Uncertainty and Process

Our bodies, why do we forbear?
They are ours, Though they are not we, We are
The intelligences, they the sphere.
We owe them thanks, because they thus,
Did us, to us, at first convey.

JOHN DONNE

Before I could look at my experience within that cultural framework, it very slowly became clear to me that there were two essential facets of the experience of chronic illness that had to be fully explored. In that exploration, the sense of forward progress and of momentum ceases. These issues require both time out, as it were, and a realization that they will continue to be issues and will, in the end, fail to be resolved.

The first issue is absolutely central and affects my responses to and thinking about all the others. It is difficult to formulate; nevertheless, I will try because I begin to think that it is crucial to the entire process of acceptance and adjustment. Moreover, I think that on the level of daily life it is enormously important. It was a long time before I was fully aware of this issue and I am still not sure what to call it--a sense of generalized vulnerability perhaps, an unsureness or uncertainty.

One reason why it took so long to become aware of this was because the diagnosis was such a powerful event for me. It had, in retrospect, wiped out the doubt and uncertainty I had had during those fourteen years before I knew I had MS. My perceptions had been affirmed and my uncertainty erased by a fact. I perceived the diagnosis, that moment of clarity, as not only reaching back to transform the past but as carrying me through the future. It gave me, and my experience, a solid underpinning and affirmation. It took time before I let go of that solid fact enough to see that there was a completely new kind of uncertainty that was affecting me.

This new uncertainty arises from the site of this disease. I stumble, limp, drop things, but there is nothing wrong with my arms or legs as such. The disease process and the resulting damage is in my brain. This fact raises questions for me that, while imperative, are also unanswerable (at least at present). What is my self? What are its boundaries and where is it to be found? What is it that makes me who I am and what of that is essential? Will I know if I cease to be who I am? It seems unlikely because I would no longer be there to know it. How does my self know itself?

All of this posits and assumes a dichotomy between my body and my mind (or, is it more properly, self?)--a separation. The two are not the same. I do not feel that my body is congruent with my self. And beyond that, while on one level I seem to be saying that self and brain do have some congruence, on another level, that is also unclear. Certainly, in some ways I feel my self to be at stake vis-à-vis my body. In others, I equally clearly do not.

This distinction troubles me because of its inherent (or are they?) metaphysical implications to which I do not subscribe. But certainly on an operational level, I do see my body as something apart from and indeed, at times, as alien to me. I see my self as having an independent existence. But I do see my self and my brain as being inextricably entwined.

This is all very problematic and culture-bound. But I am a product of my culture and this is my bias. It is intriguing to speculate about (and of course, impossible to know) exactly how one might feel if one did not have this dualistic view. If I felt no distinction, no separation, between body and self, would I feel more or less threatened by bodily malfunctions? Remembering how I felt on those days when, because of ACTH, I failed to recognize myself, I think if I had really felt that my body was me, I might have felt the loss of self. But this is idle speculation; I at least cannot enter fully into the imagination of a wholly other. I can only realize the ways in which my imaginative vision may be colored and distorted; the distortion can never be entirely removed.

I mentioned earlier the awe I felt looking at the CT scan showing the lesions in my brain. My damaged brain observing the damage in my brain. How can I trust that observation? Should I? What of my thoughts about the world, about the nature of reality, my perceptions and judgments of people and events--are they to be trusted? I wonder, writing this, whether there is coherence and sense to be found here.

An uncertainty at the very center of me. Where are "the neural foundations of the self" to be found?¹ Will I develop a lesion that will irrevocably change the essence of my self? An unscientific notion, perhaps, but still a thought that in the stillness of the night recurs. And even more sobering, if that were to happen, would I know or would I continue to trust the integrity of my self?

These questions pose an existential quandary that is very real for me. If my leg and my arm were in fact damaged, these thoughts would not arise, my self would not be at stake. (If I were an athlete, of course, it might well be.) It is precisely the fact that my self does seem in some measure to be at issue that, I think, both complicates enormously the process of thinking clearly about some issues--for example, the whole question of strength and weakness--and makes them even more important. Seeing the culture clearly and my experience set against that backdrop has some illuminating power in this context.

Of a slightly different order but clearly linked to this uncertainty is a physical wariness that is new to me. I often hesitate now to do things that I used to think little of, and yet I always wonder whether I overreact. I feel more vulnerable in a physical way but it is not primarily a physical issue. I find that I second-guess myself ever more frequently and on all levels. I spoke of some of this earlier. My wariness is clearly related to the unknown course of the disease. With time, I find it seems even more important that I achieve some clarity about the consequences of this uncertainty. The world of relationships and of motivation is murky enough and complex enough. I do not want the fact of this disease and its effect on me to add yet another layer of undifferentiated confusion. It seems crucial that I at least be aware of how my self and my behavior are affected by this sense of vulnerability and uncertainty. I am who I am but is my perception of that always trustworthy? Are my actions or responses always reasonable or, indeed, appropriate?

The effects of stress contribute to this generalized uncertainty. I mentioned that I am apt to become confused in extreme heat; I may not act or respond rationally, and during that time of confusion I may not know that I am confused. (I have learned that much; have I missed something else? Am I confused without knowing I am confused?) A damaged central nervous system, I am told, does not handle stress as well as it might; it overloads faster, it does not process stress efficiently or correctly. I know from experience that in situations of extreme stress (and not so extreme--what is extreme for me now is not what used to be) I do not function very well.

While I have learned quite a bit about what causes stress and how much is too much, my knowledge remains inexact and entirely too variable for any comfort or certainty. There are days when I can do almost anything; there are also days when, for no discernible reason, I am absolutely and suddenly exhausted. And it is, of course, this real and physical uncertainty that contributes to the greater uncertainty. The result is an inchoate but very definite and pervasive sense of uncertainty and vulnerability. There are, as always, different levels at which this uncertainty operates. At its most basic, for example, I always wonder, if I drive to a place two hours away, whether I will be able to get back. More generally, how trustworthy are my perceptions of and reactions to people and events? This should not be overstated; nevertheless, it is very real and does, I know, affect my approach and response to all of life.

Because this heightened sense of vulnerability does affect me in this fashion, when, I am thinking about an issue such as dependency I tend to wonder whether I am too sensitive to it or see it as larger than it is. What is important is that all of my experience and my perception of the conflicts raised by the fact of having MS is filtered through or informed by that sense of uncertainty. It is necessary to recognize this, although by its very nature and diffuseness, I am never quite sure of the degree to which or in quite what fashion this uncertainty operates. It is also clear that perhaps because of the nature of uncertainty, many of these thoughts have no clear ending point. The fact that there may be no intellectually satisfying resolution does not in itself make the process unnecessary or unfruitful. These quandaries, notwithstanding their essential elusiveness, have been and remain a central part of this entire experience for me.

Thinking about my life seen through this filter, I have wondered how it would have been different had I not known that I have MS. I have spoken of the uncertainty I felt before I knew I had multiple sclerosis--uncertainty both before and after the diagnosis. The old uncertainty arose from lack of knowledge. The new comes precisely from that knowledge I so ardently desired. There is irony there. I would always choose to have that knowledge, however. Without it, I would have had to continue to wrestle with a phantom. My close relationships would have continued to be flawed by that lack of trust I spoke of. And I wonder whether, with time, I might have become quite thoroughly depressed and neurotic and lost the ability to continue to insist on the essential rightness of my own perceptions.

As being in the Middle East illuminated for me the broad impact of culture on my experience, so did thinking about what happened to me the day I received my diagnosis prove illuminating vis-à-vis personal reality. It provided a glimpse of both the social reality of disease and the social construction of that reality. How did that knowledge, the reception of a diagnosis, change my life? Objectively, nothing changed; subjectively, everything changed. I did not change on the day I received the diagnosis. The social consequences for me were altered, which in turn altered the subjective quality of my experience. I entered a new social world, the world of disease. I think I saw that world more clearly and certainly faster because of all those years of not knowing and living with the consequences of that. But it was also because I did so clearly see the diagnosis as a central event, one that would provide resolution, that I more quickly saw its limitations. It eventually became clear to me that structurally some of the elements of my experience, before and after the diagnosis, were very similar. The reasons for and the nature of my uncertainty, for example, were very different; yet the uncertainty continues. And, as before, so after, I could only try to live my own life. The phantom was revealed as a very concrete reality. Now I wrestle with fact and with the social world and its construction of disease.

What is interesting to me in retrospect is exactly how dramatically my experience was altered by receiving a diagnosis, a label. I was radically transformed that day; it was not only that others' perceptions changed, my own perspective on my experience changed. And certainly others' perception of me did change. Behavior that was illegitimate when I was "well" was suddenly legitimate when I was "sick." There was power in that social reality--mediated and experienced through the culture and cultural values--to form and shape my individual experience. My history was in a sense altered, it retrospectively changed. But what really happened? Nothing happened. I was given (as were others) a label and a new filter through which to view my experience. Over the years I had been sick without being so labeled; my ability to function had been impaired without an accepted and legitimizing reason. Now, suddenly, there was a label, attached retroactively, which seemed retrospectively to alter relationships and history.

It seems useful to look at the conflicts I experience and attempt to resolve through that filter--the overlay, as it were, which so definitively changed everything. Nothing changed that day and everything changed. I was vindicated and affirmed. From being in an anomalous situation, suddenly I was categorized. It was not the knowledge in and of itself; the knowledge that there was a discrete reason for all that happened to me was comforting but it did not change my physical reality. My understanding, and that of others, of my condition changed. A diagnosis, a reason, altered perceptions and judgments; it irrevocably changed the environment within which I live. Of course, the physical consequences of the disease were much easier to bear in the framework of that knowledge. Before the diagnosis, I was always being told that any symptoms I experienced were a result of my own behavior or of neurosis; and an inevitable part of that was that if I was sick, it was my own fault. That was hard to bear and ultimately, hard to resist. Those fourteen years between what my neurologist now thinks was the onset of my MS and its diagnosis were a long time.

Receiving a diagnosis was, as I said, an act of affirmation. My perceptions and intuitions about what had happened to me had been, in fact, correct. More essentially, the prism changed. And that process, an abrupt change of lenses as it were, allowed a glimpse of the social construction of disease. From that day forward, my experience, which in some ways remained the same, was structured by a quite different set of cultural expectations and norms, and thus its quality as well as its shape was altered. But the clarity I expected to continue was in many ways an illusion.

The second essential facet of the experience of chronic illness became clear to me exactly as I began to recognize the illusive nature of that clarity. Clarity fades in and out precisely because of the nature of acceptance. Acceptance is commonly seen as an event and 1, at first, perceived the achieving of acceptance as a track on which A led inevitably to Z. Indeed, in the first few years after my diagnosis, there was a clear and fairly speedy progression from the shock I spoke of to an acceptance of the fact of the disease. But that rock-bottom acceptance is really only a prologue to living that acceptance. What I see as the crucial point about acceptance, and the most misunderstood, becomes the salient reality--that acceptance is a process and, in no sense, an event. What acceptance means in daily life is a constantly changing, evolving, and sometimes messy reality. The sense of progress ceases and one is left with the true nature of acceptance as I see it; its essence is process. There is no end, no point at which one can say, "Aha! I have accepted. On to the next task." What is involved in living acceptance is processual² and, indeed, repetitive. Continuing and maintaining acceptance requires an ongoing series of changes, refinements, even realizations. The remainder of this story is very reflective of my understanding that acceptance is a process. The experience and thus the telling of it is to a degree repetitive, even circular; it is much slower-paced, as was the living.

The uncertainty I speak of here is a good example of this. One can and does accept that one lives and will live in great and continuing uncertainty. The basic fact of the uncertainty is sooner or later accepted. The playing out of uncertainty, its realization and meaning in daily life, is continuous. I continue to become aware of the implications of that uncertainty for me, its impact on relationships, and on large and small decisions. The consequences of that uncertainty continue to unfold.

With the passage of time it becomes ever more clear to me that acceptance is not discrete and certainly neither a state nor a static condition. It is a task but not one that can be completed and marked as achieved. I stress this because I find people generally and, it sometimes seems to me, almost obstinately, misunderstand acceptance.

The common understanding of acceptance, perhaps arising out of a simplistic reading of Elisabeth Kubler-Ross's work on stages, is seriously flawed. Acceptance is commonly seen as the final event in a series of stages. Whether or not Kubler-Ross intended that is open to question, but the result is that acceptance is generally seen as a discrete event, an achievable task. This is quite wrong. One might perhaps more usefully perceive acceptance as that which makes the working out of acceptance, its living, possible. Words fail me here. Acceptance that one has a chronic disease is, indeed, essential but what that really means is a continuing realization and acknowledgment of its consequences.

I accept that I have MS; what having MS means for me on a daily basis, however, is a continually changing reality. In my closest relationships, for example, the fact that I have a chronic disease continues to have new effects and consequences. Without the bottom-line acceptance, I couldn't begin to accept--primarily because I would not see--the myriad ways in which my disease affects these relationships.

There is another aspect of acceptance that I think is open to great misunderstanding. Acceptance does not preclude moments of despair or moments of feeling totally at sea or of wanting to hide, nor does acceptance preclude anger. Such moments do not call acceptance into question. I think there is a prevailing notion that acceptance does away with conflict and anger.

My growing understanding that living with MS, or any chronic disease in this society, inevitably places one in a position of continuing conflict is an example of this. I do not feel that acceptance necessarily or even usually obviates those conflicts but rather that part of what acceptance involves is an acknowledgment of those conflicts and of the reality that they will continue, albeit realized and experienced in ever-changing ways. Understanding the roots of those conflicts is essential to acceptance but acceptance neither negates the conflicts nor robs them of their importance.

On a more personal level, acceptance does not mean that there will not be problems or that there will not be anger (on my part or the part of a lover or spouse); acceptance is rather what provides the possibility of integrating the fact of the disease into a life. Both the reality and the circumstances of my life continue to change, and that continuing reality requires continuing clarity as one recognizes and confronts the new effects and consequences of MS.

It has become increasingly clear to me that there is a very widespread reluctance to acknowledge even the possibility of negative feelings in a relationship in which one partner has a chronic disease. There seems to be a notion floating around that acknowledging anger or acknowledging that both partners will occasionally feel anger or resentment calls the entire relationship into question; that "true" acceptance would preclude any negative feelings. This is naive in the extreme. It is crucial to recognize that in a relationship where one person is continually physically needy there are almost bound to be times when both resent this, regardless of the underlying strength and soundness of the relationship.

In fact, I think the stronger and sounder the relationship, the more apt each person is to express negative feelings. It is only in a relationship based on complete honesty and acceptance that one can easily and openly express anger. Openly acknowledging and expressing these feelings is essential. We are none of us saints. Acceptance, on my part and on the part of my spouse or lover, is exactly what allows the expression of anger. Anger is not a bad thing. It is often the way we express feelings such as resentment or frustration. I tend to think it is more efficient of time and energy to identify what causes the anger before it reaches the anger stage; nevertheless, in practice, I think we often find ourselves angry and only then identify the reason.

Beyond that, it is crucial to understand that acceptance of the disease does not, will not, and I don't think in the end necessarily should preclude anger at some of its consequences. The consequences continue to unfold. They are not immediately apparent. I am reminded of a moment that I hold in my mind as illustrative of this dynamic, a first canoe ride with a friend. We were paddling along and a moment came when I realized I could no longer hold that paddle with my left arm, much less continue to paddle. I knew that I had to tell him that he would have to paddle on that side. Of course, given the nature of canoes, he would have soon realized this in any event. Telling him was exceedingly difficult for me; I felt anger, dismay, and resentment at the physical reality that I could no longer continue to paddle, at the fact that I had to deal with the situation at all, at the fact that obviously I would not be an ideal person with whom to undertake a long canoe trip. All kinds of thoughts and emotions flashed through my mind at that moment before I forced myself to speak to him. The conflicts I felt were present despite the fact that I felt completely accepted and that my weakness is clearly not an issue in this relationship. Of course, I did tell him, and he, having no idea of what I had been thinking, said sure, and we sailed on. The moment and the difficulty were all mine. I think my anger and dismay in that situation arose precisely out of my acceptance. Had I not accepted the fact of the disease, I would not have seen that moment as yet another unfolding of the meaning of acceptance. It was the acceptance that forced me to acknowledge that particular consequence and my anger (dismay) arose out of the knowledge that here was yet another circumstance that required adjustment--a perfect example of acceptance as process.

The dictionary meanings of "acceptance" include "accommodation or reconciliation of oneself to something" and "endurance." Both accommodation and endurance carry implications of process. I certainly get tired of this process, and part of my frustration in that moment arose precisely out of my continuing realization that the consequences and the unfolding of my acceptance were a never-to-be-ended process. I had never thought about canoes. I would have liked very much to be able to paddle for hours with ease and no thought. I think that a failure to accept that frustration as a natural response or a requirement to pretend that such moments do not sometimes give rise to anger and frustration is very self-defeating. This notion that acceptance precludes conflict or anger is clearly related to the emphasis on hope and optimism I spoke of earlier. I think there is a belief that both acceptance and hope should make the existence (not to mention the expression) of negative feelings impossible. This, of course, leads right back into denial and I do believe there is a large element of denial operating in common understandings of acceptance. It is important to recognize that experiencing anger and frustration is a way in which we do live acceptance; it is, perhaps, even essential.

My moment in the canoe is an example also of the repetitive and often circular process that acceptance both is and requires. Acceptance does not do away with the need to become aware of a new consequence of disease in a relationship, for example, and to come to terms with it and integrate it into the relationship. Of course, my canoe ride is a very concrete and limited example of something that is usually much more important, diffuse, and difficult. It is in such new situations that we recapitulate, consolidate, and live true acceptance. I knew at that moment that what was going through my mind was not new. It was in many ways a repetition of similar situations in the past. Each new unfolding is quicker because it holds within it past experience; nevertheless, it is unique.

The issue of uncertainty and the notion of acceptance as process are clearly related. More important, they are very similar kinds of issues, both in their centrality and in their open-endedness. Becoming aware of some of the implications of uncertainty and acceptance was necessary to begin to understand some of the more concrete consequences of chronic illness.

Just as my understanding of the social and cultural conflicts that chronic illness gives rise to did not obviate those conflicts, so understanding does not do away with conflict in daily life or in a relationship. Understanding is essential to acceptance but there is no closure. Acceptance of and adjustment to a life lived in the frame of chronic disease will never be completed. Forward momentum may cease; widening and deepening (or is it consolidation) never ends.