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The meaning of the breast cancer/mastectomy experience Campbell, Sheila Harriet 1984

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THE MEANING OF THE BREAST CANCER/MASTECTOMY EXPERIENCE By SHEILA HARRIET CAMPBELL B.A., Dalhousie Un i v e r s i t y , 1958 M.A., Dalhousie University, 1962 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 this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August, 1984 ®Sheila H a r % e t Campbell, 1984 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Counselling Psychology The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date August 31, 1984 1-6 (3/81) ABSTRACT The purpose of this existential-phenomenological study was to understand the meaning of the breast cancer/mastectomy experience. The meaning described i n this study was the structure or common pattern underlying the unique experiences of six women who had had mastectomies for breast cancer at le a s t two years e a r l i e r . These women were my co-researchers. The assumptions of many d i f f e r e n t approaches to breast cancer and mastectomy i n the l i t e r a t u r e were explicated and their l i m i t a t i o n s indicated. No previous exploration of the meaning of this experience was found. My own assumptions about meaning were drawn out of my own experience of breast cancer and mastectomy. The interview questions were based on these assumptions. There were two interviews with each co-researcher. In the f i r s t set of interviews each woman gave a detaile d account of her experience, which was tape-recorded. In the second set of interviews my co-researchers validated the results of the analysis. The analysis of the transcripts of the taped interviews was done according to the method used by C o l a i z z i (1978) i n E x i s t e n t i a l - Phenomenological Alternatives for Psychology, edited by V a l l e and King (1978). Forty-one themes were formulated and described; these themes were aspects of the breast cancer/mastectomy experience common to a l l of the women i n the study. On the basis of the themes, an exhaustive i i i d e s c r i p t i o n of this experience was written, as well as a condensed desc r i p t i o n of the e s s e n t i a l core of the experience. The r e s u l t s show a clear pattern of s p i r i t u a l growth through su f f e r i n g , a pattern remarkable i n i t s d e t a i l and symmetry. Healing involved a profound change i n the person through the discovery of the meaning of her l i f e as an i n d i v i d u a l and a human being. My des c r i p t i o n gives a more complete understanding of the breast cancer/mastectomy experience than any previous approach. I t lays a foundation for further research of a s i m i l a r kind. I t also provides a perspective and an orientation for counsellors of mastectomy patients. i v TABLE OF CONTENTS Page ABSTRACT i i TABLE OF CONTENTS i v LIST OF TABLES v i i i ACKNOWLEDGEMENTS ix DEDICATION x CHAPTER I. INTRODUCTION 1 Purpose of the Study 1 Overview 1 Significance of the Study . 2 CHAPTER II. REVIEW OF THE LITERATURE 7 Approaches to Breast Cancer and Mastectomy 8 Medical Views 8 Assumptions 12 Re h a b i l i t a t i o n View 13 Assumptions 14 Ps y c h i a t r i c Approach 15 Assumptions 18 The View of Reach to Recovery 20 Assumptions 24 Psychoanalytic View 25 Assumptions 28 The Standard of Adjustment 30 Assumptions 31 Psychosocial Approach 33 Assumptions 36 Cult u r a l Anthropological Approach Assumptions 38 40 V Page Mastectomy as a Turning Point 41 ; Assumptions 42 Mastectomy as Despair 43 Assumptions 45 Cognitive Approach 46 Assumptions 48 Mastectomy as a C r i s i s to Grow On 49 Assumptions 50 Stages and Styles i n the Cancer Experience 51 Assumptions 54 Summary of Assumptions of Stage Theories 66 Summary and Critique of Assumptions on Breast Cancer and Mastectomy 67 The Meaning of I l l n e s s , Suffering and Healing 72 The Experience of I l l n e s s and Healing 73 Assumptions 77 80 The Journey of Individuation 81 Assumptions 84 87 Existential-Humanistic Views 87 Assumptions 88 91 Suffering and Healing in the Cancer Experience 92 Assumptions 93 97 101 Summary of Assumptions on the Meaning of Suffering, I l l n e s s and Healing 102 My Own Experience of Breast Cancer and Mastectomy 108 My Assumptions 148 CHAPTER I I I . METHOD 150 Existential-Phenoraenological Psychology 150 v i Page Co-Researchers 153 Selection of Co-Researchers 154 Demographic Information 155 Phenomenological Interview 156 Procedure 158 Analysis and E x p l i c a t i o n of Meaning 159 CHAPTER IV. RESULTS 164 Interviews 164 The I n i t i a l Interview 164 The V a l i d a t i o n Interview 169 From Interviewing to Analysis: The Researcher's Experience 176 Formulation of Themes 179 Themes of the Experience 184 Clusters of Themes 197 Exhaustive Description of the Breast Cancer/Mastectomy Experience " 198 Condensed Description of the Breast Cancer/Mastectomy Experience 206 Portrayal of I n d i v i d u a l i t y 209 CHAPTER V. DISCUSSION 225 Limit a t i o n s of the Study 225 Dialogue with Myself 226 Theoretical Implications 231 Implications for Counselling 237 Implications for Future Research 239 Summary and Conclusions 240 v i i Page REFERENCES 243 APPENDIXES A. SIGNIFICANT STATEMENTS 247 B. PROTOCOLS 274 v i i i LIST OF TABLES Page Table 1 Correspondence Between Suffering and Gains Through the Experience 228 Table 2 S i g n i f i c a n t Statements 248 ix ACKNOWLEDGEMENTS I would l i k e to thank the following people for contributing to this thesis: My co-researchers for the i r experiences and insigh t s Dr. Larry Cochran, my supervisor, for his f a i t h i n this project and his tough and s o l i d c r i t i c i s m Dr. Sharon Kahn and Dr. Lorette Woolsey for their challenge and encouragemen t Penny L u s z t i g for her continuing moral support My friends and family for their i n t e r e s t and p r a c t i c a l help L y a l l for his love and support DEDICATION I would l i k e to dedicate this thesis to Barbara Roy, who found meaning in her cancer experience. Although she did not survive cancer, her l i f e continues to i n s p i r e many l i v e and works, including mine. 1 CHAPTER I Introduction Purpose of the Study What i s the meaning of the breast cancer/mastectomy experience? This question seems important for counsellors to ask and for researchers to attempt to answer. Mastectomy f or breast cancer i s a common surgery, and a vast body of l i t e r a t u r e has accumulated on i t s physical and psychological e f f e c t s . Yet the meaning of the experience for patients themselves has not been understood. The purpose of th i s study i s to understand the meaning of the breast cancer/mastectomy experience. An existential-phenomenological approach has allowed me to investigate breast cancer/mastectomy as a human experience i n a profound and precise way. Overview The f i r s t chapter indicates the purpose and s i g n i f i c a n c e of t h i s study. The second chapter i s divided into three parts. The f i r s t part reviews the l i t e r a t u r e on breast cancer and mastectomy. Many d i f f e r e n t approaches to the experience are presented. The assumptions of these approaches are drawn out, and t h e i r l i m i t a t i o n s and contradictions are in d i c a t e d . The next part of the second chapter presents some approaches 2 to the meaning of i l l n e s s , s u f fering and healing that are congenial with my own experience of breast cancer and mastectomy. By explicating the assumptions of these authors, I am in a better p o s i t i o n to c l a r i f y my own assumptions and set them aside in the conduct of t h i s research. The f i n a l part of the second chapter gives an account of my own experience with breast cancer and mastectomy, followed by my own assumptions about the meaning of t h i s experience. The t h i r d chapter gives a b r i e f summary of the e x i s t e n t i a l -phenomenological approach to human experience and a detailed d e s c r i p t i o n of the p a r t i c u l a r research method used i n t h i s study. The fourth chapter presents the r e s u l t s of my ana l y s i s , including a l i s t of themes and t h e i r d e s c r i p t i o n s , the exhaustive de s c r i p t i o n and the condensed structure or es s e n t i a l core of the breast cancer/mastectomy experience. The fourth chapter ends with a portrayal of i n d i v i d u a l i t y , which shows how the common pattern or meaning of t h i s experience was r e f l e c t e d i n the i n d i v i d u a l l i v e s of two of the women i n my study, who seemed on the surface to have had very d i f f e r e n t experiences. In the f i f t h chapter ray dialogue with the re s u l t s i s followed by a discussion of implications for theory, research and p r a c t i c e . Significance of the Study The approach of th i s study i s d i f f e r e n t from that of any e x i s t i n g studies on breast cancer and mastectomy. Although there has been much research i n th i s area from many d i f f e r e n t perspectives, few attempts 3 have been made to study the breast cancer/mastectomy experience from the patient's point of view (Rosser, 1981). These inside approaches either r e j e c t the p o s s i b i l i t y that personal meaning can be found ( E r v i n , 1973) or imply the p o s s i b i l i t y of meaning without exploring i t (Quint, 1963, 1964). Most of the l i t e r a t u r e approaches the patient's experience from the outside. The patient i s seen, for example, as someone whose stress needs to be reduced or overcome so that she can return to normal (Holland & Mastrovito, 1980); or as someone with a number of psychological and s o c i a l problems requiring solutions, with the help of a counsellor (Schain, 1976). Underlying most approaches to the experience i s the assumption that recovery means an adjustment or readjustment to normality. What this means i s , i n most cases, simply taken for granted. Ray's study (1977) i l l u s t r a t e s some of the confusions and contradictions i m p l i c i t i n the standard of adjustment as health. Lasser (1972) gives the most e x p l i c i t view of what readjustment to normality means. According to Lasser, a woman has recovered from breast cancer and mastectomy i f she remains unchanged as a person while moving into the future. Such a patient has been able to put the cancer surgery behind her as though nothing of great s i g n i f i c a n c e has happened. She keeps busy and attends to the needs of others rather than f e e l i n g sorry for h e r s e l f . She i s the same woman she always was, only better; she has grown without changing in any fundamental way. Lasser expresses the view of the Reach to Recovery volunteer organization, which she started, 4 and which i s now part of the American Cancer Society's r e h a b i l i t a t i o n program, used by doctors to f a c i l i t a t e the s o c i a l and emotional recovery of breast cancer patients. Though views of recovery d i f f e r i n s p e c i f i c ways, the standard of adjustment underlies the p s y c h i a t r i c , psychosocial and psychoanalytic approaches to breast cancer and mastectomy, as well as stage theories of recovery from cancer. From the perspective of health as adjustment, any change i n a woman who undergoes a mastectomy for breast cancer becomes a problem to be solved or managed, a stress to be eliminated or an emotion to be released, rather than an aspect of a human experience with a meaning to be explored and understood. While K l e i n (1971) sees recovery as integ r a t i o n rather than adjustment, she defines the tasks of healing i n an external way. They are seen as the same for a l l women. Attempts in the l i t e r a t u r e to explain the meaning of breast cancer and mastectomy are also externally imposed. For example, Renneker and Cutler (1952) see the meaning of the breast loss as the same for a l l women; i t s i g n i f i e s an end to the basic feminine role of sexuality and motherhood. This "loss matters more to normal younger women than to normal older ones, who are more concerned about surviving cancer. Schain (1976) discusses the s o c i a l stigma of the breast l o s s , and Peters-Golden (1982) discusses the s o c i a l stigma of being a cancer patient. Personal meanings, however, are not explored. In a recent a r t i c l e Taylor (1983) presents a cognitive theory of recovery from breast cancer. She describes a search for meaning as an important aspect of recovery, which she inte r p r e t s as "cognitive adaptation" or "readjustment" (p. 1161) of the patient's thinking. 5 Taylor regards the patient's personal meaning as based on " i l l u s i o n " (p. 1161). By i l l u s i o n she means pos i t i v e b e l i e f s unsupported by facts or a p o s i t i v e i n t e r p r e t a t i o n of f a c t s . She concludes that "successful recovery from tragedy rests on i l l u s i o n " (p. 1161) and that " f a r from impeding adjustment, i l l u s i o n may be e s s e n t i a l for adequate coping" (p. 1171). Taylor's study indicates the importance of the researcher's stance in studying the meaning of a human experience as well as the confusion that can r e s u l t when th i s stance i s not made e x p l i c i t . Taylor's i m p l i c i t perspective discounts the very meaning she has set out to f i n d . Her subjects are approached as objects of research and hence i n an external way. The gap between personal meaning and objective r e a l i t y i s apparent throughout her a r t i c l e . Her assumption i s that anything "subjective" cannot be r e a l and that the meaning of the patient's experience i s subjective. Such a dichotomy between subject and object w i l l exist i n any approach to the experience of breast cancer and mastectomy by t r a d i t i o n a l s c i e n t i f i c psychology. As long as t h i s gap e x i s t s , the meaning of the experience w i l l not be understood. Rosser (1981) exphasizes the need for research into the meaning of the breast cancer experience and i t s treatment for patients. Such research, she says, must seek to understand through l i s t e n i n g and recording i n d e t a i l the statements that women make about t h e i r experiences i n t h i s area. Only i n t h i s way can unfounded assumptions about the experience be challenged. Rosser implies that such research 6 must overcome the gap between subject and object, but she does not indicate how th i s can be done. My own approach to the breast cancer/mastectomy experience i s an existential-phenomenological one. This "human science" as Giorgi (1970) c a l l s i t , t r i e s to understand human l i f e in a way that i s as free as possible of our c u l t u r a l presuppositions such as the d u a l i s t i c s p l i t between subject and object ( V a l l e & King, 1978, p. 7). The researcher makes his or her perspective e x p l i c i t and draws out assumptions about the meaning of the experience that w i l l be investigated. Research i s conducted through dialoguing with other human beings as equals and experts on their experiences, through d i s c i p l i n e d r e f l e c t i o n on their accounts of the i r experiences, and through sharing the res u l t s of the analysis with them for v a l i d a t i o n of meaning ( G i o r g i , 1970, p. 189; pp. 203-205; V a l l e & King, 1978, p. 15). The t h i r d chapter of t h i s thesis gives a much more detailed account of existential-phenomenological psychology. This approach enabled me to describe the structure or common pattern or meaning of the breast cancer/mastectomy experience as i t was l i v e d by the six women in t h i s study; to understand what recovery means to these women; and to provide a foundation for the kind of research that i s needed i n this area of human experience. 7 CHAPTER II Review of the L i t e r a t u r e The f i r s t part of th i s l i t e r a t u r e review aims to explicate the assumptions of various approaches to the breast cancer/mastectomy experience. A summary of one or more studies i l l u s t r a t i n g each position i s given, followed by assumptions contained i n that position about the patient's experience of breast cancer and mastectomy. Positions presented include medical, r e h a b i l i t a t i o n , p s y c h i a t r i c , psychosocial, psychoanalytic and cognitive views; the views of Reach to Recovery, stage theories, c u l t u r a l anthropology, c r i s i s counselling and the adjustment theory that underlies most of the above positions; and f i n a l l y , the few attempts that have been made to study the experience from the i n s i d e . These l a s t studies view mastectomy as a turning point and mastectomy as despair. Each of these thirte e n positions contains assumptions about the breast cancer/mastectomy patient's experience of i l l n e s s and recovery. These assumptions are brought together i n a f i n a l summary and c r i t i q u e , which points out gaps and contradictions i n the views of the experience. To help me c l a r i f y my own assumptions, the second part of the l i t e r a t u r e review presents some approaches to the meaning of i l l n e s s , s u f f e r i n g and healing that are congenial with my experience of breast cancer and mastectomy. The assumptions of these positions are explicated and brought together i n a summary. F i n a l l y , I present an 8 account of my own experience of breast cancer and mastectomy, followed by my own assumptions about the meaning of t h i s experience. Approaches to Breast Cancer and Mastectomy Medical Views of Breast Cancer and Mastectomy Giuliano (1984) summarizes the current medical view of breast cancer and mastectomy. The breast i s the most common s i t e of cancer i n women and the leading cause of cancer death among American women. It i s the leading cause of death i n women i n their early f o r t i e s . It occurs frequently in women over 30. The longer a women l i v e s , the more l i k e l y she i s to develop breast cancer. 1 out of every 11 American women i s expected to develop breast cancer during her l i f e t i m e (p. 429). The most common symptom of breast cancer i s a lump i n the breast, usually painless. About 90% of these lumps are discovered by women themselves. Other less frequent symptoms include breast pain, nipple discharge, detraction, enlargement or i t c h i n g of the nipple; and redness, generalized hardness, enlargement or shrinking of the breast. Through mammography or X-ray examination of the breast, breast cancer can be detected before any symptoms appear. Some cancers can be i d e n t i f i e d two years before a palpable lump appears. But mammography i s not a substitute for biopsy, the removal and microscopic examination of breast tissue for the purpose of diagnosis. Before a decision i s made about treatment, cancer s p e c i a l i s t s determine the type of cancer and the extent or stage of the disease. 9 Mastectomy i s a su r g i c a l treatment for breast cancer. There are various types of mastectomy. U n t i l about ten years ago, the standard medical treatment for breast cancer was the r a d i c a l mastectomy, which was developed by Halsted of Johns Hopkins i n the 1880's. This type of surgery removes the breast, the pectoral muscles and the lymph nodes of the a x i l l a or armpit. Most patients with p o t e n t i a l l y curable breast cancer now have a modified r a d i c a l mastectomy, which removes only the breast and a x i l l a r y lymph nodes. It i s much less d i s f i g u r i n g and gives equal r e s u l t s i n terms of five-year s u r v i v a l rates, (p. 435). A simple or t o t a l mastectomy removes only the breast. A segmental or p a r t i a l mastectomy removes only the tumour and surrounding t i s s u e s . Giuliano says that segmental mastectomy with removal of a x i l l a r y nodes and combined with radiotherapy should be an option for women with small tumours. But the patient should be cautioned that such treatment i s s t i l l r e l a t i v e l y new and that long-term r e s u l t s are s t i l l unknown. Women whose a x i l l a r y nodes indicate the presence of cancer may also receive chemotherapy treatment. A few days af t e r a r a d i c a l or modified r a d i c a l , a woman should be encouraged to use her affected arm and shoulder. After two weeks she should have a f u l l range of arm motion. She should continue to avoid breaks i n the skin of her hand and arm on the su r g i c a l side to prevent i n f e c t i o n . Her morale w i l l be improved by a temporary prosthesis, and she should receive information about a permanent device and about breast reconstruction, i f t h i s i s a r e a l i s t i c p o s s i b i l i t y for her. After surgery the patient should have follow-up examinations for l i f e . She should examine her remaining breast monthly and have annual 10 mammograms, as metastases or areas of spread of cancer may appear as long as 15 years a f t e r a mastectomy. The standard of success in surgery ("cure" f o r breast cancer) i s generally expressed i n terms of five-year s u r v i v a l rates. But Giuliano says "Most patients who develop breast cancer w i l l ultimately die of breast cancer. . . .Five-year s t a t i s t i c s do not ultimately r e f l e c t the f i n a l outcome of therapy" (p. 438). There has been much controversy within the medical profession about the value of mastectomy as a treatment for breast cancer. Cope (1977), for example, argues that since mastectomies have not succeeded in reducing the mortality rate from breast cancer, they are not worth the re s u l t i n g m utilation. Others, f o r example, Hayward (1981), staunchly defend some form of r a d i c a l mastectomy as the only safe procedure, at least for another decade, when c l i n i c a l t r i a l s with a l t e r n a t i v e methods w i l l provide d e f i n i t i v e information. A t r a d i t i o n a l attitude to mastectomy i s expressed by Watson (1966), who sees the controversy over treatment methods as fr i v o l o u s i n the l i g h t of the importance of saving l i v e s : "Protagonists of one or other treatment modality tend to excess i n v o c i f e r a t i o n , so that we are frequently amazed at the therapeutic passions aroused by what i s , i n spi t e of modern glamorization, an a f f l i c t i o n of a s u p e r f i c i a l e a s i l y disposable u t i l i t a r i a n appendage" (p. 548). He believes that the physical handicaps of r a d i c a l mastectomy are gre a t l y overemphasized, and that the concern about psychological e f f e c t s i s unnecessary and even dangerous. Women are not upset by mastectomies unless people t a l k to them about th e i r f e e l i n g s : 11 If well-intentioned thorough in v e s t i g a t i o n s as to the attitudes and reactions of the patient prior to, and a f t e r the operation are conducted, undoubtedly evidence of psychologic trauma w i l l frequently be manifest. Such evidence, however, w i l l usually have been produced by the inquiry rather than disclosed by i t . The adoption of a casual a t t i t u d e by the doctor before the operation and throughout follow-up examinations w i l l go a long way toward eliminating these untoward and unnecessary occurrences, (p. 557) The t r a d i t i o n a l medical view assumes that a mastectomy w i l l stop the cancer from spreading. As Henderson and Canellos (1980) point out, t h i s view assumes that breast cancer spreads i n an orderly manner from breast to regional lymph nodes and only then to distant organs, and that this, spreading occurs a f t e r several months to several years i n which tumour growth i s confined to the breast. Accordingly, early detection followed by r a d i c a l surgery or mastectomy with r a d i a t i o n would permanently remove the cancer, at l e a s t in some patients. But t h i s view of breast cancer i s changing. Baura (1977) says that cancer i s not a l o c a l i z e d disease but systemic; i t i s not a single homogeneous e n t i t y , but a multitude of d i f f e r e n t diseases. Basco (1981) says that i n most breast cancer patients the disease has already spread by the time the diagnosis i s established. Thus there i s a d e f i n i t e trend toward more conservative surgery complemented by adjuvant chemotherapy and/or radiotherapy (Lewison, 1980, p. 863). Lewison (1980) speaks with enthusiasm about changing concepts of breast cancer and i t s treatment, including the trend toward more 12 conservative surgery and the concern with q u a l i t y as well as quantity of l i f e for the patient. Doctors, he says, are now aware of the importance of cosmetic concerns for a woman; breast reconstruction where suitable i s an important part of t o t a l treatment. However, Lewison does not approve of "unwise laws as well as unqualified decisions by the patient" (p. 863). He i s r e f e r r i n g s p e c i f i c a l l y to the patients' r i g h t s b i l l i n Massachusetts, requiring that a l l breast cancer patients be f u l l y informed about a l t e r n a t i v e medical treatments. He says t h i s i s the price that i s paid for freedom of choice and the democratic process. Only s p e c i a l i s t s , he believes, have the knowledge that i s necessary for proper medical decisions about treatment for breast cancer. Other doctors, for example, C r i l e (1974), believe that i t i s important for a woman to be aware of the various methods of tre a t i n g breast cancer so that she can discuss them i n t e l l i g e n t l y with her doctor. Together they can decide on a method of treatment that i s acceptable to them both. Assumptions Breast cancer i s a physical disease that threatens a woman's l i f e . Without appropriate medical treatment, she w i l l d i e . A woman who has a mastectomy loses her breast (and perhaps also her chest muscle) i n order to save her l i f e . Depending on the spread of the cancer, she may also have r a d i a t i o n or chemotherapy to save her l i f e . A woman's breast i s not a v i t a l organ; thus i t s removal i s not a threat to her physical health. It need not be a threat to her emotional 13 health. A prosthesis or breast reconstruction w i l l improve her appearance af t e r surgery, as well as her morale. Recovery from a mastectomy i s ph y s i c a l . The patient's i n c i s i o n has healed. She has f u l l use of her affected arm and shoulder and i s wearing a replacement for her breast. She need only be ca r e f u l to avoid i n f e c t i o n i n the arm and hand on the s u r g i c a l side. Recovery from breast cancer i s ph y s i c a l . It i s defined in terms of su r v i v a l rates. A woman who continues to survive a f t e r f i v e years without a recurrence of cancer has recovered, but she has not been cured. She has no guarantee of a cure. She can s t i l l have a recurrence of cancer. Following a mastectomy, she w i l l be a cancer patient for the rest of her l i f e . Depending on the attitude of her doctor, a woman may or may not be involved i n making the decision as to the type of surgery she w i l l have for breast cancer. R e h a b i l i t a t i o n View of Breast Cancer and Mastectomy Burdick ( 1 9 7 5 ) , a surgeon, sets down p r i n c i p l e s and goals for the r e h a b i l i t a t i o n of the breast cancer patient. The general goal, he says, " i s to restore patients to a normal or as near-normal state as possible" (p. 6 4 5 ) . He discusses four main categories of r e h a b i l i t a t i o n . The f i r s t two c a t e g o r i e s — f u n c t i o n a l and physical or cosmetic r e h a b i l i t a t i o n — a r e s i m i l a r to Giuliano's view of recovery from a mastectomy. Normal 14 functioning has been restored to the woman's hand, arm and shoulder on the surgical side, and she has a normal, well-groomed appearance. The goal of the third category, employment and vocational rehabilitation, i to return the patient to her previous activity at home or in the work force. "While a variable degree of discomfort or swelling in the arm may persist, these symptoms generally are not disabling, and most mastectomy patients will be able to return to f u l l previous functional activity" (p. 646). High survival rates indicate that a woman can have a prolonged productive period after a mastectomy, and employers should realize this. The goal of the fourth category, sociopsychological rehabilitation is to give her support and encouragement and reduce her anxiety so that she will return more rapidly to her daily l i f e . Burdick stresses the importance of. the other members of the patient's health care team—the nurse, social worker and Reach to Recovery volunteer—in f a c i l i t a t i n g this aspect of her rehabilitation. She should be allowed to express he feelings and have them accepted as natural. Each member of the team should approach her with the attitude "This patient has a future" (p. 648). Assumptions Recovery from breast cancer and mastectomy means returning to normal. A woman who has recovered is attractive, well-groomed and natural-looking. She has f u l l use of her arm on the surgical side 15 and i s working up to her f u l l capacity at home and in her job outside her home. Any pain she s t i l l f e e l s as a r e s u l t of her surgery need not keep her from making a contribution as a responsible, productive member of society. She has overcome her anxiety, which was natural in. the circumstances, and has returned to normal emotionally. She i s emotionally stable. Returning f u l l y to her past l e v e l of functioning can give her hope for the future. P s y c h i a t r i c Approach to Breast Cancer and Mastectomy Holland and Mastrovito (1980), both p s y c h i a t r i s t s , outline factors that contribute to a good or poor psychologic adaptation to breast cancer. The two main groups of factors are medical and psychosocial. Psychosocial factors consist of the c u l t u r a l context, the patient's patterns of coping with s t r e s s , the point in her l i f e c y c l e at which breast cancer occurs, and her support system. Medical factors include symptoms, s i t e of tumour, stage of the disease, extent of the surgery, s i d e - e f f e c t s of adjuvant treatment, a v a i l a b i l i t y of prostheses and breast reconstruction, and psychological management by the health care team. Each factor can be p o s i t i v e or negative; i t can increase the stress that a patient faces or add to her resources for overcoming s t r e s s . "Psychological interventions are aimed at a l t e r i n g one or more of these factors in s p e c i f i c ways" (p. 1051). Most women can respond to the stress of breast surgery with only temporary psychological d i s t r e s s . But some women have extreme stress 16 reactions as a re s u l t of one negative factor or a combination or accumulation of several negative f a c t o r s . "These responses constitute the range of ps y c h i a t r i c syndromes seen commonly in cancer" (p. 1047). There are two main types of ps y c h i a t r i c syndromes. Stress responses occurring around the time of surgery are c a l l e d perioperative p s y c h i a t r i c syndromes. They are characterized by anxiety, depression, or a mixture of both. The patient w i l l be unable to concentrate or to perform her routine d a i l y tasks. She w i l l have insomnia, anorexia and weight l o s s . This kind of stress response has phases l i k e those that occur i n acute g r i e f ; these phases are outcry, d e n i a l , emotional d i s t r e s s and re s o l u t i o n . The patient i s l i k e l y to have a high l e v e l of anxiety, which may i n t e r f e r e with reasonable judgement about accepting proper medical treatment. A r e l a t i o n s h i p of trust with the surgeon i s the key to managing preoperative s t r e s s . The surgeon must recognize that some of the woman's responses to him have an i r r a t i o n a l basis i n her e a r l i e r r e l a t i o n s h i p s with parent figures; thus he can avoid taking them personally. He can help to prepare her for surgery by explaining the reasons for procedures and in d i c a t i n g what she can expect to experience after surgery. A nurse, s o c i a l worker or volunteer ex-patient can o f f e r counselling and support that can help to r e l i e v e her anxiety. After surgery, postoperative p s y c h i a t r i c syndromes may occur. They are of two kinds. The most common are a patient's stress reactions to the loss of her breast and to readapting to her f u l l s o c i a l and sexual r o l e . She i s reacting to the loss of a body part which has an emotional 17 meaning to her in terms of attr a c t i v e n e s s , sexuality and nurturing. "The response usually i s a type of normal g r i e f " (p. 1048). The woman recovers better i f the surgeon prepares her for the fact that she may cry e a s i l y and f e e l more anxious and depressed for a few weeks af t e r a mastectomy. She may have frightening nightmares and fear r e j e c t i o n by her partner. The surgeon manages her reaction by accepting her g r i e f and sometimes her h o s t i l i t y i n a supportive manner and by reassuring her that her feeli n g s are not abnormal. Individual and group counselling can help to maintain her morale and improve her a b i l i t y to cope. Marital counselling with her partner, perhaps in a group, can help to reduce maladaptive responses. The more serious postoperative syndrome i s delirium psychosis. The cause i s not clear; i t seems to come from a combination of mild cerebral dysfunction and response to stress. P s y c h i a t r i c consultation i s advised for t h i s syndrome. The patient has frightening h a l l u c i n a t i o n s , i l l u s i o n s or delusions, with some insight into t h e i r u n r e a l i t y . She behaves i n an agitated, excited way that may threaten harm to herself or others. Her behavior should be controlled by medication such as Haloperidol. Most women return to normal home l i f e and work one to three months a f t e r surgery. Those who s t i l l have anxiety and depression should be given medication such as Valium and bedtime sedation such as Dalmane to reduce tension and encourage a more relaxed response to s o c i a l s i t u a t i o n s . Temporary f r i g i d i t y can be prevented by i n s t r u c t i o n from the surgeon to resume sexual r e l a t i o n s as soon as possible. "The l i f e 18 c r i s i s posed by breast cancer can serve as a ca t a l y s t to deal with long standing marital problems. Like any l i f e c r i s i s , i t can be used p o s i t i v e l y to promote better adjustment. Reassessment of rel a t i o n s h i p s and l i f e goals i s not uncommonly an outgrowth of l i f e - t h r e a t e n i n g i l l n e s s , bringing values into sharper focus" (p. 1050). The reaction to recurrence of cancer i s a stress response syndrome characterized by anxiety, depression and at times, s u i c i d a l r i s k . Women who have been severely i l l for a long time are often referred to p s y c h i a t r i s t s because of depression. Their emotional resources seem to be exhausted and th e i r cognitive a b i l i t y diminished. Women who are older and have an advanced stage of cancer are at highest r i s k for depression and s u i c i d a l thoughts. They should be monitored for s u i c i d a l r i s k . Antidepressants are often h e l p f u l , e s p e c i a l l y i f they have insomnia. Assumptions The breast cancer/mastectomy experience i s an experience of s t r e s s . Some women experience more stress than others. Some are more upset by stress than others. Thus women's experience of breast cancer and mastectomy d i f f e r . The extent of a woman's stress and her reactions to stress depend on a combination of s o c i a l , psychological and medical f a c t o r s . Recovery involves overcoming stress and returning to normal. A woman who does t h i s has adapted to breast cancer. Most women are only temporarily upset by the stress they experience. But some women react to stress in an extreme way. Extreme 19 reactions before a mastectomy are fe e l i n g anxious and depressed or a mixture of both. The woman has trouble sleeping, eating and concentrating on her ordinary d a i l y tasks. Counselling can help her overcome her anxiety and depression. After surgery a woman may f e e l anxious and sad and cry e a s i l y . It helps her to know that she i s experiencing g r i e f for her l o s t breast and that her feelings are normal, even though they are more extreme than the feelin g s of other women. Counselling can help her to overcome her g r i e f . More serious than g r i e f i s delirium psychosis. The woman experiences h a l l u c i n a t i o n s , delusions and i l l u s i o n s and behaves in an agitated way. She i s out of touch with ordinary r e a l i t y and i s to some extent aware of this f a c t . Medication can calm her behavior and tal k i n g with a p s y c h i a t r i s t can eliminate her h a l l u c i n a t i o n s , i l l u s i o n s and delusions. After a woman returns home, she may experience anxiety, depression and sexual problems. T r a n q u i l l i z e r s , sleeping p i l l s and counselling can reduce her stress and increase her comfort. The d i f f i c u l t i e s she experiences i n her marriage can help her to reassess her values and improve her l i f e . A woman who gets a recurrence may want to k i l l h e r s e l f . She should be c a r e f u l l y watched and given antidepressants to improve her mood and help her sleep. A woman i s cured when her suf f e r i n g r e s u l t i n g from breast cancer and mastectomy i s eliminated. Thus one wonders how she improves her l i f e through the experience of d i f f i c u l t y . The authors make t h i s statement as a p o s s i b i l i t y , but they do not explore i t , and i t seems incongruous in the context. 20 The View of Reach to Recovery A f t e r her own mastectomy i n 1952, Terese Lasser (1972) s t a r t e d the mastectomy volunteer o r g a n i z a t i o n Reach to Recovery. Since 1969 t h i s program has been part of the American Cancer Society's r e h a b i l i t a t i o n program f o r cancer p a t i e n t s . Lasser has l e c t u r e d to p r o f e s s i o n a l s and tra i n e d volunteers i n other c o u n t r i e s . The Canadian Cancer Society has a s i m i l a r volunteer program for breast cancer p a t i e n t s . The basis of the program i s the p r a c t i c a l help and emotional support provided to women who have j u s t undergone mastectomies by volunteers who have recovered from t h e i r s u r g e r i e s . Lasser f e l t the need for such contact a f t e r her own operation: "How I ached to talk, to another woman who had had the same experience and come through i t , and so could counsel, and reassure, and understand" (p. 22)! But no such help was a v a i l a b l e . She was given no guides as to shopping f o r breast forms or clothes or e x e r c i s i n g her a f f e c t e d arm. Even worse, she was given no guides as to f a c i n g l i f e again, "a scarred woman" (p. 20) worrying about r e l a t i n g to others, e s p e c i a l l y her husband. She f e l t very much alone: "There i s , indeed, a V a l l e y of Despair, desolate, s o l i t a r y , swept by anguish, darkened by confusion. I , too, have been there" (p. 21). Lasser worked hard at t r y i n g to solve her own problems. A few months a f t e r her surgery she heard about an acquaintance who was profoundly depressed a f t e r a mastectomy. With the doctor's permission, Lasser v i s i t e d her i n h o s p i t a l . Impressed with the a t t r a c t i v e n e s s of 21 Lasser's appearance, her physical energy and her a c t i v e , busy l i f e , the patient was inspired to hope. Lasser thought of i n s p i r i n g others, and thus the idea for Reach to Recovery was born. Lasser talked to doctors and wrote a manual which was d i s t r i b u t e d to mastectomy patients whose surgeons gave the i r approval. She trained volunteers to v i s i t patients whose doctors permitted them to do so. According to Lasser, the f i r s t p o s i t i v e step to health for a mastectomy patient i s an acceptance of the r e a l i t i e s of her s i t u a t i o n . A woman needs to do arm exercises approved by her doctor, wear a prosthesis and dress c a r e f u l l y . She may need to take more r e s p o n s i b i l i t y i n the sexual r e l a t i o n s h i p with her husband, since he w i l l be concerned not to to hurt her. Otherwise she i s exactly the same as she was before the surgery. Lasser believes that accepting t h i s view of oneself as fundamentally unchanged i s the basis of recovery: "Remember that you are the same person you always were—and can become even better! Say t h i s to yourself. Say i t aloud. Over and over. Believe i t , for i t i s so" (p. 60). She advises the patient's family to hold t h i s same view: Assume that Mother i s the same person she has always been, because, in truth, she i s . Nothing has changed except that now she must wear a breast form. Unless she chooses to t e l l , no one w i l l know about i t ; and with a b i t of f i x i n g up here and adding to t h e r e — s h e w i l l be able to wear almost everything in her wardrobe—including swimsuits. (p. 84-85) Though the family should be loving and considerate, they should not encourage her to f e e l sorry for h e r s e l f . Too much sympathy i s bad for 22 her. The best thing for the patient to do i s to keep busy and active and return to her normal l i f e as soon as possible: C u l t i v a t e the attitude that your operation i s an event of the past. Your former routine of l i v i n g was interrupted by i t , but now i t ' s over, so l i f e goes on as usual. Think that, believe i t , and l i f e w i l l go on as u s u a l — w i t h every l i k e l i h o o d of becoming even better, (p. 108) The only kind of change that i s v a l i d i s to become more outgoing i n r e l a t i o n to others. A shy, r e t i r i n g , introverted type of woman should r e a l l y make an a l l - o u t e f f o r t to become more socia b l e . . One woman who i s described as a model of recovery from a mastectomy continued to work in a hat factory, do a l l her own housework, bake her own bread, take care of her i n v a l i d daughter and handicapped husband. In her daughter's words, "She never looked for sympathy and j u s t resumed her l i f e as i f she never had an operation" (p. 113). She was always cheerful and f r i e n d l y . In Lasser's view " t h i s woman was a dramatic example of how to make use of l i f e instead of permitting l i f e to use you" (p. 113). A woman should make an e f f o r t to think of others rather than h e r s e l f . She should try to make herself a more i n t e r e s t i n g person by keeping up with world events, but without becoming opinionated. Above a l l , she should maintain a po s i t i v e attitude to l i f e . Lasser hardly mentions the cancer except as something that has already been dealt with by the surgery. The point i s , the woman i s s t i l l a l i v e and has the chance to get on with her l i f e . She i s not alone. A quarter of a 23 m i l l i o n women have been cured of breast cancer: "A quar t e r - m i l l i o n of us, a l i v e and well, each the same person we were before the operation, with the po t e n t i a l of becoming a better wife, a better mother, a better woman in every sense of the word" (p. 28). It i s important for a woman to love h e r s e l f , i . e . , f e e l respect for herself and pride in her femininity, which has not been destroyed by the surgery. Shame can destroy her s e l f - l o v e and hence hinder her recovery. Prayer to a personal God can help her maintain a p o s i t i v e a t t i t u d e to l i f e . A recovered patient who wants to become" a volunteer must be approved by her physician and surgeon. She must give v i s i b l e evidence of having adjusted to her surgery both p h y s i c a l l y and emotionally. She must be a t t r a c t i v e and well-groomed, with a w e l l - f i t t e d prosthesis and a good posture, and have complete arm movement so that she can demonstrate exercises to the patient. She must have an outgoing personality, projecting optimism and self-confidence. Such a woman i s then "screened by the American Cancer Society unit and indoctrinated i n our code of eth i c s " (p. 141). This i s followed by two f u l l days of t r a i n i n g . Besides learning to e s t a b l i s h rapport and demonstrate arm exercises, the volunteer i s told what to say and what not to say about the patient's adjustment to family and friends when she returns home. One of the advantages of Reach to Recovery from the professional perspective i s that i t does not i n t e r f e r e with the doctor-patient r e l a t i o n s h i p . Lasser makes clear that at every step of the way the doctor's approval i s necessary. A volunteer's t e r r i t o r y i s very c l e a r l y 24 defined, and she does not stray outside i t . Volunteers are now part of r e h a b i l i t a t i o n teams i n hospitals i n the States. The team consists of doctor, nurse, physiotherapist and volunteer. For Lasser, r e h a b i l i t a t i o n or recovery a f t e r mastectomy means "growing to become a better woman—in every way" (p. 156). "Remember, too, that you are not reaching backward to the l i f e you knew before your operation, but forward to a more vigorous, more rewarding and exciting l i f e " (p. 156). Above a l l , Lasser says, a mastectomy patient should remember "that to be a l i v e means to grow" (p. 156). Assumptions Recovery from breast cancer and mastectomy i s more than ph y s i c a l . A woman also needs to overcome i s o l a t i o n and despair. The i n s p i r a t i o n of others who have had si m i l a r experiences can help her to heal. The basis of recovery i s a view of oneself as unchanged and unchanging. Though a woman has l o s t a breast to cancer, she remains the same person she always was. She can grow to be a better person, but without changing herself i n any fundamental way. She can grow by forgetting the past and moving forward into the future. Recovery involves putting the cancer surgery behind her and returning to her normal routine as though nothing much has happened. Despair i s morbid s e l f - p i t y , which comes from i n a c t i v i t y , lack of connection with others, and dwelling on one's sense of mo r t a l i t y . If a woman keeps busy and attends to the needs of others, she w i l l have no 25 time to f e e l sorry f o r h e r s e l f . A p o s i t i v e a t t i t u d e to l i f e w i l l help her recover. S e l f - l o v e and self - r e s p e c t are important to recovery. They come from the b e l i e f that one i s unchanged as a woman and as a person. A breast cancer patient i s not capable of judging whether or not her recovery would be f a c i l i t a t e d by a v i s i t from a volunteer. Such judgements are best l e f t to her doctor, who i s the authority on her emotional as well as her physical health. Psychoanalytic View of Breast Cancer and Mastectomy The c l a s s i c study of psychological adjustment to mastectomy i s that of Renneker and Cutler (1952). Their purpose was to improve the psychological management of women with breast cancer by bringing together s u r g i c a l and psychoanalytic knowledge. Their paper describes conclusions based on the observations by an analyst of 50 women operated on by Cutler. A woman with breast cancer experiences a dual psychological c o n f l i c t : adjustment to breast mutilation and adjustment to invasion by a p o t e n t i a l l y f a t a l disease. The authors discuss each of these problems separately. They describe "postmastectomy depression," a frequent reaction in the group of women studied. Its symptoms are anxiety, insomnia, depressive a t t i t u d e s , occasional s u i c i d a l thoughts, and feelin g s of shame and worthlessness. They compare t h i s syndrome to mourning and att r i b u t e i t to breast l o s s : "One can say that these women 26 mourn the loss of th e i r breast" (p. 834). They are concerned with what thei r husbands and men i n general w i l l think of them now; in addition, they must change t h e i r own i n t e r n a l image of th e i r bodies. The authors explain the depression syndrome by considering the emotional meaning of the breast for a woman. Breasts have two major psychological meanings: f i r s t , they have a sexual s i g n i f i c a n c e . In our culture they are a "badge of femininity" (p. 834), much as the penis i s the symbol of masculinity for a man. Secondly, they represent the role of motherhood. The breast i s "the emotional symbol of the woman's pride in her sexuality and in her motherliness. To threaten the breast i s to shake the very core of her feminine o r i e n t a t i o n " (p. 834). They draw out implications for the surgeon: "He must understand that the primary emotional reaction connected with disease of the breast usually i s not a fear of cancer or death, but i s rather the shocking f e e l i n g that the basic feminine r o l e i s i n danger" (p. 834). Though the cancer threat i s present, i t does not become the cent r a l problem of adjustment t i l l the woman has managed to adjust to her breast l o s s . "Her f i r s t problem i s that of protecting her breast; only l a t e r does she begin protecting her l i f e " (p. 834). The authors go on to describe normal and abnormal reactions to breast l o s s . Women's attitudes to their breasts a r i s e from "deep psychological attitudes of acceptance or denial of the fundamental feminine r o l e , i . e . , sex and motherhood" (p. 834). The mature woman accepts her breasts with pride proportional to th e i r physical appearance and uses them to the best advantage, cosmetically and sexually. After 27 she has been successfully married for some time and has had her chi l d r e n , and e s p e c i a l l y when she can no longer bear c h i l d r e n , her breasts are not so important to her. "We can say that they have served the i r purpose and she i s now ready to accept t h e i r retirement. Her feelin g s over loss of a breast at th i s l a t e r stage are as proportion-ately d i f f e r e n t as the degree of mourning one would expect over the death of a husband in his prime or aft e r his l a t e r retirement from an acti v e , f u l l , and accomplished l i f e " (p. 834). Thus i n the emotionally mature woman the greatest trauma from breast cancer and mastectomy i s to be expected during her childbearing years. It i s greater in d i r e c t proportion to her youth and to the degree of feminine achievement she has not yet attained ( s e x u a l i t y , husband and ch i l d r e n ) . The trauma i s mildest i n postmenopausal women: "In the normal older woman we anticipate that the chief problem w i l l be adjustment to cancer and the p o s s i b i l i t y of death" (p. 835). If the woman reacts d i f f e r e n t l y from anticipated on the basis of her age, the surgeon "should r e a l i z e he i s dealing with a neurotic patient" (p. 836). He must be p a r t i c u l a r l y c a r e f u l i n her management and c a l l i n a p s y c h i a t r i s t i f necessary. The neurotic woman i s unable to accept her femininity completely. "She i s masculine, f r i g i d , or perhaps s u p e r f i c i a l l y sexual i n an exaggerated fashion" (p. 835). She feel s i n d i f f e r e n c e or shame toward her breasts or else i s excessively proud of them. A mastectomy reawakens and i n t e n s i f i e s her i n t e r n a l c o n f l i c t over her femininity, and as a re s u l t her post-mastectomy depression w i l l be most extreme. 28 In discussing the cancer, Renneker and Cutler see anxiety over possible death as a normal reactio n . F a i l u r e to express i t should be viewed s u s p i c i o u s l y . The doctor should try to keep t h i s anxiety within optimal l i m i t s by being "humanly f a c t u a l " (p. 838) with the woman, explaining the facts of her s i t u a t i o n r e a l i s t i c a l l y and helping her with planning. It i s ess e n t i a l that she be aware of the importance of her body's defences i n helping to f i g h t the cancer. This w i l l give her a sense of active p a r t i c i p a t i o n in her recovery and remove her feeli n g of helplessness. A l l of her energy should be directed toward this fight for her l i f e . Assumptions A woman's experience of breast cancer and mastectomy can be divided into two separate a s p e c t s — t h e breast loss and the cancer. She must become adjusted to each of them separately. The reaction to mastectomy i s postmastectomy depression, a syndrome consisting of a number of i d e n t i f i a b l e symptoms. It i s si m i l a r to mourning. The woman i s mourning the loss of her breast and i t s symbolic meaning to her. A young woman i s normally proud of her breasts, e s p e c i a l l y i f they are a t t r a c t i v e . Breasts are not very important to an older woman. A breast loss has the same meaning for a l l women—the loss of sexuality and motherhood, an end to the basic feminine r o l e . Thus i t i s the primary problem for the normal woman s t i l l i n her child-bearing years. 29 The cancer i s secondary. Since the normal older woman has already raised her family, the cancer i s her chief problem. A younger woman who i s more concerned about the cancer or an older woman who i s more concerned about the breast loss i s behaving abnormally, i . e . n e u r o t i c a l l y . A normal woman finds meaning in her basic feminine r o l e — s e x , marriage and motherhood. She accepts her femininity, thus defined, as her destiny. Any other meaning i s by d e f i n i t i o n neurotic. For a woman meaning i s not something to be explored and discovered on an i n d i v i d u a l basis; i t i s something.given, already established by v i r t u e of her physical a t t r i b u t e s and her ro l e in society, which go together. As Freud put i t , "Anatomy i s her destiny" (Rawlings and Carter, 1977, p. 13) . A woman's value i s thus not in he r s e l f , her personal existence, but i n her being-in-relation-to-others. Since her functions as sex partner, wife and mother are dependent on her b i o l o g i c a l age, she may o u t l i v e her usefulness. Thus an older woman who loses a breast to cancer need only be concerned about her physical s u r v i v a l . Her purpose i n l i f e , her feminine meaning, has already been f u l f i l l e d . Like a man who has re t i r e d from his l i f e ' s work, her sense of meaning i s in the past. Yet as a cancer patient i t i s e s s e n t i a l that she take an act i v e , responsible stance and mobilize a l l of her energy to fig h t for her l i f e . Presumably a l i f e whose meaning i s i n the past i s worth f i g h t i n g f o r . 30 I t i s almost as though Renneker and Cutler are talking about two d i f f e r e n t people i n describing the stance an older woman should take toward mastectomy for breast cancer. In r e l a t i o n to the breast loss her stance should be one of passive acceptance of an end to her femini n i t y . In r e l a t i o n to the cancer she should become an active warrior b a t t l i n g for her l i f e . As a cancer patient a woman seems to become a person who values her l i f e for i t s own sake. The authors do not discuss t h i s p o s i t i o n ; they do not seem to be aware of the importance of the d i s t i n c t i o n that underlies t h e i r a n a l y s i s . The Standard of Adjustment An attempt at a controlled empirical study of the psychological implications of mastectomy was made by Ray (1977). Her primary aim was to determine whether mastectomy influences long-term adjustment as re f l e c t e d by measures of depression, anxiety, and self-image. Mastectomy patients were compared with a control group of cholecystectomy ( g a l l bladder) patients 18 months to 5 years a f t e r surgery. As predicted, the mastectomy patients were s i g n i f i c a n t l y more anxious and depressed; the difference in self-esteem approached s i g n i f i c a n c e . Ray also interviewed the mastectomy patients. F i r s t , they were asked to give a retrospective account of th e i r experiences and reactions before and aft e r the breast l o s s . Secondly, they were asked to give the i r current feelings about the breast loss and i t s impact on their l i v e s . They were not asked about the cancer. Since some of the 31 patients might never have known their diagnosis or might have forgotten or di s t o r t e d i t , Ray did not want to arouse concern where none was f e l t . Thus for the health implications of mastectomy she was dependent on the information they spontaneously gave her. About half the mastectomy patients claimed to have adjusted to their breast loss with very l i t t l e d i f f i c u l t y . The surgery, they said, had had no s i g n i f i c a n t impact on their l i v e s . The other half were s t i l l concerned about their disfigurement. They no longer f e l t l i k e "normal" or complete women (p. 375). They were, as predicted, s i g n i f i c a n t l y more depressed and more anxious than the f i r s t group of mastectomy patients. Ray i s concerned that some mastectomy patients might have minimized or denied their fears, e s p e c i a l l y their fear of cancer recurrence. She concludes with the comment that counselling might be of value to help women communicate their feelings and keep them from adopting u n r e a l i s t i c or r e s t r i c t i v e coping styles which impede long-terra adjustment. Assumptions Adjustment i s a standard by which the extent of one's recovery from i l l n e s s can be measured. A well-adjusted person i s normal and healthy. A poorly-adjusted person i s i l l . Adjustment i s a matter of degree. A poorly-adjusted person gets higher scores on measures of anxiety and depression than a well-adjusted person and i s lower i n self-esteem. To what i s one supposed to be adjusted? This problem i s never discussed. Presumably everyone knows. Mastectomy patients are 32 supposed to be adjusted to th e i r breast l o s s , but they are compared with others who have not l o s t breasts. Some mastectomy patients appear to be better adjusted than others as t h e i r breast loss has had no s i g n i f i c a n t impact on t h e i r l i v e s . The patients who are s t i l l concerned about th e i r breast loss are not so well-adjusted. They also f e e l abnormal. A woman who does not know she has had cancer may appear to be adjusted, but her state of adjustment i s precarious. Asking her about cancer would disrupt her adjustment and impede her recovery. Denying a fear of cancer i s unhealthy. She may f e e l better now but be less well-adjusted in the long run. Thus i t seems better for her to face the r e a l i t y of her experience. Recovery from i l l n e s s (long-range adjustment) involves facing one's true feelings and communicating them to another. Ray begins with one assumption about adjustment and moves to another; she does not make th i s movement e x p l i c i t ; i n f a c t , she does not seem to recognize i t . Because of t h i s i m p l i c i t c o n tradiction the a r t i c l e seems confused. This same confusion about the meaning of adjustment as a standard for health underlies most of the l i t e r a t u r e on breast cancer, which i s based on the c l i n i c a l model of r e a l i t y (Rosser, 1981). This model takes for granted a medical model of pathology and a normative view of mental health, the f i r s t absolute and the second r e l a t i v e (Rawlings and Carter, 1977, pp. 24-25). I l l n e s s i s pathology and health i s being l i k e others. A q u a l i t a t i v e view of health i s la c k i n g . 33 It i s i n t e r e s t i n g that Ray begins by comparing groups and moves toward a consideration of i n d i v i d u a l problems of health, where yet another model i s assumed. From the i n d i v i d u a l perspective, the gap between external adjustment and i n t e r n a l experience becomes important; t h i s i s the area that i n t e r e s t s the counsellor. The implied questions—"what helps a woman recover from her i l l n e s s ? what hinders her r e c o v e r y ? — a r e very d i f f e r e n t from the question "How well-adjusted are mastectomy patients compared to others?" Psychosocial Approach to Breast Cancer/Mastectomy Patients Meyerowitz (1980) reviews the l i t e r a t u r e on psychosocial correlates of breast cancer and i t s treatment. The l i t e r a t u r e i s so disorganized that she organizes i t into headings: f i r s t , psychosocial impact and secondly, variables that influence i t s i n t e n s i t y and duration, which are in turn divided into premorbid and postmastectomy v a r i a b l e s . The picture of the mastectomy patient that emerges i s the following: she i s emotionally upset, feels uncomfortable and her a c t i v i t y l e v e l i s reduced. She i s concerned about mutilation, recurrence and death. The extent of her emotional upset depends on the importance of her body and breast to her, her age, the preparation her surgeon has given her and her r e l a t i o n s h i p with her husband. She e i t h e r denies the seriousness of her experience or blames her s e l f or others for her p l i g h t . Her feelings are affected by time, other treatments, and the emotional support a v a i l a b l e to her. 34 She i s a generalized patient, abstracted from many studies of parts of her experience. Only one part at a time can be examined, as under a microscope. Thus the picture that comes from putting these parts together i s f l a t and two-dimensional, f u l l of seams. It i s not a dynamic whole. It i s also external. One does not r e a l l y see the woman's inner experience or i t s s i g n i f i c a n c e at a l l . Schain (1976) discusses psychosocial issues i n counselling mastectomy patients. She defines recovery as "successful adaptation to the various emotional and physical c r i s e s p r e c i p i t a t e d by breast cancer" (p. 46). At every stage of the disease, from detection and diagnosis to follow-up care, there are s p e c i f i c problems that a woman must face. It i s also important for counsellors to recognize that patients w i l l have d i f f e r e n t problems depending on the i r age. Schain also says, however, that mastectomy patients have a single major concern, which w i l l be one of two fundamental issues: "The population of mastectomy patients can be dichotomized into those who prim a r i l y are af r a i d of dying and those whose predominant concern i s fee l i n g l i k e an emotional or sexual c r i p p l e " (p.46). Since counselling the dying i s a speci a l i z e d s k i l l , Schain focuses on counselling women whose mastectomies have apparently stopped t h e i r cancer from spreading. The main issue for them w i l l be the s o c i a l implications of the breast l o s s , which have a devastating psychological e f f e c t . "To experience unexpected breast surgery i s a s o c i a l stigma, a physical i n s u l t and an emotional trauma" (p. 47). 35 Women in our society, Schain says, are brought up to believe that t h e i r value resides i n being b e a u t i f u l . "At present, i n our society, a woman's breasts are more c r u c i a l to her i d e n t i t y and sel f - e v a l u a t i o n than almost any other personal a t t r i b u t e " (p. 47). Thus a mastectomy can r e s u l t at l e a s t temporarily i n a loss of i d e n t i t y . Women who are teachers or writers might have les s d i f f i c u l t y in t h i s regard than dancers or models, as th e i r major l i f e s t y l e remains r e l a t i v e l y unchanged. Counselling must deal with a woman's diminished sense of self-worth and her sexual concerns, as well as her fears of death and dying. Schain l i s t s 11 other issues common to breast cancer patients. The p r i o r i t y of each concern varies with the woman's age, her personality and major defense mechanisms, and the amount of time since the i n i t i a l c r i s i s . Counsellors should try to turn a traumatic s i t u a t i o n into a growthful one for the c l i e n t . In addition to fear, anxiety, jealousy, confusion, i r r i t a b i l i t y , depression and g u i l t , a woman can also show courage and inventiveness. She should be helped to understand her current reactions in the l i g h t of her past psychological and s o c i a l h i s t o r y . Such counselling i s i n t e g r a t i v e , rather than simply reparative. "Often as a r e s u l t of confrontation with catastrophe, a woman reassesses her basic philosophy of l i f e and realigns values and p r i o r i t i e s i n a new and more meaningful manner" (p. 48). The type of therapy a counsellor should use depends on the woman. Some women benefit more from supportive therapy, aimed at re e s t a b l i s h i n g t h e i r formal l e v e l of functioning. For others, i n s i g h t therapy can help achieve a higher l e v e l of functioning. Behavior modification can be 36 used to recondition attitudes and desensitize aversive reactions. T r a d i t i o n a l psychoanalytic techniques can be used for those who are experiencing a r e a c t i v a t i o n of unresolved psychosexual c o n f l i c t s as a re s u l t of t h e i r mastectomies. " E f f e c t i v e cure for breast cancer," Schain concludes, "demands treatment for the woman's psyche as well as for her body" (p. 49). Assumptions The breast cancer/mastectomy experience consists of a number of s p e c i f i c problems for the patient. These problems are cr i s e s brought on by the patient's i l l n e s s . Recovery means a successful solution to her problems with the help of a counsellor, who treats her psyche while the doctor treats her body. There are two basic problems for a mastectomy patient. Her fundamental problem w i l l be either a fear of dying or fe e l i n g l i k e an emotional or sexual c r i p p l e because of her breast l o s s . A woman who i s not dying of cancer w i l l be primarily concerned about the s o c i a l stigma of her breast l o s s . This problem requires a so l u t i o n , with the counsellor's help. Because of s o c i a l conditioning, a woman w i l l f e e l shame, embarrassment and a loss of worth. She may lose her sense of i d e n t i t y and meaning i n l i f e . However, i f her work involves her mind rather than her body, she may suffer less from a mastectomy than other women do. A woman can come to understand herself and grow to a new sense of meaning i n l i f e through her breast cancer/mastectomy experience. But 37 not a l l women are capable of such growth. A l l of them need help i n solving t h e i r problems r e s u l t i n g from breast cancer and mastectomy. Schain introduces the p o s s i b i l i t y of growth to new meaning very b r i e f l y in this problem-centered view of the mastectomy experience. This growth seems to come about as a woman understands her present problems i n the l i g h t of her past h i s t o r y and influences, and thus decides to change her view of l i f e . Schain does not explore this understanding or t h i s change. Lewis and Bloom (1978) point out that only three of the psychosocial a r t i c l e s they review (they give 110 references) focus on the breast cancer/mastectomy experience from the perspective of the patient. "Although there are multiple p r e s c r i p t i v e papers, there i s l i t t l e systematic documentation of the problems of the breast cancer patient" (p. 12). They c a l l f o r d e s c r i p t i v e studies from the patients' perspective "as a f i r s t stage i n a needs assessment process geared to i d e n t i f y i n g and p r i o r i t i z i n g the target intervention areas for the breast cancer patient" (p. 12). The d e s c r i p t i v e studies they c a l l f o r , however, are s t i l l problem-oriented. To ask "What are the problems that mastectomy patients experience?" i s very d i f f e r e n t from asking "What i s the breast cancer/mastectomy experience? What does i t mean to the patients?" If one looks for problems, aspects of the experience that do not constitute problems are i r r e l e v a n t . See, for example, Weissend's in v e s t i g a t i o n (1975) of thoughts and feelings of women following breast cancer 38 surgery. Using interviews and a de s c r i p t i v e case study approach, Weissend came out with r e s u l t s that indicated the most important problems for the patients she interviewed, what helped them solve their problems and what was s t i l l needed. She did not get a sense of the experience as a whole or i t s meaning for the women. Thus the psychosocial approach to the breast cancer/mastectomy experience i s s t i l l a r e d u c t i o n i s t i c one. An Approach of Cu l t u r a l Anthropology to Breast Cancer and Mastectomy Peters-Golden (1982) investigates the breast cancer experience from the perspective of c u l t u r a l anthropology. Cancer of any kind, she says, has a stigma attached to i t . From the l i t e r a t u r e on cancer she l i s t s the following a t t r i b u t e s of or b e l i e f s about cancer that may contribute to t h i s stigma: (a) Cancer means death. People tend to believe that i t i s always f a t a l and that an i n d i v i d u a l ' s s u r v i v a l i s a fluke, (b) Cancer means a p a r t i c u l a r l y wretched death, involving unbearable pain, (c) Cancer mutilates before i t k i l l s , (d) It does so in a very stealthy way. A person's body harbours an inner enemy, which advances without any warning. (e) Many people believe that cancer i s an "unclean" disease, and they f i n d cancer patients repugnant. Cancer patients may also f e e l t h i s way about themselves, (f) Many people believe that cancer i s contagious, perhaps because i t s cause i s s t i l l a mystery, (g) There i s no guarantee that treatment for cancer w i l l succeed. Even when a person i s thought to have been cured, there i s always the p o s s i b i l i t y 39 of recurrence, (h) The treatment i s regarded as worse than the disease, ( i ) Cancer i s seen as a punishment for a wrongdoing by people who believe i n a "just world" in which human beings get what they deserve, ( j ) The prospect of stigmatization and s o c i a l ostracism contributes to a phobia of cancer, (k) People tend to overestimate the number of deaths from cancer and to underestimate the rate of cure. Peters-Golden says that these a t t r i b u t e s or b e l i e f s , along with uncertainty about the correct thing to say to a cancer patient, contribute to withdrawal or lack of support experienced by cancer patients. She interviewed 100 breast cancer patients and 100 men and women apparently free of disease. 61% of the l a t t e r group indicated that they would or might avoid contact with cancer patients. But only 15% of t h i s group thought that they would be avoided i f they had cancer. "They do not translate the way they behave into the way they themselves might be treated" (p. 489). Discrepancies in the perception of the breast cancer experience between the two groups were p a r t i c u l a r l y s t r i k i n g . The disease-free people saw breast cancer as d i f f e r e n t from other kinds of cancer. They thought i t would be much more embarrassing, and they believed that the breast cancer patient would be primarily concerned about the loss of her breast, her beauty and her femininity. The breast cancer patients, on the other hand, saw themselves as cancer patients; t h e i r primary concern was the p o s s i b i l i t y of recurrence of cancer. They f e l t misunderstood and treated inappropriately by others, and thus they f e l t separated and alone. They f e l t that the support they received from 40 others was conditional on th e i r being "good p a t i e n t s " — c h e e r f u l and o p t i m i s t i c and not discussing t h e i r cancer. "Those who f e l t l e a s t supported also f e l t most stigmatized: they reported being alone more often, avoided by family and f r i e n d s , 'branded' and abnormal" (p. 489). Thus the breast cancer patient bears a double stigma: "She bears both the stigma of cancer and the image of being preoccupied with the loss of her breast" (p. 490). Peter-Golden concludes that " c u l t u r a l values which endow the femal breast with enormous s o c i a l and psychosexual meaning obscure the true issue as i d e n t i f i e d by patients" (p. 490). She says that most studies of the s o c i a l and psychological correlates of breast cancer begin with s i m i l a r bias: "the assumption of primacy of breast l o s s " (p. 490). Assumptions Being a cancer patient means bearing a s o c i a l stigma. A cancer patient i s regarded as being d i f f e r e n t from others i n many negative ways. For example, she i s viewed as si c k , dying, repulsive, contagious e v i l and deserving of punishment. Thus other people tend to avoid her or withhold support. As a r e s u l t , the patient f e e l s abnormal, rejected alienated and lonely. A breast cancer/mastectomy patient bears a double stigma—the stigma of cancer and the stigma of breast l o s s . She i s seen by others as preoccupied with her physical l o s s and i t s meaning i n terms of her femininity. Since her primary concern i s about s u r v i v a l , she f e e l s 41 misunderstood. This lack of understanding adds to her sense of ali e n a t i o n and l o n e l i n e s s . Mastectomy as a Turning Point A few studies move toward meaning. They focus on the inner experience of mastectomy pat i e n t s . Quint (1963), a nurse, studied 21 mastectomy patients for a year through par t i c i p a n t observation i n the hos p i t a l and through intensive periodic interviews a f t e r their return home. Her paper i s f u l l of quotations from the women themselves. She sees mastectomy as a "turning point" (p. 83) in a woman's l i f e a c r i t i c a l experience which can bring about reevaluation and change i n her sense of personal i d e n t i t y . This surgery p r e c i p i t a t e s a period of shock and unexpected events. It not only leaves a change i n bodily appearance, but i t also mars the patient's future with the prospect of shortened l i f e and the p o s s i b i l i t y of a slow and pain f u l death. The r e a l impact of the surgery does not h i t the patient u n t i l afte her return home. She i s surprised at her pain and discomfort, at her sense of exhaustion and fe e l i n g of letdown. "One woman stated the problem c l e a r l y when she said that some persons j u s t do not understand that you aren't the same any more" (p. 89). The patient feels self-conscious about her appearance; she must make decisions about concealing her surgery from others. "An a l l encompassing problem, harder than dealing with the deformity, i s the question, often not said aloud: What i s my future? It i s as though almost anything that happen 42 can tri g g e r the thoughts: Am I going to die? When? How?" (p. 90). There i s an ongoing fear of recurrence. "For these women there was a cen t r a l core of lone l i n e s s " (p. 91), since they had few i f any outlets for talking about t h e i r concerns. In a l a t e r a r t i c l e (1964), Quint expresses the impact of mastectomy with even greater force: "Mastectomy i s a turning point which brings the notion of dying into a woman's personal r e a l i t y " (p. 119). The surgery becomes for her "less a symbol of cure than a warning sign" (p. 119). Even women who healed p h y s i c a l l y continued to f e e l uncertain about th e i r s u r v i v a l . They had a sense of time being foreshortened and began to search for guidelines i n learning how to l i v e with this sense of uncertainty. Quint concludes that a woman's major d i f f i c u l t y following mastectomy i s learning to " l i v e with death" (p. 124). Unlike most researchers, Quint and her co-interviewer, another nurse, p a r t i c i p a t e d i n the i r patients' private worlds. As the women " l e t t h e i r hair down about what i t i s r e a l l y l i k e to l i v e with a mastectomy" (1963, p. 92), the researchers found that they had to pay the price of facing t h e i r own fears and the i r sense of inadequacy, t h e i r desire to run away. It was impossible for them to avoid the thought: "This could happen to me" (1963, P. 92). Assumptions The mastectomy patient i s a subject. Her experience involves much s u f f e r i n g , which continues even af t e r she has recovered p h y s i c a l l y . She 43 i s self-conscious about the change i n her appearance but i s more concerned about the p o s s i b i l i t y of dying from cancer. She i s trying to fin d a way to l i v e her l i f e while being aware of i t s transcience. Her sense of mor t a l i t y brings about a change i n her i d e n t i t y . But she i s lonely because others do not understand her experience and expect her to return to normal. Woods and Earp (1978) say that t h i s i s probably the most complete study of women who have had mastectomies for breast cancer. And yet i t s assumptions and implications seem to have been ignored by most writers on the subject. Meaning i s implied throughout Quint's a r t i c l e s , though i t i s not explored. Her b r i e f d e s c r i p t i o n leaves the reader hungry for more d e t a i l s and more depth of exploration. For example, how does a woman search for guidelines i n learning to l i v e with uncertainty? How does she learn to " l i v e with death" (p. 124)? Mastectomy as Despair Ervin (1973), a surgeon, was also affected by the experiences of hi s patients. He f e l t shattered after losing three mastectomy patients to suicide within a few months. This experience led him to study the problems of 12 of his patients 5 to 10 years after t h e i r surgery through in-depth interviews. He wanted to study the whole person. It made no sense, he said, to study a woman's mastectomy or sexuality "separately from the rest of her" (p. 46). 44 In talking to these women, he found that the experience of mastectomy " i s a devastating one in which the emotional suffering far outweighs the physical" (p. 46). For a mastectomy patient, "the future i s so bleak that she cannot face i t , so she looks backward i n l i f e and regresses emotionally" (p. 46). In summary, he concludes that no woman escapes serious emotional trauma i n connection with a mastectomy. . . . At the worst i s s u i c i d e . The best that can be expected o r d i n a r i l y i s a return to a l e v e l of security that existed p r i o r to the surgery. A mastectomy i s not an enobling experience and any claim to the contrary Is nonsense. Only extremely r a r e l y have I seen a woman put her emotional pieces together and choose a new and more rewarding d i r e c t i o n for her l i f e , but i t does occur." (p. 51) Ervin's key to management i s honesty, r e a l i s t i c hope and planning f o r the future, which he says i s a "key to s u r v i v a l ; one who no longer plans for the future i s soon dead" (p. 53). He sees the l i m i t a t i o n s of his r o l e as doctor. He cannot bear the patient's burdens for her or help her change her l i f e . But he w i l l help her to find a counsellor who can help her to make any changes she wants to make. Few women, he says, accept r e f e r r a l to counsellors. He v a l i d a t e s the patient's f e e l i n g s , t e l l i n g her that anxiety and depression are usual for at le a s t a year. Chronic as opposed to short-term depression he sees as coming from a concern with death and the uncertainty of l i f e . "When women tal k about i t , I t e l l them that i f they would be free they must accept and come to terms with t h i s uncertainty" (p. 61). Some women deal with i t through denial and 45 d i s t r a c t i o n , others through r e l i g i o n and the i r own personal philosophy. Ervin i s convinced that a strong positive attitude helps a woman survive breast cancer as Well as improve the qua l i t y of her l i f e . Assumptions The worst problem for a mastectomy patient i s the i s o l a t i o n and despair she experiences. A mastectomy patient, l i k e a l l human beings, i s free and responsible. She must bear her own burdens and come to terms with the uncertainty of l i f e . She must have a po s i t i v e a t t i t u d e and plan for her future i n order to survive. Yet her suffering i s so t e r r i b l e that at best she w i l l return to her l e v e l of functioning before the surgery. Most women w i l l change t h e i r l i v e s for the better. A mastectomy does not make a woman a better person, a more whole human being. Though women express a need for meaning and seek i t through r e l i g i o n and philosophy, few w i l l find i t . Transcendence i s very rare. One does the best one can in an enormously d i f f i c u l t s i t u a t i o n . Ervin's approach, though humane and compassionate, i s lacking i n hope. The contradiction between the patient's need for a strong p o s i t i v e attitude and his own stark realism (pessimism) i s evident throughout. He himself can see no meaning i n s u f f e r i n g . One simply endures i t as part of the human condition or else one goes under. L i f e i s ultimately t r a g i c . The best att i t u d e i s one of s t o i c acceptance. 46 Dignity consists i n bearing one's burdens without hope of renewal. This theme underlies his paper despite his comments about the importance of hope and looking to the future. It would seem important to know how the rare patient manages to put her l i f e together i n a new d i r e c t i o n . A Cognitive Approach to Breast Cancer Taylor (1983) sees a search for meaning as an important aspect of the breast cancer experience. She presents a theory of cognitive adaptation to l i f e - t h r e a t e n i n g events, based on interviews with 78 breast cancer patients. She argues that when an i n d i v i d u a l has experienced a l i f e - t h r e a t e n i n g event, recovery focuses around three themes: a search for meaning in the experience; an attempt to regain mastery over the event i n p a r t i c u l a r and over one's l i f e i n general; and f i n a l l y , an e f f o r t to enhance one's self-esteem, or f e e l good about oneself despite the setback. The search for meaning involves a need to understand why a c r i s i s occurred and.what i t s impact has been. The person searches for causes and thinks about the implications for her l i f e now. S l i g h t l y over half of the women that Taylor interviewed began to reappraise their l i v e s . The cancer experience gave them a new perspective; they began to reorder t h e i r p r i o r i t i e s and restructure th e i r l i v e s . Some women could not find p o s i t i v e meaning in the experience; instead, they f e l t undermined by i t . "However, when po s i t i v e meaning can be construed from the cancer 47 experience, i t produces s i g n i f i c a n t l y better psychological adjustment" (p. 1163). The sense of mastery involves gaining a f e e l i n g of control over the threatening event i n order to manage i t or keep i t from occurring again. For example, Taylor found many patients who believed that a posi t i v e attitude would prevent a recurrence of cancer. Others changed t h e i r d i e t or t r i e d to control the side e f f e c t s of th e i r treatment through mental imagery. The e f f o r t to restore self-esteem was indicated i n various ways. For example, the patients reported mainly p o s i t i v e changes in t h e i r l i v e s since the cancer. They compared themselves with other women who were not coping as well as they were. They also compared themselves with women who were worse off p h y s i c a l l y but coping very well; thus they could f e e l i n an advantaged p o s i t i o n while gaining i n s p i r a t i o n from models. Their sense of meaning, mastery and self-enhancement and the cognitions on which they were based enabled the patients to make sense of the cancer, to take control of some aspects of th e i r l i v e s , and to change t h e i r views of themselves and t h e i r l i v e s i n ways that were "psychologically b e n e f i c i a l " (p. 1168). Taylor maintains that an in d i v i d u a l ' s e f f o r t s to resolve these three themes rests on her a b i l i t y to form and maintain a set of i l l u s i o n s . By i l l u s i o n s she means "looking at the known facts i n a p a r t i c u l a r l i g h t , because a d i f f e r e n t slant would y i e l d a less p o s i t i v e p i c t u r e , or the b e l i e f s have yet to y i e l d any factual basis of support." (p. 1161). Patients persisted i n th e i r p o s i t i v e b e l i e f s despite lack of 48 evidence for them, and in so doing, they were able to recover s u c c e s s f u l l y . "The e f f e c t i v e i n d i v i d u a l in the face of threat, then, seems to be the one who permits the development of i l l u s i o n s , nurtures those i l l u s i o n s , and i s ultimately restored by those i l l u s i o n s " (p. 1168). Assumptions For a breast cancer patient, successful recovery involves a readjustment to normality, which takes place on the cognitive l e v e l . The person adapts her thinking in a way that w i l l help her to return to normal. She does this in three ways. F i r s t , she t r i e s to find a p o s i t i v e meaning in her experience, to reorder her l i f e in a new way. Secondly, she t r i e s to take control of her health and her l i f e . F i n a l l y , she t r i e s to f e e l good about herself by seeing the personal benefits of her cancer experience and by comparing herself to others who cope less well or who are less fortunate. In order to recover, the breast cancer patient i n t e r p r e t s her experience in the most positive way that she can. This i n t e r p r e t a t i o n has no basis i n r e a l i t y . It i s based on i l l u s i o n s . The patient sees things the way she wants to see them. The meaning she finds i n her experience has no v a l i d i t y , yet i t helps her to recover. Her u n r e a l i s t i c view of he r s e l f and her experience helps her to readjust to normality and to l i v e e f f e c t i v e l y i n the r e a l world. Thus i l l u s i o n s are e s s e n t i a l to recovery from a l i f e - t h r e a t e n i n g i l l n e s s l i k e breast cancer. 49 Taylor sees the importance of the search for meaning, but only i n an external way, as an aid to readjustment. She gets caught up in the usual contradictions involving "adjustment" as well as contradictions involving " i l l u s i o n s . " Her implied stance Is objective as opposed to the s u b j e c t i v i t y of the breast cancer patients, whose experience i s being examined. She makes a sharp d i s t i n c t i o n between t h e i r view of r e a l i t y , based on " i l l u s i o n s , " and the world of f a c t s . Though she stresses the connection between a change in the patient's sense of meaning in l i f e and recovery from breast cancer, t h i s connection i s never r e a l l y explored. Instead, i t i s explained away by the use of the terra " i l l u s i o n s . " Mastectomy as a C r i s i s to Grow On K l e i n (1971), a h o s p i t a l s o c i a l worker, describes mastectomy as "a c r i s i s to grow on" (p. 1660). She describes a c r i s i s as l i m i t e d in time (four to six weeks), c a l l i n g up old losses, and involving tension and anxiety to resolve. The i n d i v i d u a l must a c t i v e l y work on her problem to resolve her c r i s i s . There are c e r t a i n tasks the patient must perform: accepting the breast loss by f u l l y mourning for i t ; reintegrating a self-image worthy of love and the rewards of l i f e ; and beginning "to make peace with the albatross of p o t e n t i a l recurrence" (p. 1662). A patient who achieves these tasks must test new strengths and discover new aspects of h e r s e l f . "Surely, she can never be the same again; she i s a stronger, prouder, more self-assured woman who not only has attained equilibrium but has grown" (p. 1662). 50 The counsellor can help her to express her f e e l i n g s , sort out myth from r e a l i t y (for example, the myth that cancer always k i l l s ) and a n t i c i p a t e the future. She must avoid giving fals e reassurances. She can also help the patient's family to understand the patient's f e e l i n g s and to express t h e i r own. Assumptions A mastectomy patient i s a strong person capable of facing her pain. Her s u f f e r i n g i s r e a l and to be respected; yet she i s capable of moving through i t and beyond i t . She i s active and responsible for her health. She i s t o t a l l y involved in her own healing. Dark feel i n g s are normal; they are part of a person and accepting them i s important for healing. Facing death i s important for l i v i n g . Health i s not adjustment, but rather i n t e g r a t i o n on an i n d i v i d u a l , personal l e v e l . Recovery from breast cancer and mastectomy involves growth toward a new wholeness. Suffering can promote growth. This i s i t s i m p l i c i t meaning. Growth need not take long, but i t does take work. The patient must work hard at the tasks of healing i n order to grow. A l l women must perform the same tasks in order to resolve the c r i s i s of mastectomy. Mourning i s not explained. A stage theory of mourning seems to be assumed by K l e i n . Mourning i s assumed to be a process with a c e r t a i n 51 time l i m i t . The patient must work through dark f e e l i n g s to reach acceptance of her breast l o s s . Stages and Styles i n the Cancer Experience The three stage theories which follow are more general i n t h e i r a p p l i c a t i o n than the previous studies, which focus s p e c i f i c a l l y on the breast cancer/mastectomy experience. Kubler-Ross (1970) describes the experience of terminally i l l cancer patients i n terms of stages; Gullo, Cherico and Shadick (1974) present a stage theory of the experience of cancer patients who recover from th e i r i l l n e s s ; and Francis (1969) gives a stage view of the cancer experience for both recovering and dying pa t i e n t s . Gullo, Cherico and Shadick also describe a number of d i f f e r e n t styles of response to a l i f e - t h r e a t e n i n g i l l n e s s such as cancer. Kubler-Ross (1970) at t r i b u t e s the dehumanization of l i f e and death i n our society to fear and denial of the r e a l i t y of death. She believes i t i s a personal as well as a s o c i a l r e s p o n s i b i l i t y f o r people to become aware of the p o s s i b i l i t y of t h e i r death and the i r f e e l i n g s about i t . A diagnosis of cancer can be a blessing as i t allows a person to face m o r t a l i t y , though he or she may be a l i v e for many years to come. It i s p a r t i c u l a r l y important for doctors to see death as a human experience; i f a doctor denies death, so w i l l the dying patient. 52 Kubler-Ross studied the experience of death and dying by interviewing ho s p i t a l i z e d patients, mostly cancer patients, who were terminally i l l , while doctors, other professionals and students watched through a two-way mirror. She saw these patients as teachers, experts on their experience; thus she t r i e d to approach them with as few preconceptions as possible. Though each person's story was unique, she found that patients shared common reactions to their experience of terminal i l l n e s s . Kubler-Ross describes these reactions as a series of stages. The f i r s t stage i s denial and i s o l a t i o n . At f i r s t the person f e e l s shocked or numb. As the numbness begins to go away, the patient denies the p o s s i b i l i t y of cancer and of death: "No, not me, i t cannot be true" (p. 38). This i s a healthy reaction; i t allows one time to c o l l e c t the necessary strength for dealing with pain. Denial i s generally temporary, but p a r t i a l denial also takes place l a t e r from time to time. "Since i n our unconscious mind we are a l l immortal, i t i s almost inconceivable for us to acknowledge that we too have to face death." (p. 42). Later the patient i s o l a t e s himself or herself from pain by tal k i n g about health and i l l n e s s , mortality and immortality "as i f they were twin brothers permitted to exist side by side" (p. 421). The second stage i s anger, which may be f e l t as rage, envy or resentment of others who do not have to suffer or d i e . "Why me?" the patient asks, angry at God for disrupting his or her l i f e and future plans. Through anger one makes oneself seen and heard by family and hospital s t a f f : "I am a l i v e , don't forget me. You can hear my voice, I 53 am not dead yet!" (p. 52). It i s important that s t a f f react with empathy, respect and acceptance in order to help a person express anger and move past i t . The t h i r d stage i s bargaining. The person asks God for more time to l i v e , i n return for which he or she w i l l l i v e i n a more r e l i g i o u s or a l t r u i s t i c way. The fourth stage i s depression, which accompanies more surgery or further symptoms. At this stage a person experiences "a sense of great l o s s " (p. 85) which may involve the loss of an i n t a c t body, a job, a r o l e , or dreams. Kubler-Ross distinguishes between reactive depression, which follows a l o s s , and preparatory depression or g r i e f which the patient must experience i n order to l e t go of loved objects and people. The grieving patient should not be encouraged to think p o s i t i v e l y but rather to give f u l l vent to sorrow, and the s i l e n t support of a counsellor, perhaps with the touch of a hand, w i l l often help more than words. The f i f t h and f i n a l stage i s acceptance. At t h i s stage the patient " w i l l contemplate his coming end with a c e r t a i n degree of quiet expectation" (p. 112). Acceptance i s neither happiness nor hopeless resignation. " I t i s almost void of f e e l i n g s . It i s as i f the pain had gone, the struggle i s over, and there comes a time for 'the f i n a l rest before the long journey' as one patient phrased i t " (p. 113). At t h i s stage a patient does not want to be s t i r r e d up with any new problems. It i s e s s e n t i a l that others understand t h i s detachment as a natural process rather than as a personal r e j e c t i o n of them or as a lack of 54 courage to f i g h t for l i f e . People want to be l e f t alone to die in peace and dignity; otherwise, they can be thrown into the greatest turmoil. Throughout a l l of these stages hope keeps people going through s u f f e r i n g : " I t i s the f e e l i n g that a l l of this must have some meaning, w i l l pay off eventually i f they can only endure i t for a l i t t l e while longer" (p. 139). When a person no longer expresses hope, he or she i s usually about to die. A l l of the patients in Kubler-Ross's study wanted to talk about t h e i r experience to someone who cared, although most of the doctors were i n i t i a l l y unwilling to give permission for interviews. They gave as excuses the patient's poor physical or emotional health. Some doctors even denied that they had any terminally i l l patients. Only slowly did they come to see the value of the interviews. According to Kubler-Ross, the interviews gave the dying patients a sense of meaning. They were able to overcome their loneliness and to gain a sense of. purpose; in their influence on professionals who would be working with other patients, they were leaving something of themselves behind. In working with a dying patient, a therapist becomes aware of the uniqueness and f i n i t e n e s s of human l i f e ; in a brief l i f e s p a n "most of us create and l i v e a unique biography and weave ourselve into the f a b r i c of human h i s t o r y " (p. 276). Assumptions Awareness of death as a r e a l i t y enables one to l i v e and die in a 55 more human way; one has more empathy for others who are l i v i n g and dying. Thus facing m o r tality i s an e s s e n t i a l human task. Dying i s a natural process. It i s both an i n d i v i d u a l and a universal human experience. It i s more than a physical process. A dying person moves through progressively deeper l e v e l s of f e e l i n g and awareness, which may be described as stages. A person may do th i s alone or need help i n doing so. One also needs time. The experience of dying involves a letting-go of l i f e . A dying person must l e t go of committments to the world and connections with loved ones. This i s a d i f f i c u l t and pain f u l process, as i t i s natural for a l i v i n g person to want to hold on to l i f e . One can l e t go of l i f e only gradually, i n stages. At f i r s t one denies the p o s s i b i l i i t y that one's l i f e can end and i s o l a t e s oneself from fee l i n g s about i l l n e s s and death. At a deeper l e v e l , one asserts aliveness i n the present and one's r i g h t to a meaningful future. One makes one's presence f e l t through anger at others and at God. Holding on tight to the unity of one's l i f e gives one meaning. Later one comes to see t h i s unity as in God's hands, and one asks for rather than demands more time. With increasing awareness of the end comes deeper and more intense f e e l i n g — g r i e f for losses experienced and losses to come. Depression and g r i e f are the same. At the very deepest l e v e l one reaches a state of profound peace, where a l l f e e l i n g s are spent and a l l struggle has ceased. One has l e t go of l i f e and i s ready to die. A person should be allowed to die with d i g n i t y rather than being dragged back to the struggle for l i f e . 56 In order to die in a t r u l y human way, a person must pass through a l l of these stages. One must f u l l y express anger and g r i e f to reach f i n a l acceptance of death. If one experiences dying d i f f e r e n t l y , i t would not be natural; i t would not be human; and i t would not be good. A dying person continues to hope that his or her experience has a meaning. Talking to others about one's experience can give one a sense of meaning. One becomes validated as a person who i s l e t t i n g go of l i f e . One becomes seen as a teacher and a model. Parodoxically, t h i s v a l i d a t i o n connects one with human l i f e in an ongoing way. One gains a kind of immortality. Dying can be an experience of personal f u l f i l l m e n t i f i t involves communication with others who respect the process. In the process of dying, as opposed to l i v i n g , u n i v e r s a l i t y overcomes i n d i v i d u a l d i f f e r e n c e s . What the struggle involves i s a gradual merging of one's unique way of being into the stream of human l i f e . Kubler-Ross's stage theory i s often applied to the experience of other losses, f o r example, the loss of a breast through mastectomy, which i s regarded as a death (Schoenberg & Carr, 1970). The patient i s seen as passing through a l l of the stages to f i n a l acceptance of the loss ( K l e i n , 1971). Gullo, Cherico and Shadick (1974) studied the experience of 5 cancer patients, including a mastectomy patient, who were not terminally 57 i l l . They had a series of interviews with each patient, beginning at the time of diagnosis and ending 6 months after h o s p i t a l i z a t i o n . Each patient received a favourable prognosis. The authors describe 7 stages i n the patients' experience of cancer. Stage 1 i s shock. At f i r s t the patients f e l t overwhelmed and incredulous: "How could i t happen to me?" (p. 57). They emerged from shock to recognize the seriousness of t h e i r i l l n e s s but tended to avoid or deny the p o s s i b i l i t y of dying. Stage 2 i s anger. The patients asked "Why me?" Some were more b i t t e r than others. Stage 3 i s g r i e f and a n t i c i p a t o r y g r i e f , experienced as the patients were preparing for surgery. They a l l faced the prospect of death and mourned for present and future losses, including the loss of the i l l u s i o n that cancer and death happen only to others. They f e l t profoundly lonely and vulnerable. Stage 4 i s bargaining or "promissory note" behavior. On the day and e s p e c i a l l y the night before surgery, even those who were not formally r e l i g i o u s prayed for strength. Three patients promised God and the others promised t h e i r f a m i l i e s or themselves that they would make changes in t h e i r l i v e s i f they were cured. Stage 5 i s uncertainty. Between the surgery and the pathology report the patients experienced much anxiety and a lack of control over t h e i r l i v e s . They desperately sought information from the hospital s t a f f . 58 Stage 6 i s renewal and reb u i l d i n g . Following the favourable prognosis, 4 patients renewed their determination to l i v e and their a s p i r a t i o n s . They made plans to resume work, s o c i a l l i f e and other committments. The f i f t h patient, who had had cancer of the uterus, refused to believe her prognosis. Instead of experiencing renewal, she continued to grieve: "How can you be happy when you've gone through something l i k e t h i s ? . . . I j u s t don't care any more. What i s there to l i v e for when you have to l i v e l i k e t h i s " (p. 61)? I t seemed to the authors that she had regressed to Stage 3. Stage 7 i s integr a t i o n . "The a b i l i t y to integrate- the experience appears to be the l a s t stage i n a patient who recovers from l i f e - t h r e a t e n i n g i l l n e s s . I t appears to enable the i n d i v i d u a l to p r o f i t from the experience, and, i n some cases, to enrich the q u a l i t y of his l i f e " (p. 63). The authors sought evidence of inte g r a t i o n during the 6 months a f t e r h o s p i t a l i z a t i o n . The only patient who could find no personal changes was the one who was s t i l l angry and gr i e v i n g . "She had apparently s e t t l e d into a morbid pattern of g r i e f which has been described c l i n i c a l l y as 'chronic g r i e f " (p. 63). "Just as g r i e f must be endured, experienced and expressed i n a l l i t s d i s t r e s s and pain (Linderaann, 1944), the g r i e f and trauma of l i f e - t h r e a t e n i n g i l l n e s s must follow a s i m i l a r pattern. The patient who f a i l e d to develop these modes of expression encountered severe problems of adjustment" (p. 63). Unlike Kubler-Ross's patients, these people were confronting only the p o s s i b i l i t y of death rather than dying. Negative information was , followed rather quickly by po s i t i v e information about the p o s s i b i l i t y 59 of cure. Immediate surgery forced them to confront the r e a l i t y of their s i t u a t i o n , and thus they had l i t t l e time to get depressed. The period of bargaining was very short because the patients were not desperate, simply uncertain. In this way the authors explain some of the diffe r e n c e s between the stages they describe and those described by Kubler-Ross. I f , however, the patients had received an unfavorable prognosis, the authors suggest that the stages described by Kubler-Ross might have replaced renewal and in t e g r a t i o n . The patients would no longer be life- t h r e a t e n e d but in the process of dying. Despite the commonalities i n regard to stages, each person i n the study kept a unique attitude to his or her i l l n e s s ; t h i s attitude or "predominant response s t y l e " (p. 67) seemed to endure throughout the stages. Each patient i l l u s t r a t e s a d i f f e r e n t response s t y l e , as follows: The death-acceptor i s a r e a l i s t . Such a person accepts the seriousness of h i s or her i l l n e s s and w i l l s t r i v e for health. However, death i s accepted i f necessary. The person does not seek reasons for the i l l n e s s but makes whatever changes are possible and accepts what cannot be changed. "You fig h t when i t w i l l help. You don't fight when i t serves no purpose but to prolong s u f f e r i n g " (p. 68). The death-denier i s c e r t a i n of recovery despite the seriousness of the i l l n e s s . Such a person can accept the p o s s i b i l i t y of death i n t e l l e c t u a l l y but not personally: "I've always sensed that I would make i t . . . I'm not the ordinary guy" (p. 69). 60 The death-submitter i s a pessimist, who f e e l s hopeless and abandoned, fated to an in e v i t a b l e doom. Convinced that he or she w i l l die despite a good prognosis, such a person may refuse medication: "There's no hope when i t ' s cancer. I've never had any breaks and now t h i s " (p. 70). The death-defier i s a "cold r e a l i s t " (p. 71) who faces the p o s s i b i l i t y of death, even with a good prognosis. Yet he or she w i l l never give up the fig h t for l i f e . Even i f medical treatment proves f u t i l e , such a person w i l l continue the struggle for s u r v i v a l i n order to preserve a sense of freedom and di g n i t y : "You learn never to give up; that you've got to be strong" (p. 72). The death-defier i n this study keeps thinking of Camus' Myth of Sisyphus and relates i t to his own s i t u a t i o n : The guy knows his e f f o r t s are doomed but he continues and in so doing he affirms his own existence and freedom i n the face of the absurdity of l i f e . This i s the way I f e l t I would want to die i f anything goes wrong. Of course, my e f f o r t s may not help and they may even prolong the ordeal, but they would matter to me, and that's the one thing I would have l e f t i n the face of death, (p. 72) The death-transcender sees i l l n e s s and death as part of the plan of creation; he or she believes that l i f e continues after death ei t h e r through one's family or through the immortality of the soul. For such a person, death i s "the l o g i c a l completion of his e f f o r t s i n th i s l i f e " (p. 73). The death-transcender i n this study was the mastectomy 61 patie n t . While experiencing g r i e f and anticipatory g r i e f , she was able to maintain her perspective: "At times l i k e t h i s i t i s very hard to face l i f e . You've l o s t a l o t and may s t i l l lose everything else you have. I have to keep on reminding myself that in God's plan t h i s experience has some meaning" (p. 73). She did not f e e l passive i n regard to her destiny: "This doesn't mean we just s i t back; i t takes courage to face up to the w i l l of God and to l i v e i t " (p. 73). Ci t i n g Bruner (1966) on the three phenomena cen t r a l to the behavior of a life-threatened person—coping, denial and i n t e g r i t y of function-i n g — t h e authors describe the death-denier's style as defending. The person i s trying to escape from an unpleasant r e a l i t y f o r which there i s no s o l u t i o n , while maintaining i n t e g r i t y of functioning, or a consistency with his or her most valued l i f e e nterprises. The death-acceptor, on the other hand, has a coping s t y l e ; he or she respects the r e a l i t i e s of problems encountered, while maintaining i n t e g r i t y of functioning. The death-submitter has a passive s t y l e ; such a person does not respect the r e a l i t i e s of the s i t u a t i o n and v i o l a t e s i n t e g r i t y of functioning. The death-submitter i s behaving i n a dysfunctional way. The death-defier and death-transcender accept the p o s s i b i l i i t y of death on the personal l e v e l but tend to avoid the pain of t h i s r e a l i t y through i n t e l l e c t u a l i z a t i o n i n the case of the death-transcender, and over-compensation in that of the death-defier. These behavior s t y l e s e n t a i l p r i m a r i l y a combination of coping and defense, (p. 76) 62 Assumptions The experience of cancer i s d i f f e r e n t for a person who gets a good prognosis after surgery than for a person who gets an unfavorable prognosis. In the f i r s t case, the person experiences merely a threat to l i f e ; in the second, one experiences the process of dying. The experience of a l i f e - t h r e a t e n i n g i l l n e s s l i k e cancer i s a process which can be described as a series of stages. U n t i l the time of prognosis, the person experiences a temporary l e t t i n g - g o of l i f e ; a fter prognosis, one reconnects with l i f e and integrates one's experience. A brush with death may improve a person's l i f e . A cancer patient with a good prognosis should be able to make p o s i t i v e changes within six months afte r h o s p i t a l i z a t i o n . One should be able to renew one's l i f e and integrate one's experience with mortality within this time l i m i t . Renewal r e a l l y means a return to the hopes and committments one had before surgery. Integration and adjustment are r e a l l y the same. A l l patients must f u l l y express their anger, g r i e f and uncertainty in order to reach integration or adjustment. Stages of experience in a l i f e - t h r e a t e n i n g i l l n e s s are c l o s e l y linked with aspects of treatment such as diagnosis, preparation for surgery, surgery, waiting for pathology reports and release from h o s p i t a l . Anger and g r i e f are normally expressed before surgery; uncertainty i s normally limited to the time between surgery and prognosis. A patient who remains uncertain af t e r a favourable prognosis or who continues to grieve for losses and anticipated losses i s not behaving normally. A person who i s s t i l l 63 grieving six months aft e r h o s p i t a l i z a t i o n i s stuck i n a state of chronic g r i e f and has a severe problem of adjustment. Despair and chronic g r i e f are the same. Despair i s an i n a b i l i t y to resolve one's sense of loss or pot e n t i a l l o s s . The meaning of the loss i s i r r e l e v a n t . The proper reaction to a favorable prognosis i s complex. The person normally believes the doctor's report and f e e l s o p t i m i s t i c about recovery. Yet i t i s r e a l i s t i c to be prepared for the p o s s i b i l i t y of death and to accept death with equanimity. One does not search for the meaning of one's i l l n e s s as i t serves no purpose to do so. Improvement of one's l i f e takes place without a search for meaning. A cancer patient who submits to death as ine v i t a b l e i s behaving i n an u n r e a l i s t i c and dysfunctional way. But a person who i s cer t a i n of recovery from cancer after a good prognosis i s unable to face the r e a l i t y of death. The person who w i l l fight for su r v i v a l in order to preserve d i g n i t y and freedom and the person who transcends death by seeing i t as part of a divine plan are both avoiding the pain of death, the f i r s t through overcompensation and the second through i n t e l l e c t u a l i z a t i o n . Seeing a meaning in death or in the struggle for l i f e i s an evasion of r e a l i t y . Death i s nothing more than an end to l i f e , and courage i s simply i r r e l e v a n t . One does not influence the course of one's i l l n e s s by the at t i t u d e one takes toward i t . According to Francis (1969), cancer patients move through the same 64 natural and predictable stages as people with any other i l l n e s s . The f i r s t stage i s denial of the i l l n e s s or i t s seriousness; the second i s overt anxiety; the t h i r d i s r e g r e s s i o n — c l i n g i n g dependence on family and medical s t a f f ; and the fourth i s depression, shown by such symptoms as anorexia, insomnia, lowered self-esteem and general loss of i n t e r e s t in family, friends and a c t i v i t i e s . The experience of depression i s "a f e e l i n g of dejection and sadness of a pathologic degree" (p. 1679). Grief i s less deep and p a t h o l o g i c Both are reactions to a loss or threatened l o s s . The mechanism which channels anxiety into depression i s usually thought of as i n t r o j e c t i o n , whereby the meaning a person or thing has to an i n d i v i d u a l i s taken into the s e l f and becomes part of the person. Thus i f the diagnosis of cancer or i t s treatment means s u f f e r i n g , disfigurement, pain, long h o s p i t a l i z a t i o n , separation from loved ones, or death, even though these things have not yet occurred, that meaning becomes part of the i n d i v i d u a l . Because of the nature of such thoughts now turned inward, the person becomes depressed, (pp. 1679-1680) After passing through these natural stages, "the emotionally healthy person begins to achieve r e a l i s t i c adaptation to the i l l n e s s and to any l i m i t a t i o n s imposed by i t " (pp. 1679-1680). R e a l i s t i c adaptation means f e e l i n g good about oneself and others, doing whatever ordinary tasks of l i v i n g one i s p h y s i c a l l y capable of doing, and seeing the cancer not as a death warrant, but only as a chronic disease. If the cancer spreads, one i s not a f r a i d to d i e . Having s u c c e s s f u l l y achieved 65 the l i f e tasks described by Erikson (1963), one has maturity and ego i n t e g r i t y . One can look back on one's l i f e and think "It has been good" (p. 1680). People who are very much a f r a i d to die have unfinished business i n their l i v e s . They are less than healthy people. A person who i s less than healthy emotionally i s l i k e l y to remain stuck i n one of the four stages. Medical s t a f f can help a person move through the stages by taking a r e a l i s t i c and hopeful attitude to his or her i l l n e s s . Assumptions The experience of i l l n e s s i s the same, whether or not a person's l i f e i s threatened. A l l patients experience de n i a l , overt anxiety, regression and depression. An emotionally healthy person, with help from medical s t a f f , w i l l move through the stages to a r e a l i s t i c adaptation to his or her i l l n e s s . Depression i s a pathologic degree of sadness, but i t i s a normal response to i l l n e s s i f a person does not get stuck i n i t . Depression i s experienced when the meaning of losses or anticipated losses become part of the s e l f . In other words, the person experiences a p a r t i a l loss of s e l f . The loss must be resolved through expressing the sadness. Cancer patients who have f u l l y mourned for their losses can l i v e without the thought of death. If they have no unfinished business i n their l i v e s , they can accept death when necessary. M o r t a l i t y does not need to be of s i g n i f i c a n c e to them. If they are making a r e a l i s t i c 66 adaptation to their i l l n e s s , mortality w i l l not be of si g n i f i c a n c e to them. Thus Francis's view d i f f e r s profoundly from that of Kubler-Ross. Summary of Assumptions of Stage Theorists A l l of the stage theorists view cancer as a natural process c o n s i s t i n g of a series of c l e a r l y defined stages, though they d i f f e r i n thei r descriptions of these stages. Each person must move through a l l of these stages in order to accept death or the loss of a body part or to adjust to ongoing l i f e . In order to move through the stages, the person must f u l l y express c e r t a i n feelings at certain times. Though the theorists d i f f e r i n regard to the s p e c i f i c feelings that require expression, they a l l agree that g r i e f or profound sadness must be expressed. This sadness i s connected with the person's sense of l o s s . The person must give f u l l vent to sadness i n order to move beyond this sense of l o s s . Whether a cancer patient l i v e s or dies, what i s most important for his or her well-being i s f u l l expression of f e e l i n g , e s p e c i a l l y sadness. This i s normal, human and good. I t i s the v e n t i l a t i o n of f e e l i n g that frees a person to move forward into l i f e or death. The cancer patient i s an emotional being. Kubler-Ross believes that a sense of meaning i s important for the dying patient. This meaning involves a sense of connection with ongoing human l i f e through making a contribution in some way. Gullo, Cherico and Shadick see meaning as i r r e l e v a n t to the recovery of cancer 67 p a t i e n t s . In the i r view, a concern with meaning i s an evasion of r e a l i t y . What matters i s the p r a c t i c a l improvement one makes i n one's l i f e i n a short time. In Francis's view, a sense of accomplishment and f u l f i l l m e n t i s important for the dying cancer patient. But the person who recovers from cancer simply needs to adjust to ordinary l i f e in a r e a l i s t i c way. Summary and C r i t i q u e of Assumptions on Breast Cancer and Mastectomy Most of the l i t e r a t u r e that I have reviewed approaches the breast cancer/mastectomy experience in an external or p a r t i a l way. The meaning of the experience for the patient i s ignored, imposed from without, or implied but not explored. The medical approach sees mastectomy as s u r g i c a l treatment for a physical disease. Recovery from breast cancer and mastectomy i s ph y s i c a l , though there i s no guaranteed cure for breast cancer. The patient i s seen as a physical being, who needs medical checkups and medical treatment to keep her healthy. Health means freedom from disease. The r e h a b i l i t a t i o n approach sees recovery as a return to normal i n four areas-—appearance, arm functioning, work, and emotional l i f e . The patient returns as f u l l y as possible to the way she looked, behaved and f e l t before her cancer surgery. She i s regarded as a s o c i a l being. Health means being an a t t r a c t i v e , emotionally-stable, productive member of society, with a minimal difference from others. 68 The view of Reach to Recovery, presented by Lasser (1972), makes the underlying philosophy of the r e h a b i l i t a t i o n approach e x p l i c i t . According to Lasser, recovery means remaining unchanged as a person. A woman has recovered i f she has been able to put the breast cancer/mastectomy experience behind her and move into the future as though nothing important has happened to her. Health means growing without changing. The p s y c h i a t r i c approach, presented by Holland and Mastrovito (1980), regards breast cancer and mastectomy as an experience of s t r e s s , which varies in i n t e n s i t y from one woman to another. Extreme stress reactions are ps y c h i a t r i c syndromes, which include anxiety, depression, g r i e f and despair. Recovery means overcoming stress and returning to normal. Health means freedom from s u f f e r i n g caused by s t r e s s . The patient i s regarded as a physi c a l , s o c i a l and emotional being, whose emotions need to be controlled i n various ways so that she w i l l not s u f f e r . The stage the o r i s t s also see the cancer patient as an emotional being. In contrast to the p s y c h i a t r i c view, however, they believe that she must f u l l y express her f e e l i n g s , e s p e c i a l l y sadness, i n order to reach acceptance of death or adjustment to l i f e . For Kubler-Ross (1970), hope for meaning i s i m p l i c i t i n the patient's endurance of suf f e r i n g u n t i l she accepts the i n e v i t a b i l i t y of death. For the other stage t h e o r i s t s (Francis, 1969; Gullo et a l . , 1974), the meaning of suf f e r i n g i s i r r e l e v a n t . Recovery means a re s o l u t i o n of g r i e f through f u l l expression of f e e l i n g s , followed by a return to normal l i f e . 69 The psychosocial approach, presented by Schain (1976), regards the breast cancer/mastectomy experience as a number of problems requiring s o l u t i o n s , e s p e c i a l l y the problem posed by the s o c i a l stigma of the breast l o s s . The patient i s seen as a psychological and s o c i a l being. Recovery means a successful solution to psychological and s o c i a l problems. For some women, recovery can also include an understanding of themselves and growth to a new sense of meaning in l i f e . However, t h i s growth i s not explored. The d i s t i n c t i o n between women capable of insight and growth and women capable only of problem-solving i s not explained. The cognitive approach, presented by Taylor (1983), sees a search for meaning as an important aspect of the breast .cancer patient's experience. Through t h i s search, the patient gains a new perspective on l i f e and begins to reorder her p r i o r i t i e s . The discovery of pos i t i v e meaning in her experience i s highly conducive to her recovery, which means a readjustment to normality. According to Taylor, the patient's sense of meaning i s based on i l l u s i o n s or p o s i t i v e b e l i e f s , rather than on any fa c t u a l view of her s i t u a t i o n . Thus meaning i s explained away rather than explored. The patient i s regarded as a thinking s o c i a l being. But her thinking, l i k e her behavior, i s seen only from the outside. Her view of r e a l i t y i s i n v a l i d a t e d , though i t s usefulness for the purpose of readjustment i s appreciated. The psychoanalytic approach, presented by Renneker and Cutler (1952), sees breast cancer and mastectomy as separate experiences. Mastectomy has a meaning, which i s the same for a l l women. The loss of 70 the breast means an end to sexuality and motherhood. For an older woman, this meaning i s not s i g n i f i c a n t ; she focuses on the cancer as a threat to her l i f e . Recovery for a younger woman means adjustment to her breast l o s s . She adjusts by mourning for the loss of her breast and her femininity. For the older woman, recovery means physical recovery from surgery and cancer. She recovers by f i g h t i n g for her l i f e . The psychoanalytic approach views the patient as a b i o l o g i c a l and s o c i a l being. Normal meanings are imposed according to her age and her a b i l i t y to bear c h i l d r e n . Personal meanings are i r r e l e v a n t and abnormal. The assumptions of Ray's study (1977), point up the contradictions i m p l i c i t i n most of the preceding approaches, which equate recovery with adjustment, readjustment, or return to normality. Normality seems to mean both being the way one was before the cancer surgery and being similar to others. In the f i r s t case, normality means freedom from pathology (the medical view of healt h ) . In the second, i t means average or t y p i c a l . The f i r s t view i s absolute, the second r e l a t i v e . Most of the l i t e r a t u r e on breast cancer and mastectomy uses normality as a standard of recovery without trying to c l a r i f y i t s meaning. With ei t h e r sense of the word, the meaning of the experience for the i n d i v i d u a l i s ignored. A few studies attempt to describe the patient's inner experience. Quint (1963, 1964) sees mastectomy as a turning-point i n a woman's l i f e ; the patient faces her mortality and begins to see the r e a l i t y of death as part of her l i f e . Recovery means learning to l i v e with this r e a l i t y . In the process the patient undergoes a change i n her sense of 71 personal i d e n t i t y , which i s not understood by others, who expect her to return to normal. Thus her experience i s a very lonely one. Quint implies that this change i s meaningful to the patient, but meaning i s not explored. Ervin (1973) views breast cancer and mastectomy as an experience of i s o l a t i o n and despair. The patient i s a free and responsible person who can learn to bear her suffering with d i g n i t y . But there i s no meaning in her s u f f e r i n g . Growth through the experience i s very rare. O r d i n a r i l y the best that can be expected i s a return to her l e v e l of functioning before the surgery. In this way Ervin d i f f e r s from most of the other approaches, which view a return to the past as an adjustment to normality. Ervin sees i t as a tragic s i t u a t i o n . For E r v i n , recovery means accepting the uncertainty of l i f e and trying to plan for the future, despite i t s bleakness. The approach of c u l t u r a l anthropology, presented by Peters-Golden (1982), sees the experience of the breast cancer patient as d i f f e r e n t from the views others have of t h i s experience. As a r e s u l t of socially-imposed meanings of cancer and mastectomy, the patient f e e l s abnormal, rejected, alienated, lonely and misunderstood. However, she i s a strong person who maintains her own perceptions about r e a l i t y despite lack of support from others. Peters-Golden does not explore t h i s personal r e a l i t y of the breast cancer patient or any meanings that might be d i f f e r e n t from s o c i a l meanings. Like Quint and E r v i n , she sees the p o s s i b i l i t y of recurrence as a primary concern for the patient, who must l i v e with t h i s uncertainty. ,72 K l e i n (1971) sees mastectomy as a c r i s i s that can promote growth. Recovery means growing through s u f f e r i n g toward a new integration. I t involves f u l l mourning for the breast, acceptance of the p o s s i b i l i t y of recurrence and the development of a sense of self-worth. K l e i n accepts a stage view of mourning. The patient i s seen as a strong, responsible person capable of facing s u f f e r i n g and moving beyond i t to a new l i f e . Meaning i s implied, but i t i s not explored by K l e i n . The tasks of healing are defined for a l l patients, as i s the time i n which healing should be accomplished. In summary, the e x i s t i n g l i t e r a t u r e on breast cancer and mastectomy i s f i l l e d with contradictions. At best, i t indicates an incomplete understanding of the experience of the patient. The few studies that attempt to give an i n t e r n a l view of the patient's experience either r e j e c t the p o s s i b i l i t y that meaning can be found i n the experience or else imply the p o s s i b i l i t y of meaning without exploring i t . Thus there seems to be a need for a d i f f e r e n t kind of study of the breast cancer/mastectomy experience—a study that approaches the experience from the perspective of the patient and seeks to understand i t s meaning. The Meaning of I l l n e s s , Suffering and Healing In the second part of my l i t e r a t u r e review, I present some approaches to the meaning of i l l n e s s , s u f f e r i n g and healing that are congenial with my own experience of breast cancer and mastectomy. By 73 e x p l i c a t i n g t h e i r assumptions, I am in a better p o s i t i o n to c l a r i f y my own. The authors that I have selected are concerned with what i t means for a human being to experience s u f f e r i n g , i l l n e s s and healing. Most of these writers are also concerned with the meaning of human l i f e and the meaning of death. Although none of them deals e x p l i c i t l y with the breast cancer/mastectomy experience, some of them write about the meaning of the cancer experience i n general. This section on meaning i s roughly divided into four parts. In the f i r s t , writers such as Cassell (1976) and Comaroff (1982) d i s t i n g u i s h i l l n e s s from disease and healing from curing. In the second, Sanford (1977) and Hillman (1978) present a Jungian approach to the meaning of i l l n e s s , s u f fering and healing. In the t h i r d , May (1953) and Frank! (1962, 1963, 1969) present an existential-humanistic approach to the meaning of i l l n e s s and s u f f e r i n g . F i n a l l y , LeShan (1964, 1977) and the Simontons (1980) discuss the meaning of suf f e r i n g and healing i n the cancer experience. The Experience of I l l n e s s and Healing C a s s e l l (1976) explores the meaning of his work as a doctor. In our society doctors are trained to look for causes and provide cures for diseases. Through his own work Cassell r e a l i z e d that there was a diff e r e n c e between a disease or disturbance of the body and the phenomenon of i l l n e s s , which i s what a patient experiences. He also r e a l i z e d that a patient needs to be healed of i l l n e s s as well as cured of disease. 74 C a s s e l l describes the experience of i l l n e s s for the hospitalized ( patient. F i r s t , the patient feels disconnected from the ordinary everyday world of others. "In health we know we are a l i v e by our connectedness to the world. . . . We are connected to the world by numerous physical phenomena—touch, sight, balance, smell, taste, hearing—and also by our i n t e r e s t i n things and i n others, by our feelin g s for people, by what we do and how necessary we are, by our place in the s o c i a l scheme. . . . In i l l n e s s , however s l i g h t , some of these contacts are l o s t " (p. 27). As i l l n e s s deepens, the patient begins to build his or her own world, an inner world or a world shared with other sick people. Secondly, the sick person loses the sense of personal i n d e s t r u c t i b i l i t y that healthy people take for granted. "We need to soar above our bodies, our everyday thoughts, and our s o c i a l connections to be whole and to grow. With the loss of the sense of omnipotence, this a b i l i t y disappears and we are c r i p p l e d " (p. 34). Th i r d l y , a person who i s i l l can no longer r e l y upon reason. The disease i s beyond our control, and the si g n i f i c a n c e of events i s beyond our knowledge. We lose the sense of omniscience we have when we are healthy. F i n a l l y , when we are i l l we lose our sense of control over our world, ourselves and our own existence. A l l the other aspects of i l l n e s s r e i n f o r c e this sense of loss of co n t r o l . We want to know the meaning of our i l l n e s s . In seeking to understand what i s happening to us, we are looking for answers that are 75 very d i f f e r e n t from those provided by medical science. Cassell traces the h i s t o r y of Western medicine back to Hippocrates, who introduced an objective, s c i e n t i f i c as opposed to a magical approach to the patient's i l l n e s s . "In tracing the hi s t o r y of medicine, we are tracing the his t o r y of Western culture's attempt to understand the questions i l l n e s s r a i s e s i n the sick person: What i s wrong with me? Why did i t happen to me? What i s going to happen because of t h i s thing that has gone wrong" (p. 56)? These questions, Ca s s e l l says, have two classes of answers, one wide and one narrow. The narrow class of answers are s p e c i f i c to the p a r t i c u l a r problem, for example, a fractured ankle. The wider cl a s s "has to do with fate and the r e l a t i o n of man to his universe" (p. 57). Hippocrates did not inv a l i d a t e the wider questions; he simply introduced a systematic method of answering the narrower ones, f o r example: What i s wrong with the ankle? What should be done for i t ? What w i l l happen to i t ? Since the time of Descartes, science has been dedicated to measuring the f i n i t e , and a l l of the questions asked about i l l n e s s have been determined by that approach. The wider questions have been ignored as i r r e l e v a n t , except by the sick person, who wants to know what the i l l n e s s means i n r e l a t i o n to his or her l i f e and place in the universe. A s c i e n t i f i c d e s c r i p t i o n of i l l n e s s i s incomplete, the same way a de s c r i p t i o n of a rose i n terms of inches i s incomplete. A complete picture of i l l n e s s involves personal phenomena as well as an objective d e s c r i p t i o n ; i t involves the meaning of i l l n e s s to the person. Thus s c i e n t i f i c and humanistic thought need not be in opposition; they can supplement each other. 76 A sick person needs to be healed of his or her illness as well as cured of disease. Healing means restoring the person to the world of the healthy. For some diseases, like cancer, a cure is impossible, so that healing becomes of paramount importance. What does i t mean to be healthy? "Health, at least in part, incorporates the abi l i t y of the self to soar, allied with, but unhampered by and unaware of, the confines of the body—unaware at least consciously, for somewhere within, there must be, in true health, a unity between self and body. The healthy have confidence in themselves and in their bodies, a confidence built on experience and fed by the sense of invulnerability" (p. 125). Cassell compares the movement from illness to health to steps in growth. Each of us has an inner creative urge, which, together with the pull of society, keeps us growing. This inner urge is what Jung calls "individuation." As we grow, we become disconnected from our past self and experience a loss of comfort. "Each step forward involves a disconnection with the way we were and thus a loss of the self that was. Consequently, each step forward involves anxiety and the reawakening of the anxiety of the previous steps forward in growth" (p. 126). The tasks of healing go beyond the physician's function. They take a whole lifetime: "Life i s the problem—providing meaning and fulfillment, depth and happiness in l i f e " (p. 182). 77 Assumptions I l l n e s s i s the experience of a person. To be i l l means to f e e l disconnected from the world one o r d i n a r i l y shares with others; to lose one's sense of i n d e s t r u c t i b i l i t y , the security of reason, and a sense of control over oneself and one's l i f e . A sick person seeks to understand the meaning of h i s or her i l l n e s s i n a way that goes beyond any answers science can give. They have to do with fate, one's r e l a t i o n to the universe and the meaning of human l i f e . One needs to be healed of i l l n e s s as well as cured of disease. Healing i s a movement from i l l n e s s to health. It resembles growth. As i n growth, one feels disconnected from one's past sense of s e l f i n moving toward a new sense of s e l f . Health i s a complex experience. It involves a connection with our bodies, with other people, and with ordinary everyday r e a l i t y . It also involves a sense of i n v u l n e r a b i l i t y and a confidence i n our a b i l i t y to understand our experience through reason and to control ourselves, our l i v e s and our world. Yet health also involves the a b i l i t y to transcend a l l of our ordinary connections with physical and s o c i a l r e a l i t y and our ordinary thinking. We need to experience a power that transcends a l l such l i m i t a t i o n s i n order to grow. Health means continued growth rather than s t a b i l i t y . Being healthy thus involves the sense of disconnection and anxiety, the loss of the sense of sec u r i t y that accompanies growth. 78 Being healthy seems to i n c l u d e some aspects of the experience of i l l n e s s . I t i n v o l v e s a search f o r meaning and f u l f i l l m e n t i n l i f e . S t r i v i n g f o r h e a l t h takes a l i f e t i m e . C a s s e l l gives some i n d i c a t i o n of the complexity of the experience of h e a l t h and i l l n e s s . There does not seem to be any sharp separation between them. While on the surface they seem l i k e o p p o s i tes, when one looks more c l o s e l y , t h i s does not seem to be the case. C a s s e l l ' s account i s much l e s s c l e a r than those of the w r i t e r s who f o l l o w . Camaroff (1982) discusses the experience of the s e r i o u s l y i l l person i n Western c u l t u r e . The experience of i l l n e s s i s an experience of c o n t r a d i c t i o n . One i s confronted with the u n i v e r s a l paradoxes of human e x i s t e n c e — t h e f a c t that one i s both a mind and a body, a subject and an o b j e c t , a n a t u r a l and a s o c i a l being. In i l l n e s s these aspects of oneself become opposed; one i s t h r u s t i n t o disharmony and s t r i v e s to r e s t o r e harmony by r e s o l v i n g the c o n t r a d i c t i o n s w i t h i n oneself and between oneself and the world. Shands (1966), w r i t i n g s p e c i f i c a l l y about cancer, describes the impact of the diagnosis as the d e s t r u c t i o n of the u n i t y of one's experience: "The emotional impact could almost be described as a sudden amputation of the f u t u r e ; the consequence i s a major a l i e n a t i o n from the s e l f . The present-future u n i t y - i n - d u a l i t y i s disrupted i n r a d i c a l f a s h i o n " (p. 888). 79 In p r i m i t i v e s o c i e t i e s , Comaroff says, the healer t r i e s to uncover the meaning of i l l n e s s and to reconcile the person's experience with c u l t u r a l b e l i e f s about r e a l i t y . But i n our culture medical science sees people as physical objects; t h e i r s u b j e c t i v i t y i s i r r e l e v a n t . Thus i t emphasizes sic k people's a l i e n a t i o n from themselves. Our culture i s based on the very dualism that the person experiencing i l l n e s s needs to transcend in order to become w e l l . In a study of the experience of childhood leukemia, Comaroff and Maguire (1981) found that the experience of uncertainty or ambiguity and the search for meaning were the c h a r a c t e r i s t i c features of the impact of the disease on sufferers and t h e i r f a m i l i e s . The search persisted as long as the i l l n e s s l a s t e d . Parents t r i e d to bring the diagnosis of leukemia into r e l a t i o n with medical f a c t s , the experience of others, t h e i r own biographies and t h e i r view of l i f e . They wanted to know f i r s t , the b i o l o g i c a l and medical cause (What happened to the c h i l d ' s body?) and secondly, the more ultimate cause (Why us? Why now?). They wanted to bring c l i n i c a l knowledge into r e l a t i o n with t h e i r everyday experience. They raised questions about the meaning of s u r v i v a l and established d e f i n i t i o n s of health and well-being. They began to question c u l t u r a l assumptions about the nature of r e a l i t y and the nature of human c o n t r o l . The authors point that the gap between the s u f f e r e r ' s experience and c l i n i c a l d e f i n i t i o n s of i l l n e s s i s due to the contradictions on which medical science i t s e l f i s based: 80 The important implications of intervention in malignant disease cannot merely be defined as 'psychological maladjustments' or f a i l u r e to 'cope' on the part of a few unfortunate v i c t i m s . Neither can they be delegated to agents of care a n c i l l a r y to somatic medicine, such as p s y c h i a t r i s t s or s o c i a l workers, who are expected to a s s i s t s u f f e r e r s in adapting to c l i n i c a l l y defined r e a l i t i e s . For i t i s p r e c i s e l y these r e a l i t i e s which such i l l n e s s experience c a l l s into doubt. And f a i l u r e to recognize t h i s merely aggravates the victim's dilemma, (p. 122) Assumptions The experience of cancer i s an experience of uncertainty or ambiguity. Any serious i l l n e s s i s an experience of con t r a d i c t i o n , a condition in which the various aspects of one's being-in-the-world are opposed. The diagnosis of cancer shatters one's sense of s e l f and one's sense of r e a l i t y . One feels fragmented and alienated from oneself as well as from one's world. One experiences chaos. Healing involves the overcoming of ambiguity, contradiction and a l i e n a t i o n . One restores c l a r i t y , order and harmony through transcending oppositions. Healing comes through search for meaning. The experience of ambiguity and disharmony leads human beings to search for patterns that give order and unity to their experience. In the process of searching 81 for meaning, people question the incomplete or contradictory values of t h e i r p a r t i c u l a r culture and seek a more comprehensive view of human l i f e . The Journey of Individuation Sanford (1977) begins by asking what health and i l l n e s s mean. "Health" comes from the Saxon word "hal , " from which "whole" i s also derived. Wholeness implies something organic. If a part of our body s u f f e r s , the whole s u f f e r s . If a part of ourselves i s denied, the whole person s u f f e r s , body and psyche. The healthy person i s one in whom a l l parts are functioning harmoniously. Like the ancient Greeks and American Indians, Sanford sees i l l n e s s as a loss of harmony or balance and healing as a r e s t o r a t i o n of wholeness. When we become i i i , for example, with cancer, our bodies may be t e l l i n g us something we have not been open to hearing in any other way. "Each case of i l l n e s s i s unique, and w i l l have a p a r t i c u l a r meaning for each person" (p. 34). Perhaps we have gone against our true natures i n some way or f a i l e d to r e a l i z e our creative p o t e n t i a l . I l l n e s s may be a necessary part of our development as persons. Sanford, a Jungian analyst, gives an account of the Jungian view of healing. What Jung c a l l e d " i n d i v i d u a t i o n " i s a movement toward wholeness and uniqueness, a movement never f u l l y r e a l i z e d i n a person's l i f e t i m e . Individuation i s "a search for and discovery of meaning, not a meaning we consciously devise, but the meaning embedded in l i f e 82 i t s e l f " (p. 20). It i s a natural process of growth beginning within the center of the s e l f . The psyche has the power to heal i t s e l f . Since health means becoming a whole person, i n d i v i d u a t i o n i s a healing journey. Growth takes place through the development of consciousness. "There i s no wholeness without change, and change . . . i s a matter of death and renewal" (pp. 98-99). For example, one's unconscious i d e n t i f i c a t i o n with others ends so that a new relatedness can be established on the basis of one's i n d i v i d u a l i t y . This process of growth i s p a i n f u l ; i t involves much struggle and s u f f e r i n g , including an encounter with darkness. Physical i l l n e s s may be the very obstacle a person needs to begin the journey of growth, as i t forces one to recognize the need for healing. In the course of the journey, a person learns to r e l a t e to the inner as well as to the outer world. The inner world of the psyche contains the stored-up wisdom of a l l human l i f e . Deep within the unconscious are the archetypes or patterns of energy common to a l l human beings and appearing in story form i n dreams, myths and f a i r y t a l e s . For example, the shadow i s the dark side of the personality, the unwanted or i n f e r i o r part of the s e l f that contradicts one's ide a l image. To become whole, i t i s necessary to face the shadow and accept i t as part of oneself. Individuation involves the growing consciousness of opposing tendencies within the psyche and an e f f o r t to integrate them. In the process one becomes a more complete, though not perfect, human being. Sanford describes the form healing took among the ancient Greeks 83 and Romans. A s i c k person who could not be cured by the s c i e n t i f i c a l l y -trained physicians, would make a sacred journey to one of the temples of Asklepius, the god of healing. After undergoing a r i t u a l p u r i f i c a t i o n in the natural springs near the temple, the patient would be l e f t alone to sleep i n a special room c a l l e d the abaton, where he hoped to receive a healing dream from the god. The dream experience i t s e l f , rather than any i n t e r p r e t a t i o n of i t , was believed to be healing. Asklepius's symbol was the serpent, which to the ancients was representative of the renewing, transforming energy of l i f e . According to Jung, the human psyche has t h i s same power to renew i t s e l f . Though s c i e n t i f i c and s p i r i t u a l aspects of healing have become separated, Sanford says that people who are i l l need renewal for t h e i r s p i r i t s as well as for t h e i r bodies, e s p e c i a l l y i f t h e i r i l l n e s s was of s p i r i t u a l o r i g i n . I l l n e s s and healing are connected with one's unique destiny. For the shamans or primitive healers, i l l n e s s was a form of i n i t i a t i o n to a more highly developed state of consciousness as well as a c a l l to a way of l i f e . A shaman might get sick or come close to death many times before accepting his or her destiny as a healer. This happened to Black Elk of the Sioux t r i b e . In each person who becomes i l l , Sanford says, there i s something of the shaman. Unless we become conscious of the meaning of our i l l n e s s , healing w i l l not be complete. "Moreover, i n a l l of us, the price of continued health i s the continued development of consciousness" (p. 71). Growth takes place through a process of death and r e b i r t h that forces us to discover our own unique way of being. If a person simply returns to a previous l e v e l of functioning after an 84 i l l n e s s , "the net r e s u l t i s a diminution of personality" (p. 71). If the value of one's experience i s denied, one i s reduced as a person. A person who has undergone a severe i l l n e s s and struggled to become more conscious of the meaning of his or her l i f e can often put others i n touch with healing. Such a person i s a wounded healer. Having discovered the psyche's inner power of renewal, the wounded healer has a f a i t h i n the healing process as well as an understanding of people who are i l l . Though present to others on th e i r healing journeys, the healer knows that ultimately they w i l l heal themselves. Like the shamans, wounded healers must use th e i r inner power to help others find renewal i n order to keep moving toward health and wholeness themselves. Assumptions Health i s harmony of the whole person, mind and body. I l l n e s s i s loss of harmony or balance. The meaning of i l l n e s s i n unique for each person. Health or wholeness i s an i d e a l . A healthy person i s a unique i n d i v i d u a l . Healing means moving toward wholeness and uniqueness. This takes a l i f e t i m e . Healing i s a process of growth. One grows as a person through searching for and discovering the unique meaning of one's l i f e . I l l n e s s can lead a person to begin this journey of growth. It can lead to an understanding of one's purpose i n l i f e . Accepting this purpose enables one to continue to grow. 85 Growth means continual change. It involves much s u