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.
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.
Alida did not choose to be ill; I did not think that my career would evolve as it did. So be it. The nature of both our experiences is that our paths did cross and that we did develop and do now share a relationship that is unique in its intimacy and evolving over time. It is also a relationship that requires us both to maintain independent and separate ties to our other worlds, in order that the more important parts of our identities not be consumed by the chance events that led us to share these vital parts of our lives.
My career began. Alida fell ill. From these separate beginnings our mutual story evolves.
Suspicion, Witchcraft and the Magic of Dialogue
By the time I was about twelve years old, I had become a gambling girl. I knew how to work my personal odds. My body was betraying me, and nobody could figure out why. In defense, I thought it best to turn it into a secret betting game. On any given morning I would make a wager with myself: Would my legs work when I got out of bed or not? Would I run a high fever at night? Would I suddenly have swollen and hot hands or feet? Would intense pain shoot through me without warning? Would I look in the mirror and see a face disfigured, not by the ubiquitous acne of adolescence, but by some weird looking rash under my eyes? It was a game I would play with myself late at night, when I couldn’t sleep for fear of what was coming next.
As I got older, I continued my addiction, but my wagers were now placed on the doctors.
Physicians came in and out of my life faster than I could count them. On a night before a new doctor’s appointment I would make a series of bets on him. (In those days, the doctors were always men.) Would this one be kind? Would he be gruff and talk to my parents and not to me? Would he think it was “all in my head”? Often, with my “luck,” I would appear at the appointment with a new specialist on a day when there were no symptoms available for his perusal, therefore making a diagnosis more than challenging.
I remember nights when I “prayed” for an attack to come on by morning, so that I would be taken seriously. In those pre-feminist days of the early 1960s, adolescent girls’ conditions were easily slotted into any number of loosely defined categories of “hysteria.” Then there were weeks, or even months, when I was completely free of symptoms. My normal life would resume, which included athletics, especially running and basketball, and dance classes. During these times I would wonder if maybe I had been hallucinating—if it were not for the fevers, the swelling, the pain, the strange skin problems. The odds I feared most of all were the testing odds—what kinds of tests would the new doctor feel were required? How much would they hurt me or scare me?
By the time I had reached twenty-three, I had been in the hospital almost as many times as my age, and had probably undergone twice that many tests, of all varieties. I was jaded. I had abandoned my betting game. All bets were off because I had become a young woman who believed there wasn’t a single doctor on the planet who knew what he was doing.
Nothing amused me any longer. Self-preservation dictated that I replace fear with an unspoken rage. Frequently, I directed my feelings of angry frustration at the medical profession, and not at what was wrong with me. However, although I had been too strictly raised and far too polite and obedient to misbehave with doctors, no doubt there are one or two physicians out there who, if still alive, wish that they had never agreed to see me.
I was given gold shots. One traditional, but eccentric, older doctor, gave me a copper band to wear on my wrist, and of course, I swallowed pills that consisted of the full array of the latest anti-inflammatory medicines. A couple of them came complete with their own meta-diseases, including ulcers.
Most upsetting was that omnipresent fallback strategy for control—the dreaded use of steroids.
Nothing that I took or was subjected to did anything to stop the episodes of illness.
Worse than that, none of the doctors, or sometimes teams of doctors, could figure out what it was they were trying to banish, other than the ghastly symptoms. As before, whatever it was would disappear, without leaving even a ghost of its presence. By this juncture in my life, I met every doctor, and each new recurrence, with complete suspicion.
Approaching thirty, I moved to Manhattan. I had decided to diagnose my own situation. I referred to it in my personal vernacular as The Rot. It was at a stage where it rarely disappeared, but instead took on wild and surprising new disguises.
This was the woman, with a wounded little girl very much present, albeit hiding inside, who, one late spring day, presented herself to Dr. Michael Lockshin. I surely wasn’t betting on anything or anybody any longer. I was holding the winning “trifecta” ticket of chronic illness: I was desperately afraid, relentlessly stubborn, and in profound denial. I thought all that my life required was to get settled with a new doctor in Manhattan, the city I had decided to call home.
Mostly, I was hoping against hope that the referral from my previous doctor would turn out to be a physician I could tolerate, at least marginally.
I have no idea what Michael saw when he first met me, or how much he remembers about our meeting. For me, the memory of that day is as clear as if it had happened yesterday. I even remember the dress I was wearing. In those days in Manhattan women breaking into new professional roles either wore the power-suit or the silk shirtwaist dress. I favored the shirtwaist dress. I chose to wear my best work dress. It was a black and white polka-dot silk dress; the top of the bodice was all white. I had on ivory tights and black flats with a bow on them. It was its own sort of uniform at that time.
There is no question that I had applied my make-up carefully; make-up has always been my defensive armor. And, of course, my hair would have been perfectly done. I am able to recall such details because I learned years before how important it was to make an excellent first impression on the doctor. It was essential to be absolutely and perfectly pulled together. Otherwise, there was always a chance he might decide you were crazy.
Michael D. Lockshin, M.D., came out to the waiting room to greet me, and immediately that was a telling new experience for me. I had always been accustomed to having a nurse, a receptionist, or an aide escort me back to see the doctor. Instead, this young man, who could have been an older brother, clearly not a father figure, came out to the waiting room. He spoke my name and then he shook my hand. He took me into his office first, not into the examining room. He asked me lots of questions, which was the usual routine. I quickly noticed, however, that not only did he seem to be listening to me; he also looked at me when I responded to his inquiries.
I lied about how I was feeling, and did so with my usual confidence, always fearing a sudden decision to hospitalize me for further exploration. However, this time when I lied, I had the sneaking suspicion my carefully well rehearsed, and often repeated performance, might not be all that persuasive to this doctor. At some point, he stopped asking medical questions, and asked me what I did. In other words, from the first moments of our relationship, he asked me about the person I was within and not the disease. I told him I was a researcher, which interested him considerably.
We diverted our conversation for a few moments to discuss my own work. I told him I had moved to New York to take a job at a social science research think-tank. I did not tell him that I had recently separated from my husband. Nor, did I tell him then that I felt I had to get away from my previous home in Berkeley, California because the pain of losing my marriage was far worse than being ill so often. I most certainly did not tell him then that I believed my husband had probably stopped loving me because of the disease.
I don’t remember if he asked me if I had ever been married, though it must be that he did, and I have blocked the question from my memory. We had, by then, reached a point where I felt certain he might start to probe more intensely into my true feelings. I didn’t know how I was going to waltz around my recent severe fever spikes at night. I had to keep him at bay––until I was sure of whether or not I was in a safe zone.
But, just then, my eyes fell upon a framed article on his desk.
It was titled: Witchcraft and lupus erythematosus, by Richard Kirkpatrick, M.D.
Why was this article framed, why was it in his office, and what could it possibly mean? I scanned it as quickly as possible with one eye, while I kept the other on him. The article detailed the history of a young woman with lupus symptoms who was twenty-eight and suffering terribly—her prognosis was far from hopeful. She declined further treatment and returned to her birthplace—a remote village in the Philippines. There she was treated by the “witch doctor” of her native village and returned to normal health. I could not imagine what I would hear, but I knew I had to ask the question, “Why do you have this article on your desk?” I might have had an edge to my voice, my defenses and my defiance, barely, if at all, veiled.
He answered in declarative sentences. The importance of what he said has never left me: “I have it there to remind myself to be humble. This is a field where there aren’t always obvious answers or solutions.” However, it was the last thing he said to me which clinched it, then, and indeed, forever.
He said the article reminded him, more than anything else, that patients often know a great deal about their own form of autoimmune illness and that doctors should listen carefully to their patients. I thought his professional field was my life’s field and perhaps we might be in something together. My body and I were at war, and had been for a long time. Was I really hearing that this doctor was on the same side of the barricade, alongside me?
At that moment, most of my barriers dropped, and I asked him a simple question: “Will you please be my doctor?” I had never uttered those words in my life. Frankly, I remember feeling my heart pounding for fear that the answer would be he couldn’t, or wouldn’t, for whatever reason.
Thank God, I have not had to say those words to anyone again. I don’t remember his exact words but he made me understand that it would be his pleasure to be my doctor. I did not seem to represent a grim burden or obligation. I also sensed, correctly, he did not feel the main reason to take me on was to add to the ever expanding mountain range of tests results on the continuing expeditions to a diagnosis.
My memory of that first meeting was confirmed when I went back to a journal entry, and found these few telling words: “I have never met a physician who thought that treating me or being in the presence of “my rot” would be a pleasure, but today I met MDL, and he said, it would be a pleasure to be my doctor. He did not say that finding the exact name for what it is matters as much as getting me to a better place than I have been. He saw me as Alida, not as Disease. I can’t believe this has happened to me after all these years.”
Neither of us understood it at the time, but when he responded as he did about the article (which is still in his office), a true dialogue had begun. I ended our first meeting by confessing that I had been spiking high fevers at night for many months. I still don’t know if he knew I had been lying in the initial moments of our meeting. I do know when I left his office I was beginning to think there might be a thing called a partnership between a doctor and a patient. And, maybe my careful personal recordings of the journey of my own disease made me, if not a medical doctor, at least somewhat of a lay expert about one patient—myself. I even dared to think, in my fantasy, it might be possible to be taken seriously not only for the professional work I did, but also for my observations about my own life lived with illness.
Through the many years since our initial meeting, I have come to take a far more compassionate view of the doctors who treated me before Michael Lockshin. With only one exception, they were all decent and good men, probably well trained, to the extent of the knowledge then available. They might well have been as frightened and confused by my disease as I was, but they could not let me see that. Perhaps it would have been more beneficial if they had been able to do so.
However, the core quality missing in all of those prior encounters was the one that would become the key to my later survival, both emotionally and physically. More than anything else what those earlier doctor-patient relationships lacked was what Daniel Yankelovich, the distinguished researcher and pollster, encapsulated in the title of his book, The Magic of Dialogue.
I would be a lying fool if I tried to convince myself, or you readers, that being ill from pre-adolescence until middle age is magical. I imagine treating legions of us with similar, and far worse conditions than mine, has been far from magical for Michael either. In the end, however, there is something that can happen when a patient and a doctor find they can move toward each other, if not as complete equals, then at least, as seekers, and not as judges. With this meeting of minds and hearts, something extraordinary occurs. It just might be a peculiar kind of magic.
Copyright (c) 2009 by Alida Brill and Michael D. Lockshin. All Rights Reserved.