Beyond the Self: The Cultural Frame
. . . the intuition of
the human situation itself,
more powerfully apprehended in the erection of a cultural bridge
than it might otherwise be.
Several years passed after my diagnosis before I realized how significantly my experience was being shaped by my culture. The crystallizing event in that realization was a month spent in the Middle East. It took perhaps the combination of being in another, foreign culture and being away from my own to make clear to me the impact of culture on my experience. It was only through stepping away and coming back that I saw myself in this larger context.
I had, until this time, tended to think about what was happening to me in purely individual terms, not as unique to me, of course, but as bounded by me and my social world-me and my disease, a definable unit, something apart from the realm of culture. I had been aware of some of the social consequences, particularly the impact on those I was close to, but I had not thought clearly about the ways in which their reactions and responses as well as my own were culturally shaped or socially demanded. I think perhaps it was necessary first to identify and begin to come to terms with the more personal and immediate issues. After I returned from the Middle East, my intuitive feelings about the ways in which others had viewed and had written about their experience with MS began to achieve some clarity and form.
Once I began to think about my experience in its cultural frame, I tried in some ways to keep it to myself, to retain its individual character. Increasingly, however, the relationship between my everyday life and the set of generally shared ideas, values, and symbols that constitutes my culture (for want of a better word) became apparent. It may seem that this should have been obvious but in this context it was not--at least to me. As this happened, I began to be aware of the conflicts between my life with a chronic disease and the values of the society in which I lived.
When I was in Egypt, walking with difficulty and using a cane, strangers and passersby asked me directly, "What is wrong with you? Why do you limp? Why are you sitting there? Why are you using a cane?" Walking in a Cairo street, an old woman came up to me, put her arm on mine, pointed to the cane, and patted my hand. I was struck by this; in the United States people don't ask questions of that nature or respond openly to disability. Instead they stare at or ignore me. The open acceptance I experienced in Egypt contrasted starkly with the equally open turning away I have come to expect in this country.
A brief example: one evening, riding on the commuter bus, surrounded by people I saw every day and who always smiled and chatted, I was unable to stand up. I eventually struggled out of my seat and stumbled to the door. Not one of these friendly people offered a hand; without exception, they averted their eyes and pretended not to notice my difficulty. Disease or disability is not something we openly acknowledge, but something we turn away from (this turning away is, of course, a form of acknowledgment).
My time in Egypt had a dramatic effect on me, although I only realized its impact after I had come home. I had felt so free and easy there. I had been just who I was, limped and stumbled about, and had no feelings about it. People reacted to me with care and consideration but so quietly, so matter-of-factly, that I wasn't aware of these differences until I came home. In Israel, in many ways a very Western society, I was completely ignored. No one modified their normal pushing and shoving behavior for me--everyone in Israel wants to be first in line--and I was knocked about quite often. That kind of being ignored is very different from what happens here, however, because it does not seem to be reflective of aversion. It is a not-seeing, not a seeing followed by a turning away.
What was important to me about being in the Middle East was the way in which it illuminated for me both the usual manner in which I am responded to here and the way I feel about it--my feelings had always been there, but I hadn't verbalized them even to myself and I hadn't thought very clearly about exactly what is being reflected by people's behavior. Moreover, I had not thought at all about these responses and my reactions to them in the context of my own acceptance and adjustment to chronic disease.
Another commuter bus example: I have trouble walking on a moving bus and tend to lurch around and bounce off people and seats and, of course, like everything else with MS, my difficulty varies from day to day. Over a period of several weeks I had engaged in normal bus conversation--about the weather, what we were reading--with a man who always took a seat near the rear of the bus, as I did. We had become increasingly friendly. One afternoon, when my difficulty moving was extreme, I fell getting off and he looked away. After that day that man, who had been very friendly, changed his seat and never even acknowledged a hello from me. I felt and still feel set apart, judged.
I've thought sometimes that people, in such situations, think I am drunk. I find myself trying very hard to walk straight, not to stumble or fall. I don't like being reacted to in that way and I like even less my response, my feelings of inadequacy, of being less than OK. Of course, there is always the possibility that nothing is happening in such a situation at all except someone deciding, for whatever reason, that they no longer want to be friendly, and that 1, being always aware of the ways in which I am not "normal," filter all experience through that awareness. But I think not. I think that man, and many others, do react to disability with aversion.
I had a very strong urge in that particular situation to confront that man and ask him directly why he had ceased to speak to me. I didn't do that, both out of fear (he might, after all, have said, "Hey, lady--I just don't like you") and out of a sense of weariness; I didn't at the time think it was worth it and, after all, one cannot go around confronting everyone who responds with avoidance.
Another very common reaction is that of embarrassment. But I think embarrassment, like anger, is one of those emotions that is not in and of itself very meaningful. One is embarrassed because one is feeling something else. The range of feelings that are covered by embarrassment include fear, helplessness, powerlessness, distaste, pity; they are all subsumed by aversion. One may look away because one feels helpless but, whatever the reason, one is looking away.
Obscene--illness, disability, disease are seen as obscene. A friend suggested that the meaning of "obscene" is "to turn away from"; etymologically that is incorrect but intuitively it is right on the mark. "Obscene" means not only "repulsive" but "abhorrent to morality or virtue." What exactly was going on when a co-worker asked, "What happened to your leg?" and I (feeling weary of being asked and a bit bitchy) responded, "Nothing is wrong with my leg; I have multiple sclerosis." The response, and there is nothing uncommon about it, was "Sorry I asked" as he walked away. I can understand that response. Nevertheless, I felt rejected. I felt exactly as though I, in some fashion, affronted him; as though I was a reproach; as though I was, most of all, something that he did not wish to see or acknowledge.
And why is that? I have come to think it is at least partly because disease does not fit in the American world view and, in fact, conflicts so sharply as to create a situation in which comfort requires that it not be seen. Disease is, in fact, an affront. For to acknowledge it would require acknowledging that our most closely held values are, at their root, disconsonant with reality. "Cognitive dissonance" is the term psychologists use to describe such a situation. The common response is to ignore the potential conflict-to deny it. Disease is abhorrent to morality and virtue in the sense that it is ultimately beyond our control, and to acknowledge that would call into question our most central notions about life and nature. We turn away from disease because it is an affront to the way things should be.
I turn away, too. I am not immune. The only difference is that when I react that way, I am only too painfully aware of my reaction and its implications and try very hard to check it. I feel both my own instinct to turn away and the feelings in me when I am turned away from. And I stand there and ask myself why and feel even more helpless because if I, who am turned away from, turn away from someone else, where is there an answer? I know that part of my reaction involves a not wanting to know and part of it is a helplessness, a not knowing what to do. And even though I know what it is I would like in the same situation, I don't (nor can 1) know what a particular person in a given situation would like. I am sure that uncertainty contributes to what I experience as aversion.
I said earlier that help was abundantly available to me; that may seem to conflict with what I am saying here. I don't think there is a conflict. Help is offered by close friends and family when it is asked for and even when it is not. On the day-to-day, ordinary falling-on-the-bus level, however, help is not offered. In either of the two situations I recounted, I imagine that if, but only if, I had directly asked for help it would have been forthcoming. But help has to be asked for; it is not offered silently or casually in this culture. Rarely does anyone reach out a hand to steady someone unasked.
The presence or absence of large numbers of people seems to make a big difference. I once fainted and fell getting off a train in Grand Central Station--there were hundreds of people around--and I lay there, being carefully stepped over, until I managed some minutes later to get to my feet. In contrast, at those times when I have fallen in the presence of one or two people, generally, though not always, they have helped me. I think this difference is important (and of course, it also has to do with issues of individual and group psychology). It points up not only the distinction between individual actions and the generally held, generally shared thrust of the culture, but also the power of culture and society to shape and direct individual experience. In a group situation, the values of the group, as group, seem to prevail. Another factor that seems to be involved in determining whether I am offered help in day-to-day situations is whether or not I am carrying a cane. Help is more often offered when I am. A cane seems to act as a status marker, to confer legitimacy. It defines its bearer as someone who is not quite "normal."
I think here, however, of the many times I have offered help to a blind person crossing a street and been brusquely rejected--"I can manage by myself"--or the acquaintance in a wheelchair who deeply resents anyone offering to help her. These people fiercely guard their independence. Does the fact that I am so rarely offered help reflect, in part, a generalized perception by others that I do not want it and would, in fact, reject it? In my generation, we were taught as Boy and Girl Scouts to offer that kind of help, the one good deed a day. My recollection, though, is that this help was to be directed primarily to the elderly. And, of course, there is always the "but you look so good" element at play in people's reactions to me. I usually do look well even when I am struggling to walk.
Apart from group dynamics, there are more fundamental reasons for these responses, which, I believe, are deeply rooted in the basic values and assumptions of this culture. An explanation of my difficulty in asking for help is also to be found in these basic values. I am not an expert on Middle Eastern culture and my time there was brief. But I suspect that one of the central factors underlying the differences I perceived is that in Egypt life rests on a very fatalistic approach; whatever will happen will happen: Insh'allah, God willing. Here, in contrast, the prevailing assumption is that an individual can determine what will happen. Fatalism versus free will, together with the strong emphasis on individual autonomy in American culture, are, I think, at the root of the differences I felt.
The other aspect of the freedom I felt in Egypt has to do with the fact that I was a foreigner, an outsider, there. I was not expected to know the rules of that culture or to be competent within it. And beyond that, there is a sense in which for me, my self was less at stake; the Egyptians did not know the usual criteria for evaluating it and, therefore, accepted me as I was. I was given an exemption, so to speak, from Egyptian rules and was not judged by my own rules either. V. S. Naipaul, an Indian, described this feeling perfectly when he spoke of visiting an island with no Indian population and therefore, "for me, no personal complication . . . I was just a stranger. . . . Judgments could be as simple as that there."1 The parallel is imperfect but that lack of personal complication, that leaving behind the usual framework of life and self, was what allowed me to begin to see the complexities and conflicts inherent in my life at home.
I remember one day shortly after my return from the Middle East having to take both a subway and a bus to get home. I usually do not use the subway and I wasn't sure where I was going and felt very uncertain. I remember saying to myself, "Hey, I just traveled all over Egypt and felt perfectly competent--in an unknown country where I couldn't even read the signs. And yet, here I am in my own city feeling totally at sea." Part of that was, of course, that in Egypt I wasn't supposed to be competent, while here competence is expected. There is also the feeling in Egypt, which I found very catching and appealing, that if incompetence triumphs, so what? In this country there is much less tolerance for incompetence or inefficiency. At those times when I am particularly shaky and find it difficult to get around, I feel very vulnerable to that lack of tolerance.
The more important part of this, and the more curious for is that I, my self, my personhood, do seem to be at stake here. And it occurred to me to wonder just why that is so. What was it about having MS that had changed me? I never felt completely in tune with mainstream American culture or values. My values were different and I was always something of an outsider. But I had never felt judged or particularly in conflict with my culture or vulnerable to its assessments. Or perhaps, to be more accurate, I had not cared very much if I was out of tune with my culture. It was only when I came back from the Middle East that I began to feel the full force of these conflicts, to realize that I did feel my self was in some measure at stake. Suddenly, it did seem to matter when, for example, I am judged to be incompetent even in so small a thing as being lost on the subway.
I have great difficulty functioning in very warm weather and am apt to become confused and disoriented in extreme heat. And of course, when that happens, I may well not be aware that I am in fact confused. One hot July day, I got off my bus as usual to transfer to another (do all my adventures take place on buses?). There were six or seven buses waiting and, for whatever reason--it was hot, I was tired--I did not find the bus I should have boarded. I suddenly became aware that everyone else had boarded a bus, the transfer area was empty, and I was wandering from bus to bus. Everyone was waiting for me. None of this had registered. I immediately climbed aboard the closest bus and then realized it was the one I had been on before. People were looking at me as though I were crazy. I felt judged and a failure, incompetent.
The point of this story is twofold. First, had it happened in Egypt, I would not have been held to the same level of expectation by others because I was an outsider. A bus that leaves on time, that runs at all, is an accomplishment in Egypt. Efficiency is surely not expected, and therefore if I had caused a delay, it would have not mattered at all to anyone. Second, I was quite clearly seen as incompetent by my fellow commuters in that situation, even as something of a public nuisance because I had delayed all the buses. But why did it matter so much to me? I began to realize that my new sense of vulnerability and the feeling that I was being held up against a set of values and feeling incongruent with them, in both big and small ways, arose in large measure out of my awareness and fear of my potential dependency. It was the clarity I found in Egypt, suddenly removed from the constraints and the usual framework of living, that led me to see these issues so starkly.
After I returned home, I began to think about what it means to be disabled in America. What are the prevailing values and underlying assumptions of this culture and how do they affect my daily life? My experience is shaped and, in some measure, controlled by living within the frame of these assumptions and it suddenly seemed very important to examine them more closely.
Several common assumptions come to mind, all rooted in the American ethic of self-determination: we are what we do; we have self-responsibility and autonomy; we can control our life and experience--outcomes are controllable. Illness and disease are seen as punishment; the idea exists that failure implies a defect in character and will.
What are the primary values of American culture on which these assumptions are based? Values are notoriously hard to define or measure, in part because a group's dominant values may conflict with how it lives on a daily basis. What we like to or need to think we are may not bear much relation to what we are in fact. Important symbols may encapsulate values that are not operative in daily life but that are crucially important in how we think about ourselves. Moreover, the dominant values of a group will be variously represented among individuals; there may be wide variations in beliefs, practices, expressed values. "Values" may well be the wrong word to use here, but I think it is as useful as any other concept in thinking about the impact of culture on individual experience. Values reflect common understandings and shared assumptions about the world and the nature of reality within which and through which experience is filtered.
There are four primary values that I have come to see as paramount and all-encompassing in shaping and coloring the experience of being ill in America. I think these values are basic to and underlie the working assumptions of this culture. The first, and probably the most important, is the notion that humans both do and should control nature and that control, on all levels, is always a desired outcome. The high value given to control is central to the common understanding of illness and disability in America. Second, and akin to the value given to control, is the centrality of the idea of independence and self-sufficiency. Independence is highly valued in this culture. It is both desired and seen as an achievable outcome. It is more important in terms of how we think about ourselves and in how we react to others than in the realities of our lives. Nevertheless, as one of the central ideas in this culture, the perceived autonomy of the individual is key. The third basic value is to be found in the dominance given to the future over both the present and the past. Future implies change, which in and of itself is highly valued. Change is perceived both as always possible and as a consistently desired outcome. Tomorrow will always be bigger and better. The fourth important value is activity. Doing is highly valued in American culture and doing, as opposed to being, is a primary response to almost anything.
These values and the assumptions that flow from them about the nature of reality provide a useful framework against which to think about what it means to be sick or disabled in this culture as well as about how disease is viewed. I also think that less important but inextricably entwined with these values and a significant element in what it means to be ill in this culture is a subsurface and covert belief that disease both reflects and results from an inherent imperfection or flaw in human nature.
Disease and disability do not fit easily within the American value system. There is almost total conflict. As I considered my experience in the light of these values, I began to see some faint glimmers of light illuminating the roots of the conflicts I felt. Suddenly one's experience--who is that I am today--is radically at odds with governing assumptions about reality and life. Part of the difficulty in coming to terms with that break, that discontinuity, is that precisely because I am a part of this society, have been shaped by its values, and have grown up in a world that is bounded by these assumptions, the potential for conflict is so strong. The more I am congruent with my culture and have internalized its dominant thrust, the more conflict there will be when suddenly my experience is at odds with it. The paradox, of course, is that the greater the conflict, the less acknowledgment of it there may be and the stronger the need to overcome or at least to appear to overcome it.
It is at the intersection of this conflict--between American values and disease--that denial arises. In a situation where realities conflict, either one of them must be changed or disregarded or there must be an accommodation and adjustment to the fact of the conflict. In this context, the culture cannot be changed, nor can the fact that one has a disease. Denial is an easier response than its alternative, acceptance. Over time, however, denial is more stressful, requires more energy to maintain, and is ultimately, self-defeating. My initial and primarily intuitive understanding of why hope, arising out of or leading to denial, was such a common response to MS in the books I read began to make sense as I considered this conflict between the reality of chronic disease and the primary values of American society.
One of the first things that a chronic disease such as MS forces one to realize is that nature is not controllable. Yet the belief that nature is, and should be, controllable by humankind is absolutely central to this culture. I have no control over the disease activity in my brain. In and of itself, this is hard enough to accept, but acceptance does come. That acceptance is infinitely harder to achieve, however, when the culture continually--in both small and big ways--tells me that I should be in control, that control is possible, and that accepting or believing that I am not in control is a giving up, a moral failure, and an affirmation of the fact that my nature is flawed.
The conflict between chronic disease and the value given to the future in this culture is fairly straightforward. For me, today is important. I have no way of knowing what will happen to me; the fact that I am walking today is of overriding importance to me. Change would certainly be nice, but if I rely on the possibility of change, the hope of improvement, then I fail to live fully today. Again, this society--in all its voices, books, the media, friends, family, even leftover bits of me--constantly tells me not to give up hope of change and moreover, would have me make that hope a centerpiece of my life. Certainly I hope that a cure for MS will be found but I cannot live in that hope. Given the realities of this disease, chances are very good that the future may not be better; it may not be worse but it is not likely to be better. Yet a very common response to disease in this culture is talk of overcoming it or of conquering it. The stories are legion about people who have "won the battle" against disease. With a chronic disease such as MS, this is not a very helpful approach.
The other aspect of this emphasis on the future that I find to be in conflict with my experience and my expectations is the notion that the future will take care of itself; again, the implication is that the future will be better than the present. My view of the future is radically different now than it was before I knew I had MS. The future has constricted and the range of possibility seems narrower. Of course, I am also rapidly becoming middle-aged and, with age, the future does become less open-ended. This is true for everyone but is much more acute with chronic disease. I am more concerned with providing for the possibilities of the future than with hope of change and improvement.
The possibility, however remote, that I might become more disabled led me to take a large salary cut to get into the federal civil service because I felt it provided the greatest degree of employment security available for the disabled. Others urge me to take bigger career risks in the hope that all will be well and the future will take care of itself. I do not feel that I can do that. There is an element of contradiction here because while I feel I must be cognizant of the worst that might happen and prepare for that, I also feel enormous pressure to live for today, to enjoy life to its fullest while I can. The conflict for me becomes this: if I have some money, do I use it to go to Egypt while I am still able to walk or do I save it for the day when I might be unable to work? In either event, the cultural message that the future will be an improvement over the present is totally at odds with my understanding of reality.
It is certainly true that change is often feared. Nevertheless, even then there remains an underlying belief in and assumption of progress. Things change, they progress; and whether change is welcomed or not, this is one of the most important operating assumptions of this society--of most of the Western world, for that matter. Radiating out from the extraordinary impact of Darwin's work on evolutionary processes into all areas of culture, this belief has permeated our thinking. Change, and in the form of progress, is seen as inevitable. Those with chronic disease live, on whatever level and whether perceived or not, in opposition to this assumption. The progression of disease will not be in a positive direction for the individual.
An outgrowth of this preoccupation with the future is the high value American society gives to time, per se. Time is valuable, time is money. And I can be very slow and get in people's way. On a train in Egypt, my friend and I asked the waiter what time dinner would be served. "Insh'allah," he replied. "OK," we said, "that's fine, we'll be in the club car." "No, no, no," he said. "You'll miss dinner." He had already shown his grave disapproval of two women sitting in the club car for any reason, much less our expressed reasons--to have a drink. "We'll stay," we said, "if dinner is soon." "Oh," he said, "Soon? Dinner will be ... Insh'allah." So we persisted, and every twenty minutes or so one of us would go to our car to check on dinner. The waiter each time said, "Come back, come back." We'd ask if dinner was ready and he, stretched out and smoking a cigarette in the kitchen would smile and say, "Insh'allah." I think we had dinner about three hours later. I loved every moment of Egypt. Time as time has no value there.
The emphasis on doing in this culture is equally in conflict with the experience of a chronic disease such as MS and is closely related to the high value placed on the future. Activity is prized and judgments are based on what one does. The question most often asked at a cocktail party is, "What do you do?" Similarly, "Let's do something about it" or "What are you doing about it?" are stock phrases in this culture. They reflect an understanding about the nature of reality that is widespread. Accepting that there is nothing that can be done and refusing to engage in futile attempts to change what is put one in an uncomfortable position. I hear constantly that acceptance is passive and weak; to rage and fight would be much more acceptable. Doing anything is far more acceptable than doing nothing.
These three primary values--that men and women control nature, that the future will be better, and that activity is the preferred response--are all related. Activity, doing something about it, rests on the understanding that nature can be controlled, something can always be done, and tomorrow will be better than today. Highlighting the future implies the possibility and efficacy of action.
Finally, living with chronic disease makes it impossible to continue to believe that individual autonomy and independence are possible, even if one considers them desirable. Dependence is an all too real and potential outcome. I am not autonomous now; I am dependent on my friends in many ways. Although I value my independence and try to maintain it, I also try to remember that independence, in and of itself, cannot be a central issue for me. I think this is made much more difficult by the fact that dependence carries with it very negative overtones and, indeed, has a negative meaning for me too. Because of this, I tend to go to great lengths to avoid the appearance of dependence and, therefore, make my life more difficult and complicated than it need be. Both the full implications of this issue and its complexity continue to become apparent to me.
The notion that human nature is basically flawed is, I think, connected to the subsurface but strong belief in American culture that disease is a manifestation of a break in the proper scheme of things and, moreover, is a form of punishment. A common response in the face of illness or misfortune is, "What have I done to deserve this?" We do seem to think that there must be a reason for misfortune and that this reason rests at the level of moral cause and effect. If I accept, then, that I have a chronic disease, it seems that I accept the imperfection of my nature. In this context, multiple sclerosis is quite neutral when compared with AIDS, which is overtly seen as a moral outcome and a punishment, or with cancer, which also carries with it some of these connotations. There is a very strong undercurrent to the effect that one gets exactly what one deserves.
On the surface, however, we think of ourselves as viewing disease scientifically, in physical cause-and-effect terms, and it is important to us that we do think this way. We believe that cures for all disease are available; it is only a question of when, and the when ultimately rests on the degree of will and resources we devote to the task. The extraordinary results of modern science and technology support this. A cure for cancer, a vaccine against AIDS, will be found if only we work hard enough. We overtly treat disease as a scientific problem to be solved. We assert that our response to disease is untainted by moral notions of cause and effect and is primarily rational.
We do think that there is no real distinction between our scientific and folk notions of illness and disease. Although we profess to view disease entirely in scientific terms, we actually (if covertly) view it also in moral terms. Disease is both a derangement of the proper relationship of humans to nature--of humankind subjugating nature to its will--and a reflection of that unimproved nature.
It is precisely because disease is covertly viewed as a moral outcome that it is dealt with as a purely physical issue. If we were to acknowledge to ourselves and to each other that we see disease in other than scientific terms, a great many of the things we hold central would be seen as standing on very fragile ground. Our world view, much of what it is most important to us to affirm, would be shaken. I think that there is an enormous discrepancy between how we really think and feel about these things and how we tell ourselves we feel, how we profess to feel. Under the impact of something as personally overwhelming as the knowledge of chronic disease or disability these conflicts become apparent.
There is a clear relationship between the view of disease as a moral issue and religion. Certainly, Judeo-Christian thought has had a significant influence on the development of American culture and values and does continue on some level to be important. And I think it clear that the mainstream religions in this country not only support the conflicts I feel but have added to them. While the theological basis of religion may be viewed as less influential today, the impact of Christianity lies in the ways in which it has contributed to shaping American values and is woven into the entire cultural system. Contemporary American religions do continue to support and legitimate what it is that people want to do and to give an underpinning and a rationale to their fears (for example, the fundamentalist response to AIDS). Religions are constantly re-created in forms that more closely meet the needs of their adherents.
Religion both keeps alive and supports the notion that disease is a moral issue. There is a not very subtle thread in Christianity, which I think has long been entrenched in the culture as a whole, to the effect that disease and suffering are deserved. They are also viewed as good in and of themselves in that they promote a desired moral outcome. Witness Pope John Paul II speaking at Lourdes to an audience of people in wheelchairs and on stretchers, as he urged them to accept their infirmities as a "special mission" and "interior liberation" that lets them lose themselves in divine love "for the sake of humanity."2
A relative of mine, on hearing that I had MS, referred me to Romans 5:3, where St. Paul writes that suffering produces endurance, endurance promotes character, and character, in turn, produces hope. The implication, hard to ignore, was twofold. First, my character needed improving, and I don't think it is far-fetched to see an element of punishment here. After all, were I not in need of improvement, did I not lack character, or were it not deficient, I would not be in need of suffering ultimately to improve it. Second, hope is essential. And, as always, hope, of change or of improvement, seems to be the ultimate goal. Hope is an end in itself.
The notion that disease indicates a flawed relationship with God and is to be accepted as a consequence thereof is also common. If one's nature is flawed, then disease is a reflection of that. But religion also lets everyone off the hook. For the sick or disabled, there is the hope of future redemption and future change, a hope strongly supported by the cultural emphasis on the future. Acceptance is not necessary. Moreover, because hope is the goal and acceptance makes hope unnecessary, acceptance is somehow wrong. The Christian emphasis on hope is clearly related to belief in eternal life; one might even see this as the American emphasis on the future carried to its ultimate degree. In this regard, at least, the two systems fit together very nicely. Eternal life certainly is an important underpinning of hope and, if death is overcome, then it is less important to deal with life as it is.
For society at large, there is both the idea that illness is deserved and the God's-will theory. And if, indeed, disease reflects God's will and is deserved, then why should humans not accept it--as long as it happens to someone else. But the message is very mixed: accept and don't accept. If you are sick, then presumably there is a metaphysical reason for it and that may well be God's will and a reflection of his judgment; on the other hand, hope is the ultimate goal. A reliance on hope obviates the need for any real acceptance. This is very confused and I think the confusion is in the culture. It is another example of a situation in which real clarity would do damage to our basic understanding of ourselves and would force us to question the underpinnings of our belief system. And so we avoid clarity and accept confusion.
The perpetual quest for meaning, which can be so destructive of adjustment to chronic disease or illness of any kind, also arises out of this complex of beliefs. One commonly hears why?--why did this baby die? why is this young woman dying of cancer? People seem to need to find an overarching meaning in these things and construct elaborate edifices to provide it and to protect them from the harshness of reality--Peter Berger's notion of religion as a sacred canopy. For believers, meaning is too easily found in the notion (however unacknowledged and hidden) that disease is punishment, in some manner deserved, or, as St. Paul would have it, that suffering improves character and leads to hope. If hope is the ultimate end, then anything leading to it is meaningful. If I can find a meaning, a reason, then that shelters me and I have much less need to confront and accept reality. The reality that I cannot control the disease activity in my brain, for example, can be obscured if I think that there is meaning and purpose to be found in it.
For some reason the quest for meaning was something I seemed to escape. It never occurred to me to ask why or, more particularly, why me. It happened. It reflected--whatever the etiology of MS turns out to be--a physical event, a malfunctioning of cells. There was no reason why it should not have happened to me. A metaphysical explanation seemed not only irrelevant and unnecessary to me but (assuming I could have come up with a satisfying one) an impediment to full acceptance of present reality. This is what is, it happened to me, and there was not, nor did there need to be, any further meaning. One might ask why I am writing this; is it not a way to give meaning to this experience? Certainly on one level it is, but one of the most important things I have learned is that it is only when one stops trying to find meaning, to assign meaning, that there can be any kind of peace about who and what one is. One of the most difficult aspects of my disease has been the consequences for me of others' need to find meaning in my experience.
I do not believe that, there is a moral issue anywhere to be found in the fact that I have multiple sclerosis. Nevertheless, a conflict is created when, overtly or covertly, society in general frames the experience of disease in moral terms. The analogy that comes to mind is the use of the word "atheism"--being defined in terms of that which one believes not to exist. Equally, when disease is framed as a moral issue, it becomes hard to resist.
An incident that illuminated for me many of these values and conflicts--and carried within it these broad themes--occurred at a party, when a friend, in introducing me to a woman, mentioned my MS. As this woman was leaving, she said to me, "You'll be OK; you're a fighter." I was outraged and offended. Beyond the fact that this woman knew nothing about me was the message, given very loudly and clearly, that the outcome of my disease was in my hands; that it was a question ultimately of character; that acceptance is a sign of weakness. The objective reality of the lesions in my brain seemingly have no part to play. She would not have me accept that whether I walk in five years is beyond my control. She would say fight, fight, fight; believe in the illusion that it is within your control and that if you fail, it is because of lack of strength.
I felt very strongly that in her eyes acceptance was equated with weakness, with lack of character. When failure (for I do believe that she would see an inability to walk as a failure) is seen in these terms, as a moral issue, as reflective of a lack of will and character, then denial becomes almost a psychological necessity. For who, after all, wishes to be deemed a moral failure, a loser?
The intensity of my reaction to this woman is, I am sure, explained in part by my experience during the years preceding my diagnosis when, because there was no "good" reason for my recurrent weakness, I was often treated as though I chose to be weak out of some deficiency of character. I know that I overreact in such situations and that, because of my history, I am defensive. Perhaps I hear too loudly the implication that if "it" can be fought, then "it" is in my mind. At moments like that, I see all too clearly that the diagnosis did not resolve the question of legitimacy for me but only changed the terms. I also realize more clearly the continuing importance of resisting others' definition of my experience. The issue of maintaining integrity is not so different even after one has a label.
I do see the achievement of real acceptance as a struggle but that struggle is internal; it does not involve wrestling with immutable facts. There is not an equation between fighting and giving up. Acceptance is more of a process than a goal, and the desired end for me is to reach some equanimity and equilibrium within the context of what cannot be changed and to retain my self throughout that process. Society, in this instance through this woman, tells me to continue to struggle to change the unchangeable. What is important to remember is that I am, whether I like it or not, in the social world and defined by or, perhaps more accurately, set against others' constructs of reality. As with the earlier analogy, there is no word in common usage except "atheist."
What does it mean to be disabled in the face of those assumptions? It was hard enough for me to come to terms with the reality that I have no control over this disease and no knowledge of how, when, or if it will progress. I have learned to live with some ease (with continuing setbacks in that regard) with who I am and the changes imposed by the fact of multiple sclerosis. It seems in some ways that if I were somehow an isolated entity, me and my disease, I could live with more case. But, of course, that is facile and I am not isolated. I am a part of my society, my experience and my self are affected by it. How does one maintain integrity, a sense of wholeness, in the face of these assumptions, which not only distort one's experience but make acceptance of one's situation very difficult?
The integrity of the person, his or her boundedness, is a Western notion. It might be interesting (although outside my purposes) to consider whether or to what degree the values I have been discussing are a logical outgrowth of this vision of a person as a discrete, self-defined entity. Or whether self as we think of it is a reflection, or a necessary corollary, of these ideas about the nature of reality.
Control over nature, the lack of inherent goodness, autonomy, the centrality of doing, the idea that anything is possible together with the importance of the future--its potential for change--all form a complex within which it would seem that ideally an individual acting autonomously can through the exercise of will and discipline not only control his or her experience but direct it in such a way that the future will inevitably be an improvement. The necessary corollary of all this is that failure is deserved; if these ideas are held to be true and valid notions about the nature of reality, then individual failure (failure to be what one could, should, be?) necessarily reflects defects in character and will.
In my view, the central issue and the continuing task for anyone with a chronic disease is acceptance. It encompasses everything, and its absence--reflected by denial--is also encompassing. The primary cultural values and assumptions taken together (and they are related) all militate against acceptance. If I believe that my MS is a physical event over which I have no control; if I live my life in terms of its given realities and do not rely on hope of change; if I acknowledge that I can do very little about it and more, that who I am is not dependent on what I do; if, finally, I manage to accept that I am not independent--responsible for myself, yes, but clearly unable to live autonomously--then I live at odds with the dominant thrust of my culture.
Self-responsibility, autonomy, material success, and independence are highly valued in American culture. They have been a central part of the American ethos since the country was first settled by Europeans. Reinforced by the Protestant work ethic and Horatio Alger myths, America itself has been symbolic of the notion that with hard work, determination, and a commitment to success, anything is possible for an individual. And, of course, enough people have achieved success in terms commonly recognized as such to keep this dream alive. It is alive for many individuals and also for the country. There is a very strong belief that one can do whatever one wants to do. Many people believe that if you are hungry or poor or unemployed, it is because you simply have not tried hard enough. As a society, we do not want to hear that determination may not be enough; that there are realities that cannot be changed through effort. The poor boy making good through nothing but his own initiative and hard work remains a powerful symbol even in the face of widespread unemployment and hardship. Intuitively, it seems that symbols would lose their power when they overtly conflict with reality, but perhaps they become more powerful than ever.
We, as a society, take great pride in our generosity, our openness. Those who are unable to work, however, are supported at barely subsistence levels. We proclaim the value of work and its rewards, yet there are millions who work full-time and fail to earn enough to raise them out of poverty. Hard work for them does not lead to success. This is an example of an idea that is central to the way in which we perceive ourselves, yet which, in reality, has little to do with the way in which we live, as a nation and as individuals. This kind of conflict has a lot to do with the experience of being chronically ill in this culture. Chronic illness brings one face to face with the conflicts inherent in the underlying structural themes of American culture. One is no longer able to believe in many of the things that are so central to the way in which we perceive ourselves.
Why was the destruction of the Challenger space shuttle such an enormous shock to the American public? We believe that we can do anything, that there are no limits, that strength and will and determination conquer all obstacles. We have an unbridled faith in our ability to do whatever it is we set out to do. The space shuttle disaster is a good example of what we do to avoid seeing limits. We do not want to know that our technological ability is limited; that accidents can and do happen. While with the wisdom of hindsight it seems that this accident might well have been prevented if better judgment had been exercised along the way, the discussion seems to turn on just that point focusing on individual failures in leadership and judgment. There has been very little acknowledgment that in enterprises of this nature accidents are inevitable.
As a society, we believe that control is possible on both an individual and a social level. Outcomes can be controlled. Results can be determined. Failure is always the result of a lack of will, of determination, ultimately of character. Seen in these terms, failure can bring nothing else than a moral judgment. We, as a group, do not generally acknowledge limits or see any failure as a simple coming up against reality.
The anger of those closest to me when confronted with the fact of my disease is also reflective of this very powerful assumption that control is possible and desirable. I think it is primarily because of the pervasiveness of this belief that, for example, Nick's anger was so extreme. I was sick and there was absolutely nothing he could do about it, yet his instinctive response was to take action, and this response came out of a belief that there is always something that can be done, that action is the appropriate response. To acknowledge lack of control, of the power to change things, is terrifying in its implications. We are not used to doing so. We tend to go to great lengths to avoid it. To do otherwise would involve coming to terms with the ways in which our most cherished beliefs about ourselves and our culture conflict with reality.
The values of control and independence are closely related. If it is important to believe that one is independent and self-sufficient, then one almost has to believe that one can control one's life. Conversely, if control is possible, so is independence. If I am independent and self-sufficient and believe I can control my life, then anything is possible. To admit that there are things that are not possible, things that cannot be changed, would bring the whole edifice tumbling down. I could no longer believe I am in control and would thus be incapable of maintaining the fiction of my independence and self-sufficiency.
I am reminded of an acquaintance with MS who travels all over the world in search of a cure. She spends thousands of dollars on patently sham treatments. She won't see a doctor, however, because "they won't do anything for me, they can't help me" and she cannot acknowledge that an answer is unavailable.
The scene at the airport in Luxor that I described earlier perfectly captures for me the working out of these values. That scene's starkness as a metaphor arises out of contrast--a small group of people actively creating their own world governed by classically American values set down in the midst of a diametrically different culture.
I have been forced to accept that I have no control over--and no knowledge of--the course of this disease; that is a fact and one that I would ignore only at my peril. My psychological and emotional well-being depends on my having come to terms with the fact that I cannot control what happens to me, that no amount (and I don't claim all that much) of strength and determination is going to affect my ability to walk. Those old Americans in Luxor would have me deny that. They would have me believe that I do have control and that the outcome is dependent on my reserves of determination and will and strength.
It is partly because of this belief that, as I have said, in a very hidden, unacknowledged way, illness and disease are seen in moral, not physical, terms. Disease does exist. It cannot be comfortably acknowledged or given a place within this broad cultural framework. It must be seen as somehow anomalous. The answer is to see disease and disability as a moral outcome and as a punishment even while we profess to view it scientifically. This makes it possible, if what is seen as a desired outcome is not achieved, to believe that it results from lack of will, lack of determination.
While acceptance carries with it the implication of weakness in this culture, denial connotes strength, a fighting against, a refusal to give in. Therein lies a conflict. The primary task--and the most difficult--facing anyone with a chronic disease is acceptance. It encompasses everything else. But, as I have tried to show, the most basic and deeply held values and assumptions of this culture militate against acceptance. If I accept the full implications of the realities imposed by the fact of my multiple sclerosis, I am living in conflict with those values. If I accept what I think I must accept, I am judged and found wanting by society. I come up squarely against the most important cultural myths and assumptions. My disease reflects the imperfection of my nature; it indicates a lack of control where we need and would like to believe that we have control; it forces me to believe that tomorrow will not necessarily be better; it is something I can "do" nothing about; and it calls into question my autonomy and independence.
The assumptions that seemed to me to be paramount and controlling in the books about MS--the emphasis on physical factors and responses, the reliance on hope, the seemingly essential optimism--are not only explicable but inevitable once one considers the cultural frame. I think it becomes clear that as acceptance is an encompassing umbrella for what is necessary to adjust to chronic disease, so denial encompasses the range of responses that would be, broadly speaking, culturally acceptable. It is those responses, consequently, that are emphasized in most books about MS. For example, the emphasis on physical factors in most of what I read seems clearly to be both a result of and a response to the cultural values I have identified. If one believes that only physical adjustment is necessary, then one is both reflecting the imperatives of this culture and denying their deeper implications.
I feel as though I am continually faced by the judgment that my disability is a moral outcome, not an objective reality. If I were to deny the implications of my disease, were to struggle and fight against the reality of my disability, were to rely on hope as a response and a way out, I would be more in tune with my culture and would be viewed in a more favorable light by most people.
This, then, is the cultural framework--very broadly and superficially drawn--within which the experience of chronic illness fits or does not fit. The primary themes--self-determination, individualism, materialism--do structure experience. It is important to realize that even as individuals hold other values to be paramount or feel themselves to be outside or beyond the reach of the world shaped by these values, they are still subject to and influenced by that framework--as the nature and shape of a counterculture is bound to be dominated, if not determined, by the nature of the culture to which it is a reaction.
I think that all of these factors and the reasons for them explain, at least in part, my sense of comfort and ease in the Middle East. This is a very superficial reading of another culture, but I think it was, in essence, the sense one has in Egypt that what has happened has happened, what will happen will happen, that was so congruent with my understanding and acceptance of what has happened to me and made being there so very easy and comfortable for me. Here almost everything conflicts to a greater or lesser degree with my intuitive understanding of what I need to do and be to live with this disease.
Acceptance and living without hope, as I envision it, do not mean living in despair. Rather, it means looking at one's life and the range of possible outcomes with clear eyes. When I look at myself and my life without illusion, without false hope of change, then and only then can I live fully and positively. I think there is great freedom and a rare kind of peace to be found in acceptance that, for me at any rate, is essential.
I realize, on reading this, that I have conveyed the impression that life, for me, is a constant battle. That is certainly not the case. There are many days and many ways in which the fact of my MS is not relevant to my daily life. But there is also a very real and omnipresent way in which I feel that the society I live in would like to ignore the realities of
my life and, barring that, would have me ignore them so that I am not an affront to other people's sensibilities and more, do not cause them to question the basic underpinnings of their vision of the nature of reality. I can accept the disease or I can accept the dominant values of this society; I doubt it is possible to do both.
American culture is not going to change significantly--at least in my lifetime--and I will continue to be a part of American society. It was crucial for me to try to understand the cultural framework within which I live in order to comprehend why people act the way they do. The more I understand the elements that structure my experience, the easier it is to come to terms with it. Understanding is essential to acceptance.