On the Move: A Life

by Oliver Sacks

  Colin was alarmed when he heard of my accident but fascinated when I told him how it had happened and what was going on with me in the hospital. “This is grand stuff!” he exclaimed. “You have to write all about it.” He paused and then added, “It sounds as if you’re actually living the book right now.” A few days later, he brought me an enormous dummy for a book he had just published (a dummy has no text, just the book’s cover enclosing blank pages)—seven hundred empty, creamy white pages—so that I could write as I lay in my hospital bed. I was delighted with this huge notebook, the largest I had ever had, and kept very full notes of my own involuntary journey, as I saw it, into neurological limbo and back. (Other patients, seeing me with this huge book, would say, “You lucky bugger—we’re just going through it, but you’re making a book of it.”) Colin called frequently to check on my progress—the progress of my “book,” quite as much as my progress as a patient—and his wife, Anna, often came as well, bringing gifts of fruits and smoked trout.

  The book I wanted to write would be about the losing and the reclaiming of a limb. Since I had called my last book Awakenings, I thought I would call this next one “Quickenings.”

  But there were to be problems with this book of a sort I had not had before, because writing it involved reliving the accident, reliving the passivity and horrors of patienthood; it involved, too, an exposure of some of my own intimate feelings in a way which my more “doctorly” writings had never done.

  There were many other problems. I had been elated, and a bit daunted, by the response to Awakenings. Auden and others had said what I had hardly dared to think—that Awakenings was a major work. But if this was so, I saw no way of following it with anything comparable. And if Awakenings, with its wealth of clinical observation, had been ignored by my colleagues, what could I expect of a book entirely concerned with the odd and subjective experience of a single subject—myself?

  By May of 1975, I had written a first rough draft of “Quickenings” (later to be titled, at Jonathan Miller’s suggestion, “A Leg to Stand On”). I felt, as Colin did, that it could soon be readied for publication. Colin was so confident, indeed, that he included it in his upcoming 1976–77 catalogue.

  But something went wrong between Colin and me that summer of 1975, as I strove to finish the book. The Millers went up to Scotland in August and allowed me the use of their house in London. This was right opposite Colin’s house, as close as one could get—what could be more ideal for the work that lay ahead? But the proximity which had been so delightful, so productive with Awakenings now unhappily had the opposite effect. I would write every morning, spend the afternoon walking or swimming, and every evening, around seven or eight, Colin would come by. He had eaten by then, and usually drunk a good deal too, and tended more often than not to be flushed, irritable, and argumentative. The August nights were hot and airless, and perhaps there was something about my manuscript or something about me which brought out his anger; I was tense and anxious that summer and uncertain about my writing. He would pick one of the pages I had typed, read a sentence or a paragraph, and then attack it—its tone, its style, its substance. He would take each sentence, each thought, and worry it to death—or so it seemed to me. He showed, I thought, none of the humor, the geniality, I had expanded in before but a censoriousness so strict I shriveled before it. After these evening sessions, I would have an impulse to tear up the day’s work, to feel the book was idiocy—that I could or should not go on.

  The summer of 1975 ended on an evil note, and (though I never encountered Colin in such a state ever again) it cast a shadow on the years to come. Thus Leg was not, after all, completed that year.

  Lennie worried about me: Awakenings was finished, Leg was running into difficulties, and I did not seem to have any special project to animate me. She wrote, “I do so hope…that the sort of work that’s right for you will come your way, and continue to do so. I feel strongly that you must write, whether you are in the mood for it or not.” Two years later, she added, “Do get the leg book off your mind and write your next.”

  —

  Many versions of Leg were to be written over the next few years, each longer, more intricate, more labyrinthine than the last. Even the letters I sent to Colin were of inordinate length—one, from 1978, ran to more than five thousand words, with an addendum of another two thousand.

  I also wrote to Luria, who replied patiently and thoughtfully to my overlong letters. Finally, when he saw me obsessing endlessly about a possible book, he sent me a two-word telegram: “DO IT.”

  He followed this with a letter in which he spoke of the “central resonances of a peripheral injury.” He went on, “You are discovering an entirely new field…. Please publish your observations. It may do something to alter the ‘veterinary’ approach to peripheral disorders, and to open the way to a deeper and more human medicine.”

  But the writing—the incessant writing and tearing up of drafts—continued. I found Leg more painful and difficult than anything I had ever written, and some of my friends (Eric in particular), seeing me so obsessed and so stuck, urged me to give the book up as a bad job.

  —

  In 1977, Charlie Markham, a former mentor in neurology at UCLA, visited New York. I was fond of Charlie and had spent time with him when he was doing research on movement disorders. Over lunch, he quizzed me about my work and exclaimed, “But you have no position!”

  I said I did have a position.

  “What? What sort of position do you have?” he asked (he himself had recently ascended to chair of neurology at UCLA).

  “At the heart of medicine,” I answered. “That’s where I am.”

  “Pfft,” said Charlie, with a brief, dismissive gesture.

  I had come to feel this during the years of my patients’ “awakenings,” when I lived next door to the hospital and sometimes spent twelve or fifteen hours a day with them. They were welcome to visit me; some of the more active ones would come over to my place for a cup of cocoa on Sunday mornings, and some I would take to the New York Botanical Garden, just opposite the hospital. I monitored their medications, their often unstable neurological states, but I did my best, too, to see that they had full lives—as full as possible, given their physical limitations. I felt that trying to open up the lives of these patients, who had been immobilized and shut up in hospital for so many years, was an essential part of my role as their physician.

  Though I no longer had a position or salary at Beth Abraham, I continued to go there regularly. I was too close to my patients to allow any break in our contact, even though I started to see patients in other facilities—nursing homes all over New York City, from Staten Island to Brooklyn and Queens.1 I became a peripatetic neurologist.

  In some of these places, generically referred to as “the manors,” I saw the complete subjugation of the human to medical arrogance and technology. In some cases, the negligence was willful and criminal—patients left unattended for hours or even abused physically or mentally. In one “manor,” I found a patient with a broken hip, in intense pain, ignored by the staff and lying in a pool of urine. I worked in other nursing homes where there was no negligence but nothing beyond basic medical care. That those who entered such nursing homes needed meaning—a life, an identity, dignity, self-respect, a degree of autonomy—was ignored or bypassed; “care” was purely mechanical and medical.

  I found these nursing homes as horrible in their way as Ward 23, and perhaps even more troubling, since I could not help wondering whether they represented portents or “models” of the future.

  I found the exact opposite of the “manors” in the residential homes of the Little Sisters of the Poor.

  I first heard of the Little Sisters when I was a boy, for both my parents consulted at their homes in London—my father as a general practitioner and my mother as a surgical consultant. Auntie Len would always say, “If I get a stroke, Oliver, or get disabled, get me to the Little Sisters; they have the best care in the world.” />
  Their homes are about life—living the fullest, most meaningful life possible given their residents’ limitations and needs. Some of the residents have had strokes, some have dementia or parkinsonism, some have “medical” conditions (cancer, emphysema, heart disease, etc.), some are blind, some are deaf, and others, though in robust health, have become lonely and isolated and long for the human warmth and contact of a community.

  Besides medical care, the Little Sisters provide therapy of every kind—physical therapy, occupational therapy, speech therapy, music therapy, and (if need be) psychotherapy and counseling. In addition to therapy (though no less therapeutic) are activities of all sorts, activities which are not invented but real, like gardening and cooking. Many residents have special roles or identities in the homes—from helping in the laundry to playing the organ in the chapel—and some have pets to care for. There are outings to museums, racetracks, theaters, gardens. Residents with families may lunch out on weekends or stay with their relatives over the holidays, and the homes are visited regularly by children from nearby schools, who interact spontaneously and unself-consciously with people seventy or eighty years their senior and may form affectionate bonds with them. Religion is central but not mandatory; there is no preachiness, no evangelism, no religious pressure of any sort. Not all the residents are believers, though there is a great religious devotion among the Sisters, and it is difficult to imagine such a level of care without such a deep dedication.2

  There may (and perhaps must) be a difficult period of adjustment in giving up one’s own home for a communal one, but the vast majority of those admitted to the Little Sisters’ homes are able to establish meaningful and enjoyable lives of their own—sometimes more so than they have known for years—along with the assurance that all their medical problems will be sensitively monitored and treated and that, when the time comes, they can die in peace and dignity.

  All this represents an older tradition of care, preserved by the Little Sisters since the 1840s and, indeed, going back to the ecclesiastical traditions of the Middle Ages (such as Victoria Sweet describes so movingly in God’s Hotel)—combined with the best that modern medicine can offer.

  Though I was dispirited by the “manors” and soon stopped going to them, the Little Sisters inspire me, and I love going to their residences. I have been going to some of them, now, for more than forty years.

  —

  Early in 1976, I received a letter from Jonathan Cole, a medical student at the Middlesex in London. He spoke of having enjoyed Migraine and Awakenings and added that he had done a year of research in sensory neurophysiology at Oxford before going on to clinical work. He wondered if he could spend his elective period, about two months, with me. “I would like,” he wrote, “to observe the methods of your department and would willingly fit in with whatever teaching course exists.”

  I felt warmed, flattered, at being approached by a student at the hospital where I had been a medical student nearly twenty years earlier. But I had to disabuse him of various notions regarding my position and ability to provide the sort of teaching one has in medical school, so I wrote back to him:

  Dear Mr. Cole,

  I thank you for your letter of February 27, and am sorry to be so long in replying.

  My delay in replying is because I don’t know what to reply. But here, roughly, is my situation:

  I don’t have a Department.

  I am not in a Department.

  I am a gypsy, and survive—rather marginally and precariously—on odd jobs here and there.

  When I worked full-time at Beth Abraham I often had students spend some time with me for their electives—and this was an experience we would always find very pleasant and rewarding.

  But now I am, as it were, without any position or base or home, but peripatetic here and there. I can’t possibly offer any formal sort of teaching—or anything which could be formally accredited to you.

  Informally (I sometimes think) I see and learn and do a great deal, with the extremely varied patients I see in various clinics and Homes, and every seeing-and-learning-and-doing situation is, eo ipso, a teaching situation. I find every patient I see, everywhere, vividly alive, interesting and rewarding; I have never seen a patient who didn’t teach me something new, or stir in me new feelings and new trains of thought; and I think that those who are with me in these situations share in, and contribute to, this sense of adventure. (I regard all neurology, everything, as a sort of adventure!)

  Do write and let me know how things work out with you—once again, I would be delighted to see you in an informal, casual, peripatetic way, but I am in no sense “set up” for any formal teaching whatever.

  With best wishes—and thanks,

  Oliver Sacks

  It took almost a year to make arrangements and provide funds, but early in 1977 Jonathan arrived for his elective with me.

  We were both, I think, a little nervous: I was, after all, the author of Awakenings, even if I had no position, and Jonathan had done research in sensory neurophysiology at Oxford and was obviously far more sophisticated and up to date in physiological thinking than I was. It was going to be a new, unprecedented experience for us both.

  We soon discovered one strong interest that we shared; we were both fascinated by “the sixth sense,” proprioception: unconscious, invisible, but arguably more vital than any or all of the other five senses put together. One could be blind and deaf, like Helen Keller, and still lead a fairly rich life, but proprioception was crucial for the perception of one’s own body, the position and movement of one’s limbs in space, crucial indeed for the perception of their existence. How, if proprioception were extinguished, would a human being survive?

  Such a question would hardly arise in the usual course of life; proprioception is always there, never intruding itself, but quietly guiding every movement we make. I am not sure that I would have thought about proprioception much had I not had the bizarre disturbance which (at the very time Jonathan came to New York) I was struggling to write about in my Leg book—a disturbance stemming in large part, so I thought, from the breakdown of proprioception, a breakdown so profound that I could not say, without looking, where my left leg was, or that it was, nor did it feel “mine.”

  And, by coincidence, around the time Jonathan came to New York, my friend and colleague Isabelle Rapin sent me a patient, a young woman, who, as a result of a viral illness, had suddenly lost all proprioception and sense of touch from the neck down.3 Jonathan could not have known, in 1977, how profoundly his life would be mingled in the future with that of another patient who had the same condition.

  Going with me to the Little Sisters and other homes all over New York, Jonathan saw a variety of patients. One especially stayed in both of our minds, a man with Korsakoff’s syndrome whose lack of memory forced him to confabulate continually. In the course of three minutes, “Mr. Thompson” (as I later called him) identified me (in my white doctor’s coat) as a customer in his delicatessen, an old friend he would go to the races with, a kosher butcher, and a gas station attendant; only then, with some prompting, did he guess that I might be his doctor.4 I burst out laughing as he moved from one comic misrecognition or confabulation to another, and sober Jonathan (as he told me later) was shocked at this, shocked that I seemed to be laughing at a patient. But when Mr. Thompson, an ebullient Irishman, started laughing too, laughing at the antics of his own Korsakoffian imagination, Jonathan relaxed and started laughing himself.

  I used to carry a video camera with me when I went to see patients, and Jonathan was intrigued by the uses of video recording and instant playback; video recording was rather new in those days and rarely used in hospitals. He was fascinated to see how patients with parkinsonism, for example, unaware of their tendency to accelerate or to lean to one side, could become aware of it through viewing their own postures or gait on video—and learn measures to correct these.

  I took Jonathan to Beth Abraham several times; he was particularly keen to m
eet the patients he had read about in Awakenings. He was greatly intrigued, he told me, that it had been possible for me to write about these patients and even film them, yet continue to be seen by them as a trustworthy physician, not as someone who had exploited or betrayed them. This must have been very much in Jonathan’s mind when, eight years later, he met Ian Waterman, the man who was to change his life.

  Ian, like Christina—the disembodied lady—had suffered a devastating sensory neuropathy. He had been a robust nineteen-year-old when a virus suddenly deprived him of all proprioception below his head. Most people in this rare situation are scarcely able to control their limbs at all and are confined to crawling or sitting in a wheelchair. But Ian had found many amazing ways of dealing with his condition and was able to lead a fairly normal existence, despite his profound neurological deficits.

  Much that is automatic in the rest of us, occurring without the need for conscious supervision, Ian can only undertake with conscious deliberation and monitoring. When he sits, he must consciously hold himself erect so he does not fall forward; he can walk only if he locks his knees and keeps his eyes on the task. Lacking the “sixth sense” of proprioception, he must substitute vision instead. This focus and concentration means that he cannot easily do two things at once. He can stand, or he can talk, but in order to stand and talk, he must lean against a support. He may appear perfectly normal, but if the lights suddenly go out without warning, he will fall helplessly to the ground.

  Over the years, Jonathan and Ian have formed a deep relationship—as doctor and patient, investigator and subject, and, increasingly as colleagues and friends (they have been working together for thirty years now). In the course of this decades-long collaboration, Jonathan has written dozens of scientific articles and a remarkable book, Pride and a Daily Marathon, about Ian. (He is now working on a follow-up.)5

  I have found few things more moving, over the years, than to see how Jonathan, my student, has himself become eminent as a physician, physiologist, and writer; he is the author of four major books now and more than a hundred physiological papers.