We do not know our own
souls, let alone the souls of others.
Human beings do not go hand in hand each stretch of the way.
The acceptance process is much more complex than I thought. It is not just a question of me and my responses and acceptance or nonacceptance of having MS. There is not only me alone adjusting to my new reality and all that encompasses. It is not merely that I can no longer rely on my legs not to buckle and a11 the psychological consequences of that. Suddenly, I am face to face with the expectations, classifications, categorizations, and stereotypical reactions of others. There is a whole world to adjust to, and that world makes acceptance and adjustment more complicated than if I lived in isolation.
It is, in many ways, the various social aspects of the process which are most problematic. An important part of that world is he relationship with one's physician. That relationship is an important one in and of itself for anyone with a chronic illness. It is also in many ways a perfect example of the whole world of relationships. Since my diagnosis, I have begun to think that the physician-patient relationship is open to misunderstanding in some measure because of the values and assumptions I have been talking about. We tend to bring that framework with us--it would be strange if we did not--into our relations with doctors and we also overlay those relations with a set of mostly unspoken and even unrealized expectations.
I have often wondered why doctors play down the impact of being told that one has a disease such as multiple sclerosis. I think the answer is partly found in the ramifications of the meaning of time. Time and perceptions of time (its presence and passage) are central in both the experience of disease and in responses to it. It is central to others' perceptions and responses; it is central to my own. Time, of course, is not the right word at all. I don't mean time in the sense of its divisions or as implying passage. Time (or is it our experience of time) is always in motion, not necessarily toward or from but in rearrangement of the molecules--Brownian motion--molecules randomly colliding and moving in response to those collisions.
We tend to fix people in time and then respond to our picture of them. We disregard, often because we do not know, how they may have changed from that fixed picture and how they may have experienced the time that has passed. I think of speaking on the telephone to a dearly loved friend after a few days; I know where I have been in those days, how the atoms of reality have rearranged themselves. But not only do I not know where he has been, what he has done, how he has changed, I must actively remember that I do know none of that. For if I fail to know that, I lose the capacity to hear him or be with him where he is at that moment.
Time is, perhaps, one aspect of the doctor-patient relationship which, being at least tacitly, if not actively, misunderstood, contributes to the potential difficulties in that relation. My neurologist is a very sensitive and compassionate man. He listens very carefully, a rare quality. But his knowledge of me is necessarily limited. (Because that knowledge is, in large part, based on my presentation, I am responsible for it.) His experience of me is based on discrete episodes, fixed in time, while who I am at that moment is only one part of a continuum.
It may be just because doctors do see only moments, isolated from life, from relationships, that they tend to understate the importance of the disease for the patient. "So you can't walk very well," and seen purely objectively, I would not disagree. But for me there is nothing objective nor isolated about that fact.
Akin to this is something that I feel very strongly every time I see my neurologist. I have a benign form of this disease. He deals every day with acutely and grievously ill people. In his world, I am clearly one of the lucky ones. Seen through his eyes, I am quite well. In my world--and especially compared to the way I used to be--I am not OK at all. I try to remember that. It is, in part, a question of perspectives. For me, it is of major importance that many days I must struggle to walk. In his world, I walk very well. But it is also a matter exactly of the existence of those separate worlds. For me, it is I who am central; we are all central in our own worlds and, I think, often forget that we are central nowhere else. It is important to remember those different worlds.
I think of a day when I was walking along and suddenly felt something very strange or, rather, I felt nothing at all and wondered if my shoe had broken. Well, my shoe was fine. My ankle had collapsed and there was no sensation attached to that event. There was suddenly no support there. I reported this to my doctor and he said, "Oh yes, that was an ankle collapse." For him, it was another transient symptom; for me, it was much more. I wanted to say to him, "Hey, wait. This is important to me." I didn't because this man is the only doctor in my experience who almost never downplays the importance of what is happening. And for once, I did remember the essential difference in our perspectives.
Nevertheless, there is something very unsettling about that kind of thing. A fundamental disturbance of body image. I think of reports I have heard from those who have been through earthquakes. After the earth, the very ground--that immutable and permanent element--has moved, it is hard to trust in the certainty of anything. Comparing an ankle collapse to an earthquake is perhaps farfetched but I think the ensuing feelings are related. I can no longer trust that my ankle will not collapse; I can't assume anything about it. For me, and I am not sure why this particular symptom did affect me so strongly (perhaps it was the absence of all feeling, the ankle lay there on the floor and it was only vision that told me so), it was quite like an earthquake.
Disturbance of body image is very shattering. It disturbs the very experience and root of self. I think one has no real awareness of the centrality to self of that body image or, indeed, no awareness that one holds that image, until it is disturbed. I often think with awe of the many years in which I was so completely unaware of the fact that my legs worked. One takes so much for granted.
As I looked at that ankle, lying sideways on the floor, it felt completely unconnected to me. Yet, of course, it remained a part of me. Communication was disturbed. Another example of this and, in its way, even more compelling has to do with movement. There have been times walking when suddenly I have stopped, not as a result of intention but because my left leg has ceased to move, to take the next step. And then one has to think about it, to actively think, to will, movement. Unthought, unconscious movement has ceased.
When my left side is numb or in whatever fashion "not right," I always have my right side as a reference point. I have wondered what it would be like if they were both the same. Sometimes I think it is only or partly because my right side is there, is normal, that I am aware of the left-side deficits.
These events can be medically simple and objectively (if that is even a category here) straightforward and of a minor nature. Yet they do shake the ground, as it were, for an individual. Such sensations, or the lack thereof, are clearly connected to that generalizcd uncertainty I spoke of before. The psychological consequences of the physical events are so much more important than the events in and of themselves.
It is difficult to convey their impact. Perhaps unless one has experienced something of this kind, one really cannot comprehend its nature. I surely never thought before of how right my body felt, or was grateful that my legs obeyed commands I never was aware of giving. As may be true in the aftermath of an earthquake, one becomes aware through loss, or change, of that which one had not consciously known as such before. I certainly don't appreciate the stability of the ground beneath my feet as I walk down the street.
Perhaps when something of this nature happens to us and so overshadows everything else, our self-absorption becomes so great (I have felt sometimes as though I must listen to, and could hear, the internal workings of my body) that we tend not to want to hear how commonplace it really is. And that there is nothing anyone could say that would convince us we were being taken seriously enough.
Another factor affecting the patient-doctor relationship may result from the explosion in medical research and technology. We have learned to expect that something will be done, that action can be taken, results assured. So much is possible now that was unthought of just a few years ago. MS presents a case where not much can be done or given. Playing it down may be a response to this fact. I think most doctors would like to be able to do something for their patients; in addition, I think most patients expect that something will be done. There is a tendency to see doctors as very powerful. A disease such as MS with an uncertain course, an uncertain prognosis, no cure, and only palliative treatment available, confounds that relationship. I think the common assumption that all problems have a solution, that anything is possible, is particularly active and powerful in this context. Here, where the problem has no solution and everything is not possible, there may well be conflict. Doctors may have trouble acknowledging their impotence and their patients may be unable to admit to themselves that there is no affirmative action available.
I am aware that despite my best efforts these assumptions lurk in the background whenever I see my neurologist. I see him because I have reached the temporary end of my ability to cope. vAs he once pointed out, I never call him just to say hello, how are you. No patient does. And, if I am honest, I call him because I want something to be done. This is so even though I know perfectly well that nothing can be done. There is, at least, covertly, a request from me to him to do something; I would not be there otherwise. What he gives me is information and reassurance. That is extremely important, and I don't discount its value for a minute. What is important, though, is the way in which I continue, in the face of my own clear understanding, to (at least on some level) expect some action. Whenever there is a request, however hidden, there is equally an expectation of response. And I think it is because we are acculturated in action, in resolution, and in change that, despite our best efforts, we find it difficult, when necessary, to shrug off that response.
Notwithstanding my attempts to understand and be conscious of what motivates me and shapes my responses, all of this can be, at times, enormously frustrating. Another of my doctors believes that my disease is so benign that it should not be a factor in my life at all. I have often wished that he could spend a day, one of the bad days, in my body. When doctors deny the impact of disease, for whatever reasons, some of which may be quite valid in their eyes--for example, a desire to ease the impact and promote acceptance--adjustment becomes even more difficult. At least for me, it is much harder to come to terms with something if I am the only one who thinks it important. That response feeds the general uncertainty. One thinks, "Perhaps this really shouldn't matter, perhaps I am overreacting," and so forth. This itself can be a crucial element in denial.
The patient-doctor relationship is one example--and central to the chronically ill--of the whole world of relationships. Life with chronic disease exists on a continuum. One has to remember that the quality and content of that continuum cannot be easily conveyed to others. We always see of others only discrete episodes.
The centrality of denial in so many responses to disease can be explained by the interaction of (at least short-term) individual psychological needs and the impact of culture. Both reinforce the other and, indeed, give each other more power. Of course, one might well argue that culture reflects--is derived from--individual needs and I think that is true. The converse, that individual psychology reflects culture, is probably true, too, but to a lesser degree. Words such as culture represent abstractions which should not be given spurious reality. I do not mean to imply that such concepts are active and moving forces or have reality in and of themselves. Nevertheless, I do think there is an important interactive process at work here which cannot be ignored.
It is commonly held that denial is an inevitable and necessary stage in the acceptance process. I have not found that to be the case. Shock and disbelief, yes, but those emotions are not to be equated with denial. I have wondered if perhaps hope and denial are so closely entwined that each is to be found only in the presence of the other. And that because I did not have (what would deem false) hope, neither was I impelled to denial. Equally, because I felt no drive to deny the reality of what was happening to me, I did not seek refuge in hope.
I don't know what individual characteristics promote oreven require denial. I do know that even though I skipped that stage, I have felt, and continue to feel, the force of the imperative to deny. It also seems as though the denial of others is an obstacle I continually run up against. These concepts seem, for many, to carry within them their own truth and power. I have been intrigued by those who say, "You are denying the fact of this disease." When I say, "No, I don't think so," I am told that my statement that I am not engaging in denial proves that I am. There seems to be a commonly held appreciation of the reality, necessity, and universality of both hope and denial. It is here, I think, that an explanation is to be found for the misperception of acceptance as event. Moreover, the belief that acceptance will preclude conflict and negative feelings is bound to affect the individual. For as one continues (and one will) to experience conflict, one may well feel a need to deny that experience.
I think, too, that we are sidetracked by semantics. I feel very strongly (as is probably more than clear) that the emphasis on hope and denial and their centrality in most discussions of illness and death grievously impairs acceptance. But many of those I have discussed this with have taken violent issue with me. Hope is a very loaded word. Questioning the use of hope seems almost as bad as attacking motherhood. It is not entirely clear to me exactly what many people mean when using that word. It seems sometimes to be shorthand for an optimistic and positive outlook on life; it obviously has strong religious overtones; it holds within it the notion of change.
The fact that hope, as generally used, precludes acceptance is disregarded. I am a fairly cheerful and, at root, very happy person, happy especially in the little things. I see great joy in life itself. And yet I find repeatedly that if I express a lack of hope, or perhaps, more accurately, indicate that hope is not a centerpiece of my world view, I am assumed to be in despair. There seems to be an equation of clear and straightforward acceptance with pessimism, even depression. It is intriguing that while both "despairing" and "despondent" are listed synonyms for "hopeless," the primary definition is "giving no grounds for hope." There is a common understanding (is it reflective of or structured by language?) at work here which is difficult to get around. Does the absence of hope necessarily create a hole to be filled with despair? Clearly I don't think so. Nevertheless, it has become clear to me that viewing acceptance as a continuing and ever-evolving process with no clear end and certainly no resolution of conflict is often equated with despair.
In this vein, it has been pointed out to me that hope, rather than being an avoidance technique or a tool of denial, is a coping mechanism. Undoubtedly, that is true. It seems to me, however, that if it is a coping mechanism, my point is made. It is exactly because hope is used as a way around reality, a refuge, a way of dealing with that which we would prefer not to deal with at all, that it gets in our way.
The following prescription seems a fair statement of and reflection of the ways in which both hope and denial are commonly used. While it was written in the context of life-threatening disease, I think it applies equally here:
Hope is necessary . . . for sustaining a sense of onself as a person with a future; without that expectation, the experience would be one of despair only. Denial--of death and of the immediate limits imposed by the disease--is necessary to the idea of oneself as someone who exists apart from the condition of illness, whose true self continues distinct throughout and emerges intact at the end.1
I find the implications of this statement for acceptance to be appalling. Specifically, the notion that denial is necessary is destructive. I do not exist apart from my disease; wherever the boundaries of self and body are to be found, the only way I can live is with full acceptance that this disease is a permanent part of me. There can be no integration otherwise. I am intact, yes, and that is essential, but that intactness is of the whole and the whole includes the disease. And as for the future, there is a sense in which we all assume a future; no matter how accepting of our mortality we may be, we do tend to trust that there will be a tomorrow. My sense of personal integrity, of existence, is not at all dependent on hope. Tomorrow is unknown, uncertain and, other than in necessary and practical ways, in no way governs today. And I imagine that if I had knowledge of my certain and impending death, that would be even more true. If denial is necessary and reliance on hope essential, it all becomes a game.
Death is at the root of our conceptions and understanding of both hope and denial. Certainly, it is apparent to a casual observer of this culture that death is dealt with in the most obfuscatory fashion. I suppose that if death is a fact we prefer to obscure, then it follows that anything tending to remind us of our mortality will also be obscured. MS, or any disease, is necessarily and foremost a reminder of our mortal nature even though it may not be immediately life-threatening.
Death is the ultimate reminder of our lack of control. That fact, however, and its commonness remains something which we prefer to ignore. It might be argued that the very supremacy and centrality of the belief that man can control nature, can change outcomes, is only a reflection of our, however covert, acceptance of our mortality. It is because we do know that we will die that we are so preoccupied by death and try so hard to overcome it through activity. Control is so important exactly because deep down we do know we have no control.
For me, masking that fact--that we are mortal, that we have finite lives--makes living rather futile, removes what point there is to be found. Remove the sacred canopy--whatever it is created out of, hope, religion--and there is reality and, hence, life. T o ignore death takes away a large part of life's joy. It is within the "immediate limits imposed"--the constraints and the real context of my life seen through clear eyes--that there is room for a full life and for happiness.
I have been concerned with the process of adjustment to the knowledge that one has, and will continue to have, a chronic disease. Before there can be adjustment, however, there must be acceptance of the very real conflicts inherent in and the limits imposed by MS. If it is, indeed, necessary to deny the very real limits and conflicts inherent in disease, there will be no acceptance. Adjustment is difficult enough; to try to adjust to something which one has successfully hidden from one's self is a continuing exercise in futility. There are plenty of people around who will support that exercise. Acceptance is in many ways and by many people equated with despair.
Beyond self and immediate others is always the world I live in and with, and I do find living in that world to be problematic. I have no desire or need to deny on a personal level; in fact, I have a very strong desire and need to be absolutely clear and honest about the consequences, real and potential, of MS for me. But I do feel rather strongly the pull to denial on a cultural level. I can easily see, too, how these two strands might become inextricably mixed. And when they do, clarity becomes even harder to find and retain.
I do resist being categorized by others. I dislike being put in the sick/disabled category and role. Physical weakness is difficult to accept. Weakness is undesirable; if it is seen as legitimate, it is better, but the visible results of MS, my condition, are often not seen that way. And because weakness and dependence are so negatively viewed, one has, or I have at least at times, a strong impulse to do whatever is necessary to avoid being seen and treated in that negative way. So, on that level, perhaps I do engage in denial. And it is obvious that that need and that response can lead back to individual denial. As I have become more aware of that dynamic, I have certainly appreciated in a new way the power of the external world to inform experience.
Trying to find a new job pointed out to me--if I had needed to have it pointed out, and by then I really did not--another way that denial is almost forced on the individual. I had had the notion that I had an obligation to tell a potential employer about my MS, that while I was generally well and quite able to perform my job, there were those bad days, days when walking was difficult and so forth. I felt, too, that I wanted my employer to know about the MS because if my condition deteriorated, I did not want that to come as a surprise. I was applying for jobs in which presumably the quality of my brain, not my body, was at issue. In none of the situations in which I was open about my MS was I offered a job. Of course, there is no way of knowing whether MS was the reason but I am fairly sure that it was. I stopped being honest about MS and I got a job. A friend who is very reticent about his MS cites employment as the primary reason and I have no reason to think he is wrong.
I think it becomes very difficult to be open and honest with one's self if one is, or feels compelled to be, secretive and dishonest with others. Honesty is not, after all, a two-sided thing. It either exists or it does not. A social imperative to denial inevitably will affect one on all levels, and it operates in many ways, through language, in relationships, through me. Acceptance, as commonly understood, is a perfect example.
It is difficult to maintain integrity in the face of these pressures. But it is impossible unless there is clarity about exactly what is at play. I think there is a way in which the society (and I do hesitate to throw around these abstractions) demands, perhaps through a tautological process, reaffirmation of its primary values. That which conflicts with the general thrust of society is, in a sense, brushed aside. It is important to hold to the centrality of my own reality, to remember the conflicts, and to remember also that neither my reality nor the social world will change. Life must be within that frame.
A partial explanation of this tautological process may be found in language itself. I think that language does structure experience. We tend to see things for which we have words and concepts; we place events within available categories. Beyond that, expectations create experience. Those expectations also arise out of language. Our expectations, however formed, can in large measure determine how we experience what happens to us. If we have a set of categories or visions within or through which we see the world, we will tend to place our experience within those categories, rather than seeing it as it is. An example is the way in which disease tends to be equated with sickness. As I have come to appreciate, disease not associated with sickness is anomalous. That categorization is not really very useful, yet it dominates and limits our understanding. Moreover, we use words to minimize and control uncertainty.
Thinking about language can become very circular and perhaps one never can see purely. How can one perceive reality other than through language? One intuitively senses language's inadequacy to describe or account for many things, but one is still limited by it. To give a small example, a friend pointed out to me that I seem to be creating an evolving category of good days and bad days to convey information in my closest relationships. If asked on a bad day, I have usually said that I am not very well. I have not said I am sick because being "sick" doesn't seem an apt description to me. But I have learned that "not being very well" doesn't seem to convey much to others. So I have relied more and more on the good-and-bad-day classification. This is one response to the inadequacy of existing categories. It is also a way of limiting expectations to daily realities, which I have tried to do although I doubt they can be done away with altogether. I do think that they can be very determinative of experience. I want the quality of my life to be as unfiltered by conscious or unconscious expectations as possible and to experience it as it is.
A dominant theme such as hope or denial does operate to shape our understanding. I must be aware of the ways in which I respond to the culture's treatment of disease and disability and my occasional desire to hide from that. Only then can I avoid disguising and distorting my own reality from myself. If I am aware of the ways in which my environment pulls me to and seduces me into thinking I have control over the facts of my life and denying my personal reality, I can better resist that pressure.
All of these factors are ongoing impediments to adjustment, perhaps even to acceptance, and they act in concert with those primary motivating values of this culture which do, and actively, conflict with my reality.
I must live in the present; this culture is strongly oriented to the future.
I must accept that I have no control over nature; this culture operates on the premise that nature is controllable.
I must accept that my independence and self-sufficiency are potentially in doubt and I must maintain my integrity in the face of that.
I must accept that, while action is the primary and almost instinctive response in all situations, I must be with this disease.
A central requirement of both acceptance and adjustment is that one refashion one's conception of integrity, of personal wholeness. Before one can integrate the various impacts of the disease into a new vision of self, and go on from there, one must be fully aware of the entire set of consequences. You can't put something in its proper place until you know exactly what it is. It is only as I accept (and it does continue) the present and potential consequences of having MS, that I can then adjust to it. Without that acceptance, adjustment would be impossible; there would be nothing to adjust to, there would be only an unexamined, uncertain complex held away from myself. I think that the importance of this process is not only generally downplayed, but that much of my world tells me, in however obscure a fashion, don't do it. So, finally, acceptance requires conscious awareness of the action of that world. One must adjust to and accept the fact that acceptance and adjustment are not really seen as important or essential.
Acceptance also requires accepting that one will live at odds with the "onward and upward" thrust of this culture. Full individual acceptance requires a set of values that conflicts with prevailing values. I think that here is to be found a partial explanation of the prevalence of both hope and denial. We do want in some ways (comfort requires) to live in congruence with our culture. Yet integrity demands acknowledgment on an individual level of that which everything around us denies. The values of many people conflict with those that are dominant in society; mine did long before my diagnosis. The difference for me now lies in the acuteness of that conflict, as well as in the consequences of ignoring it. It is because alienation not only becomes so extreme but at the same time becomes intolerable in a new way because of one's new vulnerability that recognition of this conflict is essential. I doubt that resolution is possible.
The diagnosis, that event which even now seems such a central and clear demarcation of my experience, did not provide the resolution I thought was available. That moment of perfect clarity, while in many ways transforming my experience, ultimately failed both as explanation and as an agent of change. What was central before my diagnosis, trying to live with integrity in a world shaped by others' interpretation of my experience, was central afterward. The definition and size of that world changed. The terms changed, the ground shifted, but the essential reality remained. And the scene at the airport in Luxor continues to be a very powerful metaphor for me of my experience on both sides of the diagnosis. The central issue is that of maintaining personal integrity and shaping one's own experience within the world, however defined.
And what, after all, is the hope of? While I would not use the word "waiting," for that holds its own implications, I do agree with T. S. Eliot that hope would be for the wrong thing. As I began to suspect on first reading the books about MS, it is always hope of change. It seems clearer and clearer to me that hope precludes living fully and completely today. It blurs reality; it takes the edge off; and finally, it makes acceptance almost beside the point. And acceptance of that which cannot be changed is essential. Only then can one adjust to what is and live fully as an integrated whole.
There was indeed a connection between the assumptions that bothered me so in what I read after my diagnosis and the fact that what I experienced was not addressed. For the values I have discussed do, if one holds them, obviate the need for real acceptance and even, to a degree, foreclose it. Beyond that, there is a reluctance which I appreciate, to say, "Wait a minute, this is my experience and I won't have it gainsaid." Coupled with that is a tendency to frame one's experience in terms that others both recognize and consider legitimate. Presumably one purpose (it is mine) of writing these books is to share one's experience, and there is concern that if that experience is contrary to common frames of reference, it will be misunderstood, if not disregarded. Intensifying that feeling is the vulnerability and uncertainty that causes me to question my own perceptions and understandings of this experience.
While I find that I have become increasingly impatient with and amused by self-absorption on all levels and try very hard to guard against it in myself, this book is in many ways an exercise in exactly that. I walk the streets and listen in on the floating scraps of conversation and am so often struck by how bound each of us is by our own small world--a private world unknowable to the observer but whose existence is palpably real. I feel sometimes as though we are all in crystal balls within which we live and through which we fail to see. These crystal balls, and the worlds they enclose, prevent us from entering fully into the world of another. Our individual worlds seem so important to us, so compelling, we fail to remember how small and limited they really are. And we do this on all levels, from the very personal to the most global. I had thought that viewing the earth from space--itself another entity floating, enclosed--would perhaps cure us of our sense of importance but that has not seemed to happen.
My world is not yours; nor yours mine. But if we both remember that neither world defines reality and that there need not be that opaque and enclosing wall, then perhaps we can begin truly to see and hear one another.
I do not want to fall into the trap of seeing reality only through the prism of MS. It has seemed important to understand the ways in which it is relevant and the ways in which the culture shapes my experience. It is all much clearer to me now. Receiving a diagnosis did illuminate and transform the past for me and coming back from Egypt did throw new light on my life with a chronic illness in this culture. The explanation I found for some of the conflicts I experience is very important. The conflicts do remain, however, and there is a very finite limit to the relevance or usefulness of that understanding. Clarity, even explanation, does not provide resolution.
The diagnosis, that watershed event, failed in the end in its promise of clarity and resolution. It was transforming; it did change everything. But equally, it changed nothing. Yes, I as an individual was affirmed and that was important. Acceptance on an individual level is crucial but does not provide closure.
I think I have, in the larger sense, accepted what MS means to me. The conflicts remain, however, and I rather think always will. It is possible to live with ease in the presence of those conflicts but only after accepting the full implications of their continuing existence. Living with chronic illness in this society will always require new adjustment. I doubt there will ever be any conclusion or closure to be found in this experience. The central and essential nature of acceptance--that it is a process and that it does not negate conflict--must be acknowledged. But it is important to state that in acknowledging conflict one can then, in a sense, go beyond it. These conflicts are not the central nor the most important fact about my life.
Having a disease of this nature is not separable from the rest of life. It is not something that can be segregated or held apart. All experience is viewed through that prism. It is not entirely a negative screen; I have found clarity (scattered and obscured though it may be) in observing myself and others through the overlay of this experience. But the prism is there and to ignore it is to deny myself the opportunity to live wholly and in integration.
The boundaries we create for ourselves, and the definitions, are ultimately very limiting. They do bind us and bound us. And just as I have great difficulty seeing the ultimate importance of divisions based on nationalism or other categories, so do I not wish to define myself in terms of MS nor take it too seriously.
Multiple sclerosis is only one part of me. The experience I have described is only one part of me. There is a whole world and a whole life beyond multiple sclerosis. To go beyond MS does require first seeing and accepting the continuing implications and consequences of a life framed by disease and understanding their roots.
It concerns me that to a degree the very process of acceptance--most particularly the describing of it--almost requires that it be given a stress that, in the end, is misleading, even false. There is life beyond MS. There is much joy and happiness in that life. With Virginia Woolf, I believe in the importance of the things one does not say. Beyond MS, there is always and foremost, "the question of things happening, normally, all the time."