On the Move: A Life

by Oliver Sacks

  James Purdon Martin, an eminent neurologist in London who had decided to spend his retirement observing and working with the postencephalitic patients at the Highlands Hospital, had published a remarkable book on their balance and postural abnormalities in 1967. He made a special journey to New York in September of 1969 to see my patients; it could not have been easy for him, because he was in his seventies by then. He was fascinated by seeing the patients on L-dopa and said he had seen nothing like it since the acute days of the epidemic fifty years earlier. “You must write about all of this, in great detail,” he insisted.

  In 1970, I started to write about the postencephalitics in what for me has always been a favorite form, the letter to the editor. In one week, I sent four letters to the editor of The Lancet, and these were immediately accepted for publication. But my boss, the medical director at Beth Abraham, was not pleased. He said, “Why are you publishing these things in England? You’re here in America; you must write something for The Journal of the American Medical Association. Not these letters about individuals, but a statistical survey of all the patients and how they are doing.”

  In the summer of 1970, then, in a letter to JAMA, I reported my findings, describing the total effects of L-dopa in sixty patients whom I had maintained on it for a year. Nearly all of them, I noted, had done well at first, but almost all of them sooner or later had escaped from control, had entered complex, sometimes bizarre, and unpredictable states. These could not, I wrote, be seen as “side effects” but had to be regarded as integral parts of an evolving whole.

  JAMA published my letter, but while I had got plenty of positive responses from colleagues in reply to my letters in The Lancet, my letter in JAMA was greeted by a strange, rather frightening silence.

  The silence was broken a few months later, when the entire letters section in one October issue of JAMA was devoted to highly critical and sometimes angry responses from various colleagues. Basically, they said, “Sacks is off his head. We ourselves have seen dozens of patients, but we’ve never seen anything like this.” One of my colleagues in New York said that he had seen more than a hundred parkinsonian patients on L-dopa but had never seen any of the complex reactions I described. I wrote back to him saying, “Dear Dr. M., Fifteen of your patients are now under my care at Beth Abraham. Would you like to visit them and see how they are doing?” I did not get a reply.

  It seemed to me then that some of my colleagues were downplaying some of the negative effects of L-dopa. One letter said that even if what I described was real, I should not publish it, because it would “negatively impact the atmosphere of optimism necessary for a therapeutic reaction to L-dopa.”

  I thought it was improper of JAMA to publish these attacks without giving me an opportunity to respond to them in the same issue. What I would have made clear was the extreme sensitivity of postencephalitic patients, a sensitivity which caused them to react to L-dopa much sooner and more dramatically than patients with ordinary Parkinson’s disease. Thus I saw effects in my patients within days or weeks which my colleagues treating ordinary Parkinson’s disease would not see for years.

  But there were deeper issues, too. In my letter to JAMA, not only had I cast doubt on what had appeared at first to be the extremely simple matter of giving a drug and being in control of its effects, I had cast doubt on predictability itself. I had cast contingency as an essential, unavoidable phenomenon that emerged with the continuing administration of L-dopa.

  I knew that I had been given the rarest of opportunities; I knew that I had something important to say, but I saw no way of saying it, of being faithful to my experiences, without forfeiting medical “publishability” or acceptance among my colleagues. I felt this most keenly when a long paper I had written about the postencephalitics and their responses to L-dopa was rejected by Brain, the oldest and most respected journal of neurology.

  —

  In 1958, while I was a medical student, the great Soviet neuropsychologist A. R. Luria had come to London to give a talk about speech development in a pair of identical twins, and he combined powers of observation, theoretical depth, and human warmth in a way which I thought revelatory.

  In 1966, after arriving in New York, I read two of Luria’s books, Higher Cortical Functions in Man and Human Brain and Psychological Processes. The latter, which contained very full case histories of patients with frontal lobe damage, filled me with admiration.4

  In 1968, I read Luria’s Mind of a Mnemonist. I read the first thirty pages thinking it was a novel. But then I realized that it was in fact a case history—the deepest and most detailed case history I had ever read, a case history with the dramatic power, the feeling, and the structure of a novel.

  Luria had achieved international renown as the founder of neuropsychology. But he believed his richly human case histories were no less important than his great neuropsychological treatises. Luria’s endeavor—to combine the classical and the romantic, science and storytelling—became my own, and his “little book,” as he always called it (The Mind of a Mnemonist is only a hundred and sixty small pages), altered the focus and direction of my life, by serving as an exemplar not only for Awakenings but for everything else I was to write.

  In the summer of 1969, having worked for eighteen hours a day with the postencephalitics, I took off for London in a state of exhaustion and excitement. Inspired by Luria’s “little book,” I spent six weeks in my parents’ house, where I wrote the first nine case histories of Awakenings. When I offered them to my publishers at Faber & Faber, they said they were not interested.

  I also wrote a forty-thousand-word manuscript on postencephalitic tics and behaviors and, additionally, planned a treatise titled “Subcortical Functions in Man,” a complement to Luria’s Higher Cortical Functions in Man. These, too, were turned down by Faber.

  —

  When I first came to Beth Abraham in 1966, it housed, in addition to the eighty-odd postencephalitic patients, hundreds of patients with other neurological diseases—younger patients with motor neuron disease (ALS), syringomyelia, Charcot-Marie-Tooth disease, etc.; older patients with Parkinson’s disease, strokes, brain tumors, or senile dementia (in those days, the term “Alzheimer’s disease” was reserved for rare patients with a pre-senile dementia).

  The head of neurology at Einstein asked me to use this unique population of patients to introduce its medical students to neurology. I would have eight or nine medical students at a time—students who had a special interest in neurology and who could come on Friday afternoons for two months (there were also sessions on other days to accommodate Orthodox students who could not come on Fridays). The students would learn not only about neurological disorders but what it meant to be institutionalized and to live with a chronic disability. We would ascend, week by week, from disorders of the peripheral nervous system and spinal cord to the brain stem and cerebellar disorders and then to movement disorders and finally to disorders of perception, language, thought, and judgment.

  We always started with bedside teaching, gathering around a patient’s bed to elicit his history, ask him questions, and examine him. I would stand by the patient, not intruding for the most part, but making sure the patient was always treated with respect, courtesy, and full attention.

  The only patients I introduced the students to were ones I knew well and who had agreed to being questioned and examined by the students. Some of them were born teachers themselves. Goldie Kaplan, for one, had a rare congenital condition affecting the spinal cord, and she would say to students, “Don’t try to memorize ‘syringomyelia’ from your textbooks—think of me. Observe this large burn on my left arm, where I leaned against a radiator without feeling heat or pain. Remember the twisted way I sit in a chair, the difficulty I have with speech because the syrinx is starting to reach into my brain stem. I exemplify syringomyelia!” she would say. “Remember me!” All the students did, and some, writing to me many years later, would mention Goldie, saying they could still see her in their mi
nd’s eye.

  After three hours of seeing patients, we would break for tea served in my crowded little office, its walls covered by a palimpsest of papers I had pinned up: articles, notes and thoughts, poster-size diagrams. Then, weather permitting, we might go across the road to the New York Botanical Garden, where we would settle under a tree and talk about philosophy and life generally. We got to know one another well over the course of our nine Friday afternoons.

  At one point, the neurology department asked me to test and grade my students. I submitted the requisite form, giving all of them A’s. My chairman was indignant. “How can they all be A’s?” he asked. “Is this some kind of a joke?”

  I said, no, it wasn’t a joke, but that the more I got to know each student, the more he seemed to me distinctive. My A was not some attempt to affirm a spurious equality but rather an acknowledgment of the uniqueness of each student. I felt that a student could not be reduced to a number or a test, any more than a patient could. How could I judge students without seeing them in a variety of situations, how they stood on the ungradable qualities of empathy, concern, responsibility, judgment?

  Eventually, I was no longer asked to grade my students.

  Occasionally, I would have a single medical student for longer periods. One of them, Jonathan Kurtis, visited me recently and told me that now, more than forty years later, the only thing he remembered from his medical student days was that three-month period he spent with me. I would sometimes tell him to see a patient with, say, multiple sclerosis—to go to her room and spend a couple of hours with her. Then he had to give me the fullest possible report not only on her neurological problems and ways of living with them but on her personality, her interests, her family, her entire life history.5

  We would discuss the patient and the “condition” in more general terms, and then I would suggest further reading; Jonathan was struck by the fact that I would often recommend original (often nineteenth-century) accounts. No one else in medical school, Jonathan said, ever suggested that he read such accounts; they were dismissed, if mentioned at all, as “old stuff,” obsolete, irrelevant, of no use or interest to anyone but a historian.

  —

  Nursing aides, escorts, orderlies, and nurses at Beth Abraham (as in hospitals everywhere) worked long hours and were poorly paid, and in 1972 their union, local 1199, called a strike. Some of the staff had worked at the hospital for many years and had become very attached to their patients. I spoke to a number of them as they stood on the picket line, and they told me how conflicted they felt at abandoning their patients; some were weeping.

  I feared for some of the patients, especially those who were immobile and needed frequent turning in bed to prevent bedsores, as well as passive range-of-movement exercises for their joints, which would otherwise freeze up. A single day without being turned and “ranged” could start these patients on a downhill course, and it looked as if the strike might last a week or more.

  I phoned a couple of my students, explained the situation, and asked if they could help. They agreed to convene a meeting of the student board to discuss the matter. They called back two hours later, saying apologetically that the student board could not condone strikebreaking as a group. But, they added, individual students could follow their own consciences; the two students I had called said they would be right over.

  I walked with them through the picket line—the striking workers allowed us through—and we spent the next four hours turning patients, ranging their joints, and taking care of their toilet needs, at which point the two students were relieved by another pair of students. It was backbreaking, round-the-clock work, and it made us realize how hard the nurses and aides and orderlies worked in their normal routines, but we managed to prevent skin breakdown or any other problems among the more than five hundred patients.

  Work and wage issues were finally resolved, and the staff came back to work ten days later. But that last evening when I walked to my car, I found the windscreen had been smashed. Attached to it was a large, handwritten notice that said, “We love you, Dr. Sacks. But you have been a strike-breaker.” They had waited, though, until the end of the strike, to allow me and the students to care for the patients.6

  —

  As one grows older, the years seem to blur into one another, but 1972 remains sharply etched in my memory. The previous three years had been a time of overwhelming intensity, with the awakenings and tribulations of my patients; such an experience is not given to one twice in a lifetime, nor, usually, even once. Its preciousness and depth, its intensity and range, made me feel I had to articulate it somehow, but I could not imagine an appropriate form, one which could combine the objectivity of science with the intense sense of fellow feeling, the closeness I had with my patients, and the sheer wonder (and sometimes tragedy) of it all. I entered 1972 with a sharp sense of frustration, an uncertainty as to whether I would ever find a way of binding the experience and forging it into some organic unity and form.

  I still regarded England as my home and my twelve years in the States as little more than a prolonged visit. It seemed to me that I needed to return, to go home to write. “Home” meant many things: London; the large, rambling house in Mapesbury Road where I was born and where my parents, now in their seventies, still lived with Michael; and Hampstead Heath, where I used to play as a child.

  I decided to take the summer off and to get myself a flat on the edge of Hampstead Heath, within easy range of the walks, the mushroomed woods, the swimming ponds I loved, and equally easy range of Mapesbury Road. My parents would be celebrating their golden wedding anniversary in June, and there would be a gathering of the families—not only my three brothers and myself, but my parents’ siblings, nieces, nephews, and the far-flung cousinhood.

  But I had a more specific reason for being close: my mother was a natural storyteller. She would tell medical stories to her colleagues, her students, her patients, her friends. And she had told us—my three brothers and me—medical stories from our earliest days, stories sometimes grim and terrifying but always evocative of the personal qualities, the special value and valor, of the patient. My father, too, was a grand medical storyteller, and my parents’ sense of wonder at the vagaries of life, their combination of a clinical and a narrative cast of mind, were transmitted with great force to all of us. My own impulse to write—not to write fiction or poems, but to chronicle and describe—seems to have come directly from them.

  My mother had been fascinated when I told her about my postencephalitic patients and their awakenings and tribulations when I put them on L-dopa. She had been urging me to write their stories, and in the summer of 1972 she said, “Now! This is the time.”

  I spent each morning walking and swimming on the Heath, and each afternoon writing or dictating the stories of Awakenings. Every evening I would stroll down Frognal to Mill Lane and then to 37 Mapesbury Road, where I would read the latest installment to my mother. She had read to me by the hour when I was a child—I first experienced Dickens, Trollope, D. H. Lawrence, through her reading—and now she wanted me to read to her, to give full narrative form to the stories she had already heard in bits and pieces. She would listen intently, always with emotion, but equally with a sharp critical judgment, one honed by her own sense of what was clinically real. She tolerated, with mixed feelings, my meanderings and ponderings, but “ringing true” was her ultimate value. “That doesn’t ring true!” she would sometimes say, but then, more and more, “Now you have it. Now it rings true.”

  In a sort of way, then, we wrote the case histories of Awakenings together that summer, and there was a sense of time arrested, of enchantment, a privileged time-out from the rush of daily life, a special time consecrated to creation.

  My flat in Hampstead Heath was also in easy walking distance of Colin Haycraft’s office in Gloucester Crescent. I remember seeing Colin in 1951, when I was a freshman at Queen’s. He was in his final year—a short, energetic figure in his scholar’s gown, already Gibbonian
in confidence and mannerism, but agile and darting in movement and said to be a brilliant racquets-player as well as a classical scholar. But we did not actually meet until twenty years later.

  I had written the first nine case histories of Awakenings in the summer of 1969, but these had been turned down by Faber & Faber, a rejection which threw me and made me wonder if I would ever complete or publish a book again.7 I had put this manuscript away and subsequently lost it.

  Colin Haycraft, by this time, had a much respected publishing firm, Duckworth, just across the road from Jonathan Miller’s house. In late 1971, seeing my quandary, Jonathan had taken Colin a carbon copy of the first nine case histories; I had completely forgotten that he had a copy.

  Colin liked the case histories and urged me to write more. This excited me but scared me too. Colin pressed, gently; I demurred; he drew back, waited, moved in once again; he was very sensitive, very delicate with my diffidence and anxieties. I prevaricated for six months.

  Sensing that I needed a further push, Colin, in the impulsive-intuitive way he often did things, put the typescript Jonathan had given him into proofs. He did this without warning, without consulting me, in July. It was a most generous, not to say extravagant, act—what guarantee had he that I would ever continue my writing?—and also a crucial act of faith. This was before the advent of digital typesetting, and he had gone to considerable expense to produce these long galley proofs. And that was proof for me that he really thought the book was good.

  I secured a shorthand typist; I had a whiplash injury at the time, having rushed up the cellar stairs and cracked my head on a low beam, which caused such wasting of the right hand that I could not hold a pen. I forced myself to work and dictate daily—a duty which rapidly became a delight as I got into the work more and more. Dictation is not quite the right word. I settled myself on the couch, wearing my cervical collar, looked through my notes, and then told my stories to the typist, watching her facial expressions closely as she transcribed them into shorthand. Her reactions were crucial: I was talking not into a machine but to her; the scene was rather like Scheherazade in reverse. Every morning, she would bring me the previous day’s transcripts, beautifully typed, and I would read these to my mother in the evening.