Wrestling with a Phantom

There's the whole question, which interested me . . .
of the things one doesn't say; what effect does that have?
. . . And then there's the question of things, happening,
normally, all the time.

VIRGINIA WOOLF

A few years after discovering that I have multiple sclerosis, I visited Egypt with a friend. There I had an experience that remains a metaphor of much of my experience with MS. We found ourselves one day at the airport in Luxor on our way to Cairo.

The word "airport" is something of a misnomer; I was reminded of an old and little-used branch railroad station. There was one room and one small ticket window. Jammed into this very hot and airless little room were hundreds of people, few of whom seemed to know what was going on. My friend and I eventually checked in for our flight to Cairo (although that, too, conveys a false impression of order and efficiency) and, by comparing our boarding passes with others, got at the end of what seemed to be the proper line.

Nothing happened. It soon became obvious that no one was going anywhere any time soon and that the line was essentially irrelevant. We spotted some empty seats and started working our way toward them through the crowd. Suddenly I was pushed hard, lost my balance, and fell. We realized that we were in the midst of a group of elderly American tourists, all with name tags, who were loudly objecting to our presence in their area and actually pushing us away. "Who do they think they are? They don't belong with us. They are pushing into our line. Why does she have a cane--there's nothing wrong with her." They were quite amazingly nasty and, in the center of this scene of very Egyptian absolute and seemingly uncontrolled chaos had created their own bit of America. The contrast was compelling. They wanted to know exactly when the flight was leaving and the answer, of course, was always the same--("God willing" or "when God wills"), which infuriated them. They would not yield an inch of their fiercely guarded territory.

Faced with a total inability to control what was going on, they were going to extreme lengths to foster their sense of being in control. They seemed to think that continually fighting for a place in this largely illusory line would get them to Cairo faster. My friend and I, on the other hand, having accepted that we had no control in this situation, were beginning to revel in that feeling; the mood is very catching and, after all, did it matter if we ever got to Cairo? We were more concerned with waiting, being there in some comfort while they, faced with chaos, fought ever harder to maintain the illusion of doing something by pushing and pulling in line. And that, of course, was why there were empty seats for us.

My experience with MS is first and foremost a personal story. It is rooted in my history and my personality. Much of what I have found most difficult--and the metaphor for that is being pushed around by those rude Americans in Luxor--is a personal issue and something, no matter its source or explanation, for me to come to terms with. But it became increasingly clear to me that taken out of the context of the society I live in and the cultural framework through which meaning is created, there was limited adaptive power to be found in my personal story. The meaning of disability and chronic illness and many of the consequences of those states are socially determined. It took me a while to realize that. Initially I thought that coming to terms with having a chronic disease was an individual task, one to be undertaken in isolation. But chronic disease is not just defined by society, it is experienced through the mediating structures of society and culture.

The scene at the airport in Luxor began to seem a paradigm for me of that juxtaposition--that relationship. Me set alongside, and in, a society that gives its own sets of meaning to my experience. It was the very starkness of the contrast--that reconstruction of America set down in the midst of Egypt--that was so revealing and that allowed me to begin to see my own experience in a larger context. And it was that context, together with my own story, which ultimately provided some illumination and eased the process of coming to terms with having a chronic disease.

My experience with multiple sclerosis began long before I ever associated the name with myself. When I was twenty-three, in the late 1960s, I was hospitalized for a week-long battery of neurological tests. Over the previous six months, I had experienced a host of symptoms. I had recurring urinary tract infections, balance and vision problems, difficulty with walking and with my speech, and extreme fatigue. The speech problem was frustrating. It involved knowing exactly what I wanted to say and being unable to articulate it. There were also times when I was physically unable to form words. The most problematic symptom for me was that I was completely unable to walk in a straight line. I always veered right and routinely walked into walls. Negotiating the sidewalks of Manhattan was difficult, to say the least. I was forever having to stop and move back into the center of a sidewalk. At my office, where I was a litigation paraprofessional in a law firm with long narrow corridors, people joked about my bouncing off the walls as I walked (if it could be called that) from one place to another.

I saw a doctor, who spoke of overwork and resulting exhaustion and treated some of my symptoms. Essentially, however, he seemed to think that because there was no readily apparent reason for my complex of symptoms, there was nothing wrong with me. The only problem with that diagnosis from my point of view was that I did not get well; I became increasingly weak and my symptoms became more and more pronounced. It was very difficult for me to function on a day-to-day basis.

Eventually, and I think partly in order to protect himself--even in the late 1960s doctors were concerned about malpractice suits--my doctor said that one possible explanation for all these symptoms was a brain tumor and recommended a neurological workup to rule out that possibility. Because my family knew a well-regarded neurologist at a medical center near their home, it was decided that I would go there for these tests. I say "it was decided" purposely. By this time I was not functioning well at all and merely acquiesced in the decisions others made for me.

In the hospital I had what felt like every medical test known to man, from brain scans--the old-fashioned kind--to electro-encephalograms to elaborate vision tests. I was visited by heart specialists and virologists. The most frightening test and, after the fact, the most interesting, was a brain angiogram. Dye is injected through an artery in the neck, and pictures are taken as the dye flows through the brain. Because this was a teaching hospital and angiograms were rarely done on one so young, there was a large crowd squeezed into a small room, all, it seemed, looming over me as I lay there. There was difficulty inserting the needle into my neck, and I went into shock. That increased the uneasiness I had begun to feel when I had been required to sign a special release form for the procedure. What was fascinating, and frightening, was the feeling as the dye flowed through my brain--one never feels one's brain, but suddenly it was a palpable reality. Because dye was injected only into the left side of my brain, I could feel that and, at the same time, not feel the right side. It was both terrifying and exhilarating. I also felt as though I must squeeze my eyes shut to keep this hot, surging liquid from escaping from my head. It was altogether an amazing experience.

At the end of all these tests I was told that there was a faint but unlikely possibility that I had had a virus which had since disappeared. The doctors' best judgment was that there was nothing organically wrong with me, and that I had some kind of unspecified nervous disorder. I was told to rest for a couple of months, and that because there was no medical reason for what had been happening to me, there must be an emotional reason. It was "all in my head." It was also pointed out to me that one good reason for my illness could be found in the circumstances of my life. At that time I was seriously involved with Nick, the man I was later to marry, and I was told that this relationship was making me sick, and that unless I ended it I would get sick again. At that time, Nick was still married to his first wife, and I was violating all sorts of social canons by my involvement with him. This was, after all, 1969. I had no intention of ending this relationship and I felt that, given the undercurrents of disapproval emanating from my family, my illness was being used as a way to exert pressure on me. There was some reason for this feeling: the messages I was receiving were very confused--nervous disorder, emotional reasons (I was simply neurotic), my relationship with Nick.

On the day that I was discharged from the hospital there was a blizzard, and, because my family could not pick me up, old friends took me to their house to spend the night. They were very kind and acting, I am sure, from good intentions, talked incessantly about how wrong Nick was for me. Nick was also stranded because of the blizzard, but I was not allowed to see him. It may sound strange that I, at twenty-three, allowed myself to be not allowed to do something. But I remember the feeling of extreme powerlessness I had at that time and I was very unwell and had no strength. What strength I had I used to insist that I would not end this relationship.

The next day my father arrived to drive me home and talked about the changes I needed to make in my life. In the car, he commented that my jaw was set and that I was being very stubborn. A set jaw describes perfectly how I felt: I felt very alone, very misjudged, and determined to hold to my own sense of who I was and what was right for me. I knew that there was something definitely wrong with my body but there was no one at that stage, with the exception of Nick, who agreed with me. I felt as though I was alone in front of a wall of figures endowed with expertise and authority who were all saying that I was wrong. From my perspective, the central fact, the central reality in all of this, was that no one trusted me; my family and friends tended to trust others--the voices of medical authority and knowledge.

At this time, it was strongly suggested that psychiatric help was in order. After all, I was sick and if there was nothing wrong with my body there must be something wrong with my mind. My doctors very explicitly said: "We can find nothing wrong with you, therefore there is nothing wrong with you. If you do not get well, that means there is a psychological cause for your illness." I was also gravely warned that unless I "worked through my problems," I would get sick again.

I was very resistant to the idea of psychiatric help but eventually agreed to see someone. I went back to New York, where I lived, and started trying to find a psychiatrist. After being interviewed by a couple of psychiatrists who seemed unsympathetic and unhelpful, I simply refused to see one. Beyond the fact that I saw no reason to engage in that exercise, it seemed very clear to me that the explanation for walking into walls was not to be found in the far reaches of my childhood.

I did slowly recover my strength; my symptoms abated entirely with time and, after a couple of months, I began working again. This episode left me uneasy, however, and uncertain. I had to doubt my own instincts to some degree because I received almost no support from anyone. Could I really believe that I was right and everyone else wrong? I did say that but mainly to myself, and there were many moments when I doubted my perceptions.

I felt uncertain vis-à-vis those close to me because they seemed to accept the notion that it was all in my head. I felt that people saw me as unstable and perhaps neurotic. People did not trust me to know what was going on in my own body. They listened, instead, to the experts and the experts had dismissed me. I hesitated to mention or complain about any physical ailments because I doubted they would be seen as legitimate. I was very reluctant to see a doctor for the most simple thing because I was afraid I would be seen as a hypochondriac or as simply hysterical.

After I said no to psychiatric help, it seemed to me that I was viewed as both denying that I had an emotional problem and being unwilling to do the "hard work"--that phrase beloved of therapists--necessary to deal with my problems. I felt very strongly that, seen through the eyes of others, there was an element of choice in my weakness because I had rejected the recommended and available fix.

I did get well again, however, and except for the lingering and profound effects on my relationships, the episode seemed closed. I seemed to tire more easily and had little stamina; otherwise all the symptoms disappeared. I resisted as best I could the effects on me of what other people thought. With the single exception of Nick, who seemed simply to accept that I lacked stamina and respected my obvious limits, most people treated me as though any weakness was illegitimate and, being a reflection of some emotional deficiency, to be ignored. It was not a valid reason for anything.

Four years later, when Nick and I were living together, I got sick again. "Aha, we were right all along." And because there was now a history of my being "sick" with no reason, the scenario was repeated, except that this time less effort was made to find a physical cause, and I was more quickly referred to a psychiatrist. I was told that I was clinically depressed and that my symptoms were a result of that depression.

The symptoms this time included recurrent urinary tract infections and a borderline hyperactive thyroid. My legs were extremely weak, which made walking at times almost impossible. I had bouts of incredible fatigue in which it seemed I would never be able to move again. I soon learned that a thyroid problem is one of those ailments that is not seen as discrete but as tending to involve psychological problems. What luck. In any event, treatment of the thyroid did not cause my symptoms to abate. I also, almost overnight it seemed, became extraordinarily sensitive to heat. I could no longer tolerate heat and humidity at all; my weakness and shakiness increased dramatically. It seemed clear to me that there was something radically wrong with my body, but again I received little support for that notion. I don't recall whether at the time I connected this episode with the earlier one except in terms of its emotional consequences. New doctors, on hearing my medical history (or lack of medical history), seemed quicker to assert that there was nothing wrong with me. Those close to me, again with the exception of Nick, concurred.

And I had been warned four years earlier that unless I accepted that there was a psychological reason for my problems, I would get sick again. I had gotten sick again. It was becoming very hard for me to continue to believe in my own interpretation of what was happening to me. Again, no one trusted me, and that lack of trust and the sense I had of being railroaded led to a deep and resounding sense of betrayal by some of those who were close to me.

Primarily out of a sense of deep exhaustion and because I felt very alone, I agreed to see a psychiatrist. I would have agreed to almost anything. My level of despair and my sense of helplessness were so high by this time that I might well have been clinically depressed. I tend to think, however, that I was just extremely frustrated. I was certainly unhappy about being so sick, knowing that, whatever the cause, there was clearly something wrong with my body, and receiving no support from anyone.

I soon found myself in the classical box of Freudian psychology: until you admit that we are right, you are wrong. I asked what seemed to me the obvious question, "What if I never do agree that you are right, what then?" "Then," I was told, "that will prove we are right." I would not be emotionally healthy until I admitted there was a psychological cause for my physical problems. My refusal to acknowledge that was a confirmation as far as they were concerned, another pathological sign.

The fact that I would not admit that I was clinically depressed (and I think in retrospect it is clear that I was not) confirmed them in their belief that I was. The fact that I clearly was not very happy about any of this was also seen as confirmatory. I found the whole situation very depressing indeed, and it was difficult to maintain a sense of integrity in the face of all this disapproval and certainty.

An event occurred during this time that was so extreme and so absurd that it actually increased my sense of integrity and affirmed my belief in my own perceptions about what was happening to me. It also increased my distrust of psychiatrists and my belief that they can do a great deal of damage on occasion. I had made an appointment with a psychiatrist. When making it I had told him that perhaps it would be better to postpone it because my car was being worked on that morning and I was not sure it would be finished in time. He said no, if I had to postpone at the last minute that would be OK. It became apparent that morning that the car would not be ready in time and so I called to cancel the appointment. The doctor said, "Don't cancel it, just call when you are ready." So I called later on and he said, "OK, I'll see you when you get here."

When I got to his office, he began to scream at me (and there is no exaggeration here) for being late. I said, "Wait a minute. I am not late; we changed the appointment." And he went on to talk about how I (someone he had seen once before for an hour when I had been punctual) was chronically late and how that indicated my hostile and manipulative nature and, moreover, that I expected the whole world to bow to my whims. I found myself on the defensive (a big mistake) and said, truthfully, that I was almost never late for anything. He then accused me of being a pathological liar. He went on to say that I was clearly suicidal and no doubt had often attempted suicide in an attempt to gain attention. By this time, I was in a state of shock--this man knew nothing about me and was apparently drawing all these conclusions from my "lateness." I was rarely late; I had never considered suicide. He continued to yell at me and said that undoubtedly I would successfully kill myself. At that point, I recovered my wits and said I was leaving. As I walked out, a gust of wind blew through the open window and the door slammed shut behind me. As I walked down the hall, I heard him yelling that my slamming the door confirmed everything he thought about me.

I was completely shaken by this episode, and, while I know that this man was not representative of the profession, it ended my willingness to look for help in that direction. I think this episode is also illustrative, albeit in a very extreme way, of that box I referred to earlier. If you have a view of the world, it is all too easy to see everything as supporting it. It also occurred to me at the time that had I been suicidal or emotionally vulnerable, that episode might well have been the last straw. I do imagine that what happened to me with that man was anomalous, and it has never made much sense to me. But it does serve as an extreme example of what can happen to someone in the position I was in at that time.

Perversely perhaps, instead of shaking my confidence in myself, that man convinced me that I had been right all along. Moreover, out of that experience, I found the strength to say, "No more." It did nothing to ease the difficulty of being sick for no "good reason," but it did affirm my belief in my own understanding of what was going on. I regained my certainty, which had been battered and diminished in the preceding years, that my perceptions of my own experience were, if not completely accurate, clearer than anyone else's. It also reinforced for me the notion (this is much clearer in retrospect) that my sense of integrity was in my own hands and I had to maintain it even if, in the end, I was the only one who believed in it. This episode, while bizarre in the extreme, had much value for me.

There were many times when I doubted myself. As I had gained a reputation for walking into walls, so did I become known for inexplicable bouts of weakness. People tended to joke about that and especially about my clumsiness. I was known as a klutz. My reluctance to talk to anyone--much less doctors--about physical problems increased. I began to dread (and expect) that phrase, "It's all in your head."

The very simple fact that I was not trusted and others were to say what was or was not going on with me was enormously important. That fact, combined with that phrase always lurking I in the background, evoked an uncertainty in me that was profound. My sense of certainty and conviction in my own integrity was forever being tested against the way I knew others saw me. And could I really ignore the possibility that I was simply neurotic? This had happened to me twice; there was a significant cumulative impact both on me and on those who knew me.

There is nothing more important to me than trust and cceptance. Without them any relationship is fatally flawed. And during those years in most of my relationships, those essential qualities were in question. I've never thought that trust or acceptance is divisible. If trust is lacking on one issue, its existence on another is, for me, doubtful.

Once again, I slowly recovered and my strength returned. I went back to work as a paralegal, and Nick and I married and moved to Washington. A few years later we divorced; we remained extremely close and the best of friends to each other. I mention that divorce only because I think it important to say that my disease had nothing to do with it. Anecdotal evidence abounds about the high incidence of divorce associated with chronic disease. If anything, my disease strengthened our relationship.

For the next few years, I was basically fine. I tired easily and seemed to have a harder time than was quite normal with ordinary things like colds and flu. My recovery from injuries received in an automobile accident was prolonged, but by that time I was beginning to accept that that was the way I was. I could no longer tolerate heat at all, which, living in Washington, is not very convenient. My reputation for weakness and general unreliability increased.

In the year before I was finally diagnosed as having multiple sclerosis, I had been getting progressively weaker, having more and more difficulty walking, and over time experiencing many sensory symptoms--pins and needles, numbness, tingling, areas of solidity. "Areas of solidity" probably conveys little; it is difficult to describe but involves a small area, usually in an arm or leg, that feels solid, unchanging. During this time, I also received a new nickname from the people in my office, "Limpy," a name used with affection.

My difficulty walking became so extreme that I gave in and went to a doctor, a new one. I did not, because I simply could not bring myself to, tell him any of my history. And yet even without that, there was a very quick judgment made that it was "all in your head." He said, "Well, there isn't anything wrong with you. If you insist, there is a faint possibility you have arthritis. But there's nothing to be done for you." My heart sank. I had a vision of history repeating itself and I simply could not face it. And yet I was having more and more difficulty doing what needed to be done on a daily basis.

Being once again faced with being told I was merely depressed was extremely distressing and frustrating. I knew there was something wrong with my body, that I was not depressed. As time went by and I received no confirmation of this, I found the situation more and more depressing and the label of depression thus once again received some validation. I began to feel very hopeless.

At that time I was living with a friend whose notion of sharing was an absolute 50-50 division. I like that theory but firmly believe that in practice the percentages both do and must shift from time to time. We took turns getting the Sunday paper, a fairly short walk. One Sunday when it was my turn, there was two to three feet of unplowed snow on the ground. I said I couldn't get the paper that day as it was so difficult for me to walk. Well, in the end and because the Sunday paper is one of those things I find essential, I did go for that walk. It took me forever, and coming back I fell and didn't think I could get up. I remember lying in the snow and crying out of frustration and a sense of helplessness. When I finally struggled back, there was not only no sympathy (which I can live without) but it was clear that I was thought to be manipulative and a complainer, attempting to use my "weakness" as a way to get out of things that I didn't want to do.

I found then, and I still do, both of those judgments very hard to bear. I have never been a complainer and I go out of my way not to be manipulative. In fact, I think I probably go to extremes in an attempt to be honest. Yet during those years when there was no accepted and legitimate reason for my weakness, I was continually being seen as both a complainer and as manipulative. I found the knowledge that others so perceived me to be almost beyond bearing.

I remember once being asked by a close family member to baby-sit so he and the child's mother could go out together. I said I was sorry but I couldn't. I was feeling terribly weak and shaky; the thought of taking care of a four-year-old was overwhelming at that moment. The response was, "Oh, come on. There's nothing wrong with you. You just don't want to do it." I have never forgotten how I felt at that moment. Despair is the word that comes closest to describing my feelings. In the end, I did baby-sit; I was shamed into doing it, and, in retrospect, I am ashamed that I had not at that moment the courage (or more likely, the strength) to insist on the reality of my weakness. Instead, I gave in to another's interpretation of my condition.

One aspect of this complex was that any lack of participation on my part was seen as a social statement or a social strategy, as reflecting a desire not to participate. There was no acknowledgment or awareness that my lack of participation reflected purely and simply a physical limitation. I was continually set against others' definition of what I should do and be; what I was, because it lacked legitimacy, was not considered.

All those years I was struggling with something that others could not see at all and that I saw only dimly. Others, seeing the struggle, concluded that I was wrestling with a phantom. Hence the label of neurosis. My certainty that there was a physical reality at issue ebbed and flowed. I never entirely lost it but I came quite close. I was left with the sense that my integrity, even my self, depended on believing in my own perceptions and, at the least, not defining myself as I was defined by others. Of course, that is true for us all.

Finding myself again in the position I had been in twice before and having no real reason to believe that the outcome would be any different, I buried my head in the sand and hoped it would all go away. (I did buy a book on arthritis but it seemed to have no relation to what was happening to me.) As had happened before, however, it became more and more difficult for me to function. I became ever more convinced that there was something seriously wrong with me.

Eventually, a friend recommended a new doctor and I pulled together what was left of my courage and saw him. He took one look at me and said that I clearly did not have arthritis. He listened carefully and this time I did relate my history. He won my confidence and my undying devotion by quickly saying that I clearly was not normal and there was something wrong. He referred me to a neurologist, who fairly quickly diagnosed multiple sclerosis.

After all those years there was an answer. The importance of competent medical care is clear. Doctors who listen carefully are rare. But I don't think necessarily that my doctors of earlier years were incompetent. My experience was not unique. At the best of times, multiple sclerosis is a difficult disease to diagnose with accuracy. It is easier and more certain now than it was fifteen years ago. I think what happened to me is much less likely to happen now. There is still no one definitive diagnostic test, but the advent of CT scanners, magnetic resonance imaging, and sophisticated evoked potential testing has certainly made diagnosis easier. Notwithstanding modern technology, however, many of the symptoms associated with multiple sclerosis, especially such inchoate things as fatigue and weakness, can be indicative of many diseases including depression. A good doctor is essential.

Since that time, five years ago, I have had several very difficult periods which my neurologist refers to as reintensifications. All of the symptoms I have ever had return in full force, but there is apparently no new disease activity. I have not had an acute exacerbation. At my best, I am almost "normal," although even then, my left leg is never entirely reliable. What I have learned is how very little it takes to upset the status quo. If I have a cold, or a fever, get overtired (which happens all too easily these days), or experience any kind of stress, my symptoms intensify. Summer in Washington is always a very bad time for me. Heat and humidity invariably result in a reappearance and worsening of symptoms. For example, under extreme stress--heat or fatigue--my speech difficulty recurs and my vision tends to blur.

I have, with time, learned ways of managing. Rest is usually the only way to get back to "normal," but because sick leave is a very limited commodity, rest can be difficult to get. I often find myself using weekends to recover from the week past and get ready for the one to come.

The question of legitimacy with a disease such as multiple sclerosis is never completely resolved. One's condition is not usually or necessarily reflected in one's appearance. And I found that receiving a diagnosis catapulted me from one world of perceptions and judgments to another--the world of being "sick." A different world now that my "sickness" was legitimate; nonetheless, another world and the central issue of maintaining my integrity remained.

The diagnosis of multiple sclerosis was for me a watershed--one of those events that radically transforms experience both past and future. It illuminated what had gone before and changed the terms of what was to follow. As an event, the diagnosis itself had limited meaning; it did not change my physical reality. Its importance lay in its power to transform the past, present, and future. The power of a name to alter reality is enormous.

The metaphorical power of the scene at the airport in Luxor comes alive for me through the prism of the diagnosis. Society, both before and after I received a diagnosis, shaped my experience. I was subject to other people's interpretation and judgment of my experience. People do tend to interpret reality through their own experience and view of the world and leave little room for others' worlds and other experiences of reality. For me, the primary goal was always to maintain my integrity within that interpretation. One way to do that, of course, and important in itself, is to step out of others' worlds. There is always an empty seat, as in Luxor, where one can sit and enjoy the scene.