Experience in Conflict with Received Wisdom

. . . be still, and wait without hope
For hope would be hope for the wrong thing . . .

T. S. ELIOT

My first reaction to receiving a diagnosis of multiple sclerosis was one of shock and terror, mixed with a deep sense of relief. I was stunned and I knew very little about the disease, which added to my terror, but at the same time there was overwhelming relief in knowing there was a solid physiological reason for the symptoms and inexplicable bouts of illness I had experienced over the years.

Receiving a diagnosis, any diagnosis, therefore, gave me a sense of great relief. I was not merely neurotic; there was a reason for what had happened to me over the years. I felt immensely vindicated and affirmed.

The way in which I learned of the diagnosis was responsible for much of my shock. My first inkling came as I stood before the counter in the radiology department of a large teaching hospital waiting to be checked in for a CT scan. As the nurse verified the information on the order form, I automatically read it upside down and saw in the diagnosis column, the words "multiple sclerosis." Staggering slightly and feeling as though I had been kicked in the stomach, I stumbled to a chair. I desperately tried to recall what I knew about multiple sclerosis. Very little, I realized--a neurological disorder, disabling--and what I did remember all seemed very devastating. My neurologist had carefully refrained from telling me what he thought might be wrong, saying that he wanted to wait until he was sure. I had gathered that something was wrong, and that it might be serious, but somehow that didn't ease the shock of seeing those two words in print on the radiology order form.

I managed to get through the rest of that afternoon but my mind was reeling. Instead of going back to work I headed home, stopping at three bookstores on the way looking for a book on multiple sclerosis. I had to know exactly what this disease was and what its implications were before I could begin to think about it. Of course, there were no books to be found. I stopped at the library, but there were no books there either and I was too anxious and unsettled to sit in the reference room looking for information.

Once home I gathered together all the reference books in the house and began going through them. Some, but not much, information slowly emerged. Multiple sclerosis was a potentially progressive disease of the central nervous system, a demyelinating disease. Myelin--that rang a bell from anatomy courses. Slowly I began to form a picture of the disease.

Eventually I found many books, one of which I highly recommend to those newly diagnosed with multiple sclerosis and their families. Multiple Sclerosis: The Facts gives the facts, precisely, and presents a good overview of the disease and its possible implications.¹ The National Multiple Sclerosis Society is an excellent source of information about the disease, and its local chapters provide many services including counseling and support groups.²

The issues I found most problematic, however,--the impact of MS on my sense of self and on my self-esteem; its effect on relationships; and the effects on me of the social construction of disease--were not discussed in what I read. A book has since been published, The Body Silent by Robert Murphy, which does address many of these issues.³ Although it is not about multiple sclerosis, the issues remain the same.

The physical consequences of MS for me vary tremendously from day to day. As I mentioned, at the time of my diagnosis I was having considerable difficulty walking. My left leg was very weak and generally unreliable. My left arm felt quite dead and heavy, and it, too, was extremely weak. At the same time, I had a host of unpleasant sensations--tingling, numbness--all very hard to describe in a way that conveys much meaning to others. I had balance problems, was very weak, and tired extremely easily.

Over time, I have learned that there are good days and bad days in isolation as well as good and bad periods. There are times when every symptom I have ever had returns in full force (those periods of reintensification) and days when I feel almost (but never quite) "right." On a bad day I may have difficulty with balance, a hard time walking and especially climbing stairs, and quite severe weakness and fatigue. I sometimes feel as though I expend an enormous amount of energy merely having and dragging around my left side. These good and bad days often seem to be unrelated to anything in particular. At times these symptoms are clearly attributable either to extreme heat or cold or severe stress of one form or another.

Why do I feel another book on MS is necessary? There is certainly ample information available on the medical aspects of multiple sclerosis. Medical texts and journal articles were very helpful in forming my understanding of the disease. But, having read this literature, I was struck by its general lack of utility for the newly diagnosed and particularly for those fortunate enough to have a fairly benign form of the disease. More specifically, the literature generally fails to deal with the psychological process of adjustment to multiple sclerosis. In particular, the issues and questions that concern me, that have arisen out of and been clarified by my experience of the last few years, are not generally discussed.

Much of the literature is geared to those who are very ill or severely disabled. It fails to speak to those who may be quite "well" but who still have a significant adjustment to make. Most of the books and articles available do not deal with the initial reactions to learning that one has a chronic and potentially disabling disease, the knowledge of which, however benign its course, will radically affect one's life. The disease may be physically devastating, and one is forced to realize and accept all of its possibilities--I may very well become completely physically dependent on others. The emotional impact of multiple sclerosis and the host of issues involved in coming to terms with the disease are generally glossed over lightly by most writers.

Many of the books on MS are personal stories of the "how to live with multiple sclerosis" variety. I read these eagerly with the hope that I, too, would learn how to live with multiple sclerosis. Most of these stories were interesting; some were moving. They were not, however, particularly helpful to me at that time. I was devastated by the awareness that I had a disease which could irrevocably alter the course of my life. I needed acknowledgment of that fact, and I needed help in coming to terms with it and moving beyond the despair I felt.

Instead, I found that most of these writers failed to acknowledge the emotional impact of receiving such a diagnosis. The authors focused on the physical adjustments necessary to live with their varying disabilities and limitations. This was useful information but not what I immediately needed. I had no doubt that with determination and care ways could be found to cope with, and learn to live with, physical limitations. But before that was possible I had to accept the deeper implications of a life framed by the knowledge that I had a potentially crippling and devastating disease.

A mundane but, for me, telling example involved the warnings I was given by my doctor to avoid heat, cold, stress of any kind, exposure to colds or other viruses, and, it seemed, just about all of the normal vicissitudes of daily life. On a purely physical level, this is very clear and, I realized immediately, equally impossible. Presumably, however, physical and practical responses to such advice were to be found. But there was another side to this that was not addressed and for which I found no answer. What are the psychological implications of such warnings? When I first heard them, I was frightened and unsure; under the surface were questions of responsibility and control, the dynamics of daily life and relationships, the need to fashion a life which was lived fully and normally and yet without either overreacting to these warnings or disregarding them completely.

How does the knowledge that one has multiple sclerosis affect and change one's life? How should it? As I struggled through the succession of issues that were raised for me, it would have been very useful--not to mention comforting--to have known what might be involved and how others in my position had reacted. Coming to terms with the fact of having a disease such as MS would have been greatly eased and facilitated for me had there been an acknowledgment and discussion of the process of emotional and psychological adjustment. My responses might not have changed but there is reassurance in knowing that one is not unique. Some knowledge of the issues involved would have eased the way.

Or was my response unique? I found it hard to believe that it was and yet I could find no acknowledgment of the issues that, even early on, were most difficult for me--the impact of the disease on my sense of self, my competence, my worth, and the effects on those I was closest to and our relationships. This lack of confirmation increased my difficulty; I wondered if I was overreacting or if my responses were completely out of line with the reality.

The varying reactions of friends and relatives to my diagnosis are examples of an issue that turned out to be significant and difficult for me but which I rarely saw mentioned in the books I read. Those reactions, while fascinating in and of themselves and adding to my store of knowledge about people and relationships, were difficult to deal with; some warning of what might be encountered would have been very helpful.

As I read these books, I realized that in addition to their failure to speak to my experience, they shared several common assumptions. These included the notion that adjustment to the disease requires only a physical response, that hope and an optimistic outlook will conquer all obstacles and, therefore, that failure to overcome the disease flows in large part from defects in character and will. I began to think there was a connection between these underlying--and not always explicit--assumptions and the fact that what I was experiencing was not addressed. Perhaps it was the very fact of these assumptions that prevented discussion of the issues that were so central for me. Was it because of a common assumption, for example, that a failure to overcome obstacles reveals a defect in character that some of the obstacles and issues I felt were not mentioned? For to mention them, to acknowledge an unremovable obstacle, would be felt as revealing such a character deficit. Or, perhaps, dealing with MS on a purely physical level was a way of avoiding the necessary conclusion that one's very self is at issue and at stake in any real adjustment.

The implication that physical adjustment was all that was necessary to live with MS was very clear in most of what I read and conflicted strongly with what I was experiencing. I would not minimize the difficulty of walking with aids, or not walking at all, and the need to reorganize one's daily life around such eventualities, but it seemed to me then--and now--that such changes are secondary to an emotional and psychological accommodation to the fact of the disease. The physical fact of walking with difficulty is not nearly so important as the psychological and social consequences.

It also seemed that most of these writers used hope as a mask, a way of screening them from the full implications of acceptance. Part of my despair stemmed from the fact that there is no cure for multiple sclerosis and available treatments are merely palliative. I saw no way to avoid facing that reality, and it was only through full acceptance of its implications that I could move beyond despair.

Hope is a necessary component of living with the disease, as it is a necessary part of life. But hope is possible only after full acceptance of present reality and potential consequences. To use hope, either of change or improvement, as a barrier to complete realization of the potential consequences of multiple sclerosis seemed not only self-defeating but impossible. For me, hope could only come into play after acceptance. In most of what I read, however, it seemed that hope was pursued before acceptance was achieved. The language itself was very revealing:  "pursuit of hope," "quest for hope," "find hope," "fought and conquered the fear, uncertainty and despair" of MS. Hope was used as a weapon. For me, hope is important but it comes into play only within the parameters of experienced reality. And then, it is hope of living fully and with some integrity within the given context of my life.

It also became apparent that most of these authors felt that optimism was a requirement; that it was not acceptable to acknowledge the psychological pain they may have felt. Or if, in fact, they felt no pain, then what was wrong with me? Optimism, as with hope, if used to screen out reality, becomes an impediment to full acceptance, and, without that acceptance, a true optimism about life becomes impossible to achieve. The knowledge that one has a disease such as multiple sclerosis is in many ways unacceptable; nevertheless, acceptance is crucial. Hope and optimism as they were used in these stories seemed to obviate the need for acceptance, foreclose the need to deal with reality, and support denial. Or was it rather that denial led to hope? I began to wonder whether, in either case, hope used in this way did not foreclose discussion of the issues that seemed so important to me.

A third assumption that I began dimly to perceive was that failure in "living with MS," or acceptance of and giving in to the limits imposed by the disease, was seen by these authors as indicating weakness; that if one only tried hard enough, one could push the limits--giving in was not acceptable. The common response to a handicap of any kind is "try harder." The cultural emphasis on independence and individualism further complicates this issue.

I am aware of the psychological difficulty of asking for help, of saying "I'm sorry, I can do no more." It is difficult to be seen as not trying hard enough. Yet there are times when one can do no more, when one must give in, when the disease forces acceptance of physical limits. At those times, one must be able to give in to those facts, recognize those limits, without feeling guilty or weak.

There is clearly a very fine line between not trying hard enough and trying too hard. But achieving that balance is enormously complicated by an assumption that if one fails, it is necessarily because one has not tried hard enough. It is also complicated by the uncertainty of MS and the daily changes in strength and capacity that make it very difficult for either oneself or others to have any consistently useful and straightforward idea of that capacity. To talk about "conquering" the uncertainty of MS is to miss the point: MS is uncertain; one of its foremost attributes is uncertainty.

During this time I only dimly perceived the issues raised for me by the strength/weakness dilemma and its importance. Why is it so hard to acknowledge weakness? Why did I feel that I had to be strong to ask for help? Over the years as I began to resolve the conflict for myself, I slowly became aware of the degree to which this issue reflected a set of cultural values. It illuminated some part of the conflict between self and culture and what it means to be sick or disabled in this society.

I had become notorious within my family over the years for failing to rake leaves. Our summer house is inundated every fall by what seem to be millions and millions of leaves. I have always felt rather strongly that if God intended leaves to be raked, he would have seen to it that rakes evolved as part of trees. Nevertheless, there is a strong feeling in my family that leaves must be raked and moved and that full participation in this process is a social requirement. I simply could not rake leaves for more than a few minutes at a time. Standing and working is almost impossible for me, and I garden on my hands and knees. My weakness was ignored and I was openly seen and treated as a shirker and a wimp. The feeling was clearly that I used my "weakness" as an excuse to get out of a task I disliked.

Raking leaves became family shorthand for a whole set of behavior that, while a result of my weakness and fatigue, was seen by my family as shirking, getting out of unpleasant tasks, and as a reflection of a lack of will, ultimately of character. Given my history--that there was never anything "really" wrong with me--this attitude had some justification. I was uncomfortable (and defensive to a degree) because my weakness had no social reality or validity. When my MS was discovered, leaf raking was mentioned by all my family: "Aha, that's why she couldn't rake leaves." And on that level there was some new clarity. But to my dismay that clarity in relationships did not reach very far and the effect on me of those years of being seen as a non-leaf-raker was longstanding.

My first reactions of terror and relief at the diagnosis of MS slowly faded, to be replaced by a kind of cloudiness. There were so many implications and they were so interrelated that it took a long time before they began to fall into place. There was the first cold after my diagnosis, when, remembering all those warnings, I anxiously waited for a relapse, which failed to materialize. And, on a more diffuse level, there was a dawning realization that all of my close relationships were affected. No relationship is static, but I felt as though a large rock had been thrown into the pool of each of my relationships; there were new currents, and a need to reform the patterns to accommodate this new fact.

I also began to see (and this is much clearer in retrospect) that both of my first emotions--terror and relief--were largely inappropriate. The terror was not lasting. I learned that I would survive, perhaps not as I would wish, but I could and did learn to live within the framework of chronic disease. The relief, however, was also false. I had really felt that receiving a diagnosis would make everything OK vis-à-vis other people. That once there was a defined, definite, and legitimate reason for my bouts of illness and my physical weakness over the years, that would be that. That once there was an explanation of my inability to rake leaves for hours, I would not be seen and treated as a shirker. This particular dilemma became a model for me of the critical aspects of adjustment. If I could more fully comprehend its parts, perhaps I could see more clearly the relationship between society and the individual in the context of chronic disease. It was deeply disappointing that not only was everything not OK, simple and discrete, but that, in fact, both close relationships and my relation to society in general became even more complicated and, at least initially, even more difficult.

Culturally legitimated expectations of disability and disease are very different. A handicap is seen as a stable condition and yet, curiously, one which should not be accepted--as reflected in the common admonition to try harder and never give in. Disease, on the other hand, is seen as having one of two possible outcomes--the patient will get better or he will die. Those with a relapsing-remitting form of MS, however, have a disease from which they will not recover but from which they will not die. They also may have disabilities which vary enormously in both their impact and their visibility from day to day. And, even at those times when they are most handicapped by the disease, they may look very well indeed. The common understandings of illness and disability and the role expectations associated with them are often confounded by MS.

Immediately after my diagnosis, when I was searching for certainty and answers to questions I had only dimly formulated, my response to the books on MS was one of discouragement. If the only way to live with multiple sclerosis was to avoid its reality and its potential consequences, to take refuge in hope--how could I begin to come to terms with the disease? My thoughts about hope and denial were primarily intuitive, and it was only much later that I began to think about the implications of the assumptions I found underlying most of what I read.

Over time, I began to think about the ways in which hope, for example, as it seemed to be used in what I read was tied in with the idea, so prevalent in this culture, that everything can be changed, everything can be fixed, and its corollary, that failure results from defects in character, intelligence, or will. I also began to wonder about the ways in which common understandings and reactions to disability and disease shape the responses of those who are ill or disabled, not just the reactions of others to them. The nature of MS perhaps further complicates this process because someone with MS may float in and out of disease and disability and have no fixed status. Was the denial I saw in these stories a reflection of the desire not to be cast into the sick/disabled role because of its negative connotations and consequences in this culture? To what degree were these assumptions culturally mandated? How deeply did culturally legitimated expectations of disability and illness shape and, indeed, distort individual experience?

What was clear to me at the time was that the help I needed was not available and that my need for help remained unacknowledged. Moreover, the assumptions and implicit understandings that I found reflected in the books I read not only provided no help, but were destructive and impeded the necessary process of emotional adjustment. Adjustment is necessary. The new knowledge of disease must be integrated into one's sense of self; the self must be re-formed around it. Continued life and growth is possible only through and after this adjustment. The fact of the disease must take its proper place so that one can be more than a person with MS.

Hope was not enough. Hope did not help me to understand and ultimately to accept and adjust to the impact of the disease on my primary relationships. Trying harder was no answer to the impact on my sense of worth and competence of knowing that my brain was damaged. Learning to live with the potential of dependency and how and when to ask for help was in no way made easier by the implication that failure to manage would arise out of defects in my will. Striving only to meet the ideal of independence and a stiff upper lip would have required that I deny the very real limits and changes imposed on me by the disease.

My first need was to achieve a realistic, tempered, and yet, within those limits, optimistic outlook on life. To do that I had to deal with the emotional and psychological issues raised for me by the fact of this disease. The process of adjusting to the fact of MS in my life was complex, long-lasting, and necessarily on-going.

At the time of my diagnosis I was, as much as anyone ever can be, in a fairly good position to receive such news. The circumstances of my life were rather straightforward. I was old enough to have a reasonably good idea of who I was, what was important, and what I believed. Hard as it was for me during all the years when I did not know what was wrong with me, I think that when I did receive a diagnosis it was easier to come to terms with the knowledge that I had a chronic disease than it might have been earlier.

My life was structurally rather simple. I was in my late thirties, divorced, and childless, and living in a community where I had been for some years and had some roots. I had a job I enjoyed and I was about to start graduate school in a subject I loved. But the facts of our lives convey very little about who we are; they seem to be not very relevant. They have little to do with the emotional and psychological issues that a disease such as MS brings to the fore. In their basic outline, these issues are the same for everyone.

I think, for me, the knowledge that I have MS has acted primarily as a great clarifier. It has changed me in some ways but mostly it accelerated the process of stripping down that I think usually occurs as we age. Most of my feelings about life have been reaffirmed. Many of the changes have been external. I found that I simply lacked the strength to work full-time and go to school and that, since work was essential, there was no choice but to leave graduate school. Another consequence of MS has been that I do now take work more seriously than I once did. I was never ambitious and never had or desired a career. Work for me was always a means to an end. Now it is not enough to say "Well, I can always get a job and support myself." I am more concerned with financial and job security, pensions and benefits. After all those years, I tried to get myself into a position with some advancement possibilities. Work is still a means to an end but financial security is more important to me now, and achieving that requires a slightly more serious attitude about work than I once had.

But my beliefs about life, my thoughts about what is important, have not changed. I am not religious, although I was raised in the tradition of mainstream Christianity. Religion permeated my childhood and my rejection of it was not without thought. For me, religion is a means to avoid seeing clearly and to shelter oneself from reality. It seems to me that religion is often used as a cover for, even a promotion of, hypocritical and dishonest behavior. I think that most religious behavior obscures life and takes the edge off reality. Having MS has made me want to be even more clear about exactly what life is and to be direct in my response to it.

A disease such as MS exposes one to perhaps more than the usual amount of hypocrisy and dishonesty and dramatically decreases one's tolerance for such things. Because disease is so clarifying in many ways, one loses any remaining doubt about what really does matter and what really is worth fussing about. None of this is meant to suggest that I don't do my share and more of mistreating people and unnecessarily flailing around. But, at root, there is a new level of understanding about what is and is not important.

My sense of the ridiculous in people and life continues to increase and I would not like to have lived through the last few years without it. There are moments when I am full of despair but I generally am rescued by seeing the absurdity of it all. There was a day when I fell in front of my employer and he very carefully stepped over me and walked away without a word. That was a very funny scene. Laughing at myself and others, seeing how ridiculous we all can be, has been a central part of the last few years.

The meaning of life seems more and more to be a useless question. I have come to believe--and having a chronic disease has, if anything, intensified this--that searching for meaning, or even ascribing meaning, in many ways obscures meaning. I don't think there is much in the way of a grand purpose to be found in life. Life is a gift and what matters is to live honestly and without illusion, insofar as that is possible for any of us; to see what is and respond openly and wholeheartedly. And people matter--the care and attention with which we know and love one another.

As I have lived with this disease and all it means, I have come to think that I would like to live as a good gardener. Gardening involves clarity and honest appraisals; there is no room for games. The processes are very direct and clean. There is an abundance of laughter and joy to be found and no lack of mystery, but the mystery is not overlain with illusion.

Learning that I had multiple sclerosis was a shock. Coming to terms with it, and integrating that knowledge into my life and my sense of who I am, is a long and continuing process.