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The voice of experience
THE VIEW FROM HERE The Voice of Experience Doren L. Slade, PhD
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xperience has taught me many things as a woman, a psychoanalyst, and a person with Crohn’s disease. For more than 30 years, I fought to live life as I hoped I could in spite of Crohn’s disease. Suddenly, in 1995, profound defeat arrived in the form of toxic megacolon, demanding unconditional surrender to life with an ileostomy. My somatic integrity gave way to an unknowable, frightening, and most unwelcome stoma. My proctocolectomy was performed at a time when cost-efficiency rather than restoration of a sense of well-being had become the standard in health care delivery. That healing presence, traditionally the hallmark of the nursing profession, could come only in moments stolen from too many duties allotted too little time. Yet such moments in the company of a critically self-aware registered nurse or CWOCN nurse can make all the difference in how ostomy patients ultimately learn to coexist with their ostomies.1 But what could recovery have meant to me after my proctocolectomy? I refused to talk with anyone, touch my body, or contemplate the rest of my life, a response to trauma more common than we recognize. Physical wounds ultimately heal, whereas regaining one’s psychological balance is far more elusive. My point is that even though an ostomate cannot recover the integrity of his or her body after surgery, restoration of one’s sense of self is possible. By restoration I do not mean adaptation or adjustment, terms that rest on a belief that the ostomate eventually returns to a normal life.2-8 To me, hidden in this belief is a wish and not a reality. The sense of self of the ostomate is changed forever by the existence of imperceptible accommodations that invade every experience. For example, seemingly insignificant inconveniences intrude, such as difficulty wearing seat belts, emptying the bag into low toilets in regular clothes that get in the way, or standing in a stall knowing that the women waiting in line see your shoes facing the wrong way. Entrapment in these everyday events is usually profoundly
alienating, and appliance failure produces feelings of powerlessness or self-contempt. One ostomate may flee from helpless terror, while another dreads mortification. Powerlessness, vulnerability, and fear typically accompany depression that may not be expressed. Despair that is hidden by a patient is difficult to address meaningfully, and some level of desperation is invariably perpetuated by the continuing presence of a stoma.9-14 Yet, there is room for hope between the wish and the reality. Unlike adaptation and adjustment, terms grounded in the relationship between the individual and the external world, restoration is a state of mind grounded in one’s feelings about quality of life, one’s sense of wholeness, a sense of continuity connecting past with present, and a vision of the future. Most importantly, this state of mind rests on a sense of personal agency, on having terms and being willing to act on them. Restoration hinges on affirmation and the validating acceptance of experience no matter what the content of that experience. Thus, restoration of a sense of personal agency rests heavily on the interactions between the patient and the health care provider, particularly the nurse. Why am I so concerned with the use of terms like adaptation, adjustment, or recovery? Simply, these terms reflect concepts that are the pillars supporting a framework for understanding certain phenomena, a framework that will establish a mind-set that unconsciously organizes how people and events are perceived and experienced. Thinking in terms of recovery, adjustment, or adaptation reflects one type of mind-set, whereas thinking in terms of restoration reflects quite another. A particular mind-set held by nurses will generate expectations that then determine how these nurses respond to patients. In fact, interactions that occur between nurse and patient provide moments in which nurses may promote or inadvertently interfere with a patient’s struggle toward restoring his or her sense of self. An ostomate’s journey toward restora-
Doren L. Slade, PhD, is Director of the Stoma Services Support Group at Tisch Hospital of New York University Medical Center in New York City. A version of this article was presented at the Conference on Ostomy Care, June 3, 1999, New York University Center for Continuing Education in Nursing, New York University, New York. Reprint requests: Doren L. Slade, PhD, LD&J Associates, Inc, Mental Health Specialists, 215 West 90th St, 4E, New York, NY 10024. J WOCN 2000;27:201-6 Copyright © 2000 by the Wound, Ostomy and Continence Nurses Society. 1071-5754/2000/$12.00 + 0 21/1/107878 doi:10.1067/mjw.2000.107878
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tion depends on the willingness of all members of the professional staff to acknowledge the legitimacy of feelings expressed by the patient. This approach contrasts with guidance toward where a provider believes the patient should go. My ET nurse accepted my rabid hatred of my stoma. My screams of torment in whatever form they occurred always elicited my ET nurse’s calming reply: “You can say that to me as many times as you like.” In such moments of affirmation, I was no longer isolated, at least for a little while. We all know that personal experience is the best teacher, but this is not the only way to achieve understanding of another’s experience. Nurses develop their own interpretation of what it is like to have an ostomy, and nurses who have cared for patients with ostomies for a number of years may come to believe that they really know what it is like to be an ostomate. We then believe that our professional experience and our professional detachment eliminate the dangers of personal bias we may develop with certain patients. Thus, we believe we are seeing something for what it really is. However, this is not necessarily true.15 The powerful impact of altered body appearance and function brings up feelings that require coping in a manner beyond what can be easily conjured up by anyone free to leave at the end of the day. Ostomates cannot leave at the end of the day, and whatever we do in our lives is always “in spite of.” Realizing deep down that one does not really know what it is like to have an ostomy has unique importance. Such critical selfawareness allows the nurse to hear what a patient is really saying. Learning to listen, then, makes it possible to stretch toward an understanding in depth that only comes from being able to place oneself in an ostomate’s shoes, that is, to immerse oneself in another’s experience. My belief in the value of placing oneself in another’s shoes helps me make sense of interactions with my patients, other ostomates, family members, and other health care professionals.16-18 Yet placing oneself in an ostomate’s shoes is not as easy as it sounds. For one, having an ostomy is virtually unimaginable for most people. Even further, everyone hates suffering and wants the sufferer to be done with it as soon as possible. Unfortunately, silent shunning, even when inadvertent, contributes to the ostomate’s inevitable feel-
ings of isolation. There are other inescapable difficulties. We all flee from feelings such as terror, rage, and hopelessness and unconsciously distance ourselves from such feelings. The guiding ideal that we must make a difference in someone’s suffering easily fools us into believing that we would not reject the noxious expression of our patients’ torment. Nor, we believe, would we ever act in a rejecting manner toward these patients. But sadly, we do. Patients’ angry rejection of their situation, when hurled in your direction, is difficult to respond to meaningfully. Just as it is deliciously rewarding to confirm a patient’s newfound sense of mastery in managing his or her ostomy appliance, it is equally uplifting to affirm a patient’s torment in whatever form it takes. What I am suggesting is that just as it is the most natural thing in the world to protect oneself from frightening feelings, it is just as easy to miss the one thing we can do to alleviate the suffering of the ostomy patient—that is, to accompany the ostomate in his or her own feelings about what is happening. Do any of us recognize the following inadvertently invalidating statements that were meant to be helpful when we said them? • Your rage is not useful. • You have to keep a positive attitude to get better. • You will get used to it; it is just a matter of time. • You will be back to yourself in no time. • You won’t spend any more time in the bathroom than you ever did before. • You can live an active life, just don’t ever lift more than 25 pounds. • Of course you are upset; you are mourning the loss of your colon. (As if that’s the real loss.) • You are lucky to be alive (in response to a patient saying that he wished he hadn’t survived the surgery). • Why are you so angry? Having an ostomy is better than being dead. • Now, now, the surgery was successful. You have a perfectly normal stoma. Besides, no one will even know it is there. The point is, what the patient is expressing resonates with personal feelings, professional expectations, and unspoken cultural rules, all of which combine to create unconscious reactions that nurses have toward their patients, which create the opportunity for unintentional invalidation of patients’ feelings. Too often we act as if
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the acknowledgment of suffering extinguishes the possibility of hope. It does not. And, in fact, the integration of suffering through the responsiveness of a credible authority like a nurse or ET nurse actively helps restore the patient’s sense of hope. My experience of living with an ostomy for 5 years now creates an evocative narrative. Perhaps my story will deepen your understanding of what it is like to be the ostomate half of a very special healing couple composed of ostomate and nurse. I do not represent the ideal, as if one could summon up such an image. The truth is, some ostomates simply have an easier time than others, but to me we are all heroes. We can take for granted that the surgical creation of an ostomy is both a physical and psychological trauma capable of generating strong reactions that are unmatched in their impact and horror, trauma not easily obliterated by time. In sharing my story, many facets of these events are still raw experience and are very painful to recall, relive, and address publicly. Many of the feelings I struggled through and put to rest remain close to the surface. These emotions overcome me when my stoma suddenly appears enlarged or I feel pain that reminds me of the herniation that led to my recent revision. Then there is the recurrent fear of obstructions, a fear that persists in stalking me as I eat my salad. I have come to believe that many people are uncomfortable once they know about my ostomy, and people I have met on my journey have either been uplifting, neutral, or completely crushing. I am no longer surprised when I am greeted with expressions of shock, repulsion, guilt, and uncertainty by persons who feel uncomfortable and awkward around me and cannot say a word to me. After all, it is difficult to ponder the unthinkable. I am no longer mystified by people not touching me, hugging me as if my stoma loomed between us, or believing that they could not count on me for normal cognitive functioning, as if my body alteration removed brain matter along with my colon. In consequence, I have sought refuge with medical personnel who won’t blurt out, “What’s that thing?” How people relate matters terribly. We are in many ways dependent on the kindness of strangers, never more so than when we are uncertain, powerless, vulnerable, and fearful. And this is how we must be accepted as being. I used to be uncomfort-
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able when told, “What courage you have.” The choices I made seemed so obvious to me. I now know that the choice to struggle is not the only choice possible. What matters is finding the means to support that shattered spirit overwhelmed by terror and despair. Crohn’s disease has been a formidable competitor for control over my life since I was 21 years old. Yet I appeared to be a competent manager of an existence that often felt privately nightmarish. Along with chronicity, punctuated by acute phases of disease, I could not escape constant uncertainty. Having an ostomy makes me a member of yet another patient population, no less chronic, simply more ambiguous. Ostomates generally are no longer acutely ill but we are chronically vulnerable.19 Curiously, Crohn’s disease seems to have been less difficult for others to relate to than having an ostomy. Is it more shameful to have an ostomy than a disease? Is it more difficult to relate to the visible presence of a stoma than to the invisible presence of an illness? My conclusion is simple. An ostomy generates deep fear: “There, but for the grace of…go I.” Ostomies tell us all in a very shocking way that, as human beings, we are not in control. How one feels about having an ostomy is also significantly affected by how the need for the ostomy arises, whether it is a result of ulcerative colitis, Crohn’s disease, colorectal cancer, polyposis, trauma, or obstruction, to name the most common causes. In the deepest recesses of my mind, I knew the risks associated with Crohn’s disease. Yet I never once entertained the idea that I would become “a bag lady.” Regardless of how we get there, the entire package is profoundly depressing, a feeling very often replaced by a loss of confidence in one’s capacity to deal with everyday challenges. With an increased sense of vulnerability, actual threats are easily pushed from the mind, while other less dangerous situations become imagined threats that completely preoccupy one’s mind. For example, an ostomate may “freak out” when his or her stoma bleeds but will wait days to see a doctor or go to an emergency room when symptoms of an obstruction persist. It takes a great deal of time to achieve a balance between what physical vulnerabilities we, as ostomates, actually have and our terror of having the ostomy in the first place. In 1995, part of me knew I was going
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down for the count. Like everyone else, though, I continued to mutter to myself, “This can’t be happening to me.” The line between the psyche and the soma is a fine one, and it is all too easy to mistake the effects of one for the consequences of the other. In 1995, Crohn’s disease had taken all my strength. My vacation was ultimately cut short because of pain, bleeding, and incontinence. Critical blood loss took me to a local hospital in Upstate New York, a hospital in New Jersey, and ultimately to the emergency department at New York University Medical Center. Fifty pounds lighter, I should have known that when a surgical team descends like lions at a kill, only one thing happens. But before surgery, I spent about a week in the intensive care unit, replacing lost blood and being medicated. I will never forget the night before surgery: putting things in order, leaving instructions for how my practice was to be handled, and signing forms about “what if.” My surgeon had been in that afternoon and tapping my toe, said with a smile, “Are you ready to get rid of that thing?” I had already committed my colon to the deep and wondered why he waited so long. I was too busy to notice that I was falling off the horse I had ridden all my life. My sense of youthful immortality and my strong athletic body had been exchanged for a damaged and unreliable body that was supposed to “last a lifetime.” Even so, I could not contemplate dying, even though death’s definitiveness had some appeal. Nor could I contemplate remaining alive, because I could not conjure up an image of myself with an ostomy. And what about rejecting those close to me or failing those most dependent on me, like my patients? I knew I was flirting with whether I could rise to the challenge, whatever that might be, because I really had no idea. Before surgery, I was visited by an ostomate who was a friend of a member of my family. She was untrained but with good intentions. Cute and perky, this 27-year-old made me ill; I was never like her, and I would certainly not be like her postsurgically. I thought to myself, this woman must be in massive denial, because I presumed that no one is happy to have an ostomy, even when it is life-saving. She showed me her stoma and the cute little bag she wore over it. It took me nearly two months after my surgery before I could ask her what the down side
of this experience had been for her. I was floored when she replied that she had not experienced one. This response propelled me further into an isolation that invariably accompanies hopelessness. I had been fortunate that the medical center had a WOC nurse on staff who marked the spot for placement of the stoma and would later help me cope with fears that arise spontaneously from lack of hands-on experience. The surgery was extremely difficult, taking hours longer than anticipated. I awakened to intense pain that bore its way through heavy medication, with my traumatized body enveloped in multiple devices to help sustain and stabilize me. I was angry and confused, helpless and frightened. The pain was relentless in the days following, and I was literally done in by the experience. I lay in my hospital bed in despair, in the dark for 2 weeks in a state of paralyzed defeat. I had nothing to say and growled “leave me alone” at everyone who entered the room. I refused to get up and walk. I refused to be alive. It took a new roommate bathed in perfume to drive me out of the hospital with my terror and no investment in the future. In effect, I felt abandoned to a life that seemed utterly ruined. After being completely split up the middle from pubis to breasts, even sitting was a radical experience in pain management. I could not concentrate, had developed food phobias, and was angry at everything. My patients waited for nearly 6 months but hung on, doing far better than I did. In spite of what I could have predicted from my relatively successful struggle with the disruptive impact Crohn’s disease had on my life, I did not bounce back from my proctocolectomy. For me, having an ostomy is not a spiritual experience. For me, it is immediate, concrete, and physical, and the self that dwells within is often lost in the skirmish. Learning to own and manage one’s ostomy is critical to its proper functioning and, ultimately, to the bearer’s peace of mind. I experienced multiple skin reactions, leakages day and night, and painful, weeping sores—tormenting experiences that ended when I found an appliance that served my needs. I became convinced that taking a hot shower would dissolve my wafer but was too humiliated to tell anyone. I was afraid to go swimming until my ET nurse demanded that I prove her wrong. I knew these reactions were irrational, but my anxiety overrode whatever information I
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was given. I was constantly afraid of herniation from sneezing and coughing but felt completely helpless to prevent it.20,21 Gradually, with increased firsthand experience, my sense of security grew as I became familiar with the “ins” and “outs” of being an ostomate. Significantly, like so many veterans of war, aside from my medical team I kept my sense of devastation to myself. On the one hand, I resumed my practice, and things seemed to settle into a familiar pattern. On the other hand, everything had changed. I chastised myself for not getting on with life gracefully, and I tried to hide my disappointment in myself. I had believed that time would heal, but I needed to find a balance between what I could do for myself and what I needed to ask from others, a balance not always easy to come to by oneself. Even though I managed my stoma quite well, I continued to feel on edge, ready for the other shoe to drop. I knew the signs of posttraumatic stress syndrome, and though it is not unusual for ostomy patients, I had fallen into a profound, erosive, rage-like despair that covered my life like a shroud. I returned to analysis to try to understand my reactions to my replumbing. Relieved by the reassuring presence of another who was willing to break through the wall of my self-imposed but involuntary isolation, I gradually began to recapture a sense of purpose. My quest for professional help has proved to be very special, a journey that has involved me in the creation of the Stoma Service at Tisch Hospital of New York University Medical Center. My work as director of the Stoma Services Support Group is both restorative and challenging and is, at times, more difficult than I expected. It is all too easy to identify with what is being expressed by participants, and I must be on guard to prevent myself from reacting in the same way that I have said nurses shouldn’t. I deeply believe in the healing value of dialogue, of sharing and responsiveness. This is a personal ideal as well as a product of my training. But for the average person in our culture, expressing feelings and digging into the meaning of things are not held in such high esteem. Furthermore, among many people, especially older generations, the sharing of personal meanings would be considered inappropriate. Support groups are established to address what is not right and unfortunately, what some people see as personal failings. My
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point is that a public expression of such matters is not a core American value. The strength of certain core values in our society is very evident in the way participants in the support group relate to each other. Most prominent are the following cultural proscriptions: self-reliance is better than dependence; expressing joy is preferred to expressing suffering; being alive makes being disfigured inconsequential; and accepting fate makes complaining selfindulgent. For the ostomate, these proscriptions interfere with the freedom to display feelings of rage and hopelessness, for example, making it more difficult to accept his or her own resentment and anguish. I personally have been admonished for being resentful of having to live with an ostomy because, after all, “it’s better than being dead.” The implication is clear: once having been saved, the expression of such feelings is considered to be a self-serving complaint rather than an expression of suffering. Life and death are opposing possibilities in this perspective, a view that misses the point altogether. The issue of living or dying is off the subject; that has already been decided. The ostomate’s real challenge involves dealing with a changed body, a changed self-concept, and ultimately, with a changed life. In spite of various difficulties, persons come to the Support Group for reasons they often cannot articulate. They do not intend to share their experience, but they ultimately do. Being an ostomate as well as a psychoanalyst, I am invariably flooded by my own experience as it resonates with the experience of participants. We are all wounded, angry, and frightened. At times our pain is so palpable that an explosion of affect seems the only road to relief. And yet, we do not explode. Instead, we reach tentatively toward each other and communicate through discussions of what we have figured out to help ourselves manage better. Most suffering is expressed in physical metaphor consisting largely of comments and questions about our stomas and appliances. Such metaphors blend feelings and beliefs to create themes that speak to such topics as survival, body image, terror, cancer, futility, isolation, exclusion, dependency, intimacy, mutilation, self-contempt, and fear of failure and being misunderstood. Shame, a constant companion in the outside world, is rendered null and void among us, as we create our own affirming and “holding environment.”21 A fear of humil-
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iation is a salient issue, interwoven, on a deeper level, with themes of loss of and rejection by loved ones upon whom we are inevitably dependent. I would not be so easily accepted as a therapist were I not also an ostomate. After all, “Was you d’ere, Charlie” really means something among individuals for whom firsthand experience counts as the only basis for true understanding. As we grapple to make the unbearable known and manageable, we make it possible to arrive at a greater sense of our own capacities. I have learned that most individuals with ostomies have a great deal of fortitude if they can deal meaningfully with their terror and anger at having been so unjustly treated by fate. In my way of thinking, persons who are able to incorporate their ostomy into their existence will fare far better than persons for whom the ostomy becomes the only context for all that life contains. In short, either the ostomy eventually fits into your life or you squeeze your life into what the ostomy has taken from it. I hope my narrative creates a window through which you can see the profound and complex nature of experience for the ostomate. This narrative also serves as a cautionary tale with one message of singular importance. That is, it is wise for health care professionals not to let themselves fall back on directing ostomates to be grateful, think positively, dispense with their anger and terror, and, as quickly as possible, arrive at a general sense of wellbeing. Such messages miss the true need of the ostomate to be accompanied in the particular feelings about what is actually happening to them at the moment. Nor is it wise to leave the quiet, cooperative ostomate in his or her isolation. No one should take this journey alone. Ostomates need “listening to.” Both support groups and well-trained, alert nurses are, therefore, crucial to the psychological and physical survival of the ostomate.
REFERENCES 1. Righter B. Uncertainty and the role of the credible authority during an ostomy experience. J WOCN 1995;22:100-4. 2. Walsh B, Grunert BK, Telford G, Otterson M.
Multidisciplinary management of altered body image in the patient with an ostomy. J WOCN 1995;22:227-41. 3. Bryant RA. Ostomy patient management: care that engenders adaptation. Cancer Invest 1993;11:565-77. 4. Golis A. Sexual issues for the person with an ostomy. J WOCN 1996;23:33-7. 5. Smith DB. Psychosocial adaptation. In: Hampton BG, Bryant RA, editors. Ostomies and continent diversions: nursing management. St Louis: Mosby Year-Book; 1992. p. 15-8. 6. Orbach C. Time and inhibition in the adaptation of patients with colostomies. Psychoanal Rev 1975;62:663-73. 7. Follick M, Smith TW, Turk DC. Psychosocial adjustment following ostomy. Health Psychol 1984;3:50517. 8. Sidell N. Adult adjustment to chronic illness. Health Soc Work 1997;22:5-11. 9. Walsh B, Grunert BK, Telford G, Otterson M. Multidisciplinary management of altered body image in the patient with an ostomy. J WOCN 1995;22:227-41. 10. Mihalopoulas N, Trunell E, Ball K, Moncur C. The psychological impact of ostomy surgery on persons fifty years of age and older. J WOCN 1994;21:149-55. 11. Morse JM, Carter B. The essence of enduring and expressions of suffering: the reformulation of self. Sch Inq Nurs Pract 1996;10:43-60. 12. Pollack SE, Christian B, Sands D. Human responses to chronic illness: a comparative analysis of psychological and physiological adaptation. Nurs Res 1990;39:300-4. 13. Keyes K, Bisno B, Richardson J, Marston A. Age differences in coping, behavioral dysfunction and depression following colostomy surgery. Gerontologist 1987;27:182-4. 14. Pieper B, Mikols C. Predischarge and postdischarge concerns of persons with an ostomy. J WOCN 1996;23:105-9. 15. Pollack S, Sands D. Adaptation to suffering. Clin Nurs Res 1997;6:171-85. 16. Moore-Hepburn J. Out of the trenches: battling Crohn’s disease and finding a very important ally. Ostomy Q 1998;35:40-2. 17. Kohut H. Introspection, empathy and psychoanalysis. J Am Psychoanal Assoc 1959;7:459-83. 18. Lichtenberg J, Bornstein M, Silver D, editors. Empathy I. Hillsdale (NJ): Analytic Press; 1984. 19. Follick M, Smith T, Turk D. Psychosocial adjustment following ostomy surgery. Health Psychol 1984;3:505-17. 20. Mishel M, Padilla G, Grant M, Sorenson DS. Uncertainty in illness theory: a replication of the mediating effects of mastery and coping. Nurs Res 1991;40:236-40. 21. Winnicott DW. Through pediatrics to psychoanalysis. London: Hogarth Press; 1975.
E
xperience has taught me many things as a woman, a psychoanalyst, and a person with Crohn’s disease. For more than 30 years, I fought to live life as I hoped I could in spite of Crohn’s disease. Suddenly, in 1995, profound defeat arrived in the form of toxic megacolon, demanding unconditional surrender to life with an ileostomy. My somatic integrity gave way to an unknowable, frightening, and most unwelcome stoma. My proctocolectomy was performed at a time when cost-efficiency rather than restoration of a sense of well-being had become the standard in health care delivery. That healing presence, traditionally the hallmark of the nursing profession, could come only in moments stolen from too many duties allotted too little time. Yet such moments in the company of a critically self-aware registered nurse or CWOCN nurse can make all the difference in how ostomy patients ultimately learn to coexist with their ostomies.1 But what could recovery have meant to me after my proctocolectomy? I refused to talk with anyone, touch my body, or contemplate the rest of my life, a response to trauma more common than we recognize. Physical wounds ultimately heal, whereas regaining one’s psychological balance is far more elusive. My point is that even though an ostomate cannot recover the integrity of his or her body after surgery, restoration of one’s sense of self is possible. By restoration I do not mean adaptation or adjustment, terms that rest on a belief that the ostomate eventually returns to a normal life.2-8 To me, hidden in this belief is a wish and not a reality. The sense of self of the ostomate is changed forever by the existence of imperceptible accommodations that invade every experience. For example, seemingly insignificant inconveniences intrude, such as difficulty wearing seat belts, emptying the bag into low toilets in regular clothes that get in the way, or standing in a stall knowing that the women waiting in line see your shoes facing the wrong way. Entrapment in these everyday events is usually profoundly
alienating, and appliance failure produces feelings of powerlessness or self-contempt. One ostomate may flee from helpless terror, while another dreads mortification. Powerlessness, vulnerability, and fear typically accompany depression that may not be expressed. Despair that is hidden by a patient is difficult to address meaningfully, and some level of desperation is invariably perpetuated by the continuing presence of a stoma.9-14 Yet, there is room for hope between the wish and the reality. Unlike adaptation and adjustment, terms grounded in the relationship between the individual and the external world, restoration is a state of mind grounded in one’s feelings about quality of life, one’s sense of wholeness, a sense of continuity connecting past with present, and a vision of the future. Most importantly, this state of mind rests on a sense of personal agency, on having terms and being willing to act on them. Restoration hinges on affirmation and the validating acceptance of experience no matter what the content of that experience. Thus, restoration of a sense of personal agency rests heavily on the interactions between the patient and the health care provider, particularly the nurse. Why am I so concerned with the use of terms like adaptation, adjustment, or recovery? Simply, these terms reflect concepts that are the pillars supporting a framework for understanding certain phenomena, a framework that will establish a mind-set that unconsciously organizes how people and events are perceived and experienced. Thinking in terms of recovery, adjustment, or adaptation reflects one type of mind-set, whereas thinking in terms of restoration reflects quite another. A particular mind-set held by nurses will generate expectations that then determine how these nurses respond to patients. In fact, interactions that occur between nurse and patient provide moments in which nurses may promote or inadvertently interfere with a patient’s struggle toward restoring his or her sense of self. An ostomate’s journey toward restora-
Doren L. Slade, PhD, is Director of the Stoma Services Support Group at Tisch Hospital of New York University Medical Center in New York City. A version of this article was presented at the Conference on Ostomy Care, June 3, 1999, New York University Center for Continuing Education in Nursing, New York University, New York. Reprint requests: Doren L. Slade, PhD, LD&J Associates, Inc, Mental Health Specialists, 215 West 90th St, 4E, New York, NY 10024. J WOCN 2000;27:201-6 Copyright © 2000 by the Wound, Ostomy and Continence Nurses Society. 1071-5754/2000/$12.00 + 0 21/1/107878 doi:10.1067/mjw.2000.107878
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tion depends on the willingness of all members of the professional staff to acknowledge the legitimacy of feelings expressed by the patient. This approach contrasts with guidance toward where a provider believes the patient should go. My ET nurse accepted my rabid hatred of my stoma. My screams of torment in whatever form they occurred always elicited my ET nurse’s calming reply: “You can say that to me as many times as you like.” In such moments of affirmation, I was no longer isolated, at least for a little while. We all know that personal experience is the best teacher, but this is not the only way to achieve understanding of another’s experience. Nurses develop their own interpretation of what it is like to have an ostomy, and nurses who have cared for patients with ostomies for a number of years may come to believe that they really know what it is like to be an ostomate. We then believe that our professional experience and our professional detachment eliminate the dangers of personal bias we may develop with certain patients. Thus, we believe we are seeing something for what it really is. However, this is not necessarily true.15 The powerful impact of altered body appearance and function brings up feelings that require coping in a manner beyond what can be easily conjured up by anyone free to leave at the end of the day. Ostomates cannot leave at the end of the day, and whatever we do in our lives is always “in spite of.” Realizing deep down that one does not really know what it is like to have an ostomy has unique importance. Such critical selfawareness allows the nurse to hear what a patient is really saying. Learning to listen, then, makes it possible to stretch toward an understanding in depth that only comes from being able to place oneself in an ostomate’s shoes, that is, to immerse oneself in another’s experience. My belief in the value of placing oneself in another’s shoes helps me make sense of interactions with my patients, other ostomates, family members, and other health care professionals.16-18 Yet placing oneself in an ostomate’s shoes is not as easy as it sounds. For one, having an ostomy is virtually unimaginable for most people. Even further, everyone hates suffering and wants the sufferer to be done with it as soon as possible. Unfortunately, silent shunning, even when inadvertent, contributes to the ostomate’s inevitable feel-
ings of isolation. There are other inescapable difficulties. We all flee from feelings such as terror, rage, and hopelessness and unconsciously distance ourselves from such feelings. The guiding ideal that we must make a difference in someone’s suffering easily fools us into believing that we would not reject the noxious expression of our patients’ torment. Nor, we believe, would we ever act in a rejecting manner toward these patients. But sadly, we do. Patients’ angry rejection of their situation, when hurled in your direction, is difficult to respond to meaningfully. Just as it is deliciously rewarding to confirm a patient’s newfound sense of mastery in managing his or her ostomy appliance, it is equally uplifting to affirm a patient’s torment in whatever form it takes. What I am suggesting is that just as it is the most natural thing in the world to protect oneself from frightening feelings, it is just as easy to miss the one thing we can do to alleviate the suffering of the ostomy patient—that is, to accompany the ostomate in his or her own feelings about what is happening. Do any of us recognize the following inadvertently invalidating statements that were meant to be helpful when we said them? • Your rage is not useful. • You have to keep a positive attitude to get better. • You will get used to it; it is just a matter of time. • You will be back to yourself in no time. • You won’t spend any more time in the bathroom than you ever did before. • You can live an active life, just don’t ever lift more than 25 pounds. • Of course you are upset; you are mourning the loss of your colon. (As if that’s the real loss.) • You are lucky to be alive (in response to a patient saying that he wished he hadn’t survived the surgery). • Why are you so angry? Having an ostomy is better than being dead. • Now, now, the surgery was successful. You have a perfectly normal stoma. Besides, no one will even know it is there. The point is, what the patient is expressing resonates with personal feelings, professional expectations, and unspoken cultural rules, all of which combine to create unconscious reactions that nurses have toward their patients, which create the opportunity for unintentional invalidation of patients’ feelings. Too often we act as if
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the acknowledgment of suffering extinguishes the possibility of hope. It does not. And, in fact, the integration of suffering through the responsiveness of a credible authority like a nurse or ET nurse actively helps restore the patient’s sense of hope. My experience of living with an ostomy for 5 years now creates an evocative narrative. Perhaps my story will deepen your understanding of what it is like to be the ostomate half of a very special healing couple composed of ostomate and nurse. I do not represent the ideal, as if one could summon up such an image. The truth is, some ostomates simply have an easier time than others, but to me we are all heroes. We can take for granted that the surgical creation of an ostomy is both a physical and psychological trauma capable of generating strong reactions that are unmatched in their impact and horror, trauma not easily obliterated by time. In sharing my story, many facets of these events are still raw experience and are very painful to recall, relive, and address publicly. Many of the feelings I struggled through and put to rest remain close to the surface. These emotions overcome me when my stoma suddenly appears enlarged or I feel pain that reminds me of the herniation that led to my recent revision. Then there is the recurrent fear of obstructions, a fear that persists in stalking me as I eat my salad. I have come to believe that many people are uncomfortable once they know about my ostomy, and people I have met on my journey have either been uplifting, neutral, or completely crushing. I am no longer surprised when I am greeted with expressions of shock, repulsion, guilt, and uncertainty by persons who feel uncomfortable and awkward around me and cannot say a word to me. After all, it is difficult to ponder the unthinkable. I am no longer mystified by people not touching me, hugging me as if my stoma loomed between us, or believing that they could not count on me for normal cognitive functioning, as if my body alteration removed brain matter along with my colon. In consequence, I have sought refuge with medical personnel who won’t blurt out, “What’s that thing?” How people relate matters terribly. We are in many ways dependent on the kindness of strangers, never more so than when we are uncertain, powerless, vulnerable, and fearful. And this is how we must be accepted as being. I used to be uncomfort-
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able when told, “What courage you have.” The choices I made seemed so obvious to me. I now know that the choice to struggle is not the only choice possible. What matters is finding the means to support that shattered spirit overwhelmed by terror and despair. Crohn’s disease has been a formidable competitor for control over my life since I was 21 years old. Yet I appeared to be a competent manager of an existence that often felt privately nightmarish. Along with chronicity, punctuated by acute phases of disease, I could not escape constant uncertainty. Having an ostomy makes me a member of yet another patient population, no less chronic, simply more ambiguous. Ostomates generally are no longer acutely ill but we are chronically vulnerable.19 Curiously, Crohn’s disease seems to have been less difficult for others to relate to than having an ostomy. Is it more shameful to have an ostomy than a disease? Is it more difficult to relate to the visible presence of a stoma than to the invisible presence of an illness? My conclusion is simple. An ostomy generates deep fear: “There, but for the grace of…go I.” Ostomies tell us all in a very shocking way that, as human beings, we are not in control. How one feels about having an ostomy is also significantly affected by how the need for the ostomy arises, whether it is a result of ulcerative colitis, Crohn’s disease, colorectal cancer, polyposis, trauma, or obstruction, to name the most common causes. In the deepest recesses of my mind, I knew the risks associated with Crohn’s disease. Yet I never once entertained the idea that I would become “a bag lady.” Regardless of how we get there, the entire package is profoundly depressing, a feeling very often replaced by a loss of confidence in one’s capacity to deal with everyday challenges. With an increased sense of vulnerability, actual threats are easily pushed from the mind, while other less dangerous situations become imagined threats that completely preoccupy one’s mind. For example, an ostomate may “freak out” when his or her stoma bleeds but will wait days to see a doctor or go to an emergency room when symptoms of an obstruction persist. It takes a great deal of time to achieve a balance between what physical vulnerabilities we, as ostomates, actually have and our terror of having the ostomy in the first place. In 1995, part of me knew I was going
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down for the count. Like everyone else, though, I continued to mutter to myself, “This can’t be happening to me.” The line between the psyche and the soma is a fine one, and it is all too easy to mistake the effects of one for the consequences of the other. In 1995, Crohn’s disease had taken all my strength. My vacation was ultimately cut short because of pain, bleeding, and incontinence. Critical blood loss took me to a local hospital in Upstate New York, a hospital in New Jersey, and ultimately to the emergency department at New York University Medical Center. Fifty pounds lighter, I should have known that when a surgical team descends like lions at a kill, only one thing happens. But before surgery, I spent about a week in the intensive care unit, replacing lost blood and being medicated. I will never forget the night before surgery: putting things in order, leaving instructions for how my practice was to be handled, and signing forms about “what if.” My surgeon had been in that afternoon and tapping my toe, said with a smile, “Are you ready to get rid of that thing?” I had already committed my colon to the deep and wondered why he waited so long. I was too busy to notice that I was falling off the horse I had ridden all my life. My sense of youthful immortality and my strong athletic body had been exchanged for a damaged and unreliable body that was supposed to “last a lifetime.” Even so, I could not contemplate dying, even though death’s definitiveness had some appeal. Nor could I contemplate remaining alive, because I could not conjure up an image of myself with an ostomy. And what about rejecting those close to me or failing those most dependent on me, like my patients? I knew I was flirting with whether I could rise to the challenge, whatever that might be, because I really had no idea. Before surgery, I was visited by an ostomate who was a friend of a member of my family. She was untrained but with good intentions. Cute and perky, this 27-year-old made me ill; I was never like her, and I would certainly not be like her postsurgically. I thought to myself, this woman must be in massive denial, because I presumed that no one is happy to have an ostomy, even when it is life-saving. She showed me her stoma and the cute little bag she wore over it. It took me nearly two months after my surgery before I could ask her what the down side
of this experience had been for her. I was floored when she replied that she had not experienced one. This response propelled me further into an isolation that invariably accompanies hopelessness. I had been fortunate that the medical center had a WOC nurse on staff who marked the spot for placement of the stoma and would later help me cope with fears that arise spontaneously from lack of hands-on experience. The surgery was extremely difficult, taking hours longer than anticipated. I awakened to intense pain that bore its way through heavy medication, with my traumatized body enveloped in multiple devices to help sustain and stabilize me. I was angry and confused, helpless and frightened. The pain was relentless in the days following, and I was literally done in by the experience. I lay in my hospital bed in despair, in the dark for 2 weeks in a state of paralyzed defeat. I had nothing to say and growled “leave me alone” at everyone who entered the room. I refused to get up and walk. I refused to be alive. It took a new roommate bathed in perfume to drive me out of the hospital with my terror and no investment in the future. In effect, I felt abandoned to a life that seemed utterly ruined. After being completely split up the middle from pubis to breasts, even sitting was a radical experience in pain management. I could not concentrate, had developed food phobias, and was angry at everything. My patients waited for nearly 6 months but hung on, doing far better than I did. In spite of what I could have predicted from my relatively successful struggle with the disruptive impact Crohn’s disease had on my life, I did not bounce back from my proctocolectomy. For me, having an ostomy is not a spiritual experience. For me, it is immediate, concrete, and physical, and the self that dwells within is often lost in the skirmish. Learning to own and manage one’s ostomy is critical to its proper functioning and, ultimately, to the bearer’s peace of mind. I experienced multiple skin reactions, leakages day and night, and painful, weeping sores—tormenting experiences that ended when I found an appliance that served my needs. I became convinced that taking a hot shower would dissolve my wafer but was too humiliated to tell anyone. I was afraid to go swimming until my ET nurse demanded that I prove her wrong. I knew these reactions were irrational, but my anxiety overrode whatever information I
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was given. I was constantly afraid of herniation from sneezing and coughing but felt completely helpless to prevent it.20,21 Gradually, with increased firsthand experience, my sense of security grew as I became familiar with the “ins” and “outs” of being an ostomate. Significantly, like so many veterans of war, aside from my medical team I kept my sense of devastation to myself. On the one hand, I resumed my practice, and things seemed to settle into a familiar pattern. On the other hand, everything had changed. I chastised myself for not getting on with life gracefully, and I tried to hide my disappointment in myself. I had believed that time would heal, but I needed to find a balance between what I could do for myself and what I needed to ask from others, a balance not always easy to come to by oneself. Even though I managed my stoma quite well, I continued to feel on edge, ready for the other shoe to drop. I knew the signs of posttraumatic stress syndrome, and though it is not unusual for ostomy patients, I had fallen into a profound, erosive, rage-like despair that covered my life like a shroud. I returned to analysis to try to understand my reactions to my replumbing. Relieved by the reassuring presence of another who was willing to break through the wall of my self-imposed but involuntary isolation, I gradually began to recapture a sense of purpose. My quest for professional help has proved to be very special, a journey that has involved me in the creation of the Stoma Service at Tisch Hospital of New York University Medical Center. My work as director of the Stoma Services Support Group is both restorative and challenging and is, at times, more difficult than I expected. It is all too easy to identify with what is being expressed by participants, and I must be on guard to prevent myself from reacting in the same way that I have said nurses shouldn’t. I deeply believe in the healing value of dialogue, of sharing and responsiveness. This is a personal ideal as well as a product of my training. But for the average person in our culture, expressing feelings and digging into the meaning of things are not held in such high esteem. Furthermore, among many people, especially older generations, the sharing of personal meanings would be considered inappropriate. Support groups are established to address what is not right and unfortunately, what some people see as personal failings. My
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point is that a public expression of such matters is not a core American value. The strength of certain core values in our society is very evident in the way participants in the support group relate to each other. Most prominent are the following cultural proscriptions: self-reliance is better than dependence; expressing joy is preferred to expressing suffering; being alive makes being disfigured inconsequential; and accepting fate makes complaining selfindulgent. For the ostomate, these proscriptions interfere with the freedom to display feelings of rage and hopelessness, for example, making it more difficult to accept his or her own resentment and anguish. I personally have been admonished for being resentful of having to live with an ostomy because, after all, “it’s better than being dead.” The implication is clear: once having been saved, the expression of such feelings is considered to be a self-serving complaint rather than an expression of suffering. Life and death are opposing possibilities in this perspective, a view that misses the point altogether. The issue of living or dying is off the subject; that has already been decided. The ostomate’s real challenge involves dealing with a changed body, a changed self-concept, and ultimately, with a changed life. In spite of various difficulties, persons come to the Support Group for reasons they often cannot articulate. They do not intend to share their experience, but they ultimately do. Being an ostomate as well as a psychoanalyst, I am invariably flooded by my own experience as it resonates with the experience of participants. We are all wounded, angry, and frightened. At times our pain is so palpable that an explosion of affect seems the only road to relief. And yet, we do not explode. Instead, we reach tentatively toward each other and communicate through discussions of what we have figured out to help ourselves manage better. Most suffering is expressed in physical metaphor consisting largely of comments and questions about our stomas and appliances. Such metaphors blend feelings and beliefs to create themes that speak to such topics as survival, body image, terror, cancer, futility, isolation, exclusion, dependency, intimacy, mutilation, self-contempt, and fear of failure and being misunderstood. Shame, a constant companion in the outside world, is rendered null and void among us, as we create our own affirming and “holding environment.”21 A fear of humil-
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iation is a salient issue, interwoven, on a deeper level, with themes of loss of and rejection by loved ones upon whom we are inevitably dependent. I would not be so easily accepted as a therapist were I not also an ostomate. After all, “Was you d’ere, Charlie” really means something among individuals for whom firsthand experience counts as the only basis for true understanding. As we grapple to make the unbearable known and manageable, we make it possible to arrive at a greater sense of our own capacities. I have learned that most individuals with ostomies have a great deal of fortitude if they can deal meaningfully with their terror and anger at having been so unjustly treated by fate. In my way of thinking, persons who are able to incorporate their ostomy into their existence will fare far better than persons for whom the ostomy becomes the only context for all that life contains. In short, either the ostomy eventually fits into your life or you squeeze your life into what the ostomy has taken from it. I hope my narrative creates a window through which you can see the profound and complex nature of experience for the ostomate. This narrative also serves as a cautionary tale with one message of singular importance. That is, it is wise for health care professionals not to let themselves fall back on directing ostomates to be grateful, think positively, dispense with their anger and terror, and, as quickly as possible, arrive at a general sense of wellbeing. Such messages miss the true need of the ostomate to be accompanied in the particular feelings about what is actually happening to them at the moment. Nor is it wise to leave the quiet, cooperative ostomate in his or her isolation. No one should take this journey alone. Ostomates need “listening to.” Both support groups and well-trained, alert nurses are, therefore, crucial to the psychological and physical survival of the ostomate.
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Multidisciplinary management of altered body image in the patient with an ostomy. J WOCN 1995;22:227-41. 3. Bryant RA. Ostomy patient management: care that engenders adaptation. Cancer Invest 1993;11:565-77. 4. Golis A. Sexual issues for the person with an ostomy. J WOCN 1996;23:33-7. 5. Smith DB. Psychosocial adaptation. In: Hampton BG, Bryant RA, editors. Ostomies and continent diversions: nursing management. St Louis: Mosby Year-Book; 1992. p. 15-8. 6. Orbach C. Time and inhibition in the adaptation of patients with colostomies. Psychoanal Rev 1975;62:663-73. 7. Follick M, Smith TW, Turk DC. Psychosocial adjustment following ostomy. Health Psychol 1984;3:50517. 8. Sidell N. Adult adjustment to chronic illness. Health Soc Work 1997;22:5-11. 9. Walsh B, Grunert BK, Telford G, Otterson M. Multidisciplinary management of altered body image in the patient with an ostomy. J WOCN 1995;22:227-41. 10. Mihalopoulas N, Trunell E, Ball K, Moncur C. The psychological impact of ostomy surgery on persons fifty years of age and older. J WOCN 1994;21:149-55. 11. Morse JM, Carter B. The essence of enduring and expressions of suffering: the reformulation of self. Sch Inq Nurs Pract 1996;10:43-60. 12. Pollack SE, Christian B, Sands D. Human responses to chronic illness: a comparative analysis of psychological and physiological adaptation. Nurs Res 1990;39:300-4. 13. Keyes K, Bisno B, Richardson J, Marston A. Age differences in coping, behavioral dysfunction and depression following colostomy surgery. Gerontologist 1987;27:182-4. 14. Pieper B, Mikols C. Predischarge and postdischarge concerns of persons with an ostomy. J WOCN 1996;23:105-9. 15. Pollack S, Sands D. Adaptation to suffering. Clin Nurs Res 1997;6:171-85. 16. Moore-Hepburn J. Out of the trenches: battling Crohn’s disease and finding a very important ally. Ostomy Q 1998;35:40-2. 17. Kohut H. Introspection, empathy and psychoanalysis. J Am Psychoanal Assoc 1959;7:459-83. 18. Lichtenberg J, Bornstein M, Silver D, editors. Empathy I. Hillsdale (NJ): Analytic Press; 1984. 19. Follick M, Smith T, Turk D. Psychosocial adjustment following ostomy surgery. Health Psychol 1984;3:505-17. 20. Mishel M, Padilla G, Grant M, Sorenson DS. Uncertainty in illness theory: a replication of the mediating effects of mastery and coping. Nurs Res 1991;40:236-40. 21. Winnicott DW. Through pediatrics to psychoanalysis. London: Hogarth Press; 1975.