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Dancing at the River's Edge

A Patient and Her Doctor Negotiate Life with Chronic Illness

Schaffner Press

Measures of Time

It's easy to think about how to measure time — until you actually think about it. What scale should one use when measuring a human life? In the Western world our scales are linear and decimal. We speak about orders of magnitude, multiples of ten — tenths and ones and tens and hundreds and thousands. But a concept of 10 or 100 or 1000 or 10,000 days fits to no human scale and brings no universally recognizable image to mind. We do have concepts, like decades or generations, that describe the non-decimal pace of human life, but, lacking a biology-based scale of time, we tend not to think in these terms.

The ancient Mayans perceived time as a series of recurring cycles of periods within the human experience. To them a kin (pronounced k-e-e-n) was a day, uinal (pronounced we-e-n-al) twenty days, tun (pronounced too-n) approximately one year, and katun (pronounced ka-t-oo-n), about twenty years. The world is renewed in a baktun (pronounced bok-t-oo-n) lasting four hundred years. On the scale of a katun people marry, achieve, see children grow, watch parents die, do or do not become disabled. The katun is the measure of time that describes the intersections of the otherwise separate worlds in which Alida and I live.

Biology and medicine have one scale for instant time, a nanosecond, a second, a minute or two — a fainting episode, a heart rhythm disturbance, a stroke, a convulsion, a sudden fall. One moment you are well, the next you are ill, never the other way around. This scale goes only in one direction: healing does not occur so fast.

Then there is the kind of time you measure with clocks, minutes and hours. This scale is bi-directional, pain or fever comes or goes, you come to the decision that you are or are not ill, that you will or will not call the doctor; the doctor decides that it is or is not necessary to act. A third scale, calendar time, measures time in months, seasons, and years: this new medicine is or is not going to work, you will or will not take that future trip, you will or will not attempt or achieve that future goal. Beyond that are the still longer periods that chroniclers know.

Time scales, for the most part, for most people, are irrelevant in day-to-day life. People interweave their different scales effortlessly, unconsciously, instinctively, rarely having to articulate and plan accordingly. The telephone rings, you answer — instant time. The business meeting takes place next week. Your child will graduate in three years. Determining such time scales is automatic. For most people it is almost unnatural actually to think about the many scales of time in which we operate out our lives.

But patients, unbelieving at first, grudgingly accepting later on, do begin to conceptualize greater, more abstract notions of time: instant, clock, and calendar, kin, uinal, tun and katun. If patients do not develop this construct, their doctors do it for them. This symptom, this pain, this fever is lethal! We deal with it now, in instant time! This other symptom, let's give it a few days, it probably is going to go away anyway, or let's try this simple thing to see if it works ("Take two aspirin and call me in the morning"), clock time. And the third thing, well, you can take that trip in September if we do this, but at such-and-such a cost in side effects or risk, or, if you stay here I can do something else, less cost and less risk — calendar time. Let's discuss it to see what is best for you. Decisions have to be made.

Decisions for the katun are hard, especially for the young. Plan A has a high success rate, you will soon be well, but the cost of that choice is that you will become infertile. With Plan B you won't have to take a leave of absence (or quit skiing, or not gain weight), but in twenty years you will be physically worse off than if you had chosen Plan A. Opting for relief on a clock or calendar scale carries with it a delayed cost that may not be seen until the next katun. Time scales must be articulated when choices are made.

Most books about being ill focus on short-term events; instead, this book speaks of a lifetime. What we have attempted to do is to look at how chronic illness transcends and transforms a person's life, from childhood, and early diagnosis, until the katun is unfurled completely and one's allotted time has elapsed. The lives of people like Alida are at times constrained and interrupted but are nonetheless fully lived.

The dialogue between doctor and patient is often asymmetric and is surely bizarre. It still seems surreal to me to discuss a twenty-year-old's pain today while, considering her options, I project in my mind the mother she will become a decade hence, the future grandmother in a katun, a grandmother whom, due to the disparity between her age and mine, I will never know. Beyond that, when the twenty-year-old is eighty, well, neither she nor I possess the clairvoyant powers that could inform such a guess.

And here is another absurdity: while my conversation with the patient transcends time, my frame of reference is within the instant. As I could not have predicted in medical school the emergence of the tools I use today, neither could I have known how badly flawed doctors' understanding of disease was in that archaic time. I cannot even begin to imagine what the doctors of the next katun will think about my advice for today, nor can I anticipate the tools the doctors of the next generation will use. So my patient and I stand frozen in this minute. I can only use the experience of the past to sketch out her medical future, all the while knowing that her future must remain unknowable to me.

MDL

Two Journeys Begin

Something is Wrong with Me

There has been something wrong with me for most of my life. By that, I mean my health has been unstable for as long as I could comprehend the words, "unwell," "sickness," or "illness." I have a complex form of an autoimmune disease that decades after its early first warning signs appeared, still defies an absolutely clean and clear diagnosis. I no longer spend time thinking, or believing, that either a definitive diagnosis, or a cure, is likely to appear.

This is not the life I would have chosen for myself, but it is the life I have lived. Chronic disease is as much a part of me as my name. Yet, I fight against the notion that I am simply a walking, talking and breathing disease and not an individual independent of this condition. I push against the limitations and complications caused by its angry, inconvenient outbursts, and, even after all these years, I struggle against the reality that this illness is a primary component in my life. However, deep inside me, where self-deception is intolerable, I know it is an essential presence in my life, and will remain so.

I can't medicate, meditate, exercise, diet, or deny myself out of my medical status: I am a person with chronic illness. I sometimes choose to try any number of regimes I hope might alleviate some of the symptoms. Occurrences and episodes are unpredictable and vary in severity. One thing remains forever a constant — I am unable to wake up one morning and choose not to have chronic illness. There are no mental powers or psychological tricks available that will eliminate this fundamental truth.

However, I can and do make many other choices in my life. One choice I made years ago was more of a vow. I promised myself I would never write about the illness or my experiences as a patient. It was something I had no interest in doing. Since I am a writer, friends, colleagues, and editors asked me, "Why not?" Many of them offered suggestions as to how I might write a memoir or self-help book about the manner in which I have handled my situation and navigated my life's course. It was never a discussion that got past their first sentences. "No. I do not want to write about it, and I try not to talk about it, unless it proves necessary." My position on the subject was so adamant, and so widely known, that finally conversation about it stopped, with the exception of the occasional side remark, such as, "Well, it's really a shame that you are never going to write about it, because what you could say would be so ..."

So, this is the book I was never going to write. Writing about being sick was an option that as a patient and as a writer, I would vehemently decline, out of concern for an individual's right of privacy. In a previous book, I wrote only two lines about being hospitalized, which I thought I had placed inconspicuously enough in a chapter dealing with issues of medical privacy. I came to regret those sentences almost immediately after the book was published. What has now changed my mind? Interestingly, it has less to do with the illness and its impact on my life. It is instead the result of a singularly unusual relationship in my life that I have had the great fortune to maintain for more than twenty-five years. It is a true friendship, but one in unique form — comprised of "doctor/patient"–"patient/doctor" exchanges over this entire period.

This reality forced me to face that there was more than one good reason to tell the story about a lifetime of being chronically ill. I have chosen to do this not because there is anything all that fascinating about me, or the form of my illness. I decided to write a book with this physician because in the midst of what could not be changed about my life, we were able to shake up some closely held stereotypes. Namely that a doctor and his patient chose to do something quite remarkable: we engaged in real and expansive conversations regarding the direction the disease was headed, treatment options, my life, and the larger and more significant issue of chronic disease itself — in terms both general and specific — over the course of almost three decades. During the long and capricious years of my illness, we have learned as much about what is wrong with me, as we have about the importance of what has transpired between us.

Michael will say that he did not choose to become a doctor of the chronically ill, that the career chose him. As someone who is chronically ill, one of the few choices I had been allowed was to select doctors, an option I exercised from a fairly young age. From my first meeting with Michael, my choosing to work with this doctor was the one option I understood might well represent a lucky throw of the dice. Over the years we have wrestled with many questions. We have agreed and disagreed; we have negotiated; we have had rocky moments in our passage together.

We have never given up on each other, or on the process. He has never given up on me. I have given into his wisdom, often, but not always, with reluctance. More importantly, he has allowed me the freedom to take some risks and chances that have enabled me to live a life, rather than merely to exist in a state of disease management. We have confronted issues of honesty and trust, control and power, denial and stubbornness, and a myriad of other things. Along the way, we also became close friends. I think it safe to say that during the long course of our relationship, we have both become better at helping each other become the best of what we are — patient and doctor engaged in a common struggle. I began by saying I would not have chosen this life.

Trust me: I will end my life thinking this. I can't, however, pretend that my condition has not shaped me or given me a set of perspectives different from ones I would have had, had I not been chronically ill. I insist, sometimes in anger, sometimes defensively, sometimes in cold fear, that I am not "it." Yet, "it" has also been a key ingredient in the mixture that has made me the kind of person I have become. "It" has influenced how I see the world and its inhabitants, how I enter the conversation as a person, how I interact with others, both those who are suffering, and those who have never had serious illness intrude upon them. In the final analysis, I confess, "it" hasn't been all bad.

AB

I Did Not Choose

I did not choose a career in chronic disease; this career chose me.

At about the time that Alida, an adolescent in California, first fell ill, I was an unformed and uninformed medical student in Massachusetts, learning about the very same symptoms she was enduring. At the same time that the youngster in a hospital bed on the West Coast was confronting the frightening reality of what was happening to her, I on the East Coast encountered my first patient with the same illness that Alida had.

I was disconcerted to witness confusion, if not fright, among my professors, in response to the symptoms of the sick young woman before their eyes. It was hard to believe. This young woman, at what should have been the happiest moment of her life, a few months pregnant with her first child, a few days ago well, was brought before us with a fever of 104 degrees, skin raw with the kind of rash that would frighten children at Halloween, hair rapidly falling out and almost gone, aching from head to toe, kidney function and blood cells dangerously abnormal, both her and her baby's lives suddenly threatened for reasons that she, and it seemed, we as well, could not comprehend.

Fate is too random for Alida's and my paths inevitably to have crossed — at that moment in time it was unlikely that we ever would meet — but, I fantasize sometimes that perhaps something of that California child channeled itself across the continent into the brain of an unfocused medical student in Boston and said, "This is the doctor you should become."

Back then, chronic disease had seemed to me rather dull. An exciting career, I thought, would entail diagnosing and curing a fast, decisive disease. A heart attack occurs. You die or not. Your appendix swells. A surgeon cuts it out. You are well. Cardiology, surgery — these are specialties that move fast, that conclude with clear results. If medical efforts fail, and if your patient dies, a pathologist will point to the dead part of the heart or the organ that burst inside and exclaim with certitude: "This is why your patient died!"

When I was a medical student, in the mid-twentieth century, medicine had new tools, deep knowledge of physiology, and certainty. Science was ascendant. Satellites were flying; we could head for the moon. An exciting career, I thought, would take root in the self-confident, definitive fields. Ask a question, any question at all, and, sure as the daffodils of spring, the answer would rise before your eyes.

Or not; illness did not always evolve so quickly and the signs could not be so easily read. When I saw that young woman during that first year of medical school, at about the time Alida first fell ill, I was surprised that her physicians did not manifest the confidence that, I had assumed, one could put on as easily as a white lab coat. After three or four weeks her organs failed and she was gone. In a mortality conference that week, and again in a class discussion a few weeks later, I asked what organ could have been fixed, what vital process had failed, in short, why had she died? My professors shrugged their shoulders and answered: "We don't know. They die."

Or not. This, my first experienced death, prompted a serious sortie into the medical school library. I learned that many patients with her illness did survive and that treatments, sometimes successful, did exist. I found great mystery (unexpected — it was such a confident age), so little was known about the abnormal processes of her disease; I found intimations of a new science that might engage the problem.

Thus my career direction changed, midwifed by mystery, unsolved questions, new science, and curiosity, and perhaps by a little channeling from afar. I imagined that I could contribute to the science and that I would be able to intervene. My thoughts took place in the first person singular, active voice, in accelerated time. I act. Patient responds. The disease process may be slow, but knowledge would energize the clock. Intervention would be fast. Decisive.

I did not then understand — it took years to articulate — this: neither science nor interventions define the career that chose me. I could not learn this in the library and certainly would never learn this in the laboratory. Alida and her predecessors and her successors taught me, beat it into my head, again and again, that the core of a career in chronic illness lies in person-to-person interaction, emotion, adjustment, negotiation, choices, and evolution over time. Science and interventions are useful tools, but just tools. Like the separate DNA strands that wrap together at critical times, patients and doctors live parallel and occasionally intertwined lives. Neither fast nor decisive, we negotiate immediate, one, and forty-year goals, kins and uinals and tuns and katuns. We prioritize and choose.

My reward comes when a patient assumes control of her once disrupted life, my pain from knowledge that the optimistic youngster before me will not have the life she plans, and from seeing my twenty-first century tools — orders of magnitude better than those I thought sufficient long ago — fail. It is, of course, ego-affirming when on occasion I sort out seemingly unconnected signals to define a pattern of disease, understand how biological injury occurs, and target a specific treatment to repair a broken cellular cog. But it is much more joyful to know that, for this particular person, at this particular time, the disease is in retreat, and to be able to celebrate with this patient when normality returns.

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Excerpted from Dancing at the River's Edge by Alida Brill, Michael D. Lockshin. Copyright © 2009 Alida Brill and Michael D. Lockshin. Excerpted by permission of Schaffner Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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