Chronically Ill in America
Illness is the night-side
a more onerous citizenship.
The clarity provided by the diagnosis does, of course, remain and its power to affirm me as an individual was real. But as I gained some understanding of the ways in which the chronically ill are affected by American values, I began to see more clearly the limits of that clarity and that event that had so much power for me. The values that underlie American culture are a central part of the framework within which I live and within which disease and disability must fit, however awkwardly. The social and cultural conflicts I described earlier are, in a sense, general. The more specific individual conflicts are framed by those values; one cannot live a life shaped by disease without becoming aware that its reality is in conflict with the general thrust of this culture.
My experience has been and continues to be shaped and colored by living within this world view. Certainly, as I said, it is not an omnipresent battle, but it does underlie my experience. Seeing that larger context eased the process of coming to terms with what MS meant to me. Knowledge is not explanation but it is necessary. I do in the end remain who I am beyond anyone's definition, but it is easy to forget that. Understanding the cultural dynamics eases the process.
Once I had some awareness of this cultural framework and its impact on the diseased and disabled, the controversy about language began to make some intuitive sense to me as reflecting the impact of the primary values of this culture on the disabled. I began to understand some of what lies behind this often heated debate about language. Clearly there is a level at which it is irrelevant. So I am now a cripple or disabled or handicapped. All of those words are labels and not very useful ones. They convey little information beyond stereotypical images. I still find it difficult to think the choice of words matters very much, but I do begin to understand what lies behind the debate.
The words in and of themselves are very interesting, as is the continuing controversy over their use. There is some information about the social reality of disease to be found in these words. One source says, "Being handicapped is a social term with negative connotations which foster images of helplessness."1 The preferred term is "disabled." I went to the dictionary and discovered that "disabled" means "incapacitated by illness" and a disability is an "inability to pursue an occupation because of physical or mental impairment." A "cripple" is a "lame or partly disabled person" and, secondarily, "something flawed or imperfect." A "handicap" is "a disadvantage that makes achievement unusually difficult."
Given these definitions, I prefer "handicapped" or even "crippled." Either word is both more accurate and more pointed. "Disabled" or "disability" has more of a legal connotation. But all of the fuss over nomenclature is another example of the social/cultural attitudes which impede adjustment to a disease such as MS. I am handicapped. I am not exactly like a healthy person. Just as in a horse race, I am carrying more weight (in a manner of speaking) and, therefore, I use more energy to go the same distance. That is a reality. If one is less able to manage, why the imperative to deny it with euphemistic and ever vaguer expressions? "Images of helplessness"--why? And beyond that, why, if one does need help, is that need viewed so negatively?
But, of course, I find that this line of thought does inevitably circle round; I see it in myself. No, I am not the same as everyone else and I often wish there was some acknowledgment of that fact. On a bad day, it would be nice if someone noticed very hard it can be for me just to be at work. On the other hand, I do want to be seen as acceptable, as whole, and not as "other than." Even when I objectively need help, I resist asking for it.
I think the dislike of the word "handicapped" is indicative of this conflict--a desire to be treated at one and the same time as both different and as the same. The preferred (if unlikely) outcome, of course, is for the other to make it possible for that to happen. In many ways it is I, the culture working through and reflected in me, who negatively loads the words and creates the conflicts. The culture is not only an external operating force. If I were an alien, would I feel these conflicts at all? Perhaps, but not perhaps in the same way.
The Special Olympics is a good example of this--different and yet the same. The event expresses competition, the need to excel and win, to demonstrate endurance--a desire to show that the disabled are driven by the same forces and values as everyone else. It demonstrates the values of the culture writ plain, albeit in a very protected environment. It might also be said that institutions such as the Special Olympics provide an opportunity for participants to live up to their potential, unhindered by external, artificial constraints. However, it remains an example of an attempt to ignore the fact that the handicapped are different.
I think the issue of the handicapped's access to public facilities comes in here, too. While I have become very sensitive to that issue and know that I may be in a wheelchair one day, I have real difficulty in accepting the notion that society should bear the enormous cost involved in making all facilities accessible to the handicapped. As I see it, however, all of this--language, institutions such as the Special Olympics, the access question--represents a blurring and a reflection of the desire on the part of both society and the handicapped individual to create a situation in which people are the same, or to pretend that they are. It is also a way to both deny and, on one level, deal with some of the conflicts raised.
We do not, in this culture, deal easily or well with the weak and dependent. We are not straightforward; we view these conditions through the mist of our values. We see them not as purely physical and objective conditions but as reflecting, in part, a moral issue. Weakness is a metaphor for failure; we do see weakness in terms of failure. Metaphor both creates and recreates social reality; it organizes experience. But we are not honest about this response. To mask this, language must be misused, boundaries blurred. We do the same thing with death.
Of course, beyond the culture and beyond words, I am who I am and in some essential way remain beyond the reach of the judgments of others. There always remains a sense in which those judgments are not relevant to me. But those judgments, equally, are what I am talking about. It is because I feel that physical weakness is often seen as moral weakness that it becomes difficult to accept. Rarely is there a sense that weakness is a legitimate response and thus, for the individual, giving in, even accepting, becomes an internal question of some magnitude. Why else do I insist on my essential OK-ness and accept in some way as my own other people's definition of that? Why else do children compete in the Special Olympics if not to prove that they, too, hold as central, and are driven by the same values as the rest of the populace? This is an intensely competitive, success-oriented, and materialistic society. But those values are not my values and those judgments cease to be of consequence at some level. Life at its most basic, at its center, is untouched. Nonetheless, I do live with and within the prevalent value system of this culture. I have found through my experience with MS that I cannot remain aloof from or untouched by the consequences of this value structure for those who through disease or disability are placed at odds with the general thrust of this culture.
Beyond generalities, what of daily life? The issues and conflicts that more directly shape and impinge on my day-to-day life arise in large measure out of these values and can clearly be traced to them. These more daily conflicts and issues are, in some ways, subsidiary to the larger conflicts I identified and are certainly less abstract. With time I realized that most of what is most problematic for me is subsumed by the issue of dependence and the strength/weakness dilemma. These conflicts became clearer and to a degree more manageable when I saw them as resulting from the cultural system as a whole; I could then place them in a larger framework and begin to understand them.
Again, to the degree that this process of acceptance and adjustment appears repetitive and circular, it is because it both was and is. The initial shock and adjustments to the fact that I had a chronic disease were, I think, necessarily very personal. Even the impact on my relationships and the adjustments required by that impact were initially intensely personal. It was not until I had reached a new level of equilibrium and moved out into the world, so to speak, that I became aware of how significantly my diagnosis had altered the social terrain for me. Far from resolving everything, the terms of the struggle to maintain integrity had merely shifted--from the personal to the social and cultural.
Once that became clear to me, it was also apparent that there was far more to acceptance than I had thought. As I began to understand the broader implications of being sick in this culture and began to see that more was required than acceptance and adjustment on a personal level, I had to go back. Before I could really come to terms with the issue of dependence, for example, I had to look at it and at myself in the context of those cultural values I talked about. My own adjustment had to incorporate that new understanding. It was not just a personal issue. And so, in a sense, I had to recapitulate those initial adjustments to incorporate those social and cultural aspects.
I have tried to outline some of what underlies and shapes the individual conflicts that seem so crucially important if one is truly to come to terms with and adjust to the full implications of being chronically ill in this culture. These conflicts are complicated by the cultural milieu in which I live; they are further complicated by the sense of uncertainty and vulnerability I tried to elucidate; and, of course, by the particular circumstances of my life, or of anyone's. An issue such as dependence involves all of these factors. Clearly, my own uncertain understanding of dependence or any other conflict is based on my own experience. And, a neurological disorder necessarily invokes fundamental questions of self.
It is, of course, my own experience that has led me to raise these questions. Equally, it is only that experience that I can speak of or from. On the other hand, I wonder if the conclusions I have drawn are generalizable. It is perhaps the structure of my life that has highlighted these issues for me; if my life were different, perhaps their clarity would be obscured. But I do wonder whether my thinking about the experience of chronic illness is so shaped by the particular circumstances of my life as to be idiosyncratic.
I think it is possible that living through those years when I did not know what was wrong with me and, over time, becoming aware of the ways in which that experience affected my relationships enabled me to see more clearly, after the diagnosis, some of the impact of MS on relationships. Because of the experience with not knowing, the effects of knowing were highlighted. My awareness of the impact of the disease on my sense of self-worth, for example, and the implications of the social construction of disease were all perhaps clearer because of those years. I had had time to get used to the need to maintain personal integrity in the face of disbelief and disapprobation, so being faced with the social position that seems to go along with disease and disability in this culture was not so very different. And in many ways, of course, it was much clearer than what had happened to me over all those years.
As I have mentioned, my ex-husband and I are very close. In the years since my diagnosis, he has stood by me in every conceivable way, offering help and support and a kind of love that is very rare. During those years, I had another relationship that was central to me in a different kind of way. Although constrained by circumstances, it was strong, enduring, and sustaining. I am very well loved. Yet neither of those two relationships, for all their importance to me, was complete or very ordinary--in the sense of sharing life in all its dailiness. I spent much time alone during those years and that solitude was important; it forced me to come to terms with my fears and to see my dependence, real and potential, starkly and in relief against those relationships. I think that my solitude, together with those two relationships, so central and yet each incomplete, gave me a clarity that otherwise might have taken me longer to achieve. The dynamics were clear.
I think there is a sense in which I became more quickly aware of some of the implications of chronic disease for relationships because of these circumstances than if I had been in a more conventional marriage or relationship. These two relationships were voluntary, as it were; I have always been aware that being with me even at my neediest has been a choice rather than a requirement following on a commitment made in ignorance. I am always very aware, for example, that what is given is a gift; there is no framework of custom or duty which mandates the help that is offered. My sometime discomfort at receiving (or is it needing?) help is also highlighted by these circumstances.
If I were, it sometimes seems, in a marriage bound and informed by a stated commitment, I would more likely expect a certain level of support and help and might not see the dynamics involved so clearly. I think perhaps the inevitable resentment and anger might be more hidden and my awareness of exactly what is being given and asked for might be diminished. It is also possible that, within a marriage, my husband would feel so trapped and obligated that he would be unable to see how much of what he gave was, in fact, a gift.
Those who are closest to me have also had to come to terms with and accept the possibility of my dependence. It was a long time before I saw this from their point of view--my level of self-absorption was fairly high. Suddenly, they were faced with the real possibility of a future never before conceived. And just as I did, those who love me best have to come to terms with that.
Fear, my own and another's, is another part of this complex that I think I have seen more clearly in these circumstances. Just as the fact of a marriage might obscure the reality of what is given and what is asked for, so I think it might make it harder to acknowledge the fear that is an inevitable part of a disease such as MS. I have found it very easy in these two relationships to be open about my fears. That may well be a reflection of the nature of those men or those relationships but I intuitively feel that the presence of a legal tie might inhibit the expression, on both sides, of fear of what might happen and that the resulting denial would have devastating consequences.
Nick and I are divorced, and we have not discussed in depth all the implications of my potentially increasing dependence. I know that if I am in need, he will help me if he is able. The importance of that knowledge is enormous. And over the years he has lived with my weakness. Perhaps the very absence of a legal tie robs the question of much of its potency. What he offers, and it is ongoing and significant, is clearly a gift, freely given.
The other man I love and I have discussed my potential dependence. What would happen if we were together and I became very ill? This is a hypothetical question and perhaps because of that discussed more freely. I have been moved by his honesty in talking about the whole complex range of feelings and responses that are inevitable over time in a relationship in which one person is physically dependent--the guilt, anger, resentment.
None of what I have said is meant to suggest that I think a marriage relationship cannot absorb and even be strengthened by the presence of chronic illness. But I do think that had 1, at least, been married at the time of my diagnosis, it would have taken much longer to achieve clarity about exactly what is at issue. Looking back, I feel very lucky that I had these two extraordinary relationships through which I could see so clearly the impact of my MS. What has been given to me is a gift and in the freedom of those gifts, both the giving and the receiving, there was great clarity.
I feel very strongly, and perhaps wrongly, that with the level of honesty and trust I have known in these two relationships, almost anything is survivable. And that the worst that might happen could be lived with and lived with well if there is that honesty and trust and an openness about what is happening to each other. Dependence puts enormous strain on a relationship and it is complicated both by our own experience of it and by its social construction. We do see it through the filter of those cultural values. But I think it is possible to separate the various structural elements. I can, with some effort, see the distinction between the reality of my dependence in a particular relationship and the ways in which 1, and others, tend to overload that reality with common understandings and reactions to dependence. That is essential.
On a personal level, it seems clear that the best one can do is to accept that in a relationship framed by chronic disease will be fear, guilt, anger, resentment--on both sides--to be aware of that possibility, even that certainty, and to openly acknowledge those feelings when they exist. I can think of nothing worse than sensing the presence of anger and resentment and not being able to bring those feelings into the open.
For all my talk of acceptance, physical dependence remains my worst fear, partly because of these inevitable feelings. Despite my understanding, I continue to muddle relationships because of that fear. An example of that is my need for certainty in my emotional life. I know its roots and I know, too, that there is no certainty in life. Nevertheless, it gets in my way. All I can do is hold the awareness of that need in my consciousness and try not to let it muddle my relationships. A commitment to absolute honesty, again on both sides, seems essential to me. It is the only response to a situation that will not go away. During those years, it was those two so different relationships, set against my solitude, which helped me to see more clearly than I might otherwise have done some of the consequences of my MS.
The image of the rock that I referred to earlier persists in my mind. The fact of my MS and, more important, the possibilities inherent in it is a rock thrown into the pool of all my relationships. There are two outcomes, only one to be desired. The first is when the stream feeding the pool re-forms around the rock and new currents and eddies are created so that the rock becomes integrated, a new part of the pool. The other is when the rock, perhaps too large for that pool, becomes an obstruction--twigs and leaves are caught up against it and the water begins to back up. The rock then becomes the dominant element in the pool and the pool, unable to absorb it and integrate it into its life, begins to die. Whatever the outcome, that rock is there.
It is out of my own experience that what I have of awareness and clarity has arisen. Seeing my own culture as an outsider--in relief--showed me its broad outlines, its structural elements. The simple, objective, and in itself meaningless act of receiving a diagnosis, illuminated the power that basic assumptions about reality and common understandings of disease and disability (my own as well as others') have to redefine and alter experience. It is in the daily low-level assumptions that so strongly color our lives and which flow out of the broader values I talked about earlier that the conflicts I find so central to my life arise.
Once diagnosed, I was suddenly subject to and the object of common knowledge and understandings of disease, common expectations of role behavior, labeling, and the transforming, legitimating, and limiting power of a label. All these factors combined to change my personal reality. Generally speaking, it seems that people do not differentiate between disease and illness or, more particularly, between chronic disease and illness; all ailments are viewed as though they are illnesses. Illness tends to be seen as a discrete episode with a beginning and an end. One recovers or one dies. MS, or chronic disease of any kind, confounds these expectations. I have a disease, I am "disabled" in some ways, and yet I am generally "well." And even on my worst days, I am not "ill" in any conventional sense.
Labeling does occur and it has both positive and negative consequences. Once one is labeled, there is a set of behavior which is explicable and a defined expectation level. I have MS and people, knowing that, accept as natural or inevitable certain consequences. There is a level of explanation that already exists. On the other hand, because of these common understandings of disease, there are many who insist on treating me as sick and who try to force me to conform to their understanding of that role. There are also those who, because I do not fit their understanding of what being sick means, refuse to acknowledge that I may be limited in any way.
When I was first diagnosed I had great difficulty with all of this. I often felt--regardless of which side of this equation someone was on--that I was forgotten. It seemed to me then that people looked at me and saw MS and, depending upon their understanding of MS and what it meant, reacted accordingly. This still happens, of course; I understand it a bit better but essentially all that has changed is that I go my own way. I no longer feel lost behind that screen--which is not to imply that my frustration has disappeared.
The fact remains, however, that once labeled, there are powerful cultural forces at play. The label of disease does carry with it expectations of behavior. There is a sick role, so to speak. There is a very low tolerance in this culture for ambiguity. We prefer situations to be defined, statuses to be clear. We want immediate answers and clear-cut resolutions. Our attention span is short--on both a national and a personal level. Once we think we have an answer, we would like to forget the question. We stereotype and classify because it is easier, because we do have difficulty with uncertainty, and because in many ways it is easier to deal with an idea of a person than with that individual. If I can classify you and reify you, then I don't have to see you, much less deal with your ever-changing and messy reality. There is, correspondingly, very little tolerance of those who float in and out of a role or a status. People do want certainty and, in search of that, attempt to pigeonhole each other. Once one is placed in that pigeonhole, people generally tend to want one to stay there. It can be difficult to resist that pressure.
On a day-to-day level, and even with those I am closest to, I find that the inherent instability of this disease and its everchanging effects on me can enormously complicate life and relationships. A very small example of this comes from my tendency to walk into walls and lose my balance. There are many times, though, when my balance is fine. On those days, when I might stand on a chair and change a light bulb, I dislike intensely the fact that Nick watches me so closely in the fear that I might fall and that he worries. He, who knows me so well, has great difficulty with the uncertain effects of this disease on me. It would be much easier, in some ways, if I am to be sick that I be truly and unchangingly sick. And I do not want to be watched. Yet I have fallen many times in the last few years and I have always been glad when someone has picked me up. Nick assumes that I might fall and, as a result, is very protective and watchful. I assume I won't and want to be left alone. Yet I want someone ready to pick me up if I do fall. All very unreasonable.
Of course, this is all further complicated by my own understandings of who and what I am. I do not wish to be treated as though I am sick. However, I find that I would like people to quietly notice and make allowances on those days when normal functioning is very difficult. I resent equally those who make an enormous fuss over me and those who ignore my difficulty. I so clearly want it both ways and yet I am very aware of how unreasonable an expectation that is.
All of the above--roles, labeling, and their consequences--result from and are complicated by the assumptions and broad cultural values I identified. Underlying most of the conflicts I feel is the issue of strength and weakness, which I have come to see as the central dilemma posed for me by MS. This dilemma is shaped both by prevailing cultural values and my internalization of and response to those values. Going back to language, I am told that "handicapped" is an undesirable term because it connotes helplessness. Now, helplessness is an extreme state and I do not come close to approaching that. Yet my disease does impede my ability to function. Why then, the need to deny that? What is wrong with acknowledging weakness if it is real? And I do see in myself both that tendency and the ways in which it unnecessarily complicates my life.
I am sitting here at my word processor and my legs are feeling at one and the same time like lead and like cotton wool. I feel as though I shall never be able to move them again. (They do, however, move when I summon the energy--they have not yet ceased to be responsive.) Nick has taken my list and gone to the supermarket. He enjoys shopping; I do not. It would be difficult, today, for me to do that chore. He has, so far as I can tell, done it gladly. Yet I have trouble accepting his gift and as far as I know, it is my difficulty, not at all a problem for him. This is a minor but good example of one of the things I have had most trouble with in adjusting to the impact of MS. It interests me because I think if I fully understand exactly what is involved in a situation of this kind, I may be able to understand more clearly those situations which are not so minor.
I have great difficulty asking for help; I have difficulty (though to a lesser degree) accepting it. I don't want to be seen as a whiner; I certainly never want to use my weakness (however legitimate and real) as a manipulative tool. I don't want to be seen as weak even when I am weak. I think all of this flows out of my perception of how people in general interpret weakness. It also reflects my own acceptance on some level of the extremely negative cultural bias against weakness. A survey of acquaintances showed that strength connotes good, active, competence, independence, hardness, and male. Weakness connotes passivity, illness, softness, bad, inadequate, and female. In this context I think it is clear that the stereotypes of women and of disability are reinforcing.
The strength/weakness dilemma has so many elements and is so complex and confusing that I have had great difficulty thinking it through. This is magnified by the reality that, for me, this is a continuing and daily conflict. It may seem to be clear and resolved and then I turn around and there it is again, usually in a new form. At its most basic, it is a question of maintaining integrity in the face of one's awareness that physical weakness is equated with, or at least inextricably entwined with, moral weakness. This dilemma seems a perfect example of acceptance as process; a continued living of acceptance and in that living, continued discovery.
Looking at my experience before and after my diagnosis, I assumed, as I have said, that much would be illuminated and clarified by that event. And there was some new clarity. But there were also new layers of cloud. Afterward, to be sure, my experience--redefined--was in a sense legitimated. My actions and perceptions were retroactively affirmed, my history given a different cast. There were, too, immediate benefits. My "weakness" was legitimated, but benefits always have their cost and I remain loath to claim them.
It became very clear--once an explanation of my history was available--exactly how loaded weakness is in this culture. Before my diagnosis it had not been enough for me to be who I was. There had been no acceptance of the reality that I was weak and sick. It had to be labeled and, hence, legitimized to be acceptable--culturally legitimated. In this culture, that demanded, in part, rational explanation. Because for years there was no rational explanation for my weakness, it was in a very real way unacceptable. Once there was a disease label attached to me, the external framework changed. Others' perceptions of me changed radically and, in their eyes, I was suddenly different. At first it seemed as though this was very straightforward. There were objective and legitimate explanations for my weakness. As the years passed, however, I became very aware of the limits to that clarity.
How naive of me it was to think that a label would resolve everything. It merely moved everything to a new level, beyond me in some ways and in others, back to me. After receiving a diagnosis, the conflict between strength and weakness became more my conflict. Before then, I had been forcibly shaped by it, now it is more mine. But the structure of the conflict is clearer. Sickness itself is viewed, in a fairly covert way, as weakness-it has a moral cast. Weakness, however legitimate, is not legitimate.
I know, too, that it is precisely because of my history that even such "legitimated" weakness is difficult for me to deal with. I learned during all those years to expect that phrase, "It's all in your head." There is a level at which I am still wary of hearing that and tend to be defensive even when I need not be. And, as with the uncertainty, the power of the diagnosis as event to illuminate the issue of weakness has been shown with time to be limited. As on both sides of the diagnosis there was uncertainty, so on both sides there remains the issue of weakness. I view it differently; the prism did change. But here, too, while everything changed, everything remained the same.
The roots of this conflict are perhaps in the end not so very important. For a brilliant discussion of the social construction of disease, see Susan Sontag's Illness as Metaphor.) Their significance to me reflects my full participation in the culturally constructed notion that there needs to be and that there is rationality in explanation. I have been intrigued by a notion which, as so many of these ideas do, strikes one as fresh and new but which, of course, is perfectly obvious once it has been pointed out. This notion is that there is a "fundamental incompatibility between the rationale for many customary ideas and rules, and our culturally constructed notion of rationality as a universal power of the mind unaffected by cultural variation." 2 I think this is very relevant here. Many of the values and, indeed, responses that I have been talking about are, perhaps, not either rooted in or reducible to reason. And yet I find myself searching for those rational explanations or reasons; it is almost as if I believe that in reasonable explanation there is power.
One result of that continuing search is the knowledge that explanation, even when available, does fail. There is some comfort to be found in explanation but not, in the end, much power. Seeing the conflicts I feel and to some degree understanding their roots makes clear that while explanation does help, it clearly has its limits. Why is it so hard to acknowledge weakness? Once one sees why that is, shouldn't it then be easy to say OK, and move away from that? It doesn't seem to work that way. Understanding does not lead inevitably to resolution.
The central reality is that the constellation found in the concepts of strength and weakness presents me with, or creates for me a daily and constant battle. Showing weakness, acknowledging it, is very difficult for me. My slowly emerging understanding of why that is does not always seem to change that reality. Again, this is in some measure because of my history; that is not something that fades easily. Beyond that and, of course, inextricably mixed with my own psychological makeup, are the cultural strands and, on an immediate level, the quality and content of interpersonal relationships.
As I have said before (but then it cannot be said too often), one of the difficulties with MS is that it can be generally invisible and there is no end to it; its legitimacy can therefore be doubtful. My statement of how I am feeling on a given day is not generally supported by anything visible. I have sometimes found myself longing for a broken leg. (And then thought, how completely neurotic.) But then I would have a very visible ailment, one with a discrete beginning and ending. People would respect that. I could legitimately go to bed for a week and rest. The fatigue associated with MS is almost invisible; there will always be those who question its reality and I find that very difficult.
An August weekend with close friends had been planned for months. I had committed myself to this visit and had a nonrefundable airplane ticket. The summer was long and hot and I had a progressively difficult time functioning. As the weekend approached, I was weaker than ever. I did not go on that trip; I lacked the strength. I wasn't sure that my friends understood. I was afraid that they thought I merely chose not to make that trip for other reasons. But because I know I tend to be defensive, having learned that many people do not see the effects of MS on me as constituting a valid excuse for anything, I was left uncertain. This is another example of how limited, in practice, the diagnosis turned out to be. The clarity I welcomed has its limits. And it becomes very circular--your reactions, my reactions to those, my expectation of your reactions--all of which tends to obscure what you are really thinking.
This is a self-propelled world in which things get done. Those who are well work and do all the other ordinary tasks of life whether or not they want to. If someone is sick, then they are given an exemption and there is no resentment. But if one is on the border, neither actively sick nor well, that is culturally problematic. The leaves do have to be raked (or so some people believe). One part of this dynamic that troubles me is its inherent potential for manipulation. It is very real; I am the only one who really knows how I feel on a given day, and it is not generally reflected in my appearance. I have, on occasion, used the excuse of MS to get out of things. I try very hard to be aware of this potential and to be manipulative only if I am conscious of it, but I think even that level of dishonesty creates problems. There is a point at which being conscious of the potential for manipulation and attempting to avoid it strikes me as in and of itself manipulative. A conundrum for which I have no answer.
At those times when I have been forced to use a cane to walk any distance, I have become aware that it acts as a labeler of sorts. It provides a level of explanation, as it were, that gives a sort of standing. If I stumble or fall using a cane, people do not react as though I am intoxicated. On the other hand, I am reluctant to use a cane even when I need one because I do not like being labeled or slotted. Legitimacy, yes, but one is then set apart and is face to face with common expectations of disease and disability. Costs and benefits--and another example of how much I want to have it both ways. Claiming the benefits requires clarity about the dynamics involved.
I think a part of the strength/weakness dilemma for me is directly related to this. It is exactly because the legitimacy of my weakness is in question that many times I have difficulty acknowledging it to others. Beyond that, I know that people have great difficulty with ambiguity. Once categorized, there is a whole set of common expectations of behavior that comes into play. These expectations differ as to disease and disability, as I said before. Disease is seen as having two outcomes--recovery or death. Disability is seen as being relatively stable and changing only for the worse. When one day I need a cane to walk with any ease and on the next I walk fairly normally, expectations are confounded. There is no slot into which I fit and that presents difficulties for me and for others. My status is not fixed. MS is a disease but it does not fit easily into folk categories of disease; it has disabled me but that disability is ever-changing and, moreover, is not always reflected in my appearance.
I have an extraordinarily difficult time calling my office to say I am sick. There are three related parts to this difficulty. The first is how to know myself whether on a given day I should rest or try to struggle through. The second is that I worry that I will not have enough sick leave when I need it. At those times when it is most difficult for me to function, I am most reluctant to use sick leave because I am afraid I will need it more next week or next month. The weaker I am, the more I wonder if I will be even weaker later on. The third reason for my reluctance is a lingering feeling that I will be suspected of malingering. I am most apt to call in sick on Fridays, which is logical enough because during a period of reintensification each succeeding day takes its toll. But everyone (and with reason) is suspicious of a worker taking sick leave on a Friday. The result of all this is that I feet defensive even when there is not only no real reason for it but when the people around me are very supportive and give me no reason to think they distrust me. Once again, I create the difficulty for myself.
Because strength and weakness are so loaded in this culture and so bound up with our notions of maleness and femaleness, individuality and independence, when one is neither physically strong nor weak but in a constant state of flux, there are continuing social consequences. I have sometimes thought that if only things would stay the same, I could more easily adjust. But, of course, that is not the case. It is only as I have begun to understand how strong are the templates we carry in our minds--and they are all slightly different--of what disease and disability mean and their implications and how difficult it is to go beyond them that I can begin to accept those implications. It is not particularly easy for me to have to struggle to walk one day and the next walk fairly easily. I can't categorize myself. How much harder it is for those around me.
There is another aspect to the conflicts I feel surrounding the issue of strength and weakness that seems to be common among those I have talked to about this issue. It is a very intense feeling that if one gives in to weakness, one will become weaker. I find that on those days when I am weakest, my instinctive response seems to be to try to do more. That response, I believe, arises out of the fear of dependence, and that fear has a lot to do with the strong negative connotations of dependence in this culture.
Dependence is not something we in this culture easily or openly acknowledge. We prefer to ignore or mask the fact that we are all dependent in many unavoidable and, indeed, good ways. Independence is a highly desired and valued goal; it is closely related to the centrality of the individual and all that flows therefrom. We cherish ndependence and strength and they are closely entwined--strength is viewed as leading to or permitting independence. Conversely, weakness leads to dependence and both are seen as highly undesirable states. Notwithstanding that true mutuality, involving both independence and dependence, is a sine qua non of life and of all interpersonal relationships, our mythology glorifies individual independence.
There is, too, a crucial distinction between physical and nonphysical dependence. On an individual level, it seems that when I was not dependent, I could be dependent or that when I was strong, weakness was, in a sense, permissible. The difference seems to lie in the fact of one's real and physical dependence; the illusion, for that is what it is, of choice is lost. One is unable to retain the belief that if only one chose, one could be independent. And it is exactly because I am dependent in new ways and, more crucially, potentially dependent, that I fight against it. When dependence was not so real, I could more easily achieve true mutuality in relationships--giving and taking and needs were more balanced. Now there is an area in which I continue to be dependent and it skews the balance.
I am reminded of the berdache of certain North American Indian groups. The berdache were men who voluntarily took on the role and status of women and who were so regarded by their community. They were reputed to be excellent wives. They were said to perform women's tasks better than the women did because they were still men and were expected to excel in all things. They could be good women because they were not women. I could deal with dependence when I was not (in such a clear-cut way) dependent; now that I am, and ndependence is not an option, I am not very good at it at all.
Quite clearly at play here are power and control and fear. On a grand scale, I have no illusions of my ability to control much of anything, nor do I have any real desire to do so. On a lower-level daily scale, I do want to be in control. Asking for help inevitably involves a loss of control. It also requires openness and a subjection to another's construction of reality. I resist that. My clarity about what is involved and its necessity does not altogether ease that resistance. I want to control my living environment and I do not want to give over to another power over my daily life. My greatest fear is of becoming so disabled that I lose the ability to control my daily life.
One day while I was sitting in my yard with a friend, my kitten ran up a tree. As kittens are wont to do, she quickly decided that going up was one thing, coming down altogether different. My friend said, "Oh leave her, she'll come down eventually." I couldn't convince him to rescue her and so I climbed up the tree. And then discovered that I could not get back down. My legs were shaking controllably and I had lost all sense of their position. My friend then had to rescue me and the cat--after he stopped laughing. And it was a very funny moment. I should have known better than to climb that tree. I do not like to admit that there are things I cannot do but more than that, I dislike relinquishing control even on that level. My cat, my tree, and if I lacked the ability to rescue her, she would not be rescued. The resolution of that situation would have been out of my hands if I admitted, as I should have done, my inability to rescue her. Oh yes, a very minor example, but important to me. I do not want to lose the ability to decide and control those small things. This represents a continuing struggle for me. Awareness of what is involved does not seem to resolve it. The best I can do so far is to try to be aware and to keep the outline of the conflict in my mind.
I also, of course, fear the effects of weakness and physical dependency on relationships. There is the danger that if I show you who I really am, you will reject me, and if I ask something of you, you will turn away. I think most of us are prone to believe this at one time or another--unconditional love and acceptance are truly rare. I like to think that I have gone beyond that and in effect, say to people, this is who I am and what you do with that is fine. Nevertheless, when I think of the possibilities inherent in this disease, those fears do recur. The other aspect, and the much more tangible one, is that regardless of the level of trust, love, and acceptance in any relationship, there is inevitably going to be at least occasional anger and resentment when one person is continually physically needy. For me, it is absolutely essential to have that reality acknowledged and brought out in the open and that requires new levels of trust and acceptance.
For me it sometimes seems as though the hardest thing I have to do is to acknowledge my weakness; does one have to be strong to be weak? Is that a reflection of my personal psychological makeup? Indubitably; however, I do think that it has much more to do with the tone and values of this culture. If my weakness is objective and legitimate, why must it be masked with strength? Would it be more culturally acceptable for me to be weak if I were in fact strong? Or, put another way, if I deny my weakness and my need for help, do I then become a "better" weak person?
This may have something to do with being a woman. I wonder whether a man, generally perceived as stronger and more independent purely because of his sex, would have an easier time coming to terms with dependence. As with the berdache, because he is not dependent, he could be dependent. Because he is a man, he is strong; asking for help, therefore, is not a reflection of weakness. Women who continue to be, at least covertly, perceived as passive and dependent perhaps find it more difficult to acknowledge dependence. It must also be remembered that women, traditionally dependent and passive (at least theoretically), exercised great if covert power through manipulating that role. I am very wary of finding myself in that position. An argument can be made that acknowledging dependence is harder for men because of the cultural prohibitions against showing weakness and because they tend to have less explicit experience with it. Nevertheless, I do think there is a very real sense in which the converse is true.
At the root of all of this remains the cultural framework in which illness, disability, and dependence are equated with moral weakness and failure. It was one thing entirely to identify that framework and another to begin to come to terms with my own responses to it. My fear of being seen as weak and dependent in large part arises out of my view of the culture's judgment of those conditions. I do not wish to be judged a moral failure. Notwithstanding that I question those values, I still find that judgment hard to bear. It is precisely because weakness is so adversely viewed that I sometimes feel an almost irresistible need to mask it. From my perspective, it has seemed as though it does require strength to acknowledge weakness, to ask for help. And yet asking for help when it is necessary is something I must be able to do. I would like there to be more congruence between what living with multiple sclerosis requires of me on a daily basis and the way in which I am judged by society. At root, the strength to be weak involves resisting others' interpretation of my experience and finally, because that resistance is not very useful, letting it go and accepting the conflict as given.
I feel very strongly that in many ways the culture (that grand abstraction) would have me believe that my disease reflects the imperfection of my nature and indicates a lack of control where there should be control. Beyond that, it would have me believe in a better tomorrow; never stop trying to "do something about it;" and above all value and fight for my independence. The very curious thing is that I never did believe those things or subscribe to those values and, as time passes, I feel more and more at odds with the general thrust of this culture. Why then, am I so damned concerned with these things now?
When you are weak and dependent in many ways and live in a society which glorifies strength and independence, there is inevitably a conflict. I think a natural response is to deny one's weakness. I want to be accepted as I am and yet, when I acknowledge weakness or ask for help, I immediately am covered over, as it were, by the blanket of others' conscious and unconscious understandings of what that means. Of course, this statement is both greatly oversimplified and disregards much of what occurs on an individual level. But I think in a very general way it explains some of what lies behind or even requires denial. The language and the dynamics of denial--fighting against, not giving in, overcoming--and its other side--giving in--reflect not only the individual experience but a social experience, a social reality.
A young man in his twenties, whose leg had been amputated at a much earlier age, was found at a Neanderthal burial site at Shanidar in Iraq.3 To survive, this man must have been cared for by his community. Moreover, the decision to amputate (to save his life?) must have been accompanied by a community decision to provide such care. In one of the earliest human communities we know of, people were caring for a man who had to have been, given what we know of that culture, totally dependent on them. We know of no animals who care for each other in such ways. It raises fascinating questions. Did these people commonly care for each other in this way, or did this individual possess knowledge that was critical to the community's survival? I wonder how much of what I feel, he felt. Did he feel the conflicts that I feel, or perhaps, different ones? And I wonder, too, about his place in that community. What was his social reality?
MS, or any chronic disease, presents an obstacle. It is a real and objective obstacle. It cannot be overcome; it must be accepted. Yet I find that my own acceptance is not enough. I must also accept the cultural consequences of that acceptance.
So in the end, there seem to be two separate elements bound up in my struggle with weakness and dependence. And I am not at all sure which is stronger. There is the fear of dependence and there is the fear of being seen as dependent. Although I would prefer to think of myself as one who is not concerned with what 11 people" will think, it is quite obvious that my difficulty stems in large measure from exactly that. I begin to believe that this is another, perhaps less obvious, reflection of that uncertainty I tried to describe earlier. Why is it that I am now more concerned with the opinions of others? It is a direct outgrowth of my uncertainty, a reflection of new vulnerability and fear of dependence. It is because of all that that I seem now to require more affirmation.
The convergence of these fears may have much to do with that illusion we have of choice and control and the ways in which it operates. When it was theoretically possible for me, if I so chose, to fully participate in this society, it was quite easy for me to reject it. Now that I am an outsider, it is harder for me to be an outsider. When it was possible for me to be congruent with my culture and I chose not to do so, that was one thing; now that it is impossible, I suddenly find it problematic. Or is that just a reflection of the general perversity of human nature? I always did feel an outsider in many ways and for many reasons and never was troubled by that. I had no desire to be an insider, or to belong to something whose central ethos and values I questioned. I still do question those values; they are not my values, yet I find that in some ways I almost wish they were.
Perhaps it all returns to the question of denial. It may be at the very root of denial. That because there is conflict between the culture and what is required of me on a daily basis, and because acknowledgment of that requires great clarity and discomfort, the simplest thing, the way to live in some psychological comfort and congruity with one's culture, is to deny the conflict, which means denying the full implications of disease, potential dependence, lack of control, and ultimately, of course, mortality. I can't do that, I don't even want to do that, but the conflicts are real and continuing. Understanding their causes and roots does help, but issues like dependence or strength and weakness will continue to be issues for me, I imagine. The terms of the struggle do and will continue to change. My understanding and my acceptance may increase. In this regard, however, it begins to seem that acceptance is acceptance of the conflict as a continuing part of my life.