After the Diagnosis
I was told that . . . I
might or might not experience
symptoms of neural damage all my life. these symptoms, which
might or might not appear, might or might not involve my eyes.
They might or might not be disabling. . . .
What happens after one is told one has a disease such as MS? The diagnosis is made and, usually sooner rather than later, one is thrown back into life and left alone to confront this new reality. It is a bit like learning to swim by being thrown in the water. I felt as though I had been presented with a task that was undefined and for which there were no guidelines.
My experience in coming to terms with the fact of multiple sclerosis in my life has led me to believe that there are several parts to the immediate and very personal process of acceptance. There are the initial reactions to the diagnosis and how one deals with them. There are the ways in which MS does and does not affect daily life. There is the host of emotional issues raised by the disease. Finally, there are the ways in which the very fact of a disease such as MS affects relationships. These were all involved in my attempts both to come to terms with multiple sclerosis and to incorporate the reality of the disease into my life without letting it dominate my life.
The first few months after the diagnosis were difficult for me. Despite my neurologist's assurance that I had a relapsing-remitting form of the disease, which was likely to be fairly benign, at least initially, I was convinced that the worst would happen and happen rapidly. I think this reaction was probably inevitable. It is also clear, with hindsight, that a primary task for me was coming to see myself as mildly disabled and prone to occasional bad spells but basically healthy; that would have been much easier to achieve had I known more about the adjustment process. It was almost a year before I relaxed and stopped seeing impending disaster in every new sensation and symptom. It took time to learn the new parameters of normality.
One benefit of the diagnosis was learning that some very strange things that had happened to me over the years did, indeed, fall within these normal parameters. One is called Lehrmitte's syndrome--moving one's head in a certain way produces a sometimes severe sensation of electrical shock. The other is a sudden sensation of water pouring down the back of a leg. The feeling is so real in every way that I would reach down to touch my wet skirt and be amazed and unbelieving to find absolute dryness. These are not uncommon symptoms with MS, and it was very nice to be able to slot them into that disease complex. Over the years as I read about MS, I would come across descriptions of other symptoms and say, "Aha, that is what that was." These were not things I had ever mentioned to a doctor, either because they were transient, because I had forgotten them, or because they seemed so bizarre that I hesitated to mention them. Explanation even in retrospect is very comforting.
There are good days and there are bad days, and a bad day does not necessarily, or even usually, mean a recurrence of the disease. Recognizing how fatigue, heat, stress, and even a fever can affect symptoms and one's daily ability to function takes a long time. It takes even longer to learn to accept such daily changes with equanimity. There is a big difference between gaining an intellectual knowledge of the disease and living with it as a permanent and daily companion. I am still uneasy about recurrences but I no longer await them with trepidation, nor do I interpret every new or recurring symptom as representing a new onset of the disease.
Along with all the medical information and the constant reassurance I received from my neurologist, it would have been very helpful if I had had some notion of what was involved emotionally in coming to terms with multiple sclerosis. Particularly if one has a benign form of the disease and functions reasonably well, there seems to be an expectation that one will come to terms with it easily and quickly. In contrast, I think someone who is very ill and very disabled will be expected to have more difficulty and hence will receive much more overt emotional support. I could be wrong.
What I heard, however, particularly from medical professionals, was a version of "Yes, you have multiple sclerosis, but you are basically fine and, therefore, your life should not change nor should it be difficult to adapt to it." That is wrong. The knowledge that one has a potentially serious and debilitating disease--no matter how benign a form it seems to be taking--does change one's life and requires a significant adjustment. That knowledge is not easy to accept. Recognition of that reality by the medical profession would have provided a level of support that was missing for me. My adjustment might well have been easier and quicker. One can certainly overreact or make the disease the centerpiece of one's life, and I am by no means advocating that, but the difficulty of coming to terms with it should not be understated.
"Living with multiple sclerosis" or some version thereof seems, as I mentioned earlier, to be a popular title for books on the disease. There is good reason for this--it is the primary task of anyone who has the disease. One must live with multiple sclerosis; it will not go away. As Congressman Morris Udall said about Parkinson's disease, "I won't die from it, but I will die with it."1 Having MS does not have to become the predominant reality of life, although when first diagnosed it can be very difficult to think otherwise. Recognizing the ways in which the disease does impinge on one's life and making the necessary adjustments, physical or emotional, are first steps toward identifying the areas in which the disease need not be a factor. The knowledge that one has multiple sclerosis does change one irrevocably and significantly, but it is possible to see one's self as a person who has multiple sclerosis rather than as a "multiple sclerosis person" (an unfortunate term I have seen used from time to time).
Learning to view oneself as a healthy person who has a chronic disease--paradoxical, perhaps, but nonetheless true--takes time. It also requires, of course, that one have a relapsing-remitting form of the disease and be reasonably free of symptoms most of the time. I was fairly free of symptoms but immediately after my diagnosis I thought of myself as sick, which, of course, affected my outlook on life enormously. I found it almost impossible to forget for a moment that I had multiple sclerosis and I allowed it to take over my life. I was, during that time, a "multiple sclerosis person." It mattered not a whit what the doctors said--I could not be reassured.
Over the course of the next year, reassured mainly by the passage of time, I began to see myself as an otherwise healthy person with an underlying but, for the most part, inactive disease. There were, however, some significant ways in which the disease affected my daily life that demanded attention and readjustment. The primary task was learning to live with day to day uncertainty.
There is uncertainty in all of life; events occur over which one has no control and of which one has no warning. The uncertainty of multiple sclerosis is of a different order, however. It is both more urgent and more threatening because it emanates from a very real, ever-present cause and it cannot be ignored. There is the uncertainty of the future--what will happen to me, will I be able to walk in five years, ten years? These are not frivolous questions. It is likely that the disease will recur at some time. Then there is the more immediate uncertainty of tomorrow--will I be able to walk those ten blocks to do that errand I have planned? Uncertainty about the future will not go away, although one can learn over time to come to terms with it.
Long-term uncertainty becomes easier to accept once some accommodation with daily uncertainty has been reached, partly because it is no longer quite so easy to deny the possibilities of the future. But this does require fully integrating the facts and all the implications of the disease into one's view of self. It involves accepting the potential of physical dependency, something that was and remains very hard for me. Part of my horror came from even contemplating the possibility that I might become physically dependent on others. I had to come to terms with my fear before I could view the future--or even the present--with equanimity. Some people say, "You may never become physically dependent, therefore don't worry about it." For me, it was necessary to reach some psychological accommodation with the possibilities so they could be put in perspective. Having achieved some degree of acceptance of what happen to me, I can be less at the mercy of my fear.
Uncertainty about tomorrow requires more immediate adjustment. It is easy to feel anger and frustration when, because one's physical capacity varies so from day to day, plans cannot always be carried out. It becomes even more necessary than usual to know one's priorities. The need to establish priorities is common to everyone but becomes more acute under the pressure of this level of daily uncertainty. I also discovered that my expectations of what I should be capable of were getting in my way. I had to learn to adjust those expectations to the reality of what I was capable of and, more important, to understand that who I was did not depend on what I could do physically. I found that I was concerned about what others would think of me--a self-created difficulty; others usually respected my limits once they were made aware of them. It was hard for me to recognize my limits (especially because they changed so from day to day), but when I did, and conveyed them directly to others, much of my difficulty disappeared. There are, of course, those who will never respect my limits and, in the end, I simply have to accept that.
While reading about marathon runners, I came across the phrase "wall of fatigue." I was delighted to find it because it expressed so perfectly the degree of fatigue I sometimes felt and had extraordinary difficulty in describing to others. Since then, an article on fatigue, "But You Look So Good," has appeared in a National Multiple Sclerosis Society publication.2 "Looking so good" is exactly what makes dealing with fatigue in multiple sclerosis so difficult. I look young, energetic, and healthy and it can be very difficult to explain to an employer, for example, that there are times when walking across a room seems impossible. The onset of this fatigue can be totally unpredictable and, even to those who know one very well, imperceptible. When the article appeared, I gave a copy to my employer. He became more understanding and our daily relations were much easier for both of us. I felt freer to acknowledge those times when fatigue was a real problem and he became more sensitive to my needs. But he had to be made aware of those needs and that was up to me. I have had to remember that explanation (as, for example, when I change jobs) continues to be necessary.
It is very difficult for me to admit that I am tired--to others or myself. And once again, it is important to realize that generally it is one's own expectations that are at stake. It was hard for me to learn that people would not think less of me when I admitted that I was too tired to make dinner, go to the movies, or sit up late and talk. It was difficult to admit that I could not always do everything I had planned. And that "wall of fatigue" can be encountered at very inconvenient times. Once I learned to admit to myself that I could not always do what I wanted when I wanted, I found that others were usually very understanding. But I had to learn to be direct and honest with the people involved. More important, I had to learn to accept that there was a basic uncertainty about my day-to-day life that was not within my control.
Asking for help was not easy for me. I have always been fairly independent and self-sufficient. Suddenly there were times when I was not able to do thing I had always taken for granted--small things usually, but important to me. Asking for a ride home from work or a hand carrying groceries was hard for me but I found that help, if asked for, was available and friends seemed pleased to assist. Once again, the resistance was mine. When I realized that no one thought less of me for admitting that I needed help and, more important, that there was no need for me to think less of me, that difficulty vanished.
The notion of responsibility also required attention. There was a need to sort out the ways in which I can take responsibility for my own well-being from those areas over which I have no control. Careful attention to diet, exercise, and rest, for example, can have an enormous effect on my day-to-day wellbeing and are entirely within my control. The underlying fact of the disease, however, is outside my control. I had some difficulty at first with the notion of responsibility because of the very nature of multiple sclerosis. It is perfectly possible to do all the right things, exercise, eat properly, avoid stress, and so on, and have a recurrence of the disease. It is also perfectly possible to do all the wrong things and not have a recurrence. The relationship between stress factors and recurrences is imperfectly understood, as mentioned earlier.
I still have difficulty with the whole idea of stress. The periods of reintensification I have experienced regularly over the years since my diagnosis can be very frustrating. Now that I understand such episodes better, I usually try to wait them out but occasionally I give up and resort to seeing my doctor. If he rules out some common causes--a urinary tract infection, a virus, a heat wave--his answer is usually that I must be under some psychological stress and there is nothing he can do about that. I never doubt that he is correct in his assessment, but I do find it difficult to deal with. Life is stressful, after all, and what produces stress varies enormously from person to person and from time to time. Much of what I find most stressful is not easily within my power to change. So I am left with the knowledge that it is my own response to the world that is creating the difficulty and that the only thing I can do about it is to try to change that response. Some well-intentioned people have suggested to me from time to time that the course of the disease is entirely within my control and that if I have a recurrence, it will be my fault. No, it will not be my fault, but it is important to recognize those things that are within my control and to take responsibility for them.
Most of these issues involved learning my limits, reordering my priorities, and communicating my needs and limits directly and honestly to my friends and colleagues. The difficulties I had on this level were to a large degree self-created. Either I failed to accept the changes in me and how they affected my behavior or I failed to communicate those changes to others. In retrospect, I think this process would have been much easier if I had had some awareness that these issues would, in fact, be issues.
Having discussed some of the practical difficulties in adjusting to multiple sclerosis, I come to the heart of what I see as central to acceptance and adjustment--the ways in which a disease such as multiple sclerosis forces one to come to terms with some very basic emotional issues. These issues are not dissimilar to those faced by all individuals and, in fact, some are the same. But they are heightened by having multiple sclerosis and have a greater degree of urgency. I also found that many emotional issues that I had previously confronted and resolved were once again open questions. I seemed, to some extent, to have been thrown back to an earlier stage of development and suddenly had to work through these issues again in light of the new realities of my life and to try to achieve new resolution of them.
Out of my own experience I have identified some areas in which the knowledge of having a disease such as multiple sclerosis has significant emotional impact. I firmly believe that each requires a certain amount of awareness and attention before the disease can be thoroughly integrated into one's life. Coming to terms with these issues is both necessary and solitary, but, again, knowledge of what may be involved can be helpful. For some, support groups may be an important resource. For others, it is by necessity or choice an individual process and for those people there is a dearth of information about what to expect. My intention here is not to engage in pseudo-psychologizing or to suggest answers but merely to indicate what the process of full acceptance of the disease may involve and some issues which may be encountered along the way.
The first issue--first because I believe it is at the heart of all the others and must be dealt with before the others can even be identified--is how severely the fact of the disease may affect one's self-image and even self-esteem. I don't think this is generally acknowledged as a difficulty for most of those with a reasonably benign form of multiple sclerosis, partly because there may be no objective change in outward appearance and partly because of a lack of sensitivity to how significant an effect minor physical changes may have on one's sense of self.
I have no idea how general my experience may have been but I do think that to some degree it is shared by all those newly diagnosed with multiple sclerosis. My diagnosis, while welcome in many ways, came, of course, at an awkward time for me. It would be hard to think of a convenient moment for such news. I was feeling very good about my life. I had a new job and I was about to begin graduate school. I was very excited and confident and that confidence had been hard won. It would have been very helpful if someone had taken the time to try to tell me some of what I was facing. I might have denied that I would react that way, but at least I would have known that coming to terms with multiple sclerosis involved more than purely physical adjustment.
It was not until I started graduate school--about two weeks after receiving the diagnosis--that I really began to see what had happened to my self-image and how that was affecting my behavior. My intellectual ability was not in question, and I had always enjoyed the give-and-take of classroom discussion. Yet suddenly I dreaded classes, tried to disappear in the back of the room, and was totally incapable of speaking up. My confidence was shattered, intellectually and socially. As I began to wonder why and to try to regain some assurance, I realized that I felt damaged and that this was affecting my entire approach to the world. I felt that all of me was damaged, including my mind, and I also had a sense that this was apparent to those around me. I had to force myself to attend class and especially to participate in discussion. Forcibly reminding myself over and over that, while I felt "damaged," my intellectual capacity was intact (or so I hoped), I slowly regained some confidence. I found that while I was avoiding some things, I was also putting myself in situations where my competence would be tested and reaffirmed. Regaining my confidence was a very slow process and involved learning to limit my sense of disability and damage to those physical changes that were objectively real.
Another example of how my feeling of disability affected me involved walking. I had always walked very quickly but over the year before my diagnosis, walking difficulties had become an almost daily occurrence. Even on the best days I walked fairly slowly and carefully, and on particularly bad days I crept along and was unable to cross the street before the light changed. Given that I appeared to be perfectly healthy, it is perhaps understandable that drivers honked and yelled at me and pedestrians stared. I, however, found it almost unbearable and it added to my sense of inadequacy and loss of control. It increased my sense of damage and disability because that disability was visible and was being visibly reacted to by others.
Walking slowly is one of life's more unimportant aspects but one that can take on a great deal of significance. I soon learned that if I waited until the beginning of the walk cycle, I could usually make it across the street and I became used to being stared at, although it is not something I am reconciled to and I tend to wear dark glasses excessively. And there was one advantage that I finally noticed, to my great delight--I had time to look closely at people walking toward me, more time to notice my surroundings, more time to observe those little bits of beauty that I had usually overlooked. But the fact remains that my difficulty walking, while not objectively great, had an extraordinary effect on me and it was not primarily physical.
I am convinced that the blows to and the changes in self-image and self-esteem are of primary importance in the process of adjustment to chronic disease and/or disability. Failure to acknowledge both these effects and their centrality makes true adjustment impossible. Curiously, there is a strong disinclination on the part of many, both disabled and non-disabled, to acknowledge this. In a review of Robert Murphy's wonderful book The Body Silent, which stresses the effects of disability on self-image and self-esteem, the reviewer states, Murphy "resorts to a painfully familiar response to social injustice--blaming the victim. He sees a negative self-image as the inevitable fate of disabled persons."3
Self-esteem is a primary issue for those confronted with chronic illness and disability. Yet this reviewer, a psychotherapist and herself disabled, calls this point of view "damaging and unfounded" and goes on to say that disability is a social, not an individual, problem. Of course, disability exists for the individual in a social context and its meaning is shaped by culture. And it is clearly in part because of that social and cultural context that the impact on the individual is so enormous. Damaging, indeed, however, is a denial that disability does powerfully and negatively affect self-image and that a primary task for the disabled individual is to acknowledge and confront that reality.
I must define my own experience and, notwithstanding the importance of society and culture in shaping it, it remains mine. To say that there are no psychological consequences of disability (whatever their source or explanation) is to engage in denial of the most destructive kind. It was essential for me to admit to myself the impact of MS on my sense of who I was.
Contributing to the impact of MS on my sense of self-esteem and even identity were my strong fears about whether my intellectual capacity was, in fact, intact. This fear has not left me and returns with full force from time to time. The association between brain and intellect is quite properly very strong and, on a visceral level, it is hard for me not to assume that a damaged brain equals a damaged intellect, notwithstanding my lack of real evidence that my cognitive abilities have been damaged. There is some rational basis for this fear. Research has suggested that many persons with multiple sclerosis have some degree of undetected cognitive impairment.4 This fear cuts to the very core of who I am and is not something I can be easy about. I cannot be reconciled to the thought that my mind might become impaired; the best I have been able to do is to accept that it is a possibility--however remote--and to be open to and learn to live with my fear. It is not something that is at the forefront of my consciousness all the time, but neither is it something that ever entirely goes away.
The continuing strength of that fear was brought home to me several years after my diagnosis when I took a day-long battery of very difficult tests in connection with an employment application. I did very well on those tests and it was not until I heard the results that I realized how afraid I had been that my intellectual capacity had been damaged. This fear is heightened, of course, by the question of to what degree I would be aware of such damage or impairment or whether others would tell me. This raises interesting and age-old questions about consciousness and the limits of the self. In this connection, I recall being shown CT scan pictures of my brain. As the neurologist pointed out the areas of damage--the plaques caused by MS--I marveled at the notion of contemplating with my brain, my damaged brain.
The knowledge that my brain was damaged--the very center of my being--affected my entire image of myself and my integrity as a person. I felt less than whole and this was reflected by my hesitant behavior in all situations. I had always been an extremely competent person and yet I was feeling incompetent in situations that should have been second nature to me. It is difficult to convey the strength of these feelings; they can hardly be overstated. My whole notion of who I was was threatened and it was only very slowly that my feeling of disability began to be limited to the ways in which I was, objectively, disabled.
It is important to realize that one may have a very real sense of disability even when that disability is minimal and generally invisible to others. My disability was minimal, limited to difficulty in walking on occasion, a less than optimally functioning arm, balance problems, and unpredictable, if occasionally severe, fatigue. At the best of times, this was entirely invisible to others; at the worst of times, it was very visible as I stumbled along. But even at the best of times, it was always obvious to me that my arm and leg were not the way they "should" be and that I was not the way I once had been. And this sense of disability with its accompanying feeling of no longer being in control flowed over into all areas of my life.
My image of myself was altered. I had not realized--had not thought about--the ways, for example, in which my physical presentation of myself affected my self-image. I was more aware of the fact that my sense of self was very much bound up with my intellectual ability. But I had no sensitivity to the ways in which alteration in my physical self would affect my intellectual and emotional life. My difficulty with walking and my experience in graduate school were for me two of the more significant experiences that forced me to come to terms with the impact of the disease on my sense of self and to realize that while my brain might be damaged, my personhood need not be, and, in fact, could be enhanced. For others, it may be other kinds of experiences that lead them to this realization. Regaining my confidence was a very slow and painful process. Recognizing that multiple sclerosis had not only attacked my brain but had attacked my entire being was the first step. The second step was acknowledging the ways in which the physical changes had irrevocably changed me and affected my sense of self. And the third step was differentiating the physical and the emotional aspects of the impact of the disease.
The second crucial aspect of the process of acceptance is very closely related to the first, those issues of self-esteem and self-image, and involves the notion of "giving up." By this I mean accepting the changes and limitations the disease has imposed--what has been lost. I, for example, no longer stride quickly and energetically along the street. That is not one of the biggest things one can be required to give up, by any means, but it was part of me and it no longer is. I reluctantly and finally gave up the notion of getting a graduate degree. I was forced to recognize that I did not have the energy to work full-time, commute, and go to school at night. Giving that up was difficult; academic work was important to me and a part of my life. I have had to rethink my goals and aspirations. I have been very lucky in this regard; I have not had to give up anything that is absolutely central to my notion of myself and my place in the world. What if I were a professional tennis player who could no longer play tennis? My idea of who I am has never been very closely related to what I do, but if what was lost was central to one's identity, the struggle to redefine, or perhaps even to re-find, one's self would be enormous. And there are many who have had to do just that.
I had one experience that taught me a great deal about giving up, about self-image, and about what is really important. When I started graduate school, I was taking ACTH injections. The most noticeable side effects were that I gained a lot of weight (I have always been slim) and my face not only became puffy but changed shape. The degree of the change in my appearance was such that one morning when I looked in the mirror, I failed to recognize myself. I looked nothing like my internal vision of myself. I was forced to realize, through observing the reactions of those I did not know, how much I had always relied on my physical appearance both to convey information about me to others and to carry me through situations. I looked stupid and ugly and I was suddenly being treated as stupid and ugly. That realization was entirely new to me and rather a shock. How much I had taken for granted. But, in the context of this discussion, the importance of the experience (the changes were temporary) was that I realized I could give that up, not easily and not without grief, but my appearance was not essential to who I was. There was some freedom in that recognition. And, once I realized that my appearance was not ultimately essential to my sense of self, it became easier to accept the other physical changes I was experiencing.
The process of giving up also involves reordering priorities. For me, the process started with the realization, described above, that my entire sense of self was affected by the knowledge that I had multiple sclerosis. And I soon realized that I had to think carefully, once again, about who I really was, what were the truly important things, and what were those things that, on reflection, were not all that significant. Once that has been done, it becomes much easier to give up that which is lost. Contemplating the possibility that in five years or ten years I may not be able to walk places the fact that I now walk with difficulty in perspective. More broadly, it enabled me to recognize that who I am is not dependent on my physical self, although the intimate and intricate relationship between the two is in some measure what this whole process is about. Forcibly reminded of the fragility of life, I began to pay more attention to those parts of life I deem most important. I learned a great deal about what is integral and integrating to me and I stopped wasting energy--physical or emotional--on those things that really do not matter.
To sum up so far, the emotional impact of multiple sclerosis can be staggering. The feeling of damage can involve the innermost reaches of one's psyche and affect one's entire approach to life. For me, the process of adjustment required searching examination of who I was and what it was that made me who I am. I had to learn that certain things that had seemed to be integral to my sense of self could be given up--that, for example, even when I looked stupid and ugly, I was still who I had been. Accepting the fact of this disease was a far-reaching and comprehensive process, probably never to be fully completed.
Having a very bad time after a period of feeling very well is sometimes like a recapitulation, albeit much faster, of the whole adjustment process. The first bad day is all too often a shock; I have forgotten what it was like, not only the purely physical aspects but the whole constellation of feelings and reactions. I forget and I have to remember exactly what is involved in living with chronic disease and with disability. Acceptance is an evolving, continuing, and often repetitive process. And while each cycle, as it were, holds within it all that has gone before, it also incorporates new experience and understandings. Acceptance is not an event or a task that once achieved is completed. There is no sequential progression from diagnosis to acceptance. I find myself forgetting this--forgetting even the existence of the process itself.
Another area in which the fact of this disease forced me to come to terms with some new realities and confront some very basic emotional issues was in recognizing the impact of my experience on my primary relationships and, to a lesser degree, on all my relationships. As with my own emotional life, issues and conflicts that had been worked out and confronted with a large degree of success suddenly seemed to be alive once again. The fact of multiple sclerosis and its impact on me had a significant effect on my relationships with others in ways that I would not have dreamed possible and was certainly not prepared for.
Dependence once again became an issue for me. The conflict between independence and dependence (common to many women of my generation) had, I thought, long since been acknowledged and resolved. Yes, there was a part of me that longed to be protected and taken care of; but, no, that was not dominant and I would not allow it to interfere with or structure my relationships. Now, however, not only was I faced with the very real possibility of physical dependence, but suddenly a large part of me seemed to be asking to be taken care of--indirectly, to be sure, but nonetheless it was real and I did not like it. Yet, at the same time, my fear of dependence was keeping me from asking for help when it would have been legitimate. And while my fear of becoming very sick and dependent increased my need for a safe place, for certainty in my emotional life, I was expressing that fear and those needs indirectly and inappropriately.
I also realized that for the first time I was really afraid of being left alone and that this fear was subtly affecting my relationships. Not only did I find myself implicitly asking to be taken care of but I was going to extraordinary lengths on occasion to please others in ways that I found to be dishonest as well as manipulative. I discovered that I was afraid to express my anger and I was uneasy about others' anger. I had thought that anger--my own and others--was something I'd learned to accept and deal with honestly and openly. Suddenly I found that my anger frightened me and the anger of others terrified me. I realized that I was afraid that people would leave me if I was honest about my anger or if they were angry with me, and my fear was of being left alone with this disease and its possible implications.
I also had a great fear of somehow blackmailing those I was close to--of using the fact of the disease in an underhanded way to get what I wanted. I was second-guessing others--not trusting them either to see me clearly or to be responsible for themselves. These were all issues that I thought had been worked out successfully years earlier, but which suddenly, under the impact of my disease, rose to the fore again.
One result of the disease for which I was thoroughly unprepared was its direct and extraordinary effect on my relationship with Nick. We had a strong relationship and I thought that the impact of the disease would be absorbed easily and with no major adjustments and that, insofar as there were difficulties, they would be my difficulties. I was wrong. At the time of my diagnosis I was briefly hospitalized to begin the course of ACTH injections. A series of incidents occurred over the first few days after I left the hospital which alerted us to the fact that something was going on which involved not my reactions to the disease but his. An exceptionally good-humored and easygoing man, Nick was suddenly becoming very angry in situations that normally would have caused exasperation at most. And to my dismay, much of his anger seemed to be directed at me. The level of his anger, and its indiscriminate nature, was so out of proportion to events that it alarmed us both.
We very slowly began to understand that his anger was not so much with me as on my behalf and arose from his feeling of helplessness. He loved me, wanted to be able to make things OK for me, and had difficulty acknowledging that my MS was something he could neither fix nor alleviate. He was angry with himself for not being able to help me, angry with the world in a vague sort of way for allowing this to happen to me, and angry with me as well for, in some obscure way, betraying him, letting him down by getting sick. He felt very helpless and he reacted by striking out at whatever got in his way--including me. In The Wings of the Dove, Henry James speaks of this as "the woe of learning the torment of helplessness." 5 Before Nick could come to terms with the fact of MS in my life, and before we could incorporate it into our relationship, he had first to acknowledge his anger and, more important, his powerlessness to change what had or what might happen. He wanted to make everything OK for me and he couldn't. That is a hard lesson to learn. In retrospect, this all seems very clear to both of us; at the time, it was very difficult.
We were both helped, strangely enough, by my difficulty in continuing with the ACTH injections. I had been taught to do it in the hospital, it had been very easy for me, and I'd not given much thought to continuing the injections at home. It became apparent very quickly, however, that giving myself an injection with a nurse standing by and doing it alone were two entirely different things. I had an extraordinarily difficult time and as the days passed it got harder, not easier.
Nick's response to all of this could not have been better. He neither belittled my difficulty nor took it more seriously than need be. He did not try to do it for me. He understood, as did I, that it was important that I do it by and for myself. Instead, by his presence, and his calm assurance that I could indeed do what was necessary, he made it possible for me to find and use my own strength. He was supportive in the truest possible sense of that word.
Going through that together was good for both of us. And it was really through that process that he realized that no, he could not--nor should he--do for me what I needed to do for myself, nor could he make everything OK for me. When he accepted his essential helplessness, his anger disappeared. But he also realized that by his presence, by his trust and belief in me, he could help to make it possible for me to do what I needed to do. And I not only realized how necessary that trust and support was but learned something about seeking and asking for the right kind of help.
Soon after this, an incident occurred which, seen in retrospect, contains elements of many of the issues that were raised anew in our relationship by the fact of MS in our lives. It has become symbolic for us and a reminder of the kinds of difficulties that can occur. One afternoon in a parking garage I watched him back his car out and smash his fender on a concrete pillar. No damage was done to his car and we joked about his ineptness. The next afternoon, I backed my car into the same pillar and, unfortunately, did a fair amount of damage. My first reaction was to burst into tears and I started to telephone him to ask for help. I immediately bit my mental tongue, realizing not only that I needed no help, but that even if I had a problem, I was perfectly capable of taking care of it myself, and drove home.
By the time I got home I had realized the funny side of the story and called him at his office. My intention was to say, "You won't believe the stupid thing I just did, after watching you do it yesterday and isn't this funny?" He, however, jumped right in and started yelling at me--"What do you expect me to do? You always expect me to fix everything for you"--and hung up on me. I was enraged not only at his assumptions but that he would make assumptions at all. He soon called back and we realized exactly what we had done. He had assumed I was calling for help, thought I was being manipulative by covering a request for help with a joke, asking for help when I did not really need it, and was angry. He had not bothered to listen to what I was saying. I was forced to realize that he had some reason for these assumptions. I had been relying on him heavily in both appropriate and inappropriate ways. He wanted to help me and was forced to learn that in many ways he could not. I wanted help and had to learn that what I was really asking for--to be made whole, to be taken care of, for security, emotional and physical--was not available. It took a while for us to sort out the ways in which help was available and those in which it was not.
This story was paradigmatic for us. It illuminated some of the ways in which the new fact of my disease and its effect on me were clouding our relationship. Yes, I was dependent in some new ways but that need not spill over into all areas of the relationship. He and I had learned the hard way years earlier not to make assumptions about the other's intentions, to be honest and direct in communicating our feelings, and to trust the other to be responsible for his own feelings and needs. All of a sudden, it seemed that we had forgotten the very basis of our relationship--trust and honesty--and it took something silly like our bent fender incident to remind us of what we were doing.
I had to realize the ways in which I was imposing on this relationship and others the conflicts and struggles I was experiencing as a result of multiple sclerosis. I had to learn the ways in which my experience did affect relationships and the ways in which it need not. I had to recognize, for example, that my great need for certainty and security, while understandable and legitimate, could be seen for what it was and need not be allowed to muddy relationships. I had to come to terms with my fears, my need for security, and I had to do it by myself.
While the impact of the disease on me affected my closest relationships most strongly, I soon discovered that it had an impact on all my relationships in one way or another. Almost without thinking, I immediately told all my relatives and friends that I had multiple sclerosis. My thinking, such as it was, was that it was a major event in my life and insofar as it affected me, it would affect my relationships. I think I also thought that telling people would get it out of the way and, in some fashion, divest it of some of its importance to me. I am not sorry I did it that way--I received a lot of support and reassurance that might not otherwise have been available. I discovered that almost everyone I talked to knew someone with multiple sclerosis and I learned a great deal and was reassured by the stories I heard. There is also a sense in which telling people and dealing with their reactions forced me to confront the disease more quickly than I might otherwise have done.
I made mistakes, one of which haunts me to this day because it is such a stark example of exactly what I do not want to do or become. Soon after my diagnosis, when I was feeling exceedingly unattractive and miserable from the side effects of ACTH, I met an old friend in the supermarket. I had not seen her for several years and she routinely asked how I was. I blurted out that I was miserable, thank you, and that I had multiple sclerosis. Her face fell, she muttered something, and walked away. I realized that I had done something totally unnecessary and self-indulgent. I could just as easily have responded, "Fine, thank you." The question was routine, so, too, could have been my answer. Telling her I had MS was purely gratuitous. From time to time, I have told others whom, on reflection, there was no need to tell. I think I would be a little more selective and a little more careful about timing were I able to do it again.
However, I was totally unprepared for the range of reactions I received or their force. It seemed at times as though it took more emotional energy and wisdom to deal with my friends' reactions than it was taking to accept the disease myself. And it had never occurred to me that telling someone about the disease could cause difficulties for them in our relationship. Although, in retrospect, I suppose I might have been more sensitive, this is one of those issues that no one sees as important enough to mention at the outset but which is difficult to foresee and is important.
The day I learned the diagnosis, I spent the evening with two of my closest friends. I was in shock and totally unable to focus on, much less discuss, anything else, and told them what had happened as I walked in the door. Their reaction was to fail to acknowledge what I said. They hardly said a word, but it was very clear that they would not only not discuss it, they did not want me to talk about it. They simply and totally ignored what I was saying. These were sensitive, caring people who had been good friends of mine for years. I felt very let down, very alone, and I was not able that night to understand their reaction. It only became clear to me later that they were angry and frightened themselves and had no idea how to respond to my (not so implicit) needs that night.
I encountered varying reactions in the next few weeks from close friends and relatives whom I told of my disease. Responses ranged from denial, generally taking the form of a refusal to talk with me about it or even to listen to me, to anger. The anger astounded me, as it seemed to be directed at me. Other reactions I encountered included: "Yes, so what"; something I called "the end- of-the-world" reaction; and even disappointment--"But you don't look sick."
One angry reaction came from a very close friend and, at first, I perceived only the fact of his anger and that it seemed to be directed at me. I finally realized that what he was saying was, in essence, "How could you do this to me?" He had relied on me always to be there when he needed me, and to be strong, and he now felt, apparently, that I was unreliable. He felt abandoned and was angry about it. He also, like Nick, was angry that something had happened to me and he could do nothing about it. It took me a while to realize this, though, and my first reaction was to feel very hurt. I finally asked him whether, in fact, he was angry with me and he admitted that he was. We talked about it at some length. Once he realized that I remained who I had been, and acknowledged his anger to himself, we were able to be good friends again. But reaching that point took a lot of time and energy.
The "yes, so what?" reaction has always fascinated me. It usually takes the form of a recital of that person's own symptoms and medical history--an "everything you've got, I've got more of" response. I have often wondered whether it is intended as a form of comfort or whether it is another reflection of fear, of not wanting to know that such things can happen. On the other hand, there are those who respond as though disaster is imminent and seem to want me to act very sick. No matter what I say or do, they relate to me as though I were sick. One friend continues to urge me to retire because of disability when it should be perfectly obvious that I am capable of working.
There have been some people whose response to learning that I have multiple sclerosis is complete aversion. A good example of this was the casual acquaintance I chatted with for a couple of hours in a social setting. There came a time in the conversation when the fact of my MS seemed relevant and I referred to it. He said, "Why didn't you tell me that before?" and immediately walked away. Some of this aversion seems attributable to a fear of contagion. This is difficult to pin down, of course, primarily because those who react in this way do abruptly leave.
There were people who responded perfectly. They let me talk about it when I needed to, let me voice my fear without either belittling it or being themselves afraid of my fear. They were sorry this had happened to me and said so and they conveyed real acceptance and gave me real support. They treated me no differently than they ever had. Thinking back, these were people who were both very aware and very accepting of who they themselves were.
These varying responses were my introduction to the whole notion of what it means to be sick or, more accurately, to be perceived as sick, in this culture and of how difficult it can be to retain a feeling of integrity in the face of these responses. There is ambiguity in a chronic disease such as MS--one is sick but not sick; one is sick at some times and healthy at others; and one's physical appearance is not necessarily reflective of either state. My belief that the diagnosis, that discrete and clarifying event, would clear up all the confusion in my world of relationships began to be confounded.
In many of these encounters I felt as though people were reacting more to the fact of the disease than to me and that at those times, a screen had been erected between me and the world. I was not seen then as a person with a disease; the disease alone was seen and people responded to it in what I began to see as fairly predictable ways.
I was reminded very quickly that people fear reminders of their own vulnerability and, ultimately, of their mortality. And because most people know very little about multiple sclerosis, they tend to assume that the outcome will be immediately devastating. Many women of my age seemed to react by thinking, if this can happen to you, it can happen to me, and since I don't want to acknowledge that, I will just deny that it has happened to you. Many people also firmly believe that this (MS or whatever) happens only to someone else, a defense that is only effective if enough distance and separation is maintained.
All this occurred at a time when I was very needy and stunned. But I found myself being forced to listen carefully and try to understand what was behind some of these reactions. It was undoubtedly very good for me to be forced to think of something other than myself. And there was a lot of comic relief; many of these encounters were very funny. Trying to understand what was going on was very useful to me in my understanding of my own reactions to the disease. At the time, however, it was very trying and required a lot of emotional energy I didn't have. And it had simply not occurred to me that this was part of what the disease would involve. I had had the notion that I would tell friends and they would be supportive and caring and that would be that. Most of my friends ultimately were just that, but it was not a simple process.
Throughout this time, I was reminded of how rare and wonderful it is to be unconditionally loved and accepted. There were many times during this process when I was not particularly lovable and yet I was loved and accepted by those closest to me. I learned especially to value those few who openly conveyed this unconditional acceptance and love and who gave me an enormous amount of support without in any way trying to do for me what I had to do for myself. Those were the people who enabled me to find and use my own strength.
After learning that I had multiple sclerosis, I was faced with a period of significant change and adjustment. The medical professionals I came in contact with, for whom I have great respect, not only gave me no warning of what could be involved, but consistently implied that no significant adjustment was necessary. This implication, in itself, made the process more difficult because I wondered whether I was overreacting. In retrospect, I don't think that I was and I think that the process I went through in coming to terms with the knowledge of the disease is, in general terms, very common. There is a lack of information about this process and I believe it is important that such information be available to newly diagnosed persons.
The immediate process of adjustment to multiple sclerosis required identifying those areas of my life that were changed by the fact of the disease and then adjusting to those changes. It required recognition of the ways in which I was changed and the ways in which the disease and my reactions to it affected my relationships. It required a new level of clarity and honesty as I looked at who I was and how my whole being was affected. I was forced to look very closely at what I was doing as I tried to fully accept the implications of having multiple sclerosis. Multiple sclerosis is not the primary fact of my life--significant, yes, but I am not and I refuse to be an "MS person." It took a lot of time and effort, however, before I truly came to terms with the implications of the disease.
By identifying the areas in which the disease did make a difference, I was able to gain some clarity about the areas of my life where it is not--and need not be--a factor. It is important to keep the fact of the disease and its accompanying constellation of feelings from affecting those parts of life and living where it need not be an intrusive factor. But before I could do that, it was necessary to fully accept the ways in which it did change my life.
Multiple sclerosis, though not usually a fatal disease, does bring one face to face with the unavoidable but unacceptable knowledge of one's mortality and fragility. Becoming reconciled to the unacceptable is a slow and difficult process and requires new levels of self-knowledge. Throughout this process (and I don't mean to suggest it is complete--I imagine it is lifelong), I was beset by feelings of uncertainty as to whether my emotional responses were "normal." As I stumbled through these changes and discoveries, it would have been not only reassuring but positively helpful to know that my reactions were to be expected. There would have been a great deal of support in the recognition that what I was experiencing was natural and necessary. The process, I think, could have been shortened.
After I had achieved some degree of equilibrium and had begun to integrate the fact of MS into my life, I began to think more about some of the larger issues and questions raised by disease and disability in contemporary American life. The issues I mentioned earlier became pressing ones for me as I slowly realized that acceptance and adjustment on this personal level was not enough to live with any ease with chronic illness.