appeared throughout the series as distortions of a g i r l and dilapidated and edged houses. Themes of a new home and travel also appeared throughout. The classification by experts according to Decathexis and Rebirth resulted i n unanimous agreement on twenty-five per cent of the pictures and two thirds of the experts agreed on the placement of eighty-six per cent of the pictures. It would appear that on one i i i level the child knew from the beginning that she would die, but at another level she resisted that knowledge for a time. As clear awareness of death was developing, defensive themes such as trickery and dreaming appeared in stories which accompanied the drawings. However, the images, themes and convergent material suggest that she reconciled the dual awareness levels and worked towards acceptance of her fate. i v TABLE OF CONTENTS Page Ti t l e page Abstract i i Table of Contents iv List of Tables v i Acknowledgement v i i Chapter 1. Introduction Background 1 Statement of the Problem 7 Subproblems 7 Underlying Propositions 7 Definitions 8 Delimitations 11 Limitations 11 Organization of the Study 12 Chapter 2. Review of the Literature Children's Awareness and Expressions of Dying 14 Models of Understanding 20 Use of Drawings 27 Analysis of Drawings 29 Case Study Approach 30 Significance of the Research 31 V Page Chapter 3. Design of the Research Research Design 34 Rationale 34 Data Collection 36 Data Analysis 42 Chapter 4. Analysis of the Data Pictures 45 Experts' Classifications 107 Chapter 5. Summary, Conclusion and Recommendations Summary I l l Conclusion 121 Implications for Theory 130 Recommendations 135 References 138 Appendices Appendix 1: Information Sheet 143 Appendix 2: Drawing Classification Form 149 Appendix 3: Figures 1 - 28 151 Appendix 4: Text to Accompany Figures 1 to 28 165 Appendix 5: Chronological Order Matched to Random Order 178 Appendix 6: Expert Classification of Random Drawings According to Decathexis (D), Not Applicable (NA), and Rebirth (R) 180 v i L i s t of Tables Page Table 1: Chronological Order Matched to Random Order 178 Table 2: Expert Classification of Random Drawings According to Decathexis (D), Not Applicable (NA), and Rebirth (R) 180 Table 3: Comparisons of Drawing Classification by Model of Awareness 118 v i i ACKNOWLEDGEMENT I would like to express ray deep gratitude to Dr. John Allan. He has provided unfailing support as my supervisor and constant encouragement for my professional and personal growth. For their time, suggestions and guidance, I thank Dr. Larry Cochran and Bob Steele. For their encouragement and gentle teaching, I am grateful to Dr. Gregg Furth and Dr. Walter Boldt. For their contributions i n time and energy, I thank Stan Auerbach, Gwen Buker, Suzanne E l l i o t t , Bay Gumboc, Diana Livingston, Mary Ann New, and Corry Roach. I am grateful to ray parents Henry and Barbara for their early guidance and on-going encouragement. My family Wayne, Richelle and Kevin have provided immeasurable support, tolerance and love over the five years this research developed. This work is very much a reflection of them also. Finally, I am most grateful to Caroyl. Her incredible s p i r i t continues to teach us through her drawings. Her parents Doug and Carol have provided permission to use her material and encouragement when the task seemed overwhelming, and I thank thera. I stand i n awe of how this family coped with Caroyl's experience and death. Caroyl's legacy has been a profound g i f t . 1 CHAPTER 1 Introduction Although there i s a trend towards more open discussion of death and the dying process in society today than there was twenty years ago, a pervasive discomfort with the topic s t i l l exists. The reali t y of death i s brought home nightly in evening news. Death i s televised to us from Tiananmen Square, Central America and Eastern Europe. Increasingly, the number of deaths, and fear of death, from diseases such as AIDS have forced many adults to face their own mortality. Yet, some people s t i l l tend to repress the thoughts and emotions death e l i c i t s . The numbness that comes with viewing the carnage i n movies such as "Rambo" fuels the " i t can't happen to me" fantasies many people entertain, just as the re-appearance of many "dead" performers in the visual media perpetuates the wish to deny personal mortality. While there has been a trend to more open discussion of death, and to more support for the dying and their loved ones such as the hospice movement and bereavement groups, many adults retain a fear, a wish to avoid both the dying and the bereaved. This discomfort i s intensified when death involves a child, whether a grieving or a terminally i l l child. Many people avoid the topic with children, believing this avoidance protects the child. Others think children do not understand death, and so there 2 is no need to talk with them about death issues. While children's understanding of death depends on many factors such as age and experience, they do know some of what has happened and w i l l create their own version of circumstances when not told. Perhaps even more disconcerting i s the thought that children do know when they are dying. If no one talks to them about i t , what can they use to f i l l i n the blanks; what frightening experiences do they create in their imaginations? Several authors indicate that terminally i l l children do, at some point in their disease, know they are dying. Elizabeth Kubler-Ross (1981) cites several examples of children expressing this knowledge in either symbolic, nonverbal language (drawings and play) or in symbolic verbal language, depending on their age. A few are even able to clearly verbalize their knowledge, "I know I'm going to die very soon and just have to talk to somebody about i t " (p. 21) from an eight year old. Bluebond-Langner (1978), an anthropologist, studied hospitalized, terminally i l l children and discovered they progressed through five stages of changing self-concepts, f i n a l l y viewing themselves as dying. These changes were expressed through their behaviors and language. In some cases the awareness of being near death was overtly stated, depending on previous interactions with the adults involved. Bluebond-Langner found that what the children were able to clearly communicate depended strongly on 3 their perceptions of adult expectations of them and on what any given adult could tolerate. In There is a Rainbow Behind Every  Dark Cloud (Dezedorf et a l . , 1978), several children have worked together to write about their experiences with potentially fatal diseases and they say It was hard for most of us to talk about how we f e l t inside. And i t was hard for us to find someone who would really li s t e n without being afraid. Sometimes the questions we were afraid to ask were: "Am I going to die?" "What is dying like?" We knew certain questions would bring tears to our parents' eyes so we learned not to ask those questions. A l l of us seemed to want to protect our parents. At the same time, we wanted to be physically close to our parents most of the time. Lots of times we didn't want them out of our sight (p. 31). Siegel (1989, p. 232) reports the case of a two year old, who, during his f i n a l hospitalization, was able to t e l l his mother "I'm going to be a l i t t l e bird soon and f l y off. I wish you could come with me, but you can't". A few weeks later, this same child indicated he wanted a kiss on either cheek from Dr. Siegel, a privilege never before permitted his doctor; he died fifteen minutes later. 4 Bach (1969) has been working i n this f i e l d for decades and has repeatedly found that children's drawings reveal both their psychological understandings of what i s happening to them and their physiological state. She uses the phrase " i t knows" indicating that even before the children are consciously aware of their prognosis and revealing i t in their symbolic language, their art indicates a preconscious knowledge of their illness and i t s outcome. She uses this information to assist the child and family in dealing with the impending death when that i s appropriate for their needs. Keipenheuer (1980) and Furth (1981) have written of similar findings and the use of drawings with c r i t i c a l l y i l l children. Bach (1969), Keipenheuer (1980), and Furth (1981), a l l advocate the use of drawings with children to determine what they know about their disease. Some children, especially older, verbal children may be able to articulate what they already know and what they s t i l l need to know, but many cannot. This i n a b i l i t y may be a result of being socialized into not acknowledging their awareness, or i t may simply be because they lack the verbal s k i l l s to bring the topic into the open. There are also some children who should not have discussions go beyond their feelings about their i l l n e s s . By "reading" a child's drawings, Bach believes those adults involved can help the child at the appropriate level of need. Kubler-Ross (1981) writes, 5 Spontaneous drawings reveal the same information a dream w i l l reveal. It can be obtained in a few moments in almost any environment - hospital, school, or home. It costs simply a piece of white paper and colored pencils. It sheds light within minutes on the preconscious knowledge of children and adults - a tool simple and inexpensive and easily accessible, as long as we have enough conscientious therapists who have been trained i n the interpretation of this material (p. 17). Allan (1988), describes the value in using drawings with children for a variety of problems, including terminal il l n e s s . Bertoia and Allan (1988) detail a variety of techniques and situations using drawings with children who are coping with death. Having children draw permits the expression of inner issues in a way that can be easily shared with another. This sharing allows those adults willing to talk with a child an opportunity to gain some insight about what i s significant for them at the moment. It also allows the adult to see what i s happening for the child, and thus avoid projecting the adult's perspective of what i s happening into the child's work. When there i s an opportunity for serial drawing, that i s , for the child to meet alone on a regular basis with a supportive adult for creative a c t i v i t i e s , Allan (1978) believes the child's 6 unconscious material is more readily expressed in symbolic form. This activates the healing potential of the psyche, thus permitting the terminally i l l child to access inner resources for coping with problems, including death. Rando (1984) reviews the literature on the awareness of terminally i l l children and writes that i t is a moot issue whether or not these children can comprehend their own death, but i t is necessary for adults to help them with their feelings and with whatever understandings they do have. She refers to the loneliness and fear a terminally i l l child feels with no one to talk to about the disease and prognosis. Given that terminally i l l children do have some understanding of and emotions related to their dying, and that many adults are unwilling to talk to them about i t , i t i s important that the few who are willing be effective and understanding of what the child needs. It i s also important to understand the experience of a dying child. Since pictures drawn by children reveal their inner experience, this research intends to describe what that experience may be, as indicated in one child's drawings. The following material in this chapter w i l l include a statement of the problem along with the subproblems and underlying propositions. It w i l l then provide definitions for terras used throughout the research and explain the delimitations and limitations of the study. Finally, i t w i l l describe the 7 o r g a n i z a t i o n o f the remaining chapters f o r t h i s r e s e a r c h . Statement o f the Problem The purpose o f t h i s i n v e s t i g a t i o n i s t o d e s c r i b e how the content o f a s e r i e s o f drawings made by one t e r m i n a l l y i l l c h i l d r e f l e c t s changes i n the v iew o f s e l f over t i m e . Subproblems T h i s i n v e s t i g a t i o n w i l l d e s c r i b e themes of d e c a t h e s i s and r e b i r t h appear ing i n the drawings . I t w i l l l o o k a t whether the drawings o f a t e r m i n a l l y i l l c h i l d , whose work i s done a t home, appear t o r e f l e c t a p r o g r e s s i o n through the same stages o f a changing s e l f - c o n c e p t as h o s p i t a l i z e d c h i l d r e n e x p e r i e n c e d . U n d e r l y i n g P r o p o s i t i o n s The work o f t h i s r e s e a r c h i s based on the f o l l o w i n g p r o p o s i t i o n s : 1. t h a t t h e r e i s an unconscious and an i n t e r - c o n n e c t e d n e s s between the p h y s i o l o g i c a l and p s y c h o l o g i c a l aspects o f an i n d i v i d u a l , and drawings are one form o f e x p r e s s i o n from these aspects o f the i n d i v i d u a l . 2. t h a t h o s p i t a l i z e d , t e r m i n a l l y i l l c h i l d r e n progress through f i v e changing stages o f how they d e f i n e themselves . 8 Definitions For the purposes of this research, the following definitions w i l l be used: Directed drawings. Drawings which are created following a request from another person, either for a specific topic or simply for a picture, "Would you like to draw a picture?" Spontaneous drawings. Drawings initiated by an individual without any stimulus from another person. Stages of i l l n e s s . These stages have been defined by Bluebond-Langner (1978) based on her study of hospitalized, terminally i l l children. Stage 1: Seriously i l l The children have thought of themselves as well un t i l symptoms necessitated hospital admission for tests. This experience and reactions of family to the diagnosis leads to a new view of self as being "seriously i l l " . This view of self persists u n t i l there i s evidence they are getting better. Stage 2: Seriously i l l and w i l l get better Regular out-patient c l i n i c v i s i t s for treatment result in the children learning of various drugs and their effects, usually from conversations with other children. In stage two, the drugs have made them feel better and most most people treat them normally again. 9 Stage 3: Always i l l and w i l l get better Following the f i r s t relapse the children's view of self changes again, to always being i l l . However, once the children are in remission again, the parents and consequently the children come to believe that one can be sick many times, but one can s t i l l recover. Stage 4: Always i l l and w i l l never get better More relapses, drug complications, and on-going pain force the children to see themselves as always i l l and never being completely better. Stage 5: Dying Once children who are in Stage 4 hear about the death of a peer from the same disease, they move into Stage 5. In various forms, either overt statements, or through symbolic verbal and nonverbal images, the children indicate that they know they are dying. Decathesis; This refers to a diminishing investment of energy being directed into attachments. In the past the child has put considerable emotional energy into relationships and attachments to people, pets, favourite toys, places, and so forth. With death approaching, everything must be l e f t behind and the child must gradually detach from them. Decathesis w i l l have two aspects. One w i l l be the awareness of death reflected i n various death images, and the other w i l l be separation or distancing from a l l attachments. 10 The dying must separate from everyone and everything they love, from this world and even from their own bodies. There i s a decreasing interest i n wordly events, a sense that these things do not matter as much anymore. There are often images of physical separation and distancing such as travel or barriers. There i s also a need to recognize and deal with the deterioration of the body which w i l l lead to death and force the separations. As the disease continues and the body f a i l s and i s i n pain, the children gradually move towards an awareness of the dissolution of the "shell" they have inhabited and to which they are so attached. The task of decathesis then is a d i f f i c u l t one of separating from a l l things of this world. Rebirth. This refers to some form of transcending death, of being re-born into some new frame of existence. In this sense, the rebirth also applies to the development of some form of tolerance for the dying process and for what happens after this body dies. For many i t w i l l be a clearer spiritual awareness of whatever they believe happens following biological death. This may manifest as religious images, as a form of continuation in this world within the memories of others, or as a specific contribution such as a poem written for a loved one or tree planted with great care. It can also appear as some other personal belief system which provides comfort. The development of the rebirth awareness allows for some degree of mental well being; otherwise a l l the emotions surrounding 11 the approaching death and total separation could be overwhelming. This transformation or rebirth can provide for a relatively peaceful transition into death, and at times the images are f i l l e d with joy. Delimitations This research w i l l be concerned with twenty-eight of the sixty drawings made by Rachel (pseudonym). This limit i s set for three reasons, the f i r s t being a possible influence from family. A few of Rachel's spontaneous pictures were drawn the evening prior to the researcher's v i s i t s . Those drawings made i n the presence of family members or with directions and encouragement from family are not included i n this study. Secondly, some of the drawings were "scribbles, lines and patterns", according to Rachel and their abstract nature makes many of them d i f f i c u l t to analyse. Finally, some of the drawings were made following guided imagery activities and the direction was to draw something specific from the imagery, which obviously influenced the content. Thus, just over half of the drawings were eliminated i n this pre-selection process primarily because of the potential for strong influences from others or because of possible d i f f i c u l t y with interpreting the content. Limitations A potential limitation i s that i n choosing which of the pictures w i l l be analyzed, the researcher may omit drawings which 12 would appear significant to others, or which, through inclusion or exclusion, may bias the findings. By defining the selection process prior to carrying i t out, the researcher hopes to decrease this possibility. For some readers of this research, who are only used to art as therapy, the fact that analysis occurs post hoc may raise some questions. This child had died before any in-depth analysis took place. Based on the principles that the drawing alone, in the presence of a caring and supportive adult reveals the inner world (Allan, 1988; Furth, 1988) and that accurate physiological and psychological information is revealed through this process (Allan, 1988; Bach, 1975; Furth, 1988; Kiepenheuer, 1980), this researcher believes that accurate interpretation is possible with cautious, thorough examination of the drawing content. Organization of the Study: Chapter One provides an introduction to the study. It consists of the background to the problem, a statement of the problem, a l i s t of the definitions, the delimitations, the limitations and the organization of the study. Chapter Two presents a review of the literature related to children's awareness of their illness and dying, as well as the literature related to the use of drawings with children in crisis. It also addresses the use of a case study format and the justification for this research. Chapter Three describes the design of this research. It includes 13 includes the rationale for a case study approach and the procedures for data collection. There i s also a discussion of the techniques to be used for in-depth analysis of picture content and for classification of the pictures by experts in the f i e l d . Chapter Four presents the analysis of the data. The f i r s t part w i l l be a synthesis of the in-depth analysis of picture content with the convergent material, and the second part w i l l be a presentation of the results of classifications by experts i n the use of drawings. Chapter Five provides a discussion and summary of the themes and patterns which emerged in the data analysis thus addressing the problem of what changes appear over time. This chapter w i l l also address comments and queries raised by the physician assisting with medical interpretations, by the family, and by the experts who took part in classifying the drawings. It w i l l discuss the themes described in the subproblera as implications for theory. Finally, i t w i l l end with suggestions for future research to further address the experience of terminally i l l children. 14 CHAPTER 2 Review of the Literature Five different aspects of the literature pertinent to this research w i l l be reviewed i n this chapter. F i r s t , children's awareness of dying and how they express this awareness w i l l be addressed. Secondly, two models of how this awareness develops w i l l be explained. Next, the use of drawings with children and then analysis of drawings w i l l be explored. The use of case studies i n this f i e l d w i l l be described. This section w i l l then conclude with an explanation of where this research f i t s into the existing theory. Children's Awareness and Expressions of Dying A great deal has been written about children's cognitive understandings of death (Bertoia & Allan, 1988; Betz & Poster, 1984; Matter & Matter, 1982), and about the care of the terminally i l l child (Van Dongen-Melman & Sanders-Woudstra, 1986; Rando, 1984) but the intent of this section i s to review the actual awareness and understanding that terminally i l l children have about their own dying process. Rando's survey of the literature (1984) indicates that before the 1970s, two common beliefs were that children, for a variety of reasons, should be protected from the knowledge of the complete truth about their disease, and that most children did not know, in 15 an adult sense, that they would die and so were not concerned about i t . Since that time there has been increasing evidence that terminally i l l children do have an understanding of their prognosis and also have strong emotional responses to i t . She indicates that caregivers should operate on the assumption that children do know and, therefore, open communication should be encouraged. Her findings also indicate that although there must be communication with children, i t should be in the context of their a b i l i t y to understand, as well the appropriateness of the information from the family's viewpoint. In their very comprehensive literature review, Van Dongen-Mellman and Sanders-Woudstra (1986) also found this current encouragement for openness based on the recognition that the child is aware, but are much more c r i t i c a l of the need for this to be done effectively. They note that very few of those providing empirical evidence are able to describe the routes for effective communication. However, they do cite some authors who provide details about the use of play, art, groups, counselling and drawings as vehicles for helping children cope with the disease, prognosis, and intense emotional reactions. In spite of the vast amount of existing information on the psychosocial aspects of childhood cancer they reviewed, they s t i l l conclude there is a further need for new knowledge of the child's course of becoming aware of the life-threatening aspects of the disease. 16 Kubler-Ross, who by 1981 had been working almost exclusively with dying children, writes, "Small children, even three and four-year-olds, can talk about their dying and are aware of their impending death" (p. 51). In this sense "talk" i s at one of three levels of language children use. She explains that there i s a clear verbal level, "You know Mommy, I feel so sick now that I think this time I'm going to die" (Kubler-Ross, p. 59). While this child was only four at the time and survived un t i l he was nine, his history of illness allowed him to understand even at that young age and to verbalize his awareness. A seven year old g i r l , near death, repeatedly asked different adults what i t was going to be lik e , "when I die," unt i l she found an adult who would even talk with her about i t . Another level of expression is a symbolic verbal level, the message uses words but is much less clear u n t i l the context i s understood. A parent who was convinced her twelve year old son had not talked about dying found the following poem "The Flame" after his death The flame i s like a human, It lives and dies. Its l i f e span i s a wild impetuous one During i t s span-it f r o l i c s dances and Appears to have a carefree existence. Although i t might be joyous in a short period 17 It has a tragic death The tragedy i s i n i t s struggle not to die. But f i r s t the flame casts an eery bluish magnetism Just as i t ' s about to let go, i t flickers and springs Back to l i f e again. At that moment i t appears that the v i t a l desire For survival w i l l be the victor. But neither flame nor human is destined for eternal l i f e Death i s near-the flame sputters as i t reaches out to grasp on to a dangling string, trying to resist i t s overshadowing fate-but to no avail... Death has exhausted i t s opposition And conquered! (Kubler-Ross, 1981, p. 61) In the chapter "Children's Inner Knowledge of Death and Their Symbolic Language", Kubler-Ross (1983) cites a great many poems, stories and dreams related by children which clearly indicate their knowledge. The third form of communication is through nonverbal symbolic language, which consists of drawings, play, and symbolic gestures. Kubler-Ross (1981) describes an angry, depressed thirteen year old who had been waiting, in hospital, over a year for a donor kidney. His constant behavior of pretending to shoot l i t t l e g i r l s was distressing the nursing staff and upsetting the other children. When she spoke to him, he replied, "Did you notice I not only pick 18 l i t t l e g i r l s , but they a l l have good kidneys?" Bluebond-Langner (1978, p. 185) relates the story of a child who took paper dolls which she had earlier said looked like her and buried them, "Put them in their grave, i n the Kleenex box. Let me do i t . " and of a l i t t l e boy known for his art work who suddenly drew only graveyards. These too are examples of nonverbal symbolic language. A l l three forms can clearly indicate the child's awareness. The group of children (Dezendorf, et a l . , 1978) who wrote There is a Rainbow Behind Every Dark Cloud describe their experiences, emotions and coping strategies as they faced l i f e threatening illnesses. They found i t helpful to talk about death and their emotional responses, with other kids when adults were uncomfortable, and to draw pictures, because the reality of the images made death less frightening. This group was very open about their awareness and obviously the group effect was helpful. Furth (1981) believes that dying children are able to reach a sense of completeness prior to death even i f i t is not expressed in adult terms. He indicates that the child's level of awareness about the disease is indicated in drawings. Part of his training was with Bach in London who began work in this f i e l d in the 1930s. Her approach has been to interpret the drawings, and only then have the doctors involved in the medical care of the individual share the case history. Her great detail in the analysis and 19 cross-checking, as well as her wealth of knowledge have made her a valuable and respected source in this f i e l d . Bach (1966) states her strong belief that there i s a link between the psyche and soma (psychological and physiological s e l f ) . She indicates the drawings done by two c r i t i c a l l y i l l children which she has analyzed i n the main text demonstrate this relationship. She appends one hundred and f i f t y colour figures so the reader can follow the detail she presents. She concludes that this material offers visible proof that, deep within, every patient knows whether there w i l l be recovery or death. She very supportively writes to those who have d i f f i c u l t y accepting this material, I should like to say to the reader of this paper: i f what the children t e l l us in their drawings awes you and you would rather not have i t true, be assured that we too who have worked on them for so many years s t i l l find our hair stand on end and breathless silence befall us... (Bach, 1975, p. 102). The linkage between mind and body i s especially important at c r i t i c a l moments i n a child's l i f e and when the l i f e i s threatened the psyche reacts (Bach, 1969; Furth, 1988). Keipenheuer (1980) has used children's drawings i n his medical practice as an additional tool to better understand both the physiological and psychological status of his young, c r i t i c a l l y i l l patients. Siegel 20 (1989) also believes i n this connection, and being a surgeon considered s c i e n t i f i c a l l y how the actual link occurs. He cites a neuropeptide theory advanced by Candace Pert and others which suggests the neuropeptides "as the locus where mind and body meet and cross over" (Siegel, 1989, p. 102). Bach (1969), Keipenheuer (1980), Furth (1981), and Siegel (1989) a l l use the interpretation of drawings to decipher what i s happening for the child and a l l believe children are aware i f they are dying. Models of Understanding Bluebond-Langner (1978) studied hospitalized children terminally i l l with leukemia and believes this awareness of dying develops over time. She explains there i s a changing view of self which results from the synthesis of information and disease experience. There are five stages of acquisition of factual information about the disease: 1. " i t " i s a serious illness 2. names of drugs and side effects 3. purposes of treatments and procedures 4. disease as a series of relapses and remissions (-death) 5. disease as a series of relapses and remissions (+death) The children need concrete information and experience before they move to a different stage. They need to know the names of drugs and side effects and get that information by having the disease which needs those treatments in the f i r s t place. Secondly, 21 they need the experience such as nosebleeds or relapse to relate the information to their own experience. The acquisition of information i s cumulative and the stages are sequential, progressing from diagnosis or "well" on through stages one to five with no reversal in sequence. Although there is a transition time as they move closer to the next stage, the children are not identified as being in the next stage u n t i l they have both information and experience from the previous stage. This i s also true of the five stages of changes in self concept: 1. seriously i l l 2. seriously i l l and w i l l get better 3. always i l l and w i l l get better 4 . always i l l and w i l l never get better 5. dying (terminally i l l ) The integration and sequence is explained in more detail below using the labels which indicate the level of awareness. Stage 1: Seriously i l l The children have been admitted to hospital for tests, a bewildering and frightening experience for children and families. At f i r s t , children view themselves as "normal" children, expected to behave as other children, using typical childhood techniques for getting what they want. Following diagnosis based on their history, physical examination and test results, the children quickly become aware of the differences i n how adults act towards 22 them and of how many more gifts they receive. This leads to a new view of self as being "seriously i l l " which i s demonstrated by an "exhibition of wounds", where every v i s i t o r i s shown the pricks from needles, on every v i s i t . The children's separation fears at this point are more of the unknown and unfamiliar rather than of the f i n a l prognosis. This view of self persists un t i l there i s evidence they are getting better; usually i t takes four consecutive c l i n i c v i s i t s , "consultations" with other children, and confirmation from their mothers that they are in remission. Stage 2: Seriously i l l and w i l l get better From regular out-patient c l i n i c v i s i t s the children learn of various drugs and their effects, usually from conversations with other children. They do not pass into stage two unti l they have experienced a remission and a few rapid recoveries from disease related incidents such as nosebleeds and headaches. Once they have passed into stage two the drugs have made them feel better and most people treat them normally again. The longer they are i n remission, the more they believe that they w i l l eventually get better. They essentially see themselves as sick before, but better now. Stage 3 : Always i l l and w i l l get better Following the f i r s t relapse the children are required to reframe their thinking of themselves. They have begun the chronic relapse-remission cycle and the familiarity of symptoms and 23 procedures return. There had been a time, perhaps a long time where a return to "normalcy" pushed the reali t i e s of the disease well into the background. They find that adults w i l l not talk to them about the disease or the drugs, so they resort to eavesdropping on the adults and discussing symptoms, drugs and side-effects with the other children. At the same time they need people, especially adults, around them. Adult reactions of avoidance and discomfort teach them appropriate social roles for maintaining the essential, supportive contacts. They come to associate their symptoms, the painful medical procedures and adult reactions of avoidance and tears with a view of themselves as being always i l l , but that at some future time they w i l l ultimately get better. Once they are in remission again, the parents and consequently the children come to believe that one can be sick many times, but one can s t i l l recover. Stage 4: Always i l l and w i l l never get better More relapses, on-going pain, and sometimes drug complications, force the children to see themselves differently. Their decreasing a b i l i t i e s , their greater removal from normal childhood a c t i v i t i e s , and the increasing hospitalizations create the sense of having better times and worse times, but always within the context of "being sick" times. They can do less and less for themselves, planning for the future stops or becomes very short term; they no longer think i n terms of "what I want to be when I 24 grow up" or even of distant holidays, they mourn the developmental stages they w i l l not experience. Stage 5: Dying Once children are i n stage 4 they may stay there for some time; but hearing about the death of a peer from the same disease, causes them to move into Stage 5. They realize the remission/ relapse cycle has a definite end, death. However, they cannot synthesize this information unt i l they are themselves in Stage 4, so that earlier deaths from the same disease w i l l not have this effect. It i s necessary for them to accumulate a l l the disease and treatment knowledge personally before this disastrous new awareness can take place. Their activities and interests now tend to have limited themes, often symbolically reflecting death. In various forms, either overt statements, or through symbolic verbal and nonverbal images, the children indicate that they know they are dying. For many, the cause of death of these others was a major focus, as was the similarity of that cause to their own circumstances. Communication becomes more of an issue at this stage. For many there i s a need to protect the adults, to maintain a form of mutual pretense. This is simply a way of each knowing what w i l l happen but not communicating this knowledge. In order to cope on a daily basis there i s a pretense between adult and child that everything w i l l get better. This keeps the needed adults close and 25 allows for r e l i e f from constantly dealing with the intense emotions. There i s decreasing communication with people and less cooperation with many procedures, especially painful ones which have not made any positive difference so far. For many there is an awareness of time, of not being here indefinitely and of not wasting time now. Bluebond-Langner indicates the transition from Stage four to five can be over hours or over months, depending on the circumstances, but ultimately a l l end up at Stage five at an inner level, knowing and expressing their awareness of their own personal death in some form. Kubler-Ross deals with a more spiritual aspect of children. She (1983) believes that a l l terminally i l l children become aware that they are dying, but cautions that for some this awareness may be pre-conscious rather than a conscious, intellectual knowledge. She believes that children who are hospitalized grow up more quickly than children who do not experience l i f e threatening il l n e s s . In response to a query from a nine year old with leukemia about what death was like, she wrote back a letter which he shared so often i t was ultimately printed for ready access to others. In the beautifully illustrated "Dougy Letter" (1979) she drew "Man" as a c i r c l e with four quadrants, each representing one aspect of the individual: intellectual, physical, emotional, and s p i r i t u a l . She believes that the child's awareness of death "comes from the 'inner, s p i r i t u a l , intuitive quadrant* and gradually prepares the 26 child to face the forthcoming transition, even i f the grown-ups deny or avoid this reality" (Kubler-Ross, 1973, p. 134). In her workshops she explains that one quadrant can enlarge either because an individual i s concentrating on i t , such as a time when intellectual activities dominate one's l i f e i n school or work, or because something happens that changes an individual's focus in l i f e . As death approaches, the spiritual component enlarges, especially i f there i s a gradual debilitation of the body as the disease progresses causing a natural diminishing of the physical quadrant. This concept adds a greater depth of understanding to the dying process than Bluebond-Langner's five stages. She (1969) writes that terminally i l l adults slowly separate from interest i n this world as death approaches, a time of letting go or "decathexis". At this time the dying s t i l l want the assurance they w i l l not be l e f t alone, but often they may not want a lot of visitors and there w i l l be decreasing interest i n the events of the world and activities of the vi s i t o r s . Near the very end they may want only non-verbal communication, the quiet holding of a hand or just the physical presence. Most of those Kubler-Ross encountered died without fear and despair, with a form of acceptance, especially when helped with the monumental task of separating from everything. In her experience, those who fight the disease and maintain a battle attitude u n t i l the very end may not have this acceptance and she cautions caregivers to be aware of 27 how they interact with the patient to avoid making the ending even more painful by attempting to force changes i n the patient attitudes. While Rando (1984) also describes this decathexis as occurring gradually throughout the dying process, with a fin a l withdrawal even from family in the last few hours of l i f e , she refutes Kubler-Ross's description of the acceptance of i t . Unfortunately, her source for this disagreement i s a personal communication from Humphrey, a long-term c l i n i c nurse for the dying (Rando, 1984, p. 445), which says the Kubler-Ross description i s seldom witnessed, and rather a realization of the inevitable happens, the patient may not be at peace with losing everything, but there i s no denying i t w i l l happen. The actual distinction between the two versions i s somewhat unclear and without the source i t i s impossible to make one's own interpretation. The two do appear to agree, however, that there i s a gradual process of leave-taking for the terminally i l l . Use of Drawings As indicated previously, Bach (1969, 1975) has used drawings as a basis for communication with terminally children for years. They provide a glimpse of the child's innermost, personal self. To a child, the form he paints, a house, a flower, etc. is not just a shape, i t i s his house, his flower: 28 they are an expression, an equivalent of himself. He may draw, for instance, his favourite toy horse being irradiated precisely at the spot where he himself had been X-rayed that very morning: the picture reflects his own condition (Bach, 1969, p. 16). By providing an awareness of what i s happening for the child, pictures can direct adult interactions i n the way which w i l l be most helpful to the child. Hammer (1985) expresses this same view, adding that children find i t easier to communicate, especially those things they w i l l not or cannot share verbally, through drawings. In this case, those unshareable things included sexual abuse and are detailed in the book's case studies. Furth (1988) provides and analyzes examples of drawings from children and adults drawn at a variety of c r i t i c a l times. Allan (1988) provides detailed case studies of how drawings have been used to help children deal with a range of trauma including physical and sexual abuse, divorce and terminal i l l n e s s . Each of these base their approach on the assumption that what the child draws comes from deep within, and represents aspects of the whole child. Drawings have been used i n the c l i n i c a l setting for many years as "projective techniques" (Hammer, 1958). They have been used as a tool to aid in medical diagnosis (Bach, 1966; Kiepenheuer, 1980; Siegel, 1989). In addition, they are commonly used now to assist 29 children and adults with expressing and healing psychological wounds (Allan, 1988; Bach, 1975; Furth, 1988; Kiepenheuer, 1980). Analysis of Drawings When undertaking the interpretation of a drawing, one must be very cautious about what one says (Allan, 1988; Furth, 1988). There i s always the danger of reading into another's creation that which i s , i n reality, a part of one's own psychology. There i s also a need to be tentative, for each drawing is a unique creation, reflecting the one who drew i t . The image may appear to be one thing to the viewer, yet is something quite different to i t s creator; the monster may turn out to be a favourite stuffed animal. Different approaches to deciphering a drawing include concentrating on the images and emotional response they e l i c i t (Allan, 1988), following a series of guidelines (Bach, 1977) or choosing from a series of focal points (Furth, 1988). As one becomes more involved with the drawing, an awareness of the images tends to lead the reader into the drawing, as i f one were part of i t . Because these images come from within, there i s frequently a commonality with other images created throughout human history. Krippner (1989) examined a wide range of religious and mythological death imagery and concluded that a common thread i s the sense of power over death, a theme of death and rebirth. Standard symbol dictionaries (Cooper, 1978; The Herder Symbol Dictionary, 1978) can provide useful information for interpretation as can common dreams 30 related to the subject of death (von Franz, 1986). Thompson and Allan (1987) provide some possible interpretation of common symbols used by children, and Bach (1966) and Furth (1973) provide insights into the colour preferences of leukemic children. Case Study Approach For research with children and drawings in this f i e l d the case study approach seems most preferred (Bach, 1975; Keipenheuer, 1980). It allows for the inclusion of many pictures as a supplement to the on-going history. Keipenheuer (1980) obtained more than 300 drawings from one leukemic child over three years. As the child's doctor he found the material contained in the drawings to be most valuable i n treating the child and helping the family deal with their own grieving process. By appending reproductions of the drawings, there i s an opportunity for others to follow the interpretations. Both of these are from Europe and consideration must be given to cultural differences when using comparisons in North America with images from the drawings presented in their case studies. Furth (1973) was unable to find any research similar to Bach's and Keipenheuer's in North America when he was conducting his own research comparison of the content of drawings of leukemic children with other children who were hosptialized but not with l i f e threatening situations and with healthy children. He set up a three part design. Each of forty-five children drew three pictures 31 over a period of three months. His s t a t i s t i c a l research was based on Chi-square analysis of the drawing content from the three groups and while the findings were not significant at the .05 level, there were distinct trends. Leukemic children tended not to f i l l i n their main objects, not to draw suns, but when they did draw them, they tended to be positioned differently, and to draw indoor scenes. Healthy children tended to draw faces on their suns. A second part of the research was to have a panel analysis by three art professionals. Their findings were that analysis was d i f f i c u l t because of the similarities i n the drawings, and two of the three had indicated (intuitively) that there was something different between the leukemic children's drawings and the other two groups, but could not be specific. The third part of the study was a case study technique and i n his conclusion he states that, Case study techniques are more effective for evaluation technique as compared to s t a t i s t i c a l analysis or panel analysis i n this type of work because i t takes into account the whole child and not just one element of information regarding his works (p. 143). Significance of the Research Bluebond-Langner found that hospitalized, terminally i l l children progressed through five different stages, citing "dying" as the f i n a l one. There i s no mention made of other stages which the children experienced following arrival at stage five. This 32 research w i l l investigate whether these findings extend to the child who i s hospitalized intermittently but whose drawings were done while she was at home, not institutionalized. In his doctoral dissertation "Impromptu paintings by terminally i l l , hospitalized, and healthy children; What can we learn from them?", Furth (1973) recommends that a larger number of impromptu drawings from each child should be collected for analysis and that the study should be longitudinal, i f possible beginning with the time of diagnosis. He also recommended that the stage of the disease should be taken into consideration. Kubler-Ross (1969) and Rando (1984) speak of a time of decathexis or separation. Following the publication of the analysis of some of Rachel's drawings (Bertoia & Allan, 1988), this researcher became aware of the possibility of more material being expressed in these drawings than had been included i n i t i a l l y . Rachel drew more than half of the collected drawings after she had indicated her awareness that she was dying, f i r s t i n her pictures and later verbally. In studying these drawings, this researcher hypothesized a spiritual component to Rachel's work. Although the researcher has shared this in various seminars and lectures, there has been no formal work describing this spiritual component. This case study research proposes to extend three aspects of existing theory by using the interpretation of one child's drawings: to investigate the findings of Bluebond-Langner with a 33 child who is not studied primarily in a hospital setting, to analyze a series of drawings from a critically i l l child obtained over several months, and to investigate the Kubler-Ross theory of increasing spirituality within a child as death approaches. 34 CHAPTER 3 Design of the Research This chapter presents the design of the research. It begins with the description of the design, then follows with the rationale for using a case study approach. It explains the procedures for data collection, and then the process to be used for in-depth drawing analysis is described. The chapter concludes with the procedures for classification of the drawings by experts. Research design The purpose of this research is to describe what the drawings of a terminally i l l child reveal about changes in how she views herself over time. It will investigate the content of twenty-eight drawings looking for her awareness of the progression of her disease and for themes of decathexis and rebirth. The analysis of drawing content will also be used to describe other themes or patterns which may emerge. This research is also concerned with the classifications by experts in the use of drawings. They will sort the twenty-eight drawings for the themes of decathexis and rebirth. Rationale The research will undertake a longitudinal, in-depth study of the experience of a l i t t l e g i r l while she was dying of leukemia. 35 Underlying this research is the uniqueness of having so many drawings from such a child for they reveal a great deal about her inner world. These drawings came into being as a natural part of her schooling at home; they were part of her daily routine, as school is part of any child's experience, thus they were not created experimentally for a study or even as part of her more traumatizing hospital experiences. A case study approach allows a rare opportunity to explore the complexities and depths of a child's view as a dying process unfolds. To understand an individual's experience as fully as possible, i t is necessary to take sufficient time to examine each available piece of evidence and to have that evidence as unbiased as possible. By using a longitudinal case study format, this research will investigate a variety of sources to enhance the understanding of Rachel's inner world. The research will focus on the in-depth interpretation of her drawings as the primary source of information. This detailed interpretation will be given by the researcher, based on training by Dr. John Allan and Dr. Gregg Furth. In addition, information from the medical charts recorded during periods of hospitalization will be used to re-examine both the clinical findings and the comments of hospital staff who contributed to the charts. A third source of information about Rachel's physical and mental status is a transcript of an interview with Rachel's mother. The interview, based on her personal journal 36 kept during her daughter's ill n e s s , provides quotations from Rachel herself, comments from other family members and doctors, anecdotes of Rachel's behavior, and insights about the changes in the disease. A second approach to the interpretation of the drawing content w i l l be to have experts examine the set of drawings. The task of these individuals w i l l be to classify each drawing into one of three categories according to their analysis of the drawing's content. The case study format thus allows for many sources of information to be integrated, and for many individuals to contribute their perspectives on the experience of this child as her short l i f e ended. Data Collection In this research, data from the child, the teacher, the family and the hospital are used for the in-depth picture analysis. The drawings and the accompanying text for each are supplemented by teacher notes. In this case, the researcher was a participant-observer, for her involvement at that time was as a teacher. This meant there was an opportunity to be directly involved on a regular basis and view the situation from the inside, yet there was no thought of doing any research at that time, so the observations noted were a serendipitous happening and not a planned part of this research. The parent interview was open-ended where specific dates and events were shared from the mother's journal, 37 and both parents* thoughts on the theories of children's death awareness were expressed. They were familiar with the concepts through reading an art i c l e the researcher had co-authored previously. Archival evidence from the hospital was also made available. Drawings Of the sixty drawings collected from Rachel, a l l but one were done in her home. Every school session was held in Rachel's bedroom. She became very possessive of this time and even asked her Mother to leave i f she stayed too long after escorting her teacher into the room. Because her room became her "schoolroom" for that year and a half, i t was a very comfortable setting for her, both for the easier drawings and for the harder math, writing and so forth. Only the very last picture was done in hospital. Much of her time was spent with her large, loving family whose faith formed a strong, although never intrusive, basis for li v i n g . Extended family, neighbourhood friends, and many of those who came in professional contact with Rachel also became an increasingly important part of her world. Following some d i f f i c u l t i e s with Rachel attending school i n the second grade, her family requested that a Home/Hospital teacher be provided for her schooling the next year. She had had home schooling b r i e f l y with another teacher the previous spring when i t 38 was not possible for her to go to school, but wanted to complete grade two with her friends. She completed a l l of the third grade and part of the fourth with the same Home/Hospital teacher who was then a part time student in the Counselling Psychology Department at the University of British Columbia. Creative Writing was a major i n i t i a t i v e in the school d i s t r i c t at that time so the Language Arts component of the program was easily accommodated at home. I n i t i a l l y , much of the work was based on showing Rachel a picture about which she then wrote a story. Later i t was changed so that she drew a picture and dictated the story to go along with i t . As her health deteriorated more and more, the picture was often drawn but with no story required. This came about mainly because of one particular experience with drawing. One day, Rachel was feeling very sick but no phone c a l l reached the teacher to cancel the session. When the teacher went into the bedroom, Rachel was asked i f she f e l t able to draw a picture since the teacher was there anyway. She agreed, drew i t , said the t i t l e was "Rachel not feeling well," but wrote, "Rachel not feeling bad". When the teacher asked for c l a r i f i c a t i o n , Rachel said she f e l t much better and wanted her regular school session. This incident was shared with Rachel's mother and i t was agreed that from then on, drawing alone was of value, and would continue as part of the school day whenever Rachel chose i t . 39 Although sixty drawings were received from Rachel, only twenty-eight will be considered in this study. These were a l l collected between February 1985 and January 1986. Rachel gave a l l sixty of these drawings to her teacher along with her permission to share them with anyone the teacher felt should see them. Before any of Rachel's material was shared, permission was also obtained from both of Rachel's parents. They fully support this sharing, and in fact believe i t adds some meaning to their daughter's death. There were other drawings which were done for special occasions for her family. For both Christmases while she received teaching at home, Rachel created a "book" for her family. These creative writing activities were printed on a computer, illustrated, and bound. They were very special to the family and the final page of the second book, which she titled "Rachel's Life", was a poem so powerful that the family framed i t and placed i t on the casket at her funeral. Rachel's creative works have touched many people in many ways. Most of the time when one of the pictures used in this research was drawn, Rachel was simply asked i f she could draw a picture. Usually she would go ahead and complete one; these were the directed drawings, or ones done on request but with no specific stimulus. Frequently, she would chat as she drew. If she was silent as she worked, so was the teacher. Following the drawing, AO the teacher would ask i f i t had a t i t l e or story and Rachel would dictate these. Sometimes the teacher simply asked i f Rachel could t e l l more about a particular part. The teacher made notes of the session on the back either during the discussion or immediately following the school session. A few times, Rachel had drawn a picture the night before, completely on her own; these are the spontaneous drawings. Although she apparently did a great many of these, most were given to members of her family. The researcher has seen many of these, but none are included in this study. The drawings made after a guided imagery activity were based on something specific seen in the imagination, and are not included in this research either, although some of the images are quite striking. Any time a drawing was done within the school context she had the same materials with which to work, the only exception being different quality and size of paper some of the time. The researcher currently has a l l sixty drawings, but w i l l offer them to the family following the conclusion of this work. Medical Records With the written approval of both the family and the attending primary physician, the researcher was able to review Rachel's medical records at Children's Hospital. For reasons of confidentiality, no electronic copying of those charts was permitted, however, small portions w i l l be presented in the data 41 analysis section. A doctor accompanying the researcher made notes of pertinent details so that following the in-depth analysis he w i l l be able to assist with an understanding of what Rachel's medical status was at the time of any given drawing or on the admissions near the date. Parent Journal Although the researcher had several contacts with the family following Rachel's death, no formal records were kept un t i l over two years later when this research was being planned. In June, 1988, Rachel's parents met with the researcher to discuss some specific events and dates. They agreed to a tape recording being made provided i t not be made public in i t s entirety. It has been transcribed for easy access for purposes of this research, but only the specific quotations in the data analysis section w i l l be generally available. The interview was based on the journal Rachel's mother kept from the time Rachel was diagnosed un t i l her death. It contains quotations from Rachel and from many others who knew her. It relates anecdotes which frequently include Rachel's behavior and affect. It also includes the sometimes painful, sometimes joyous story of a family's experience when a young child i s dying. 42 Data Analysis  Pictures The researcher will address the following questions during the interpretation of each picture: 1. What is the focal point of this picture, i.e. what draws one's attention? 2. What is odd in this picture? 3. Are there any barriers such as walls or fences? 4. What is missing? 5. What is central or in the middle? 6. Is there anything out of proportion? 7. Are there lines in the drawing, across the top or bottom or under any images? 8. Is there edging, i.e. is part of an object off the page? 9. Are there erasures? 10. Is there shading? 11. What colours are used, omitted, or out of place? 12. Is anything out of season? 13. Does the back of any drawing show extra pressure? 14. Do words appear in any drawings? 15. Are there any repeated objects? 16. What are the trajectories of objects, and what would the consequences be i f they moved? 17. Are there abstract images? 18. Are objects fil l e d in or empty outlines? 43 19. What images or symbols are there related to death, disease, future or view of self? 20. What feelings does this picture evoke in the viewer? Responses which are clear will be reported, but those which are not clearly indicated in the drawing will not be addressed in the research report; for example, question number three asks if there are any barriers, but if there are none in a specific drawing, then that question will not be mentioned in the analysis. Addressing only the pertinent questions will reduce the volume of this case study, and according to Yin (1989), a common complaint about case study research is the massive size of the report. For each drawing there will be an in-depth analysis followed by the researcher's classifications for it according to Bluebond-Langner's model and according to the spirituality concept of Kubler-Ross, here broken into categories labelled "decathexis" and "rebirth". Convergent Material Following the researcher's analysis for each picture, the convergent data from the medical records and from the parent journal will be presented either to substantiate or to refute aspects of the analysis. Classification by experts The second approach to drawing analysis will be to have experts in the use of drawings read each picture with its accompanying text and choose one of three categories for each 44 picture. Six experts, one from Switzerland, one from the United States, one from Alberta, and three from British Columbia, w i l l be interviewed and asked to look at each of the twenty-eight drawings. An expert was defined as someone who had a degree i n the helping professions, had been trained specifically i n the interpretation of drawings and had had a minimum of five years experience. They w i l l be asked to determine whether or not they would classify each drawing, based on i t s content, into one of three categories: Decathexis, Rebirth, or Not Applicable. The last category i s included to allow for placement of those pictures which have no other obvious placement. Each expert w i l l be seen individually and given the set of drawings and an Information Sheet (see Appendix 1) with background information, definitions and directions for using the Drawing Classification sheet (see Appendix 2). The results of the classifications w i l l be summarized and per cent of agreement about each picture w i l l be calculated. This w i l l be followed by a discussion about their findings. 45 CHAPTER 4 Data Analysis This chapter w i l l present the analysis of the data. F i r s t , for each drawing there w i l l be a description of i t s content and then i t s classification according to Bluebond-Langner's stage theory and according to the categories of Decathexis or Rebirth. In each case this w i l l be followed by a presentation of the pertinent information available from the medical records and from the parent journal and interview. For the f i r s t entry under each of these convergent sources, a brief synopsis of information prior to that date w i l l also be given. The second part of this chapter w i l l describe the results of the experts' classification of the drawings into one of three categories. Picture Analysis Each drawing w i l l be referred to f i r s t by i t s number based on the chronological sequence. This number w i l l be followed by the t i t l e i f Rachel gave the drawing a specific t i t l e . Reduced reproductions of a l l drawings appear in Appendix 3 l i s t e d by "Figure number" which are i n chronological order. In this Appendix the random number used in the experts' sort appears in parenthesis and the t i t l e , i f Rachel gave one, follows. For example, "Picture 1" from this chapter w i l l be appended as "Figure 1 (Random Number 13)". Appendix 4 provides the text to accompany each figure. 46 Drawing 1. The f i r s t picture (see Appendix 3, Figure 1) was drawn February 19, 1985. The focal point i s the g i r l . She is the central image and most of her stands under the cloud. A l l the images are outlined in a variety of coloured f e l t tip markers. The light brown outline of her face stands out, with the light yellow hair barely attached to top of her head. Both the eyes and legs are the same light blue and both the right eye and leg seem smaller. Her mouth is open in a rather lopsided smile. On either arm is a brown spider. There are four oddities in this drawing. The outlining of the cloud i n two colours, f i r s t blue, then yellow is unusual in children's drawings. The markings on the dress, described by Rachel as "lines from running", and the position of the legs are also odd. Finally, the size of the tree trunk compared to i t s foliage i s out of proportion. Since this was drawn in mid February, the green foliage on a deciduous tree is out of season. The story (see Appendix 4) which accompanies this drawing indicates that as the g i r l leaves the forest, often thought of as a symbol of the unconscious, she intuitively knows to look into the bush and tree approaching her. She believes the people hiding there are playing a "bad trick " on her, and then they put spiders on her. She runs home screaming. In spite of the bright colours and apparent smile which i n i t i a l l y suggest a cheerfulness, the text reinforces the drawing's 47 image of physical weakness and helplessness in the face of strong opponents who are seen as tricking or threatening. Because i t i s drawn out of season, there i s some significance to the tree. If the large tree trunk depended on the small amount of foliage for photosynthetic energy, i t would not be healthy. The odd, bent angle of her legs would suggest a d i f f i c u l t y in supporting her. The spider represents the Greater Weaver or Creator (Cooper, 1978, p. 156) who spins the thread of l i f e . The picture was i n i t i a l l y drawn without hands on the g i r l , suggesting a sense of powerlessness, and without the spiders; they were added after the story was dictated. The lines a l l over the clothing make the sweater-dress look as i f i t i s unravelling, suggesting her thread of l i f e i s coming undone. The i n i t i a l feeling of brightness does not quite mask the underlying fear and denial. Because this i s one of the few drawings with a text written i n the f i r s t person, the image of a g i r l under a cloud who has just had spiders put a l l over her e l i c i t s intense feelings of foreboding i n the viewer. This drawing can be classed i n the category of Decathexis where there i s a recognition of decreasing energy, as i f she intuitively knows there i s a grave threat to her health and wishes to deny i t . Although there i s a view of self as being seriously i l l , in isolation this picture cannot be specifically placed according to Bluebond-Langner*s stages for there are not enough indications of 48 Rachel's disease experience and knowledge nor of her future expectations. Medical Records Rachel had been transferred from her home town to Children's Hospital i n the spring of 1983. Her diagnosis at that time was Chronic Granulocytic Leukemia. Over the next two years she had been-treated for this and the information reported now begins near the date of these drawings. She was in hospital again in January of 1985. She had been experiencing night headaches, voraitting, and a urinary tract infection. Physical examination of the eyes revealed swelling of the optic nerve and small hemorrhages indicative of increased intracranial pressure, but other cranial nerves were reported as normal. Her blood tests showed a normal hemoglobin, a depressed white c e l l count and a decrease in platelets. A spinal puncture revealed 95% blast cells in the cerebrospinal f l u i d (CSF) which was markedly elevated, and indicated active disease. She received Methotrexate intrathecally (injected into the back) for the f i r s t time. Over the month she continued to receive out-patient treatments. Consideration was given to cranial radiation but i t was not used. Her mother i s quoted as saying "She was completely changed" for the better by the third chemotherapy treatment. Social worker comments quote Rachel's mother as indicating that Rachel knew she had a serious illness and that she would not get better, and also that she had 49 expressed a fear of leaving her parents and family should she die. Later, she received Vincristine and ARA-C also. By February 15, 1985, her bone marrow examination indicated she was in remission, although blood test results showed the marrow was chronically depressed. Parent Journal Beginning in the spring of 1984, Rachel had great difficulty sleeping, often staying awake until 2:00 or 3:00 a.m. yet s t i l l trying to attend school the next morning. She often had nightmares, frequently of spiders. The family consulted with the hospital psychologist and finally they chose to have someone sleep with her. The conversation which decided the issue confirmed her mother's belief, "... and she said i t so quickly, "I am afraid to go to sleep because Mommy," and at that point she began to cry, sobbing, and she said, "I am scared I am not going to wake up in the morning." As early as the f a l l of 1984, when she was seven, Rachel was speaking of dying. On September 21, 1984, in a conversation with her mother, Rachel said, "... When I feel sick I want to go to heaven. You know, like Calgon taking i t away [a current advertisement on television] ... When I die I ' l l see Grandpa." On November 15, 1984, with an older sister she said, "I can die you know." Her mother wrote that Rachel was, "... going to reverse the role of child and she was going to be the mother..." which happened 50 commonly with Rachel and many other children they saw in hospital whenever a parent or any adult seemed to have d i f f i c u l t y with what was happening. On December 3, 1984, with another sister she said, "... when I die I want to ask God a few things. I want to know i f I can be guardian angel, i f I can hug and hold l i t t l e kids' hands when they need i t . " The sister asked i f Rachel's guardian angel hugged her and she replied, "Oh yes, only i f I am alone can I feel him. If I ask him, please hold ray hand, I can feel his hand in mine and I can feel his hugs." On December 29, 1984, two weeks after her eight birthday, she had a long conversation with her mother, I wish I were in Heaven, then I wouldn't have leukemia. ... I could come back and not have i t . ... I am so worried because my friends have died and I think I might die and I don't want to leave ray family. ... Promise me that i f I die before you and Daddy that you and Daddy w i l l be buried beside me. In January 1985, Rachel had her f i r s t lumbar puncture and her mother has again recorded how wonderful the staff, especially two doctors and a few of the nurses were. "They found leukemia cells in her spinal f l u i d and for the next five weeks Rachel was in and out of hospital for treatment." Rachel experienced a lot of nausea and several headaches from the treatment and towards the end of i t , one of the children to whom she had become very attached died. 51 On February 15, 1985, Rachel and her mother were working on a jigsaw puzzle and Rachel asked, "Mommy, am I going to die? Did someone t e l l you I am going to die? Mommy, just answer me yes or no." Rachel was very insistent about an answer, not just that her disease was not curable, but a specific response. Her mother describes the family's very strong belief that i t i s important not to l i e , yet to s t i l l maintain the child's hope, a very d i f f i c u l t balance to achieve. Her mother gave examples of "things she had said months before she was even diagnosed" which indicated Rachel had some intuitive knowledge of her future and her mother had written, "That she [Rachel] was in contact with something far beyond what we even understood at that particular time." They believed very strongly to reply "Yes, you w i l l die," would "destroy the human s p i r i t within her" that was so necessary for coping with a l l the pain and procedures. They also believe that Rachel lived many months longer because of her strong w i l l and that a blatant "Yes" to this question would have precipitated an early death. Drawing 2. Created February 21, 1985, this picture's focal point i s the wolf. This central image i s outlined i n brown and partly f i l l e d i n with chaotic lines, heaviest on the top of his head. He has what appears to be blue saliva dripping beside a red tongue. He looks straight ahead, to the l e f t of the page and i f he kept walking he would pass right by the hiding children. The text 52 t e l l s us he is hungry, presumably he would consume them i f he could. His front and back legs are different sizes or are out of proportion, indicating mobility could be a problem. The oddity i s the series of faces, each inside a c i r c l e , on one of the four trees. The children are hiding from the wolf here, and a l l four circles extend beyond the actual tree trunks, almost severing them. Two faces look frightened and two do not appear as much so. There are nine trees, five without a child in danger and four with a child i n hiding from the wolf. A l l the trees are deciduous yet are i n f u l l foliage i n February. There i s a feeling of danger, fear and chaos in the drawing. The lines on the trees go around in spirals and circles. The lines on the wolf and grass are drawn as i f in haste, and go in a l l directions. The text indicates that the children were playing hide-and-go-seek in a forest and were frightened by the wolf. Then " i t " frightened the wolf also. They were playing and now hide from a real danger. Yet the wolf goes away and never returns according to the story. The threat of the wolf, traditionally seen as a dangerous predator in Western fairy tales and symbolism, goes away and never comes back again. They hide from the danger and i t goes away, yet four of the trees are almost severed by those circles. It could be that on one level there i s a hiding from or denial of the disease, yet on a deeper, s t i l l unconscious level, there i s already an 53 awareness that the disease w i l l be fat a l . By Bluebond-Langner's stages, i t would seem that Stage three, "always i l l but w i l l get better", could be an appropriate placement, but that on another level Decathexis or death awareness exists. Medical Records No new entry. Parent Journal Following her friend's death, Rachel seemed to have a period of prolonged anger lasting nearly three months which was focused primarily on her mother and seems to have been a time of great turmoil. ... her anger period . . . a l l of a sudden everything I did was wrong... and I think what triggered i t was the death of [her friend]... and now the anger i s coming out because at that point she says, "I didn't know I could die from leukemia," when she heard that [the friend] died...) and she was already going through, I think, phase 3 into 4 [of Bluebond-Langner's model] when that happened. She was going through such a mixture... Drawing 3. In this drawing of February 26, 1985, the focal point and oddity are both the face. It i s out of proportion and distorted. A l l the features are drawn i n the bottom half or third of the face. It i s drawn with a vertical orientation of the paper, and i s the only one in the series which does not use the whole 54 page. It i s colourless, and there i s an obvious expression of sadness. The upper part of the head is edged off the top of the page and the drawing is missing the body. Because Rachel began this school session saying that she had been sick the night before and describing body symptoms (see Appendix 4, Text for Figure 3) which are reflected in the drawing, there i s an obvious indication of her own deteriorating physical self. The edging on the upper part of the face could be part of that symptomatology or could reflect her wish not to think about what is happening. An encouraging part of the image i s that the original neck was less than half the width of the one shown; the erasure resulted in a neck which would have an improved a b i l i t y to support her head. When viewing this drawing there i s a profound sense of sadness, which extends to discouragement and hopelessness when the story about the g i r l i s read. She has many reasons for crying, caused by both physical and psychological pain. "She's always crying." There's an allusion to grieving an unlived adolescence, "The guys don't like her," next to broken childhood dreams, "her Mom promised to take her to Disneyland and she didn't." Rachel's tri p to Disneyland with her family had been a wonderful experience for her i n spite of the il l n e s s , and to think of this g i r l being promised the t r i p and then denied i t would be a severe deprivation in Rachel's mind. 55 The painful distortion of the face, the tears, and the bleak story suggest a growing awareness of a poor long term prognosis. These combined with saying "she's always crying," could support Bluebond-Langner's Stage 3 or A "Always i l l " but we are not sure of her view of her future, " w i l l " or " w i l l never get better". Certainly, there is sufficient material around illness and deterioration to suggest this drawing could be placed in a category of Decathexis. Medical Records On February 27, 1985, Rachel's hemoglobin was 10.3 grams, her white count was 3600, and her platelets were 60,000, a l l slightly improved. She had petechiae (small skin hemorrahages) under her chin, on her arms and on the back of her hands. She had a large bruise on her right elbow. Her doctor at that time reported that she was "well in herself." Parent Journal No specific entry. Drawing A. Drawn February 28, 1985, this picture's focal point i s the central figure of the Rainbow Bright Google. He is looking off to the l e f t , as were the wolf and the g i r l i n previous drawings. His right eye is smaller and his right leg is thinner or weaker than the other. His faci a l expression is not a smile, yet is not especially upset either. The Google's posture i s rather 56 indecisive or ambivalent. Although he i s looking to the l e f t , his body seems to be turning to the right judging from the placement of the arms and right leg. He i s under the cloud, similar to the g i r l i n the f i r s t drawing, only this time the cloud has three colours: yellow, blue and pink. The creature i s called Rainbow Bright Google, yet the cloud has the multicoloured rainbow image. The outline of the Google's body i s suggestive of f l u f f y clouds in children's drawings. The castle i s edged on the right side of the page so that no door or access is visible to the viewer, and i t appears to be floating. It has three levels, the third topped with a pyramid shape. There are three windows heavily framed with bright colours, the same as the cloud's three colours, and this i s the only part of the drawing i n which solid colour i s used rather than just outline. The viewer i n i t i a l l y feels the cheerfulness of the bright colours and the hopefulness of the rainbow images. However, this is somewhat dampened by the ambivalence and vulnerability of the Google, particularly after one reads of this one year old Google who i s uncertain about where his home i s . Trying to place this drawing according to Bluebond-Langner's model is d i f f i c u l t given the sequential nature of the model, but Stage 3 "Always i l l and w i l l get better" s t i l l seems appropriate. 57 The rainbow, a symbol of the connection between heaven and Earth (Herder Symbol Dictionary, 1978), i s implied in the tr i p l e colours of the cloud and castle windows. The name Rainbow Bright Google as well as his shape suggest a merging of his symbolism with the cloud/rainbow. Thus, i n spite of some uncertainty, the overall tone of this drawing i s one of optimism, and i n the joining of heaven and earth, one of Rebirth. Medical Records No new entry. Parent Journal The family had consulted the psychologist at the hospital about Rachel's anger. He indicated how common i t was for children to find swearing to be an effective outlet and agreed with them in supporting Rachel's request on March 3, 1985, for permission to swear, even using the "F" word, in the privacy of the bathroom at home. Drawing 5. This was created on March 6, 1985. The focal point of this drawing i s the camper, especially the bumper. It is the only brown part and i s darker than much of the rest of the picture. The i n i t i a l attempt at creating the camper was i n white o i l pastel, but once Rachel saw i t would not show clearly on this paper, she switched to light blue. The original was quite square with the cab placed just barely into the present cab's location. 58 She re-drew the camper larger, rectangular and with the added length of the new cab, making i t roomier. There i s a pink driver's window with a cross-piece in i t , and two purple van windows with curtains which could suggest a domesticity or a decreasing view i n and out. The blue door has a huge doorknob and the opening i s above the steps and landing, making access a b i t d i f f i c u l t . There is some confusion about the line at the top, whether i t i s the top of the van or blue and green mountains behind the van. There i s a blue line across the top for the f i r s t time, but although i t i s out-of-doors, there is no sun. The wheels are the oddity. They are made of a ci r c l e within a ci r c l e . There are four visible wheels, the middle two attached to the van. There i s a variation in the size, and they should cause the van to point down into the ground. The trajectory i s off to the right, but with the present wheel arrangement, i t w i l l be grounded before i t can go far. There i s a feeling of optimism about this picture. Although there i s a new phase of l i f e for the people in the story who have retired, and the f i r s t night i s a l i t t l e frightening because they are now where the wild l i f e lives, the deer and fawns help them feel so safe they stay here and live happily ever after. The images of travel, a new " l i f e " and the fawn, are a l l supportive of a Rebirth categorization. Because of the bright future, i t would 59 seen that Bluebond-Langner's Stage 3 "always i l l but w i l l get better" would be the best of her placements for this drawing. Medical Records A consultation from the attending physician on March 6, 1985, indicated Rachel "has done quite well although she experienced nausea and vomitting that morning". Further on, the concern of this caring doctor i s expressed, "I am s t i l l t erribly afraid of this g i r l relapsing." Parent Journal No new entry. Drawing 6. This drawing of a fierce g o r i l l a was made March 12, 1985. The focal point is the cage. The text indicates they are strong bars, yet most are not attached to anything. They are so widely spaced at times that the g o r i l l a could easily s l i p through. They form a barrier, but not an insurmountable one. The g o r i l l a presents some oddities. The face i s very unclear and the features are out of alignment with the mouth facing front but the eyes off to the l e f t . The position of the l e f t leg and arm suggest i t may be turning l e f t . The body is somewhat out of proportion, and the lower body and l e f t arm are coloured while the rest has much less colour to i t . The brightest colours are used on the f i l l e d - i n images of the f r u i t and carrot. One could wonder i f these might represent 60 medications fed to the disease, the fierce gorilla symbolizing a temporarily caged or controlled illness. If the gorilla were to look into the mirror in the cage, would i t see the swing, suggesting the ups and downs of remissions and relapses? The feelings evoked by this drawing include an unease about the gorilla and his ability to escape the barriers. His distorted face makes one confused and puzzled about what he cannot face clearly. There is also a strength or power about these colour images, yet the viewer is not certain whether the strength is with the disease or child. Although the fruit and carrot suggest vegetative rebirth images common in dreams of dying adults (Von Franz, 1984), the bars, the fierce gorilla and overall tone suggest this is a Decathexis drawing. One has to be cautious in labelling this according to Bluebond-Langner's stages because there is some suggestion the disease, i f symbolized by the gorilla, is under some control for now, but that appears rather tenuous and may change quickly. Perhaps this is Stage 4, "Always i l l and will never get better". Medical Records No new entry. Parent Journal New new entry. 61 Drawing 7. This picture was drawn March 14, 1985. The focal point i s the huge picture in the Art Gallery. The "punk" g i r l makes what looks like scribbles on the picture, although the text indicates "they look like scribbles, but they are really eyes." These are a series of yellow, orange, green and f i n a l l y purple vertical and horizontal ovals. When she returns one of these "eyes" winks. She thinks i t i s a trick, but the picture knows what she i s thinking and replies, "No one i s tricking you." When she asks, "Who said that?" the picture replies, "I did," and the g i r l wakes up. There i s both a trick and a dream in the text. The dominant image from the drawing i s eyes upon eyes upon eyes. One wonders about being watched and about what the g i r l i s seeing. These scribbles are not what they seem to be, they are eyes that know what she is thinking. They are framed in a dark purple, a colour associated with "control or a need to have others support and control. It may indicate that one has a cross to bear" (Bach, 1966). Given that the punk g i r l ' s face and hair are also purple, one must consider the importance of the colour. The g i r l i s oddly drawn. There are four sets of repeated eyes in the picture, yet one has d i f f i c u l t y seeing the facial features of the g i r l . She has disproportionately large black legs and huge feet but no arms or hands. She i s a very small figure under this large picture. 62 The feeling tone of this picture i s one of depression, anger, chaos, and turmoil. One wonders what i s going on, for things are not as they appear and may be a trick or a dream. There i s a foreboding and confusion about this drawing. Because there i s an uncertainty about the future, the g i r l simply "wakes up", placement in Bluebond-Langner's Stage 4 i s appropriate. The multiple colours hint at rebirth imagery, but the dominant images are the depression and helplessness of the g i r l i n the presence of the huge picture looming over her. Therefore, Decathexis i s the appropriate placement. Medical Records On March 18, 1985, Rachel's hemoglobin was 10.7, her white blood count was 7800, and her platelets were 190,000, a l l much better. She was started on a three-day course of ARA-C subcutaneous, and again the doctor's note stated that she was "well in herself". Parent Journal No new entry. Darwing 8. In this picture created March 27, 1985, the focal point i s the series of windows. There are six in total: one on the main floor which is boarded over in brown, two on the second floor, one with a cross in the middle but no ghost and one without the cross but with the ghost, and three on the third floor, the 63 central one boarded over and the two outside ones each containing both a ghost and a cross. Rachel said that these ghosts did not have eyes because ghosts can see without them. The oddity i s the decay of the house. Although i t i s drawn in March, the image is more typical of a child's Hallowe'en drawing. According to Rachel, there are "white, really bright blue, black and brown patches," yet the lower l e f t i s strangely empty or devoid of colour. The base of the house is very uneven and the door is well above this base. The door knob is disproportionately large. Another puzzle is that a brother ran away years ago and now this g i r l who is also running away meets him as she escapes, yet although there is a reunion there is no "happily ever after" or any other suggestion of future. The ghost in the house knew she was there and tricked her. She wakes up, screams and runs, her only escape being through the roof. The symbolism in this drawing is rather complex. There are three ghosts who seem to have intuitive vision; there are three crosses suggestive of the suffering of the crucifixion; there i s trickery and running away; and there is a decaying house or residence. These combine to give the viewer a feeling of fear and foreboding. The large black areas make one wonder about fear, repression, and prognosis. Even running away does not help, there i s no way to cover up or block this progressive deterioration and when the g i r l tries to avoid i t , the ghost or s p i r i t wakes her up 64 to the real situation. This drawing can be classed as Stage 4 and as Decathexis. Medical Records A test of the cerebrospinal f l u i d indicated that abnormal cells were present in large numbers. The blood work indicated a l l the counts were down which was not encouraging. Parent Journal On March 28, 1985, Rachel said, "Mommy, children are closer to God than adults." Rachel often spent time alone i n her room and then would come out and just state these rather profound thoughts, not giving anyone time to respond, She just gave me the most beautiful, gentle smile and turned and went back into her bedroom. ...She only gets i r r i t a b l e when she i s tired now ... after she had played hard, and play hard that child has done since she has had leukemia... she would put three hours into twenty minutes. On April 2, 1985, her mother wrote, "I just realized coming home from the hospital that she isn't going to get any better than she is now," and then goes on to describe the increased hospital v i s i t s and the procedures. Drawing 9. This drawing was made on April 10, 1985. The bridge across the top is the focal point. It consists of 65 twenty-four segments, although only nine or ten are actually completely drawn top to bottom. The bridge almost spans the page, stopping just short of the l e f t edge. This yellow-brown bridge drawn in outline separates the solid blue of the sky from that of the waterfall. The oddity in the drawing i s the four black rocks. They started much smaller, but as Rachel chatted while she drew, they were made larger and larger. Soraaticly, one wonders i f this could reflect cells i n the spinal f l u i d , as the bridge i s also suggestive of a spinal column and the waterfall of f l u i d . In spite of their size, however, they do not divert the flow of water with the exception of a very small area on the l e f t , although they would pose a danger to the man in the story. The text indicates that "a man goes down in a barrel". He awakens and wonders what happened, but then does in real l i f e what he did in his dream. He wakes up in hospital with a broken leg and "lives on". There is now a very clear representation of the future, and this way of phrasing i t is unusual in children's stories. Also unusual i s that the drawing has no representation of the main events of the text. The symbolism of the bridge could suggest a joining of two different places, except that the poorly attached l e f t side could collapse with any weight on i t . The waterfall could suggest a sudden, swift and powerful change of direction in the course of 66 l i f e , yet the flow of water, or l i f e , i s s t i l l strong. The dangerous rocks are there as potential obstacles, but have no effect on the water or the barrel. The barrier between sky and water is there but i s not very strong. These ambivalent images generate a feeling of uncertainty and confusion in the viewer. There is an unease about the precarious situation here. Again, there i s a dream and an awakening to reality, this time of an overtly described broken body. While the bright colours and the water image suggest some hopefulness, the intense black of the rocks, the questionable bridge, and certainly the content of the story create feelings which mirror the abrupt downward movement of the waterfall. This drawing can be categorized as Stage 4, always i l l and w i l l never get better, and as Decathexis. Medical Records On April 1, 1985, Rachel's lumbar puncture results showed many unusual c e l l s . Her peripheral blood results were a l l grossly abnormal. On April 9, 1985, they were worse s t i l l , hemoglobin was 8.8, white blood count was 2200 and platelets were 6800, and the spinal puncture indicated the abnormal cells had gone from 82% to 86%. On April 16, 1985, the doctor mentioned four courses of intrathecal Methotrexate, and that ARA-C and 6MP (mercapdopurine) would be started. Rachel made regular trips to the hospital as an out-patient for treatments. She had "prolonged marrow aplasia," 67 which means her marrow had been depressed for an extended time. She was unwell with a chronic disease which would alternate between remission and exacerbation. On May 10, 1985, she was admitted to Emergency with severe bone pain, especially in the right femur. She was pale and cooperative. By May 15, 1985, her blood work had improved, but was s t i l l grossly abnormal. A doctor's consultation written May 15, 1985, indicated she was experiencing bone pain in her arms and legs and also intermittently in her abdomen. Parent Journal At this time, Rachel got her f i r s t bike which "changed her whole attitude about the outside world because i t was her f i r s t bike... and she lived on her bike." Relatives from out of town visited over the holidays and Rachel again mentioned that children are closer to God. When asked how she knew, she said, "Because [they] haven't been here as long." Her mother wrote that "she would just state a thought or what she thought was a fact, and... that was the end of i t . She l e f t us sort of hanging there a l l the time." Now through this period of time Rachel was adjusting very well... She was actually feeling better. A l l this talk about dying, heaven and everything would stop even in the evening... I think this was the beginning of acceptance because she was getting more and more at peace. It was when she wasn't feeling good that she 68 was vulnerable and that was when i t would really come out. By April 25, 1985, Rachel was having frequent, severe headaches. On May 3, 1985, her mother wrote, "I know her count has dropped because she's pale and tired. ...can't help wondering i f the medication may not be working and the cells are again invading her spine." In early June, 1985, her mother wrote that Rachel had come stomping up the stairs, looking frustrated, upset and close to tears. When her mother asked her to explain, she replied, "Mommy, I know things, I can't explain why I know these things but no one taught me, not you or Daddy or my teacher. I just know things." As they talked, her mother realized that Rachel had "contact with a wisdom far greater than ours." One of the doctors had commented that Rachel was eight going on forty, for they had seen this maturity also. Drawing 10. Titled "The Rabbit Disguise", this drawing was created on June 3, 1985. The focal point i s the large rabbit. It appears to be turning to the l e f t , yet i t looks out of the page at the viewer. The tiny x's up the front are the zipper, for this i s a costume, "The Rabbit Disgoise [ s i c ] " . Although Rachel asked for the correct spelling of disguise, i t was printed this way. The rabbit was not grounded, almost as i f i t i s floating. 69 There are many things which make this a significant picture. F i r s t , i t has been drawn vertically, which is not the usual position for Rachel's pictures or for most children's. It i s the only one drawn in pen. It i s the f i r s t to have Rachel's printing on the front, to have a t i t l e , to have flocks of birds in the sky and to have the sun on the l e f t . There is considerable pressure showing on the back of the drawing; almost a l l the large rabbit and the small rabbit with feet, a l l three words in the t i t l e , the bottom-right bird and upper bird among the clouds are a l l created with noticeable pressure. The word "rabbit" i s central in the drawing, reinforcing the importance of the image. The usual symbol of rabbit is one of f e r t i l i t y and rebirth such as with the Easter Rabbit. Here, however, the large rabbit i s really a trick, i t i s a man in disguise. He has put on another appearance. As the big rabbit he frightens away the l i t t l e ones, reminiscent of the wolf earlier. This man, disguised as a rabbit and living i n the forest, finds the only carrot in the whole forest, even though they a l l have been seeking i t . We are told i n the text that, "He loved carrots - you have to remember that!" It i s interesting to note that this colourless carrot i s i n the same placement as the bright orange one in the gorilla's cage drawn previously. The viewer i s l e f t wondering what the carrot might symbolize. 70 A l l of the significant aspects of this drawing and text combined with Rachel's comment, "I used to draw good rabbits, but I don't now. I've changed," plus the fact that her best friend had just died of leukemia make the viewer realize that an important change has occurred. With a j o l t of reality, the viewer feels the sadness of loss, both for the friend and for this child. There i s bleakness, almost a despair which joins with a fear of what is happening. By putting on a new appearance, the man/rabbit gets his carrot. The l i t t l e rabbits are frightened. The sun has moved to the west and birds, often representative of the soul, transcendence and flight to Heaven (Cooper, 1978, p. 20) appear. Rachel would appear to have moved to Bluebond-Langner's Stage 5 "Dying". The symbolism suggests that this i s a Decathexis picture. Medical Records June 12, 1985, Rachel's hemoglobin was nearly normal although her white count and platelets were s t i l l slightly depressed. Parent Journal Rachel "has gone through being very frightened and is scared too... I saw the pain and the tears and the loss on her face when... [her friend died]. ...disease just does not attack the physical part of the child, i t also attacks the psychological and i t really plays 71 havoc with the children because i t unbalances them... and so the turmoil was just terrible for her." Drawing 11. Titled "The Flower Bed", this was drawn June 5, 1985. The focal point is the tulip on the right. It began with a shape similar to the two other flowers, but Rachel erased i t and re-drew this one. As she was drawing i t , she was talking about her friend's funeral. The back of the page shows a great deal of pressure for the whole tulip flower and i t s leaves. There is also considerable pressure on the back of the letter " f " in flower, on the sun's nose, on the "X" on the l e f t flower and on i t s stem, and on the l e f t leaf of the middle flower. The oddity is the l e f t flower. There is a large "X" in i t s center, the only time in the series this happens, and the line for the stem, i f extended, would join with the "1" at the end of Rachel's name. There are three flowers and three flocks of birds. They were f i r s t called "crows, robins and eagles", then Rachel changed her mind and called them "crows, hawks and eagles". The sun on the l e f t i s very large and there i s no colour in the drawing. Although the symbolism of birds, sunshine and flowers could be considered rebirth images in some circumstances, in this colourless drawing they are more indicative of Decathexis. The flower bed could also suggest flowers on a grave, a custom with which Rachel 72 was familiar. The huge sun could wilt these flowers, and the one on the l e f t has been X-ed out in i t s center. Two of Rachel's friends have died of leukemia, one a few months before and one a few days before. Perhaps the three flowers represent the three children, Rachel now recognizing what her prognosis i s . There are three flocks of birds in the sky but the i n i t i a l robins were erased. On viewing this, one experiences a sadness and a sense of bleakness, the reality of death as a grim prospect i s clear. According to Bluebond-Langner, this would indicate Rachel's awareness that she i s dying. It would be classified as a Decathexis picture. Medical Records No new entry. Parent Journal No new entry. Drawing 12. Created June 6, 1985, this was t i t l e d "The Sad Monster". The focal point i s the monster. He approaches from the l e f t and i s outlined in purple with f i l l e d - i n green legs. Rachel described him this way, "He's got lots of hair, one eye, and three legs. He's sad. He wants to be buddies." Although he i s a monster, he does not appear especially frightening. As Rachel drew 73 him, wrote the t i t l e and coloured in the legs, she was speaking about funerals and about remembering. The oddities are that only two limbs are coloured in solidly, and that three of the tiny people reply to "I want to be buddies" with a "Yes", but one says "No". There are three limbs on the monster with three digits on each one. If he continues i n the direction he i s going, the trajectory suggests he would trample the l i t t l e people. The green base began as " H i l l s in the distance" but were covered over with brown as Rachel spoke about funerals and friendships. There is a gentle sadness about this drawing, both from what we are told about the monster and also from the responses of the people. There i s a separation implied by three of the four being buddies with this monster. One wonders who is l e f t out now and what does the monster symbolize. Perhaps i t is death and the children are the three leukemic friends. Perhaps part of Rachel s t i l l denies her fate. The green/brown of the base being coloured as funerals and burial practices were discussed suggests i t could be grave symbolism. Although there i s an offer of friendship and colour has returned, especially the bright green of new growth, there is s t i l l the huge, overwhelming size of the monster compared to the people and the discussion of the drawing and real l i f e events to suggest 74 that this i s again a Stage 5 drawing. Although there i s some rebirth imagery, the dominant feeling i s one of Decathexis. Medical Records No new entry. Parent Journal No new entry. Drawing 13. This was created on June 10, 1985. The focal point i s the cart. It i s a complex image and the flowers quickly attract attention. There are four flowers in four separate pots. Three of the pots, outlined in blue, appear to bounce off the top of the cart and those three stems do not reach their pots when coloured with f e l t tip pens. Only one pot is secure with that flower's stem reaching into i t , and this pot i s shaded, not just outlined. This i s reminiscent of the four l i t t l e people i n the previous drawing, three are in one group and the fourth i s different. There are also three sets of three concentric circles on the cart. The two outer circles in each set are pink with pink dots or tiny circles between them and the center of each i s blue. There are three oddities in this drawing. First i s the flower on the right which has nine sharply pointed petals. There i s a great deal of pressure on the back of the drawing where the petals are. The center of this flower i s very darkly shaded, f i r s t with l i t t l e pencil squiggles then orange f e l t t i p pen covering them. It 75 is the only flower in the series like this. The t i r e i s the second unusual aspect of the drawing. It was erased and re-drawn, but the fl a t part i s s t i l l on the right not on the bottom. Because the man pulling the cart says, "Oh, no, a f l a t t i r e , " the viewer knows what i t should be lik e . Finally, the man is also odd. He appears to be standing up in the air and has no feet. He is very tiny compared to the cart i f he i s pulling i t . In fact, he may not be able to move i t with such a size difference, but i f he could, his grip i s poor, on one handle only. If he pulled from where he i s standing, the direction would tend to change. A l l this causes confusion about what the trajectory of the cart really i s . Symbols i n this drawing include flowers, but the survival of three i s in question. The flower cart has a f l a t t i r e , and the man's a b i l i t y to move i t or get a grip on i t i s in question. "Three concentric circles signify past, present and future" (Cooper, 1978, p. 36) and there are three sets of them in this drawing. Given the repetition of three in the recent drawings, i t is again possible to wonder about Rachel's association of her health with those of her two friends. The drawing generates frustration and some anger. There i s a sense of precarious balance, f u t i l i t y and helplessness. This i s a Stage 5, Dying, drawing and also one of Decathexis. 76 Medical Records On July 10, 1985, Rachel's hemoglobin was down slightly, her white count was up and now within normal limits, and her platelets were s t i l l slightly low. A consultation of July 12, 1985, indicated she was doing extremely well and f e l t physically well. On August 7, 1985, her blood work was abnormal again, the worst i t had been in three months. She was on a l l three of the chemotherapy drugs again. On August 8, 1985, a spinal tap showed 79% blast cells in the CSF. By September 5, 1985, this was up to 94%, where there should be zero to two per cent at most. Her liver function tests indicated i t was essentially normal. The report on September 9, 1985, indicated she had had "another recurrence". On September 13, 1985, the consultation indicated she had experienced ten or twelve headaches in the temple area which may have been side effects of the medication or caused by "arachnoiditis", that i s , an inflammation of the lining of the brain or spinal cord, t i t is interesting to note that "arachnida" is the Latin name for spider.] By September 17, 1985, the blast cells in the CSF were down to 5% and she was given a blood transfusion. It continued for an hour and a half, then was slowed and f i n a l l y discontinued because of a blood reaction: shivering, low temperature and fast pulse. On September 20, 1985, she had more blood work done, a spinal tap and was given medication. The results indicated she was improved. 77 Parent Journal On August 13, 1985, Rachel came out of her room with tears in her eyes and told her mother she had heard angels' harps. Her mother went back with her and could only hear wind chimes and a ghetto blaster outside. Rachel was very indignant, saying she could hear those too, but she had also heard the harps. As they talked, Rachel expressed her fear that they were coming for her, and again her mother was able to reassure her, t e l l i n g her the angels just wanted her to know she wasn't alone. Rachel replied, "Next time I hear them I w i l l stay and listen instead of running away." Again, in the summer as her mother was serving a plate of corn-on-the-cob, Rachel asked, "Mommy, i f I die what w i l l happen to my face?" A book her mother read later confirmed that this i s not an uncommon question. Another time she asked what would happen to her toys. This was new because in the past she had been feeling vulnerable when these topics came up but now she was feeling well. Her mother suggested she may want to write out what she wanted to happen to the toys and put that in her secret drawer after which, "she giggled and said, 'I sure don't want to be around i f someone went into my secret drawer'." Rachel "...did t e l l me her favourite teddy i s to be with her in her coffin." She also made certain her mother knew her favourite songs and her favourite flowers, pink roses. She was always very matter-of-fact when talking about these 78 and her mother said, "I believe she was tel l i n g me in her own round about way this i s what I want." Her mother also indicated that Rachel "... was already into the fourth and f i f t h stages [of Bluebond-Langner's stages] i n 1985, ...into the fourth when i t turned acute [in A p r i l ] . " On September 6, 1985, they were told the cancer cells were back and the treatments would have to start again. They were also advised to consider radiation treatment. On September 9, 1985, Rachel was having bad headaches and pain which responded to heat and Tylenol. On September 11, 1985, Rachel expressed her sadness for a l l the children suffering the procedures and treatments, "I feel so bad, Mommy, while I see them be sick because of their chemo." Rachel was very loving at this time and did not seem "as troubled or angry anymore". Drawing 14. This i s one of the f i r s t drawings after school resumed i n the f a l l , drawn September 23, 1985. The focal point i s the large butterfly. It i s huge compared to the trees and flowers. Judging from the intense pressure on the back of the antennae and fac i a l features, the sensory aspects of i t are emphasized. The i n i t i a l pencil outline of the body is also heavy. Although i t would seem to be the body, the size and solid black colour suggest a chrysalis also. The wings are only outlined and the pattern on the l e f t i s made of sixteen dots, six in orange and ten in purple, 79 with six in matched pairs. The right wing has thirteen dots, nine orange and four purple with one pair and one t r i p l e t . The face on this butterfly has either a big, toothy smile or a big smile with clenched teeth. The oddity i n this drawing is the tree trunks. They were coloured with a light yellow, then covered over with black. The usual selection of colours was available, so one wonders what this could symbolize. Because none of the trees appear rooted, and in fact the base tends to curl upward on them, there is an image of them l i f t i n g up. This suggestion of l i f t i n g upward or floating is true for a l l the trees, flowers and butterflies. The three deciduous trees are s t i l l green. Although this would suggest Rebirth, there i s a feeling of emptiness in the butterfly wings, and apprehension or unease with the tree trunks and black bodies. The tension on the back of the drawing combined with these suggests the rebirth imagery is not dominant just now, and that repression, fear or a wish not to face this separation is dominant, therefore, the overall impact and tone of this drawing is one of Decathexis. Because Bluebond-Langner's f i n a l stage i s dying, there w i l l be no further reference to her classification of the drawings. 80 Medical Records On September 26, 1985, Rachel's CSF blast cells were down to 2%, almost normal and her blood work was only slightly worse than the last report six days earlier. Parent Journal No new entry. Drawing 15. This abstract drawing "Time Machine" was made on October 3, 1985. The focal point i s the dark blue outer layer. Its inverted "u" shape i s suggestive of a road and the black marks, of the dividing lines of the lanes with intermittent yellow lines. If one took this image further, i t i s suggestive of the road of l i f e , i n this case almost coming f u l l c i r c l e off the bottom of the page. As one follows the multi-coloured layers, there is a suggestion of a rainbow. The whole image started out white, while Rachel was speaking of the Ice Tunnel at NBC studios where she had been with her family. As she described the sensations of being in the tunnel as i t rotated and spoke of her tri p to Disneyland and other locations, she added colours. When asked i f the completed drawing had a t i t l e she called i t "Time Machine" and then added that you can go forward or back, indicating the two red dots as controls. Then she said, "I've had a good l i f e . I don't want to see the future." Although that is a very powerful statement from a dying child, the feeling tone of 81 this image is joyous, and vibrant. There is sadness and denial or resistance i f one hears the words only, but with the image there i s a sense of Rebirth which is also i t s classification. The buttons suggest you can go forward or backward so that the one operating the machine has control. Bach (1966) indicates that white may signify l i f e ' s completion when a l l other colours are used. Here Rachel does the reverse, using quite a b i t of white but then colouring over i t with bright colours. Her usual bubbly affect at the time was only mildly subdued, even while describing her l i f e . It i s interesting to note the similarity of this drawing to two of the drawings analyzed in case studies by Bach (1966, p. xxi, xxv). In those, as in this drawing, the bright "rainbow" image is the entire picture, using the f u l l page. The inverted u-shape is pronounced and they are drawn at times where physical well-being i s in danger, but psychologically the promise of peace is recognized. Medical Records On October 5, 1985, she had another lumbar puncture and although results of this and the blood work on October 7, 1985, were not encouraging, they had delayed treatment as Rachel was to be a flower g i r l at her older sister's wedding. On October 9, 1985, Rachel took part in an Occupational Therapy art group. She painted three pictures with "bright colours and varied symbols and shapes i n combination." The f i r s t , "was a combination of flower shapes and drops of paint which she then smudged." The second was 82 a "portrait of her older sister who had accompanied her and who was painting as well, which she also smudged". The third "depicted a stormy day". Rachel agreed to leave them a l l at the Oncology Clinic for display. "She worked quickly and happily and appeared quite happy with her participation." Her mood was "light and positive in spite of the lumbar puncture following after which she quieted markedly". Her physical examination was essentially normal although i t noted that Rachel reported "shivering in the past while". She was restarted on chemotherapy. Parent Journal On October 7, 1985, her mother noted that Rachel was thin and not feeling well. They were concerned about her response to her older sister being married and leaving, but Rachel thoroughly enjoyed being flower g i r l and adjusted well. Later, her mother said of this time, "... sure she had accepted her death... she knew she was going to be going, but boy she was going to live as best she knew how right up un t i l the end...". That night Rachel was taken to Emergency yelling "... somebody help me!" and sobbing... because the bone pain in her legs were terrible. On October 17, 1985, a bone marrow and blood tests were done to see i f she was s t i l l in remission. The following morning they were told she had relapsed. In spite of the bad news, Rachel's mother continued to stress how gentle and supportive the doctors were. She also indicated that dates slipped by so quickly that she tended to 83 record only on a calendar from then on, and very l i t t l e i n the journal. About this time they became very aware of the increasing turmoil of the impending separation, ...as the months went by and she f i n a l l y accepted the inevitable, like immortality... and she came to be at peace with i t . . . she had a terrible, terrible time... I think that the hardest part for her was to f i n a l l y not only accept but to say goodbye... I think i t was one of the hardest struggles for her. She said, "I don't want to leave you and Daddy," and she would cry, she would just sob, terrible, terrible sobs. ...and that was the time that was very hard for her because she knew she had to separate from us." Drawing 16. Titled, "Beware of Ghost," this drawing i s from October 18, 1985. The focal points are the many aspects of the house. Written on the right base are the words "NO EXIT". Nearby are two doors, designed more as institutional doors than those of a house. There are three windows with crosses and broken glass. The fourth window, a soul window, is circular with a cross i n the middle and i s placed within one triangle of the roof. The house has a patchy appearance. The roof i s s p l i t i n the middle, divided into two distinct portions. 84 The oddity is the number of arrows. The picket fence along the bottom, broken and f a l l i n g over in places, reinforces the arrow image of the l e f t wing of the house. That oddity became evident when the drawing was traced for study. A dominant l e f t part of the house i s outlined i n orange so that from the base up to the roof i t forms an arrow pointing upward. It is suggestive of a booster rocket with a space capsule on i t . The triangular roof with the soul window shaded in pencil, would be the part to separate and continue upward. The text indicates that this l i t t l e portion of the house i s nice and clean and this i s where the ghost lives. It is the only homey, safe image in the drawing. The barrier would once have been the fence, but i t i s so broken now that i t could not protect the house. The house is the central image and the other features almost form a c i r c l e or protective u-shape around i t . The orange tree trunk i s out of proportion because the part near the bottom i s narrower than higher up. Most objects are outlined, but some are coloured in with pale orange or shaded with pencil. Because i t is well into October, this haunted house image i s not out of season, but the symbols are very bleak: a bird in the tree that wants to get away, a ghost in the bottom right that wants to eat the bird, a tree that is cold and has never had any leaves, a no exit sign, the dilapidated house, and the signs of a recent storm. It is so terrible that even the moon does not want to look at i t . 85 The feelings associated with this are helplessness, hopelessness, fear and danger. Things are broken and vulnerable. Yet in spite of a l l that, there i s also a small sense of protection and security from the "covering tree" on the l e f t and in the nice place where the ghost lives. The overall placement for this, however i s s t i l l Decathexis. Medical Records Blood work was done on October 15 and 17, 1985, and a bone marrow aspiration was performed on October 21, 1985. The conclusion was about that she was in relapse, i t was acute lymphoblastic leukemia (ALL). More blood work was done on the 24th and again on the 31st which indicated i t was almost normal, the chemotherapy was effective. October 31, 1985, she experienced more leg pain. By November 7, 1985, the CSF was clear and her blood work had improved. She was admitted to Emergency with vomitting and fever on November 7, 1985. By November 9, 1985, her hemoglobin was normal but her white count and platelets were low. Parent Journal No new entry. Drawing 17. "Monster" was drawn November 12, 1985. The focal point of this picture i s the monster. The dotted outline of the monster i s unique i n the series. The blue of the body is the same as the blue of the sky, causing one to wonder i f this i s a heavenly 86 creature. The arms are purple, but s t i l l in the dotted style. Does this unique style suggest a fading in and out of l i f e or perhaps an ambivalence? The eyes are a dark, solid purple and seem to be looking at the tiny person towards which the monster body i s leaning. This monster does not appear especially threatening, and is somewhat reminiscent of the Google drawn earlier. The shades of blue and purple were two of Rachel's favourite along with pink. The image appears to be rising or floating and is almost framed by green ground and evergreens. The oddity is the house. It appears to be below ground level at the base, either a f u l l or at least half a floor down. Two windows are very darkly coloured, green and orange. The whole house is outlined in orange, which Bach (1966) indicates may suggest a l i f e and death struggle. The roof is not aligned, the door is also out of alignment, and the doorknob is high. The chimney is the same bright pink as the monster's navel, rather than red as commonly used by children (Thompson & Allan, 1987). This causes one to ponder what similarity or symbolic connections they may represent. The tiny person i n the upper window i s calling "help". This may be directed to the monster asking for help or to anyone for help from the approaching monster. When asked i f she ever f e l t like that person, Rachel shared a great deal, but prefaced i t with a request not to t e l l her parents because she did not want them to worry any more than they were. It 87 seemed that just then she, like the l i t t l e person, needed help. If the crumbling house represented Rachel's physiological state, then she was not doing very well. If i t represents the family, then from Rachel's perspective, the edging off the right of the page and the lack of access could suggest her resistance to talking to them at this time. There is fear, ambivalence, wariness, yet also some hopefulness. There are two evergreen, each of them with nine branches. This may be symbolic of the nine years on her own tree of l i f e . These evergreens suggest optimism. The use of pink on the chimney and navel implies some hope for a future haven spi r i t u a l l y . The dual nature of the monster as friendly/dangerous and the green/orange (or healthy/dangerously i l l ) colour of the windows also suggest ambivalence. The dilapidated house, the c a l l for help, the sun on the l e f t and the smaller right window and right eye of the monster, however, a l l suggest Decathexis. There is both the physical f a i l i n g and the implication of leaving this l i f e for another. Medical Records Blood work done on November 14, 1985, indicated the best results she has had in some time. Parent Journal No new entry. 88 Drawing 18. Titled "The Baby Robin", this picture was drawn November 15, 1985. The focal point i s the robin. It i s outlined in the bright blue usually used for the sky and Rachel indicated she had seen i t outside her window that morning, which obviously makes i t out of season i n November. It has a tuft of golden yellow hair, bright blue eyes, and a prominent beak with two distinct nostrils. There i s the red-orange typical of "robin red-breast" and two pink shapes which appear to be wings. The bottom i s barely touching the nest, almost as i f the robin i s rising. There is white around the bird which Rachel identified as the broken egg shell. There are brown lines flowing from the robin outward and upward, suggestive of extended wings. These markings are the oddity, for that would make two sets of wings. It is possible that these brown lines are not wings or that the smaller pink lines do not represent wings. One wonders what these really are and what having two sets of wings might signify. Rachel used two shades of brown, two shades of yellow, two shades of blue and pink, red and white. She added the white shell last. The pink wings are somewhat f i l l e d in as is the red breast. The eyes and nostrils, sensory organs, are solidly f i l l e d in. The symbolism of the robin as death and resurrection (Cooper, 1978) and of the egg as resurrection and hope (Cooper, 1978; Herder Symbol Dictionary, 1986) reinforce the image of new l i f e implied by a baby bird and of this one rising up out of i t s nest. The 89 emotions e l i c i t e d by this drawing are joy and hope. The sense of being uplifted comes from this striking Rebirth imagery. Medical Records No new entry. Parent Journal No new entry. Drawing 19. "Apple Core" was drawn on November 17, 1985. The focal point is the face. The pupils are dark, looking down to the l e f t at the apple core, and again the right eye is smaller. The nose has distinct nostrils, as did the robin in the previous drawing. There are freckles on the person as well as the sun whereas Rachel usually drew them only on her suns. Both the person and the sun have toothy grins. Strong pressure shows up on the pupil of the l e f t eye, on the figure's teeth and on the smile of the sun. Two thirds or twelve of the eighteen sun's rays, those near the bottom, also have added pressure. The oddity is the missing body. There is a large head and two feet which are joined at the heels. Before she erased i t , Rachel began the line for shoes or a body much lower and larger. If this drawing i s overlapped with the baby robin (Figure 18), they would be of identical size before the erasing. Now the person's head i s about a quarter of an inch higher than the robin and the body is about two inches higher from the bottom. When overlapped, the 90 change from the erasure suggests this person is floating higher than the robin was. The word "Yum" appears on the drawing. The apple has been eaten and only the core i s l e f t . It has no seeds i n i t . The sun appears to be looking at the person and the person to be looking at the apple core. The person's shoes are laced up through four circles on one side and five on the other. One has the feeling of bleakness, of enduring or gritting one's teeth and bearing i t . Symbolically, the apple could be seen to represent the Tree of Knowledge and also the f a l l and death of humanity. There i s no colour in this drawing, there is no body on the person and only the discarded core of the apple. It has already been consumed. Although there is some rebirth imagery of the rising figure and the new knowledge or understanding represented by the consumed apple, the Decathexis images of deterioration and distancing are more dominant. Medical Records On November 15, 1985, she contacted gastroenteritis with a fever. Blood work and a spinal puncture on November 19, 1985, indicated she was doing quite well. A bone marrow on the 20th indicated she was back in the chronic phase of the disease, there were fewer than 5% blast cells which was greatly reduced although not in remission. A new drug, K-asparaginase, was instituted at this time. 91 Parent Journal No new entry. Drawing 20. Titled "Land and Sea", this picture was drawn November 22, 1985. The focal point i s the dark brown boat. The section of i t behind the Princess i s higher than the other end. According to story, the slave and princess are rowing to the blue castle in the upper l e f t to t e l l the king they are to be married. Then they w i l l go to the towns in the upper right for the ceremony and to l i v e , the latter being the town Rachel had lived in prior to being diagnosed. The princess can see the castle and i s prepared to face that part of her future t e l l i n g them she i s leaving, but perhaps the return "home" is not yet something she wishes to look at, hence a barrier in that direction. Both of them have eyes, but no mouths or noses. A l l eyes are the same colour as their figure's outline except that of the princess, her eye is very black. There are solid colours only on the boat and oar, slave's head, and the two towns in the upper right, a l l others are outlined. The oddity is the transparency of the living images, people and fis h . The towns of the wedding ceremony and residence in the upper right are golden yellow and in the placement of the sun in earlier drawings. The blue water is at the top of the page where blue sky has been i n the past. There are nine fish, a l l going to the right according to Rachel. Five of them are on the 92 other side of the boat, three are beside or i n the shadow of the boat and the last one on the l e f t looks as i f i t w i l l collide with the boat. Could this mirror her f i r s t five cancer-free years, three more fighting i t and the last or ninth year ending abruptly? There are many symbols in this drawing. The fish symbolism described above and the direction of the school of fis h , going the opposite way of the boat, suggest death images. Dreams of travel to the West, to the setting sun, and in a boat are a l l common death images according to von Franz, and "in my experience the image of the journey in dreams i s also the most frequently occurring symbol of impending death (von Franz, 1984, p. 64). The princess i s a helpless occupant of the boat as they go to t e l l the king she is leaving. Her dark eye is perhaps seeing that a l l the l i f e i s fading. Although there i s a strong sense of ending and separation when this drawing i s evaluated in detail, when i t is viewed as a whole the feelings evoked by this drawing are tranquility, serenity and harmony and so i t should be classed as Rebirth. Medical Records No new entry. Parent Journal No new entry. Drawing 21. "Bear in the Snow" was made December 4, 1985. The focal point i s the snowman, especially the arms. The l e f t arm 93 is not attached to the body or to the hand. The right hand with the broom does not have a grip on the broom. The whole picture i s done in pencil, outlined only except for the hat and triangular nose which are shaded. The snowman has three segments, the upper body erased to move i t to the right, and the head, to make i t larger. The oddity is the erasing of Fred "to get him lighter" which took most of the drawing time. Fred is in the central position, the broom acting as a barrier between him and the snowman. Both have the same vulnerable arms outstretched posture. Fred's right eye is very small and only his right foot i s touching the ground. He too is wearing a hat, but rather than shaded, the designs were erased repeatedly. Repeated objects are the six coals on the snowman, six steps to the house and six segments on the chimney. The snowman's arms, hat, faci a l features and coals a l l have extra pressure on the back, and so do the six steps, door, window, and six segments of the chimney. These create an impression of movement flowing upward on the right. The edging of the house causes one to wonder what could not be shown. There i s much smoke coming out the chimney which may reflect a great deal of emotion in the family at this time (Thompson & Allan, 1987). The cloudy day could also reflect overcast times. Both the snowman who w i l l melt and faint Fred bear 94 suggest a fading from l i f e , and the bear i s a symbol of resurrection (Cooper, 1978; Herder Symbol Dictionary, 1986). The story indicates that Fred bear lives in a warm, happy hut with his family, suggesting security and love. There i s a feeling of melancholy, repression and evasion about this drawing. The warm, happy hut w i l l be very hard to leave but the fading figures and cold day dominate the page, just as her disease dominates the cold rea l i t y of her future. This drawing i s also one of Decathexis. Medical Records No new entry. Parent Journal In February, 1985, Rachel had started complaining about being cold. She said to me, "I feel cold, Mommy," so I cuddled her more and she said, "I don't mean that kind of cold... I feel cold a l l over and inside. I am cold... It i s just a cold feeling and then i t leaves." Now my feeling about this i s . . . when she got that cold feeling she was trying to come to grips with dying. It continued, and by November, her mother believed the cause had changed slightly. There i s a separation. [Rachel] knows the separation. She could feel the separation. That i s the coldness she was talking about. ...You know how terrifying that 95 i s . She she knew i t . . . I believe this, ... that she was already feeling the pull of i t . . . the separation of the body. Drawing 22. Called "Rainbow of Light", this abstract was created December 11, 1985. The focal point i s the wide, yellow band of colour. Bach (1966) indicates this colour "may suggest an emphasis of things of a spiritual or intuitive nature". It i s the same colour as the hair used on drawings identified with herself and on the tuft of the baby robin previously. The pencil lines drawn f i r s t show through the colour, emphasizing the impression of flow. It is not clear whether the direction i s downward towards the center from the upper right or the reverse, upward. There are eight bands of b r i l l i a n t colour: from the right pink, purple, and blue, a l l colours Rachel liked, and on the l e f t of the central yellow band are two shades of blue and two shades of orange. The emotion evoked i s primarily joy, although the orange shades on the l e f t e l i c i t some mild unease. The rainbow i s seen as a bridge between heaven and earth, or as a hopeful, positive image with a pot of gold. Children often draw rainbows as part of a larger drawing, but i t i s uncommon as the only image. The symbolism of light includes the representation of God, s p i r i t , and immortality (Cooper, 1978; The Herder Symbol Dictionary, 1986). Images of light in various forms and of light-beings are common in 96 the dreams of the dying, usually as very powerful, positive images (von Franz, 1984). This drawing combines the two symbols with b r i l l i a n t colour to create a dramatic Rebirth image. Medical Records Rachel was admitted to hospital on December 12, 1985 for surgery. Her examination revealed her to be in good health although a slight bruise was noted on the right inside of her mouth. Her height was at the f i f t h percentile and her weight between t h i r t y - f i f t h and fortieth percentile for her age. An Ommaya reservoir was surgically implanted i n the right ventricle of her brain. The reservoir i s another way of administering chemotherapy. The surgery went well, there was no faci a l weakness and no abnormal reflexes were recorded. A nurse's note of December 14, 1985, indicated Rachel was feeling faint. Her blood work on December 16, 1985, was near normal. The summary report of the 17th included the following comment, "One year ago she developed acute blast c e l l transformation which responded well to the reintroduction of Prednisone" and the other drugs. "Six weeks ago she was again in relapse." The same three medications as administered previously were reinstated. She was in remission. Another part of the report indicated, "She had always had CNS disease. Physical examination showed no enlarged l i v e r , spleen and no enlarged optic discs." On January 3, 1986, the doctor 97 mentioned two new drugs and commented, "It is too early to t e l l i f she w i l l continue in remission." Parent Journal No new entry. Drawing 23. On January 8, 1986, Rachel drew "Fat and L i t t l e " . The eyes are the focal point. They are very detailed and large. There i s an unusual amount of pressure on the back of the right eyelashes. One wonders what the l i t t l e g i r l i s seeing as she looks straight ahead with her eyes wide open. The oddity is also a facia l feature, her smile. The teeth from most of the other smiles are missing. What has changed? The outline of the smile i s drawn with extra pressure. The proportion is badly unbalanced. The head is huge compared to the body. It takes up about three fourths of the page and, especially on the right, i s lopsided. The l i t t l e body cannot support the size and i t appears that as she leans to the right she w i l l topple over. The picture is outlined, with no colour. The upper body and right heel are also drawn with added pressure. Symbolically, the distorted body image of huge head and diminished body i s reminiscent of the crying g i r l i n Drawing 3. Here the body i s shown as fat and l i t t l e or powerless, but the g i r l is facing the situation, whereas that g i r l was looking down, depressed and her face was quite distorted. This one has very 98 clear features, and even a smile. This g i r l does have a body, but the image i s distorted and there i s a lot of tension around i t . A common side effect of the drug Prednisone i s an altered appearance or "moon face". This g i r l i s also missing any ground to stand on making this yet another floating image. The emotional response to this picture i s one of sadness. Although one can see her facing the future and see her smile and apparent brightness, one i s also aware of her distress over her changing body, her sense of helplessness and her physical deterioration. This i s a Decathexis picture. Medical Records No new entry. Parent Journal No new entry. Drawing 24. "The Ice Capades" was drawn January 9, 1986. The focal point i s the character who has "Snorks" on i t s costume. It is looking down at the three columns in the lower l e f t . They are similar to his antenna except those are unbent, and his antenna curves at the top. The character has very large eyes for the size of i t s body. It has a star on the waist or belt, von Franz (1984, p. 40) writes that the star " i s another hi s t o r i c a l l y familiar symbol for the resurrection body." This character i s the only one clearly on skates, yet with one foot going in either direction, 99 movement may be d i f f i c u l t . Because i t has a costume on, the identity i s unknown, another disguise. The story indicates the characters had to skate over "this great big hole i n the middle" yet this performer does not look frightened nor does the task seem especially dangerous. In fact the stance of this character suggests i t s trajectory i s off to the l e f t around the hole. The oddity is the lack of faces on the crowd. There are no extremeties on the six faces nearest the ice, only concave body/necks, and i t is unclear whether they are performers or audience. Of the three others who do appear to be performers, there is only a body, and again, no feet or hands. Another unusual feature i s the two holes with three projections in each. They are not identified, and Rachel's only response to a query was very vague, to the effect that they were just there. The page is vertical and everything is outlined in pencil. There is no colour and the only shading is on the boyfriend's shirt. The figure identified with Rachel is distant and small, with a very indistinct face and body. Another interesting feature i s the direction in which different characters are looking. The boyfriend appears to be looking off to the lower l e f t and so does the Snork. Five characters around the Snork appear to be watching i t , but three just off center appear to be watching the figure identified as Rachel. 100 The symbolism of being watched makes one wonder i f Rachel was very aware of being watched very closely, or i f there was a sense of being watched over in a protective way. Ice i s temporary and melts just as the snowman would. It is also cold. The hole in the ice i s a big dark spot right at the center, von Franz (1984) provides many examples of individuals who dream of black spots, some overhead, some as pits or holes which appear instead of the more common tunnel images in dreams of the dying. In viewing this drawing one feels some alarm at the posture of the audience as they a l l have their arms above their heads. One is uneasy about the lack of faces and of some bodies, and about the hole center stage. There is a confusion as to whether or not characters are happy or just maintaining a pretense. Certainly, the great distance Rachel drew herself from the center of activity suggest this i s a picture of separation or Decathexis. Medical Records No new entry. Parent Journal No new entry. Drawing 25. This picture of "The Secret Garden" was drawn January 10, 1986. The g i r l i s the focal point. Her posture attracts attention as i t i s an awkward way to stand and d i f f i c u l t to maintain. The l e f t arm i s barely attached to the body. The 101 whole drawing i s done in outline form, in pencil only. The g i r l ' s hair i s shaded, but Rachel did not f i l l i n a l l the area originally outlined for the common style she used in pictures associated with herself. This represents a change. The face has a lopsided smile. The l e f t eye appears to look off to the l e f t and the right eye looks ahead. The dress is united directly to the head, with no upper separation. There are two heart shaped buttons on the dress. The door i s odd because i t almost forms a frame around the g i r l , although not completely. It is already covered with more ivy than the wall around i t and the story indicates i t w i l l soon be very d i f f i c u l t to find at a l l . The door knob i s the other area that i s heavily shaded and that has a slight extra pressure on the back. The wall forms a barrier separating this secret garden from the other side. The wall extends a l l the way to the right although i t i s not as dark there and the ivy is not as thick. The two trees inside the garden reach from the ground up to the sky which appears overcast from above the g i r l a l l the way to the right edge. The sun on the l e f t side i s not hidden however. The three flowers and two deciduous trees in this garden are out of season in January. Although a garden suggests new growth, the story of the same name as this drawing, which Rachel was reading with her mother, was about a child facing many d i f f i c u l t i e s including her mother's death and moving to a new country to live 102 with an unknown uncle. The secret garden in her new home is a forbidden, secret place which has been kept sealed because a young woman f e l l from a tree and died here. This book i s very popular among c r i t i c a l l y i l l children. Now this g i r l in the drawing i s in her own "Secret Garden". Other images suggesting death are the sun on the l e f t , the wall as a barrier once the door i s hidden, the strange, vulnerable posture of the g i r l , and the two trees connecting the earth and sky. While the ivy and other garden images suggest rebirth, they are overshadowed by these other images, by the overhanging clouds and by the lack of colour in the drawing. One feels a chaos and bleakness in the garden; there i s a sense of pain, distortion, aloneness and separation. This i s showing Decathexis. Medical Records No new entry. Parent Journal Rachel had spoken to her mother over this time and had indicated that she could hear God, but could not see him and asked about God's appearance. Another day, she came running out of her room excited and told her mother she knew what Heaven looked li k e . Her mother stopped cooking and said, "You do?" she replied, "Oh yes, I have been there before. It i s beautiful, everything i s so colourful there, the green colours are so clear, the trees and grass. It i s because there i s no pollution. Everything i s so 103 clear and bright." Her mother continued, "I stood there stunned, then she gave me a beautiful smile and turned and went back into her room." These comments from Rachel continued to surprise the family. Drawing 26. Drawn January 13, 1986, this picture has no name or story. The central image of this b r i l l i a n t abstract i s the focal point. A light green, vaguely circular shape almost enclosed a series of bright, solid dots and small rectangular shapes. A l l the colours available are used, even white. Perhaps the two white dots represent two white c e l l s , powerfully outnumbered by others now. The green shape almost forms a container and is suggestive of a mandala or a gumball machine. The balance of tensions or the equilibrium of this drawing is quite striking. The central image is held by matched images a l l the way around. There are purple lines at the center top and bottom, orange u-shapes at the upper l e f t and right, and red sections i n the lower l e f t and right with an orange heart in each. Lime green segments in the upper l e f t and right each have a purple kidney shape with an orange dot in them. On either side there are lines in yellow, purple and green attaching them to the central image. On the central base are five lines radiating upward. The combination creates an image of balance, of equal tension either pulling outward or pushing inward, or perhaps both. 104 Symbolically, these could represent the last equilibrium before the final dissolution of Self begins. If these central colours are a l l aspects of the Self, perhaps the lines represent attachments to a l l things of this world. There is just the beginning of the breakup of the central image at the bottom of the green enclosure. Bach (1966, p. 64) writes, "As the children have depicted in their paintings, at the end of their life's journeys psyche and soma may come together again before separating finally at a sychronistic moment." Based primarily on her work with dreams of the dying, von Franz (1984) also writes of a final centering of the soul at the moment of death. If taken as a whole, this drawing projects a sense of balance, completeness and organization. The viewer experiences a sense of fullness or as Rachel would say, i t is "joyful", and obviously a picture of Rebirth. Medical Records No new entry. Parent Journal No new entry. Drawing 27. "My Squiggle" was drawn January 14, 1986, the last of the series drawn at home. There is no specific focal point as the brilliant colours take up the entire page. Again, a l l the colours, including white, are used. It began with a gently flowing or mildly twisting light yellow used in the Rainbow of Light. 105 Rachel added more and more colours in lines suggestive of the tight vibrations of an elastic band as it recoils from tension. There are a variety of geometric shapes in the center. There is a small, dark blue shape in the lower center, suggestive of a crumpled, discarded form. The bright orange shape in the left is suggestive of a Crucifix, von Franz (1984, p. 119) describes the symbolism of the cross in Christianity as "complete endurance of the conflict between violent emotions and their spiritual meaning". This drawing could be seen as a vibrant, chaotic and energetic representation of dissolution of the Self. It seems as if the central dots and the fine balance of the last drawing have snapped and now all is disorganization. Some lines suggest an upward flow but there is no clear pattern at all. This is a Decathexis drawing. Medical Records On January 15, 1986, Rachel was taken to the Emergency Department with a high fever (40.4 degrees Celcius), diarrhea and a stomach ache. By January 19, 1986, her temperature was down to 36.9 degrees. She was mobile although she was suffering from an oral lesion. Later, she was up and playing and a nurse noted she had a "very mature attitude toward her illness". Parent Journal "I knew on the night of the 14th [of January, 1986] that she was in serious trouble. I sensed things yet she kept up a bright, 106 cheerful [attitude]." She told family "I am not coming home. I am going to die soon." Drawing 28. "Zig Zag" was drawn in hospital on January 18, 1986. Rachel sat cross-legged on her bed and cheerfully created this f i n a l image. It contains broad, strong bands of colour: two greens, two blues, red, orange, and the yellow of the Rainbow of Light. Although not shaped like a rainbow, this drawing contains a l l the colours of one. White, brown and black are not used at a l l . The gently flowing lines overlap. The two green shades are in shapes suggestive of fish and the lighter green one is the most intense. This drawing evokes feelings of harmony, strength and peacefulness. It i s a powerful statement of the peace Rachel achieved. Medical Records On January 22, 1986, Rachel had petechiae on her cheeks, ears and chest. Over the next week she was mobile and socializing, i n spite of increasing bone pain and abdominal discomfort, bleeding from various small sites, frequent nausea, extension of the petechiae and a rash. In the early morning of January 30, 1986, Rachel experienced generalized seizures lasting ten to fifteen minutes which were then localized to the right side, "right sided tonic/clonic seizures", and right hemipelegia. She was transferred to the Intensive Care Unit. Despite prolonged efforts at resuscitation, she expired later that evening, January 30, 1986. 107 The medical chart recorded the fi n a l diagnosis as "Acute transformation of chronic granulocyctic leukemia, Clostridium septicemia, and convulsions of unknown origin". Parent Journal Rachel was nine years old when she died. Her funeral was February 4, 1986. She was interred at Valley View Memorial Gardens. Expert Analysis The experts worked on the drawings in a randomized order, not the chronological sequence described previously (see Appendix 5, Table 1, for corresponding random/chronological numbers). They were given the Information Sheet (see Appendix 1) which contained general background information and directions, but worked with each picture in isolation. They did not know the date of any drawing nor which came before or after another. They did have the story and/or t i t l e i f one had been given and the teacher notes (see Appendix 4). They approached the task i n different ways, some sorting the drawings into related stacks, then naming the category after, and some naming each picture's category as they viewed i t . Some spread a l l the pictures out in front of them and sorted from easier to more d i f f i c u l t to classify. One sorted solely by picture, then confirmed the classifications using the text, and found complete agreement with the original sort. Others used the text only to 108 c l a r i f y ambiguous drawing content, and some used the text routinely as a supplement to the drawing content. Of the twenty-eight drawings sorted by the experts (see Appendix 6, Table 2), there was agreement of 83 per cent or higher on eighteen of them. Seven drawings were unanimously placed: the crying g i r l , the art gallery and the Sad Monster were categorized as Decathexis, and the camper, the butterflies, The Baby Robin and The Rainbow of Light were classified as Rebirth. Two thirds of the experts agreed on the placements for twenty-four of the twenty-eight drawings. Generally, those drawings for which there was most disagreement were spread throughout the series, but there were four i n a row, numbers twenty-three (The Ice Capades) to twenty-six (My Squiggle), near the very end of the series which had l i t t l e agreement in placement. The experts a l l commented in some form on how challenging the task was. They noted especially that some pictures contained images of both Decathexis and Rebirth and, therefore, they had to determine which had ascendency. The following sixteen Random Numbers were voluntarily identified as containing dual images: 1, 3, 4, 8, 9, 10, 12, 13, 14, 17, 18, 19, 20, 21, 24, and 28. It is interesting to note that only numbers nine and twenty-eight were identified by two people and numbers ten and twenty were identified by three of the experts as containing images from both categories. A l l the others were only mentioned by one person as being 109 especially d i f f i c u l t to classify. The other d i f f i c u l t y was for the two experts who found some drawings were best classified as "Not Applicable". They considered each of these drawings especially carefully before choosing that category. One who considered Rachel's last drawing for quite a while before choosing "Not Applicable" commented that "She has obviously resolved something here." The comments of the experts as they worked provided insights as to how they i n i t i a l l y saw the image before reading the text. One expert commented on the similarity of the "Fat and L i t t l e " drawing and the untitled drawing of two butterflies with floating trees as very similar to those of other leukemic children with whom the expert had worked. Another noted the similarity of the f l a t t i r e to a camera, and another saw the g o r i l l a as a bear. Another read the t i t l e "My Squiggle" as "My Struggle", reflecting the tension i n the drawing. One saw the "Time Machine" as a rainbow cave and another saw i t as a tunnel. Two saw the untitled "gumball machine" image as a mandala. Two commented on the frequency of unusual eyes in the drawings and another on the frequency of animals and plants. One saw the hole i n the ice as indicating Rachel s t i l l had a future because she would jump over the hole, and two others saw i t as representing death. One expert mentioned that the light blue colour used so often signified a fading out l i f e in a healthy way. Most mentioned one or two images which impacted especially strongly on them and a l l commented on the touching beauty of the Baby Robin drawing. I l l CHAPTER 5 Summary, Conclusions, and Recommendations This chapter w i l l summarize the findings from the data analysis, describing patterns which emerged in the content analysis of the drawings by the researcher and in the classifications by the experts. It w i l l then discuss the issues raised by the doctor, by Rachel's family and by the experts. Next, the conclusions resulting from themes emerging in this research w i l l be described and implications for theory w i l l be discussed. To maintain consistency, these w i l l be written in the language used throughout, not changed into psychological terms. Finally, recommendations for future research based on the findings of this material w i l l be presented. Summary Fir s t , the findings which arose in the content analysis w i l l be discussed, based on the responses to the twenty questions used as a guide. Then the material which arose in the classifications w i l l be summarized. Comments and queries from others involved with this material w i l l then be presented. Picture Analysis. Every picture had a focal point which drew the researcher's attention f i r s t . It was interesting to note that as the experts were sorting the drawings and articulating some of 112 their thinking, i t became evident they were f i r s t attracted to different parts of one drawing. One expert, for example, noted the flower cart in Drawing 13 and was f i r s t drawn to the design of the flowers, but another expert who also noted the cart f i r s t , saw i t s f l a t t i r e and the resemblance to a camera. The most commonly edged features were the houses, usually off the right side of the page. In one case, the g i r l in the drawing was also edged off the top. Pressure on the back of the page was evident in several drawings, indicating where the main energy had been focused. A total of twenty pictures were in colour and eight were done in black and white, one of these being done in pen rather than pencil. Two of the eight colourless pictures were drawn as Rachel appeared to move into Stage 5 "Dying" and three more appeared in a row in January. These were her last drawings of concrete objects. There was no clear pattern in the use of specific colours, although a light yellow was often used for coloured hair. Light blue was the most common color used for some part of the central image, such as legs on the f i r s t g i r l , the outline of the camper, the baby robin's body and so forth, but there was no clearly prominent colour pattern used throughout this series. A trend noted by Furth (1973) was that leukemic children tended not to f i l l i n their drawings. Rachel also l e f t much of her drawing in outline form but nearly always f i l l e d i n some portions, such as the hair on the f i r s t g i r l , the window frame on the 113 Google's castle, and the gorilla's f r u i t . Many of her drawings also have sketchy lines f i l l i n g in more objects such as the sweater dress, the wolf, and the grass. Her abstract drawings generally have solid forms. Furth (1973) also noted that leukemic children tended not to draw suns and not to draw outdoor pictures. Rachel drew eighteen outdoor pictures, but only seven had suns. In his study, only healthy children drew suns with faces, but in this series two suns, in "The Flower Bed" and "Apple Core", do have faces. He noted that leukemic children tended to place suns i n the upper right quadrant. A l l of Rachel's suns prior to Drawing Number 10, "The Rabbit Disguise" do appear in the upper right but afterwards, they a l l appear i n the upper l e f t . Of the twenty-eight drawings in this set, twenty-three were of concrete objects, although two of these, the waterfall, and the art gallery could be viewed as par t i a l l y abstract un t i l the accompanying text was read. Five were clearly abstract: "Time Machine", "Rainbow of Light", and the last three in the series. A l l of these were drawn in the last four months of her l i f e . The text was very important for clarifying the future, with phrases such as, "lived happily ever after," or "he lived on," guiding the viewer into the appropriate frame of reference for that drawing. While the future seemed to be indicated primarily by the wording of the text accompanying the drawing i n i t i a l l y , in subsequent drawings, fading figures in some form provided these clues. After 114 Rachel reached Stage 5, the amount of text diminished greatly but the number of t i t l e s for drawings increased markedly. Distortions and deterioration of houses and human bodies reflected the effects of disease, the impending death, and view of self. Potential danger such as the wolf and images such as the fierce g o r i l l a indicated threats to her well being. The frequency of tricks and dreams in the f i r s t ten drawings and stories i s quite striking. Placement of the sun on the l e f t , representing the West, drawing rainbows and using traditional symbols such as travel and light, common in dreams of the dying, also appeared i n this series. The material from the parent journal indicated support for findings of the in-depth analysis of the drawings. Rachel's attitudes, concerns, and health as reflected in the drawn images corresponded to the material her mother had recorded. The dreams and fears of spiders, the sensation of being cold i n the f a l l , the anxiety about separation and being alone are a l l examples of concerns which were recorded in both formats. Even the approximate timing of placement i n Bluebond-Langner's Stages matched quite closely. Rachel's mother indicated that the family believed Rachel was moving from Stage 3 into 4 during her anger phase which started in February, 1985. The phrasing of their thinking about Rachel's illness even matched this model at one stage as shown by her mother's comment, "I just realized that she isn't going to get any better than she i s now," by April of 1985, when the drawings had 115 indicated in March that Rachel was in Stage 4, "Always i l l and w i l l never get better". The medical records, however, were much less supportive. There were cycles of remission and relapse which matched i n a general way, but specific dates sometimes preceded and sometimes followed the images suggesting changes for the better or worse. The long term indication of the right sided weakness, evident in drawings, did not appear in the medical records un t i l the day she died, and even then there was a right hemipelegia, not hemiparesis. Classifications. The process of classification was d i f f i c u l t . One major challenge in using Bluebond-Langner's model i s that she bases her stages on a sociocultural perspective, saying i t i s "possible to measure their awareness by examining their behavior" (Bluebond-Langner, 1978, p. 234) especially in the context of interactions with others. In the study presented here, the assumption of awareness and subsequent assignment to a specific stage were based primarily on reviewing drawing content and only then considering information about behavior. While some of the information available in this research matched closely with Bluebond-Langner*s observations such as Rachel saying, "I'm not coming home this time. I'm dying," just as the hospitalized children said, some of the other behaviors she observed, especially the preoccupation with time and the almost nonexistent reference to 116 any form of l i f e following biological death, were very unlike Rachel. In the classifications presented here, i t does seem possible to f i t the drawings to the model, but only when drawings were seen as a group and had other supplementary material available; because the difference between Stage 3 and Stage 4 i s based on how the future w i l l unfold, either " w i l l " or "w i l l never get better", the drawings alone could not distinguish these stages. Those drawings placed in Stage 5 "Dying," however, were much easier to identify because of the imagery alone. Also, the model's need to have a peer die of a similar disease after the child under consideration had reached Stage 4 conformed with Rachel's experience. Classification into the categories of Decathexis and Rebirth posed d i f f i c u l t i e s primarily because aspects of both appeared in many drawings. For example, the most d i f f i c u l t drawing for this researcher to classify was Drawing 14, the two butterflies and floating vegetation, because the logical analysis clearly suggested rebirth imagery, yet the emotional impact necessitated placement in Decathexis. Only after many days of indecision was the fi n a l placement resolved. The experts classifying these on the basis of Decathexis and Rebirth experienced a similar d i f f i c u l t y , two suggesting that a category for "Both" would be helpful. One expert had anticipated that many children's drawings would contain images which were not applicable to the two main categories, and which 117 would instead reflect more of the events currently happening in the child's everyday world. The two experts who did use the "Not Applicable" category indicated only that those drawings did not have clear classifications in the other two placements, but they were not questioned as to what information they did see in those drawings. Both the researcher's chronological sorting and the experts' random sorting tended to place more of Rachel's drawings after the midpoint in the series as rebirth (see Table 3). It i s obvious that this researcher chose the Decathexis category for more (twenty of the twenty eight) drawings than the experts did. Three of them chose this category for fifteen drawings. One expert chose i t only twelve times, another sixteen times and another for seventeen of the drawings. This can perhaps reflect personal material on the part of those classifying Rachel's drawings. This researcher taught her alone, daily for a year and a half of schooling. It i s quite possible that the researcher's selection of "Decathexis" for so many drawings i s a reflection of a continued sense of loss. The other confusion with the classification i s a questionable delineation of where "separation" ends and "rebirth" imagery begins. The symbolism of a journey to a new home is an example of where this confusion could exist. This subjectivity may have created differences i n how the experts made their divisions. 118 Table 3 Comparisons of Drawing Classification by Model of Awareness Drawing Decathexis/Rebirth 5 Stages Experts Percent Researcher 1 D 83 D ? 2 D 83 D 3 3 D 100 D 3 4 R 83 R 3 5 R 100 R 3 6 D 67 D 4 7 D 100 D 4 8 D/R 50/50 D 4 9 D 67 D 4 10 D 83 D 5 11 R 67 D 5 12 D 100 D 5 13 D 83 D 5 14 R 100 D 5 15 D 83 R 5 16 D 83 D 5 17 D 67 D 5 18 R 100 R 5 19 D 67 D 5 20 R 83 R 5 21 D 83 D 5 22 R 100 R 5 23 D/NA/R 33/33/33 D 5 24 D/NA/R 33/17/50 D 5 25 D/R 50/50 D 5 26 R 67 R 5 27 D 83 D 5 28 R 83 R 5 119 Comments and queries. The doctor assisting with the medical records raised two concerns. F i r s t , the most surprising aspect of the Bluebond-Langner model for this physician was that a l l children reach Stage 5 "Dying", and that they did so specifically by hearing of the death of another child. The mechanisms of how children i n rural areas or even the f i r s t on the ward to die i n some time could have heard about that other death was not something the researcher was able to find in the source material. Having listened to an audio recording of a lecture given by Bluebond-Langner on this model, the researcher i s aware of her great caution in responding to questions in areas she has not studied. Therefore, although her model is based on her personal observations of forty leukemic children in a metropolitan hospital, this specific question was not addressed. Perhaps the model should not be extended to a l l terminally i l l children as is currently occurring i n recent literature. Secondly, the doctor assisting with this study expressed surprise at the r i g i d sequential nature of her model. In addition to those concerns, the physician was disappointed to understand how frequently the children i n Bluebond-Langner's study had to resort to peers as a source of information, and indicated hopefulness that i t was primarily a function of that hospital and not as big a problem locally. The researcher described an experience she had had with Rachel. After reading Bluebond-Langner's book, the researcher asked Rachel about having a 120 secret place i n the hospital for sharing medical information, and Rachel did confirm that there was a similar network here. She also indicated, however, that her own experience with staff and parents was different. Procedures, treatment options and side effects were discussed with her. The fi n a l point raised by the doctor related to the physiological revelation i n the drawings, such as whether Rachel drew freckles which could represent petecheia. The use of patient drawings as indicators of physiological information had definitely not been a part of medical training, and was quite a novelty at this point. Rachel's parents believed the Bluebond-Langner model was appropriate for many of the children they came to know i n hospital. They also believed i t was applicable for Rachel, but that in her case i t did not f i t as well because she was expressing death awareness much earlier than this model would suggest was possible, particularly when she was feeling vulnerable. Rachel also did not seem restricted towards the end of her l i f e to the anger and withdrawal apparent in the children in Bluebond-Langer's research. In discussing this with Rachel's family, the researcher realized their consistent explanation was that Rachel seemed to be spir i t u a l l y advanced. Although they always allowed her to express whatever she wanted to, they were not especially religious i n a formal sense, and her frequent spiritual insight l e f t them with a feeling of awe and puzzlement. 121 The only point raised by the experts other than the duality of some drawings expressing both Decathexis and Rebirth was one question of whether the categories were being considered as conscious or unconscious awareness. That aspect of the models w i l l be addressed within the conclusion section of this chapter. Conclusion Several themes emerged throughout this series of Rachel's drawings. First was the repeated appearance of a series of numbers, often seen as significant in representing units of time in the child's l i f e (Bach, 1966). The repetition of nine could be seen as relating to Rachel's l i f e span because she died at age nine. There were nine trees in the second drawing, five plain ones and four with children hiding from the wolf, and there were nine fish in the drawing with the princess, five swimming ahead freely, and four further behind. These could be seen as representing Rachel's five disease free years and four more coping with the leukemia. Each of the trees in the dotted Monster drawing had nine branches, suggesting her tree of l i f e . The number three also might have been significant, for there were three ghosts and three crosses in the windows of the patchy house in Drawing 8. These may be related to repeated numbers in Drawings 10 to 13 made just after another friend died. In "The Rabbit Disguise", there were three rabbits; in Drawing 11 three 122 flowers and three flocks of birds were in the Flower bed; in Drawing 12 three l i t t l e people said "Yes" to the sad monster; and in Drawing 13 there were three sets of three concentric circles on the flower cart. The same three flowers from the flower bed appeared again i n the Secret Garden near the end of her l i f e . It is possible to wonder i f the repetition of threes represent the two deceased friends plus the recognition that Rachel too would die from leukemia. Another repetition over time was the two carrots in this series, one brightly coloured i n the gorilla's cage and the other one which the man/rabbit searched for and found in the Rabbit Disguise drawing. It was interesting to note that each carrot appeared i n the f i r s t drawing which had been assigned to a new Stage in Bluebond-Langner*s model. Although Bach (1975) frequently noted significant numbers in a child's drawing prior to knowing any history, caution must be used when f i t t i n g numbers to a case study, especially when much is already known about the history. The most frequent image i n the series was that of a g i r l . It appeared i n some form nine times throughout the series. In the f i r s t drawing she appeared to smile, but the story indicated she ran home screaming because of the spiders others had put on her. In the second drawing she and other children were hiding from the wolf. Rachel identified herself i n the f i r s t story and then used her i n i t i a l s i n the second one. In the third drawing only the face and neck of the g i r l appeared. The g i r l did not appear in the 123 picture i n Drawing 6, but the story indicated that she was looking at the g o r i l l a . There was a g i r l ' s image again i n Drawing 7 at the Art Gallery, and her face was badly distorted. In Drawing 8 the g i r l who had run away was written about but not drawn. There was no further reference to a g i r l u n t i l Drawing 20 where she appeared as a princess. There was a series, Drawings 23, 24 and 25 with a g i r l shown, each in some way identified with Rachel, either by appearance or by having done that activity. In a l l of these drawings the g i r l was in some way distorted or vulnerable to unpleasantness. In some of these, the g i r l ' s face was unclear or almost off the facia l area. The stories supported this theme of the g i r l being vulnerable, facing frightening situations or becoming distant. There were two more drawings with stick people, the Sad Monster and Monster, where the person's gender was uncertain, but where the size of the people was so different from the monster that they could also be very vulnerable. Monsters and predators in some form also appeared frequently throughout this series. The monsters were not clearly frightening characters however. The f i r s t was the Goggle, only a year old and rather benign looking. The Sad Monster was huge, but really just wanted to be buddies with the l i t t l e people, and the dotted Monster in Drawing 17, also huge, was not clearly dangerous either. The wolf, however, in Drawing 2 frightened the children. The g o r i l l a too was fierce. The multiple eyes at the Art Gallery and the ghost 124 hiding in the patchy house both frightened the g i r l s in those respective stories. The man i n the rabbit suit hunted the single carrot as did the other rabbits. The hawks and eagles in The Flower Bed were certainly predators. Even the t i t l e cautioned of the need to "Beware of Ghost" in Drawing 16, and the person in Apple Core had consumed the f r u i t . Another theme which indicated Rachel's apprehension is that of trickery, dreaming and hiding which occurred in the f i r s t ten drawings. The f i r s t trick was when other young people put spiders a l l over the g i r l i n Drawing 1. The very next drawing was of children hiding from the danger of the wolf. The eyes in Drawing 7 were tricking the g i r l and then she woke up. The ghost in Drawing 8 was also tricking that g i r l and she too woke up. The man in Drawing 9 also awoke, f i r s t from a dream and then in hospital, after going over Niagara Falls in a barrel. In Drawing 10 there was a disguise where the man hid who he really was. At this point Rachel's friend had just died and i t seemed as i f Rachel clearly knew she too would die. It was at this time that she started t e l l i n g her mother about her "favourites", music and flowers, which her mother believed was Rachel's way of helping to plan her own funeral. She also began asking what would happen to her toys when she died. There was also a shift to fading and floating images at this time i n the series. Although Drawing 3 of the crying g i r l ' s head 125 was only a partial figure, i t clearly reflected the physical experience which Rachel explained had happened the night before and which she drew intentionally. Beginning with Drawing 10, there were birds in the sky i n some drawings. The rabbits and carrot were not grounded, nor was the Flower cart i n Drawing 13. None of the figures i n Drawing 14 were grounded. The dotted monster in Drawing 18 appeared to be floating and i n the next drawing the baby robin was barely touching i t s nest. The person i n Apple Core appeared to be floating and the body was gone. Most of the images in Land and Sea were transparent and Fred bear was just barely v i s i b l e . His snowman would melt as would the ice at the Ice Capades. The g i r l ' s body i n Fat and L i t t l e was almost gone. It seemed as i f Rachel had f u l l y understood that she would die at the point where the tricks and dreams stopped and has moved on to this theme of images which more clearly suggest distancing from this world, fading away physically and floating free of earthly attachments. A brief but important theme was the sense of intuition which appeared early on i n the series. In the f i r s t drawing, the g i r l knew to look in the bushes for people, even though she did not know they were there. In the second drawing "they were scared [of the wolf] and ran away and i t scared him [the wolf] too". " I t " frightened the wolf away, but there was no indication of what " i t " was, only that something frightened him away. The young Goggle 126 "realized" he was outside and then "realized" that the castle was his home. The eyes of the Art Gallery knew what the g i r l was thinking. Finally, the ghosts in the patchy house could see without eyes. In the last two examples, the eyes seemed to represent intuitive vision, carrying on the theme of knowing purely through intuition. Throughout the series, however, eyes on figures were also important for indicating whether the figures were facing the situation directly, by looking straight out of the page, whether they were avoiding i t , by being distorted or looking away, or whether they were fixing attention on a certain character within the drawing. The eyes in many drawings were very large, almost cartoon like and even suns had this type of eyes. There were two aspects of homes that appeared as themes in Rachel's drawings; f i r s t was the poor physical condition and the edging of some, and second was the newness of others. The patchy house and the haunted house with no exit both had ghosts living i n them and both seemed abandoned and crumbling. The Goggle's castle, and the houses in Drawings 17 and 21 were both partly off the page, as i f something could not be seen or acknowledged. The other home theme was that of having or travelling to a new home. The Google realized the castle was his home, but at f i r s t was uncertain, and the retired couple travelled to where the wildlife lived and settled there happily ever after. The g o r i l l a had a home in a 127 cage, not in the wild. The patchy house was home to a ghost and a temporary residence for the g i r l who had run away. The man "travelled" over the f a l l s and as a result had a temporary place i n the hospital. The ghost had a nice, clean room in "Beware of Ghost". The princess was going home to the castle to t e l l the king she would be leaving for a new home, and Fred bear l e f t his warm hut to build his snowman. Finally, in the story of the Secret garden the child had to travel a great distance to a new home and in the Drawing of this name the door out of the garden would soon become very d i f f i c u l t to find. These could be seen as representing the deterioration of her physical being and the anticipation of leaving for a new place of existence. The last theme reflected by content was one of symbols representing optimism or hope. First was the rainbow image which was suggested in the clouds in Drawings 1 and 4. The rainbow was part of the name of Rainbow Bright Google. A rainbow was suggested in the use of colour in Time Machine. It was clearly evident in the Rainbow of Light, and more subtle in the flowing harmony of the very last drawing. The baby Google, the butterflies and certainly the Baby Robin were also strong symbols of the theme of rebirth and hope. Emotional themes i n the series began with fear. Those drawings with tricks and threats i n some form such as the danger from the wolf and the bad tri c k of spiders put on the g i r l include 128 an emotional response of fear. It was either stated as fright or screams i n the story as i t was in the f i r s t two drawings, or was suggested by dark colouring and size differences within the drawing as in the patchy house and the Art Gallery drawings. Sadness was reflected in a similar manner, either by a clear description in the story or t i t l e such as in the Sad Monster or by a lack of colour in the drawings such as with the Rabbit Disguise and the Bear i n the Snow. Extreme sadness and depression were suggested in drawings such as the third one with a g i r l who was always crying. Very l i t t l e clear anger was evident i n these drawings, even at the time Rachel was expressing anger i n her behavior with her family. One drawn example would be the punk g i r l at the Art Gallery, where her appearance and behavior suggest she may have been feeling angry, but i t quickly turned to fear. Although there was pressure on the back of the page in many drawings, i t would seem to have been caused from tension more clearly related to anxiety and the other emotions. An example would be the extreme pressure on the back of Rabbit Disguise which occurred when Rachel was speaking of her friend's death as she drew. There were some pictures, such as the g i r l i n the Art Gallery, where facial distortion appeared in conjunction with trickery or dreams. Other pictures suggested an emotional contradiction, such as the smiling g i r l i n Drawings 1 and 23 with stories or t i t l e s which could cause the viewer to anticipate distress. This was also true for the Flower Bed in 129 which the sun was smiling, yet the circumstances at the time were very sad. Perhaps these reflect Rachel's wish to appear cheerful, or her deeper ambivalence about leaving family yet at times feeling comfortable with her concepts of an a f t e r l i f e . There was a sense of tolerance or resolution i n many drawings throughout the series, often represented by a neutral facial expression. The Goggle realizing the castle was his home, Fred bear having completed his snowman, and the g i r l standing in the Secret Garden would a l l be examples of this resigned attitude. Many drawings suggested acceptance, happiness and even joy, either because of the smile on the main figure as in Apple Core and the implied smile as on the Baby Robin, or even because the image and story actually describe the happiness, as with the retired couple in Drawing 5. Some of the abstract images suggested this contentment simply by the colours and shapes used, as in Rachel's fi n a l drawing. Numerical references and images of a g i r l appeared throughout the series. The latter were usually distorted in some way. The two f u l l y drawn houses also appeared dilapidated and were haunted. These could be seen as representative of Rachel's physical condition, and perhaps of her reluctance at times to face the deterioration of her physical state. There was often an emotional response of fear associated with these. There was frequent reference to intuition i n the f i r s t drawings, and tricks and dreams 130 also appeared very frequently in the f i r s t ten drawings; perhaps these were suggestive of her i n i t i a l awareness and resistance to the rea l i t y of her disease and prognosis. Throughout the series predators appeared often, and monsters also appeared but were not clearly threatening. Once the tricks and dreams i n the series stopped, there was an increase i n fading or distant images and in those which were floating. These drawings often had emotional responses of acceptance and some times even happiness associated with them. New homes and travel occur throughout the series with a wide variety of emotional responses to the change, usually neutral or positive emotions. Hopeful symbols such as rainbows, light and babies also appear throughout. Implications for theory When considering the high agreement among the experts' classifications according to decathexis/rebirth, one can assume there i s some cl a r i t y for sorting the drawings according to the images. When comparing the experts' classifications to the researcher's findings (see Table 3) which was based on detailed analysis, one could accept this method of analysis also. Therefore, i t could seem that the drawings of this child indicate she experienced alternating views of herself as physically deteriorating and having to separate from this world with views of existence in some form beyond that of her dying body. The convergent material from the parents could also be seen to support 131 the stages defined by Bluebond-Langner provided the qualifications of using drawings in clusters and with texts are accepted. Based on Rachel's experience, as revealed i n her drawings, i t may be possible to explain a changing awareness of impending death from this child's perspective using both models. Prior to any of the drawings being made Rachel already appeared to have had an underlying, complex spiritual or intuitive awareness of death which she could articulate yet not really understand. This could correspond to the awareneness described by Kubler-Ross (1981), Bach (1966) and others. It appeared at f i r s t in statements made to family members. I n i t i a l l y , she would say, "I could die you know," yet months later, "I didn't know I could die from leukemia," or she would state a wish to go to Heaven so she could come back healthy. These examples both reflect typical childlike thinking of death, especially as being reversible. Over time, this awareness appears to have become a bit clearer to her and as i t did, she reflected more congruency between the spiritual understanding and her childlike awareness expressed verbally. Later, as she moved closer to making sense of her il l n e s s , she created drawings which appeared to reflecte that inner spiritual awareness, the Decathexis and Rebirth drawings, but only her stories could t e l l what she was thinking - that this was a l l a trick or a nasty dream and that someday she would get better. It would seem possible that the drawing reflected the inner awareness 132 and the story reflected where she was in her more verbal, wordly understanding. As Bluebond-Langner described the stages, the children believed one could be very sick but eventually recover f u l l y (Stage 3) but disease experience and knowledge, the elements which forced progression, would appear to have moved Rachel into Stage 4 i n March, 1985. She would appear to have remained there u n t i l the death of a friend i n June of that year forced her into a clear, thinking awareness and understanding. It would seem that once the spiritual part of her was reconciled with the cognitive child operating in the world, once she reached Bluebond-Langner's Stage 5 where both inner and outer knew and could articulate that she, too, would die, she could move forward into dealing with her leave-taking. She could begin giving directions to her Mother for her funeral; she could address the pain, the cold empty feeling, of leaving her family behind. This could account for the changes in her drawings and the text after June, 1985. This combination of models explaining both the spiritual and cognitive aspects of her awareness could also account for her family's confusion about why she did not match Bluebond-Langner's model exactly when she f i r s t began speaking about her own dying. If this spiritual knowledge precedes cognitive understanding, i t could also explain how some of the children described by Kubler-Ross and others seemed to know on their own, intuitively and without contact with other terminally i l l children that they 133 would die. Rubier-Ross noted that for some children this awareness was, i n her terms, "preconscious" or not clearly understood by the child. Bluebond-Langner's model, while accurately reflecting the behavior and statements of those children in hospital, was based on their outer world and intellectual process, and did not include the inner, spiritual concepts. These spiritual concepts would appear to be ahead of the child's existing, cognitive awareness which organizes and understands the world based logical experience and cognitive development. In this case study only once the two, the spiritual and the deliberate thinking aspects of the child, were in harmony did f u l l understanding truly reach her. Only then would i t appear that she also able to continue working towards a spiritual acceptance and the development of some comfort for what would happen afterwards. Her spiritual self seemed to prepare her, "not for a definite end but for a profound transformation and for a kind of continuation of the l i f e process which, however, is unimaginable to everyday consciousness" (von Franz, 1984, p. 156). These preparations were expressed in a child's language and within a religious context because these were available to her and were part of how she made sense of her world. Perhaps the increase i n the number of abstract drawings she made in the last four months reflects the d i f f i c u l t y that the spiritual part of her had i n explaining those complicated concepts. The 134 reality of one's own transformation and continuation beyond biological death is very d i f f i c u l t to grasp even for an adult, whether using either the language or traditional images of humanity. Rachel's experience as reflected in the drawings would seem to indicate that on a spiritual level she knew very early on what would happen to her. From the beginning the drawings reflect death/separation images interspersed with those of rebirth with the number of rebirth images increasing slightly towards her last months. Yet on another level she had to progress slowly with her understanding, resistance and tolerance. As death moved inexorably closer, however, i t would seem that she moved towards an integration of the two levels, working through many attempts to deny the outcome. These would seem to be reflected in the drawings from Stage 3 to Stage 5 made between February 1985, and June, 1985. Once she could no longer deny her prognosis at any level, i t seems she continued to work towards tolerating her pain riddled experience emotionally and physically. As this tolerance for the inevitable grew, she also gained spiritual insights to both her physical end and to what was beyond, but this was not expressed i n any clearly understandable form for those who remain to read her material. 135 Recommendations The purpose of this study was to describe the changes i n one child's view of herself as she was dying of leukemia. Because Rachel's experience appears to be unique i n that her drawings and other supportive material remain as a guide to her experience, the recommendations for two areas of future work w i l l be described. F i r s t , the traditional suggestions for future research w i l l be made. However, this research w i l l conclude with suggestions for those who are caregivers to terminally i l l children. Future Research. Because this material i s a single case study, i t i s not possible to generalize beyond theory (Yin, 1989). A similar, but more rigorous empirical study involving drawings from a larger number of children would permit extending the findings. Secondly, a similar study with children from different religious and cultural backgrounds would be very useful. Such a study would provide valuable insights about how children in other contexts make sense of their world, possibly without religious language and symbolism. A third study could begin with drawings obtained from the time of i n i t i a l diagnosis. This could provide insights to both those who recover and those who live for a long time with the disease. For many children the interference with normal developmental issues i s also a major trauma of living with leukemia, in addition to living with the constant threat of dying. Progress in modern medical technology has extended the recovery 136 rate and the l i f e span of many children, yet they too need understanding and support to cope with the changes in their lives. Finally a study to thoroughly investigate the representations of physiological information revealed in children's drawings would be a valuable and stimulating project. Suggestions to caregivers. Because i t appears that children do have an inner awareness of their prognosis, but that they may not understand i t in the context of their concrete world, adults working with them can help by making some experiences available to assist them. Obviously, these would be used with discretion, and must also consider the child's preferences. Many of those cited in the literature review use drawings as one vehicle allowing c r i t i c a l l y i l l children to express themselves (Bach, 1966; Kubler-Ross, 1983; Allan, 1988; Furth, 1988). This can be extended to any form of art (Furth, 1988) and to written expression also (Kubler-Ross, 1983). Group discussion (Dezendorf et a l . , 1978) can also be very helpul. The consistent element i s the on-going opportunity for self-expression. In Rachel's history there i s no clear indication which of these, i f any, was a strong factor in her a b i l i t y to cope, but she was a p r o l i f i c creator of two dimensional images, and she was encouraged to say whatever she needed to verbalize. She was also surrounded by love. One could certainly wonder what influence these had in her a b i l i t y to live so f u l l y in the time she had in 137 this world, to share so much of her love with others, and to leave such a powerful legacy. 138 References Allan, J. (1988). Inscapes of the child's world: Jungian counseling in the schools. Dallas, TX: Spring Publications, Inc. Allan, J. (1978). Serial drawing: A therapeutic approach with young children. Canadian Counsellor, 12, 223-228. Bach, S. (1966). Spontaneous paintings of severely i l l patients. Acta Psychosomatica, 8, 1-66. Bach, S. (1975). Spontaneous pictures of leukemic children as an expression of the total personality, mind, and body. Acta Paedopsychiatrica, 41, 86-104. Bach, S. (1977, March). Guidelines for reading and evaluating spontaneous pictures. International Study Group. Zurich, Switzerland. Bertoia, J., & Allan, J. (1988). Counseling seriously i l l children: Use of spontaneous drawings. Elementary School Guidance and Counseling, 22, 206-221. Bertoia, J., & Allan, J. (1988). School management of the bereaved child. Elementary School Guidance and Counseling, 23, 30-38. Betz, C.L., & Poster, E.C. (1984). Children's concepts of death: Implications for pediatric practice. Nursing Clinics of North America, 19, 341-349. Blubond-Langner, M. (1978). The private worlds of dying children. Princeton, NJ: Princeton University Press. 139 Cooper, J. (1978). An illustrated encyclopedia of traditional symbols. London: Thames and Hudson. Dezendorf, A., Estrada, K., Harrison, G., Johnsen, S., Kittleson, R., Martin, D., Meyers, J., Orr, J., Peugh, N., Stevens, M., &. Walker, T. (1978). There i s a rainbow behind every dark cloud. Tiburon, CA: Celestial Arts. Furth, G. (1973). Impromptu paintings by terminally i l l , hospitalized and healthy children: What can we learn from them? (Doctoral dissertation, Ohio State University, 1973). University Microfilms No. 73-3170. Furth, G. (1981). The use of drawings made at significant times in one's l i f e . In E. Kubler-Ross, Living with death and dying (pp. 63-94). New York: Macmillan Publishing Company. Furth, G. (1988). The Secret World of Drawings: Healing Through Art. Boston, MA: Sigo Press. Hammer, E. (1958). The c l i n i c a l application of projective drawings. Springfield, IL: Charles C. Thomas. Hammer, E. (1985). Introduction and perspective. In A. Wohl &. B. Kaufman, Silent Screams and Hidden Cries: An interpretation of artwork by children from violent homes (pp. x i i i - x v i i ) . New York: Bruner/Mazel Publishers. Herder symbol dictionary (1986) (B. Matthews, Trans.). Wilmette, IL: Chiron Publications. 140 Kiepenheuer, K. (1980). Spontaneous drawings of a leukemic child: An aid for a more comprehensive care of fatally i l l children and their families. Psychosomatische Medzin, 9, 21-32. Krippner, S. (1989). Mythological Aspects of Death and Dying. In A. Berger, P. Badhara, A.H. Kutscher, J. Berger, M. Perry, & J. Beloff (Eds.), Perspectives on death and dying: Cross cultural  and multidisciplinary views (pp. 3-13). Philadelphia, PA: The Charles Press, Inc. Kubler-Ross, E. (1969). On death and dying. New York: Macmillan. Kubler-Ross, E. (1979, May). A letter to a child - with cancer. (Available from Elizabeth Kubler-Ross Center, S. Route 616, Headwaters, Virginia 24442). Kubler-Ross, E. (1981). Living with death and dying. New York: Macmillan. Kubler-Ross, E. (1983). On children and death. New York: Macmillan. Matter, D.E., &. Matter, R.M. (1982). Developmental sequences in children's of death with implications for counselors. Elementary School Guidance and Counseling. JL7, 112-118. Rando, T. (1984). Grief, dying and death: C l i n i c a l interventions for caregivers. Champaign, IL: Research Press. Siegal, B. (1989). Peace, love and healing. New York: Harper &. Row. 141 Thompson, F., & Allan, J. (1987). Common symbols of children i n art counseling. Guidance and Counselling, 2, 24-32. Van Dongen-Melraan, J., &, Sanders-Woudstra, J. (1986). Psychosocial aspects of childhood cancer: A review of the literature. Journal of Child Psychology and Psychiatry, 27, 145-180. von Franz, M. (1986). On dreams and death. (E. Kennedy & V. Brooks, Trans.). Boston: Shabhala Publications, Inc. (Original work published 1984). Yin, R. (1989). Case study research: Design and methods. (Applied Social Research Methods Series Volume 5). Newbury Park, CA: Sage Publications. 142 APPENDIX 1 143 INFORMATION SHEET This research is investigating the experience of a terminally i l l child. Part of the research w i l l be based on how adults classify the drawings from one such child. It i s hoped that the research w i l l assist with an understanding of a dying child's experience. Your Task There are twenty-eight drawings in random order. You are asked to look at each of the drawings provided along with i t s accompanying printed material, and decide which of three categories defined below seems to you to be the most appropriate placement for i t . Thus, for picture "1" you could judge the category "decathexis", "not applicable" or "rebirth", as the most l i k e l y placement. Please place the picture's number under the category t i t l e you believe i s the best choice for i t . Definitions The following explanations are based on the assumption that, at some point, terminally i l l children are aware that they are dying. 144 Decathexis This refers to a diminishing investment of energy being directed into attachments. In the past the child has put considerable emotional energy into relationships and attachments to people, pets, favourtie toys, places, etc. With death approaching, everything must be l e f t behind and the child must gradually detach from them. Decathexis then w i l l have two aspects. One w i l l be the awareness of death reflected in various death images, and the other w i l l be separation or distancing from a l l attachments. The dying must separate from everyone and everything they love, from this world and even from their own bodies. There i s a decreasing interest in wordly events, a sense that these things do not matter as much anymore. There are images of physical separation and distancing such as travel or barriers. There i s also a need to recognize and deal with the deterioration of the body which w i l l lead to death and force the separations. As the disease continues and the body f a i l s and i s i n pain, the children gradually move towards an awareness of the dissolution of the "shell" they've inhabited and are so attached to. The task of decathexis then i s a d i f f i c u l t one of separating from a l l things of this world. Not Applicable If both "decathexis" and "rebirth" seem inappropriate for any picture, the middle category "not applicable" i s available. 145 Rebirth This refers to some form of transcending death, of being re-born into some new frame of existence. In this sense, the rebirth also applies to the development of some form of tolerance for the dying process and for what happens after this body dies. For many i t w i l l be a clearer spiritual awareness of whatever they believe happens following biological death. This may manifest as religious images, as a form of continuation in this world within the memories of others, or as a specific contribution such as a poem written for a loved one or tree planted with great care. It can also appear as some other personal belief system which provides comfort. The development of the rebirth awareness allows for some degree of mental well being; otherwise a l l the emotions surrounding the approaching death and total separation could be overwhelming. This transformation or rebirth can provide for a relatively peaceful transition into death, and at times the images are f i l l e d with joy. HISTORY The child who did these drawings had been diagnosed as having leukemia when she was six years old. She completed grades one and two i n school. Her home schooling began in September when she was seven, in grade three. The researcher was then a Home/Hospital teacher who worked with the child for a year and half. These drawings were done as part of her regular schooling, usually within 146 Language Arts. The drawings included here were done when she was eight and nine. She died of leukemia in January, a month and a half after her ninth birthday. In each of the drawing sessions represented here, the child was given no specific direction, only asked i f she would like to "draw a picture". She had a consistent choice of materials and content each time, although the quality of paper available varied from session to session. There was a choice of pen, pencil, f e l t pens, pencil crayons and pastels. Following each drawing she was asked i f the picture had a t i t l e and a story. These were recorded, as was the date. When there was no information given, specific comments were made to e l i c i t some detail, such as, "Can you t e l l me about this part?" The verbal information has been typed and is attached to the drawing. Her comments noted during the drawing are also included. Although she completed sixty drawings from February to the following January, only twenty-eight are included here, partly because of concern for the amount of time you would need to classify a l l of them and partly because the content of many was influenced by family or other adults. Conclusion This researcher i s aware that your challenge i s a formidable one. You may use your experience, intuition and training for i t . 147 This particular categorizing of pictures has not been done before so your work is unique, and i t is most appreciated. Thank you! 148 APPENDIX 2 149 DRAWING CATEGORIES DECATHEXIS NOT APPLICABLE REBIRTH 150 APPENDIX 3 151 154 155 156 o v e r (Random Number 22) The Flower Bed Figure 12. (Random Number 14) Sad Monster 159 Figure 17. (Random Number 6) Monster 162 Figure 27. (Random Number 11) My Squiggle Zi g Zag 165 APPENDIX 4 166 Text for Figure 1 I'm walking i n the forest and i t ' s the last part of the forest and I see this bush walking up to me and I know i t was Andrea tricking me. Then I saw Derek up i n the tree. Then I thought, "Andrea i s playing a bad trick and any minute she'll jump up." So then I went over to the bush and looked in and I saw Andrea. She said, "How did you know I was in here?" I said "I didn't." And then I saw Derek and he asked how I knew he was there and I said I didn't. Then they put spiders a l l over me and I screamed a l l the way home. Text for Figure 2 These l i t t l e kids were playing hide-and-go seek i n the forest and a l l of them hid in a tree because a hungry wolf was coming by. And they were scared and ran away and i t scared him too. And he never came back again. There's a hole and those are the holes i n the trees where the kids are hiding. Text for Figure 3 Well she's crying because she just f e l l on the gravel and she scratched a l l up on her knee. She's also crying because her mother told her not to go out. She's always crying. She's also crying because the guys don't like her and also she's crying because her Mora promised to take her to Disneyland and she didn't. 167 Comments: Rachel: I want to use pencil today. Teacher: She's really sad. Rachel: Yes. Teacher: Can you t e l l me about her sad feelings? Rachel: Dictated story above. [Forty-five minutes earlier she talked about the night before: "I had a really bad night last night. I couldn't walk. Mom had to carry me and my legs f e l t like they weren't there. I f e l t really dizzy. It was scary!"] Text for Figure 4 Once upon a time there was a Rainbow Bright Google. And he was wandering by the castle i n the t a l l grass. And i t was a beautiful day out like i t was a l l the time. And he realized he was outside, 'cause he was only one year old. And i t was a beautiful castle he was standing by. And he thought to himself "Is this my home?" And he went in and he realized i t was. Text for Figure 5 There was these people. They just retired and they f e l t like a l i t t l e break. So they went out i n the country where the wild l i f e lived. And at night they sort of got a l i t t l e scared, but not that scared because deer and fawns came up to their windows and the 168 animals started to love them. And so they decided to live there. And they lived happily ever after. Text for Figure 6 One day a girl named Melody went to the zoo. And she saw a gorilla. And these people were feeding him oranges, apples, carrots and bananas. And there was even a mirror and a swing there. And there were strong bars. He looked fierce. Text for Figure 7 There was an Art Gallery and this punky girl made a design on the picture. It looked like scribbles, but i t wasn't. It was eyes. It looked like scribbles, but i t was actually eyes. One day she came in to the gallery and one of the eyes winked at her. Then she thought, "Somebody's tricking me." Then the picture said, "Nobody's tricking you." She looked around. "Who said that?" Then the picture said, "I did." Then she woke up. Comments: Rachel: It's framed. Teacher: This purple line is the frame. Rachel: Yes. 169 Text for Figure 8 Once upon a time there was this girl named Suzanne. It was night time. Suzanne was walking. She had run away and she saw this house. It was a patchy house. It had white, really bright blue, and black and brown patches on i t . She thought, "I think it's empty. No one lives in i t . I think I'll live there for a while." She went in and saw this creaky stairway. She went up, creak, creeak, creeeak, creaak. And a ghost looked around the corner and said, "There's a trespasser in the house." But this was just a trick. But she didn't know that. So she went to sleep. The ghost came and scared her and she woke up and screamed. She saw a hole in the roof. She jumped as high as she could and just caught the edge of the hole and pushed herself up. And there she saw her lost brother. He had ran away years before. The End. Rachel: These ghosts don't need eyes [pointed to three ghosts in windows]. Ghosts can see without eyes. Text for Figure 9 Once there was a man. He went down in a barrel. And he woke up from his dream and he got in a barrel and did the same thing as in his dreams. 170 He broke a leg. He woke up in the hospital. He wondered what happened. And he lived on. Comments: She drew the rocks f i r s t , and later went over them again doubling their size. As she drew, she said i t was a waterfall. She spoke of travelling, of Niagara Falls and then Disneyland. She specified the Frog ride in Disneyland and how hot i t was in the "Hell" part of that ride. As she was talking, she coloured in a l l the blue part of the page. [Rachel had been speaking about a news story of a man who had gone over Niagara Falls in a barrel.] Text for Figure 10 The Rabbit Disguise Once there was a man and he loved carrots. And he was looking for work. And he spotted a store with a rabbit suit. So he bought the rabbit suit. And he loved carrots - you have to remember that! He lived in a cabin i n the forest. There was only one carrot in that whole forest that every rabbit was trying to get to. Now this rabbit suit was very large, bigger than a l l the other rabbits. And when he got to that carrot a l l these other rabbits 171 began coming. When they saw him they scadoodeled! And he ate the carrot. Comments: Rachel: I want to draw a picture. I used to draw really good rabbits, but I don't know. I've changed. I want to use pen only. [As she drew she talked about her best friend, who had just died on Saturday. "She loved me best."] Text for Figure 11 The Flower Bed Rachel: I want to do i t in pencil. There was much erasing of the flower on the right, as her friend's funeral was discussed. She said a l l the flowers were different, and identified the one on the right as a tulip when i t was finished. She volunteered that the birds were [as she pointed l e f t to right] "crows", "robins", and "eagles", then changed her mind and identified the middle ones as "hawks", not "robins" [crows, hawks, eagles]. 172 Text for Figure 12 The Sad Monster Teacher: Does i t have a t i t l e ? Rachel: The Sad Monster. He's sad because he wants buddies, he's saying, "I want to be buddies." These ones say, "yes" but this one says, "no". Comments: Rachel spoke of her best friend's funeral which was being held that day and said, "Who wants to see a coffin." As she was drawing, she spoke of her friendship with the teacher and wanted to discuss the reason why we have funerals. Text for Figure 13 A Chinese man is pulling a flower cart and he gets a f l a t t i r e . He says, "Oh No a Flat t i r e . " Text for Figure 14 No story or t i t l e . Text for Figure 15 Time Machine Teacher: Does i t have a t i t l e ? Rachel: The Time Machine. Teacher: Can you t e l l me about the time machine. Rachel: You can go forward or backwards. [Pointed to the red spots] These two red buttons are the controls. I've had a good l i f e . I don't want to see the future. 173 Text for Figure 16 Beware of Ghost! Teacher: Can you t e l l me about the picture. Rachel: The bird i s looking at the house, "I want to get outa here." The tree [without leaves], "I'm cold." It never had any leaves. Ghost [lower right], "I'm going to get that bird and eat him." Fence, "I hurt" 'cause i t ' s a l l broken. House has boards over the holes. It has broken windows. "I'm scary." The attic window's not broken. That's where the ghost lives. It's nice and clean there in that room. Tree, [leaning on house]. It's a covering tree. Mud puddles are there because there's just been a big, bad storm with thunder and lightning. Moon, "What a scary place! I don't even like to look at i t . " Text for Figure 17 Monster Teacher: Do you ever feel like that l i t t l e person calling for help? Rachel: Promise you won't t e l l Mom and Dad, I don't want to worry them. 174 We spoke at length about her concern for the family's d i f f i c u l t time with her being sick and about spiritual matters. She initiated a variety of topics. Text for Figure 18 The Baby Robin Rachel said she had seen this robin outside her window that morning. Text for Figure 19 Apple Core No story. Text for Figure 20 The Land and Sea The princess i s being carried back to the king's castle [upper left] so she can TELL him she's going to marry the slave. Then they're going back to Castlegar to get married and go to Nelson to li v e . She can t e l l him because she's twenty. Text for Figure 21 Bear i n the Snow Fred bear lives with his Mora and Dad i n a warm, happy hut. He came out on a cloudy day to build a snowman. Comments: Rachel spent much of her time erasing the bear. "I can't get him light enough," was her comment. 175 The Rainbow of Light Fat and L i t t l e Text for Figure 22 No story. Text for Figure 23 No story. Text for Figure 24 The Ice Capades Teacher: Can you t e l l me about this picture. Rachel: Well, that's me and my sister's boyfriend [upper center]. He took me to the Ice Capades. They had on these costumes and they had to jump over this great big hole in the middle of the ice. Text for Figure 25 The Secret Garden Me and ray Mora are reading this book. Teacher: Can you t e l l me about the secret garden. Rachel: Well, right now you can see the door and the door knob, but after a while the green stuff [asked for name of stuff that grows up walls - ivy] yeah, the ivy w i l l cover the whole wall and then i t w i l l be really hard to find the door. Text for Figure 26 No story or t i t l e . Text for Figure 27 No story. Text for Figure 28 No story. My Squiggle Zig Zag 177 APPENDIX 5 178 Table 1 Chronological Order Matched to Random Order Drawing Number Random Number Drawing Number Random Number 1 13 15 9 2 20 16 25 3 2 17 6 4 10 18 16 5 . 8 19 26 6 7 20 5 7 20 21 4 8 15 22 12 9 3 23 21 10 1 24 23 11 22 25 24 12 14 26 19 13 14 27 17 27 28 11 18 179 APPENDIX 6 180 Table 2 Expert Classification of Random Drawings According to  Decathexis (D), Not Applicable (NA) and Rebirth (R) Drawing Expert 1 2 3 4 5 6 % D % NA % R 1 D D R D D D 83 17 2 D D D D D D 100 -3 D D R D R D 67 - 33 4 D D D D D R 83 - 17 5 R D R R R R 17 — 83 6 R D D D D R 67 - 33 7 R D NA D D D 67 17 17 8 R R R R R R - 100 9 D D D R D D 83 17 10 R R R D R R 17 - 83 11 D D D D D R 83 - 17 12 R R R R R R - 100 13 D D NA D D D 83 17 14 D D D D D D 100 -15 R D D D R R 50 - 50 16 R R R R R R - 100 17 R R R R R R _ 100 18 R R NA R R R 17 83 19 D R D R R R 33 - 67 20 D D D D D D 100 -21 D NA NA R D R 33 33 33 22 R R D R R D 33 - 67 23 R NA D R D R 33 17 50 24 D R D D R R 50 - 50 25 D D D D R D 83 _ 17 26 D D D R D R 67 - 33 27 D D D R D D 83 - 17 28 R D D D D D 83 - 17 Table 2 shows each expert's classification of every drawing. The summary shows the per cent of experts who placed the drawing in each category. 


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