On the Move: A Life

by Oliver Sacks

  Can an actor with a normally functioning nervous system and physiology truly “become” someone with a profoundly abnormal nervous system, experience, and behavior? On one occasion, Bob and Robin were depicting a scene in which the doctor is testing the patient’s postural reflexes (which can be absent or severely impaired in parkinsonism). I took Robin’s place for a moment to show how one tests these: one stands behind the patient and, very lightly, pulls him backwards (a normal person would accommodate to this, but a parkinsonian or postencephalitic might fall backwards like a ninepin). As I demonstrated this on Bob, he fell backwards onto me, completely inert and passive, with no hint of any reflexive reaction. Startled, I pushed him gently forward to the upright position, but now he started to topple forward; I could not balance him. I had a sense of bewilderment mixed with panic. For a moment, I thought that there had suddenly been a neurological catastrophe, that he had actually lost all his postural reflexes. Could acting like this, I wondered, actually alter the nervous system?

  The next day I was talking with him in his dressing room before the day’s shooting began, and as we talked, I noticed that his right foot was turned in with precisely the dystonic curvature it was held in when he portrayed Leonard L. on the set. I commented on this, and Bob seemed rather startled. “I didn’t realize,” he said. “I guess it’s unconscious.” He sometimes stayed in character for hours or days; he would make comments at dinner which belonged to Leonard, not himself, as if residues of the Leonard mind and character were still adhering to him.

  By February of 1990, we were exhausted: there had been four months of filming, to say nothing of the months of research that preceded this. But one event galvanized us all: Lillian Tighe, the last surviving postencephalitic from Beth Abraham, came to visit the set, where she would play herself in a scene with Bob. What would she think of the make-believe postencephalitics around her? Would the actors pass muster? There was a feeling of awe on the set as she entered; everyone recognized her from the documentary.

  I wrote in my journal that night:

  However much the actors immerse themselves, identify, they are merely playing the part of a patient; Lillian has to be one for the rest of her life. They can slip out of their roles, she cannot. How does she feel about this? (How do I feel about Robin playing me? A temporary role for him, but lifelong for me.)

  As Bob is wheeled in and takes up the frozen, dystonic posture of Leonard L., Lillian T., herself frozen, cocks an alert and critical eye. How does Bob, acting frozen, feel about Lillian, scarcely a yard away, actually so? And how does she, actually so, feel about him, acting so? She has just given me a wink, and a barely perceptible thumbs-up sign, meaning, “He’s okay—he’s got it! He really knows what it’s like.”

  1. Knowing of my botanical side, Thom would send me all of his “plant” poems. After getting his “Nasturtium,” I wrote, “I hope you may write more poems like this, celebrations of brave plants in vacant lots, ditches, crannies, etc.—you remember how the figure of Hadji Murad came back to Tolstoy when he saw a crushed but still fighting thistle by the roadside.”

  2. Early in 1970, when Thom was due to be in New York, I told him that Auden was having a birthday party, as always, on February 21, and asked him if he would like to come along. He declined, and it was only in 1973, after Auden’s death, that he said anything on the subject (in a letter of October 2, 1973): “Probably he was, apart from Shakespeare, the poet who most deeply influenced me, who made it seem most possible for me to write my self. I don’t believe he liked me very much, or so I’m told, but that doesn’t matter any more than if I were to find that Keats didn’t like me.”

  3. Thom wrote of this at length in his autobiographical essay “My Life up to Now”: “It is no longer fashionable to praise LSD, but I have no doubt at all that it has been of the utmost importance to me, both as a man and as a poet…. The acid trip is unstructured, it opens you up to countless possibilities, you hanker after the infinite.”

  4. Madeline had this stroke when she was only about fifty. She was aphasic ever after this, but she was aphasic with such wit, such style, and such ingenuity that she gave aphasia a new meaning.

  5. We went backstage to see Cummings after the play, and I asked her whether she had met many people with aphasia. “No, not a single one,” she replied. I said nothing, but I thought, “It shows.”

  6. I have since felt this about other works inspired by my own—above all by Peter Brook’s brilliant theatrical presentations of L’Homme Qui…in 1993 and The Valley of Astonishment in 2014, and by a ballet inspired by Awakenings, with music by Tobias Picker.

  7. The documentary film of Awakenings was studied in minute detail by all the actors who would play postencephalitics; this became the primary visual source for the feature film, along with the miles of Super 8 film and audiotape which I had recorded myself in 1969 and 1970.

  The documentary had never been broadcast outside the U.K., and the release of the Hollywood film seemed an ideal time to offer it to PBS. But Columbia Pictures insisted that we not do this; it thought it might distract from the “authenticity” of the feature film, an absurd idea.

  8. This reminded me of how, a couple of years earlier, I had had a visit from Dustin Hoffman, who was researching his role as an autistic man in the film Rain Man. We visited a young autistic patient of mine at Bronx State and then went for a stroll in the botanical garden. I was chatting with Hoffman’s director, and Hoffman was following a few yards behind. Suddenly I thought I heard my patient. I was extremely startled and turned round and saw it was Hoffman thinking to himself, but thinking with his voice and body, thinking enactively.

  9. Over the next twenty-five years, Robin and I became good friends, and I grew to appreciate—no less than the brilliance of his wit and his sudden, explosive improvisations—his wide reading, the depth of his intelligence, and his humane concerns.

  Once, when I gave a talk in San Francisco, a man from the audience asked me an odd question: “Are you English or are you Jewish?”

  “Both,” I replied.

  “You can’t be both,” he said. “You have to be one or the other.”

  Robin, who was in the audience, brought this up at dinner afterwards and, using an ultra-English, Cambridge voice laced with Yiddish and Yiddish aphorisms, gave a stunning demonstration of how one could indeed be both. I wish we could have recorded this marvelous flower of the moment.

  Voyages

  At one time, my father had thought of a career in neurology but then decided that general practice would be “more real,” “more fun,” because it would bring him into deeper contact with people and their lives.

  This intense human interest he preserved to the last: when he reached the age of ninety, David and I entreated him to retire—or, at least, to stop his house calls. He replied that home visits were “the heart” of medical practice and that he would sooner stop anything else. From the age of ninety to almost ninety-four, he would charter a mini-cab for the day to continue his house calls.

  There were families he had treated for several generations, and he sometimes startled a young patient by saying, “Your great-grandfather had a very similar problem in 1919.” He knew the human, the inward side of his patients no less than their bodies and felt he could not treat one without the other. (Indeed, it was often remarked that he knew the insides of his patients’ refrigerators as well as the insides of their bodies.)

  He would often become a friend, as well as a physician, to his patients. This intense interest in the entire lives of his patients made him, as it made my mother, a marvelous storyteller. His medical stories enchanted us as children and played a part in making Marcus, David, and me follow our parents into medicine.

  Pop also had a deep and lifelong passion for music. He was an inveterate concertgoer throughout his life, especially fond of the Wigmore Hall; he had first been taken there as a youth (when it was still called the Bechstein Hall). He would go to two or three concerts a week, right up to the
last months of his life. He had been going to the Wigmore Hall for longer than anyone could remember and in his later years became as legendary, in his way, as some of the performers.

  Michael, at forty-five, became closer to Pop after our mother’s death and would sometimes go out with him to concerts, which he had never done before. Pop became increasingly arthritic as he entered his eighties and was glad to have Michael as a companion, and Michael, perhaps, found it easier to help an aging, arthritic parent, rather than feeling himself, as he must have done so often in the past, the sick, dependent son-patient of a father-physician.

  For the next ten years, Michael led a relatively stable (although one could scarcely call it happy) existence. A level of tranquilizer was found which kept his psychoses at bay but did not have too many adverse effects. He continued to work as a messenger (of both mundane and, he again felt, arcane communications); he again enjoyed striding about London (though The Daily Worker, and “all that,” as he put it, were now things of the past). Michael was all too conscious of his condition, and when he was in his grimmest moods, he would say, “I am a doomed man,” though there was a hint of the messianic in this too: he was “doomed” as all messiahs are doomed. (When my friend Ren Weschler visited him once and asked how he was, Michael replied, “I am in Little Ease.” Ren looked baffled, and Michael had to explain that Little Ease was a cell in the Tower of London so small that a man could neither stand up nor lie down in it, could never find any ease.)

  But doomed or privileged, Michael felt deepening loneliness after our mother’s death; our large house was now empty save for him and Pop, empty even of patients (Pop had moved his consulting rooms out of the house). Michael had never had any friends, and his relations with colleagues, even those of many decades, were courteous but never warm. His chief love was our boxer, Butch, but Butch was getting old and arthritic and could no longer keep up with Michael.

  In 1984, the founder of the firm where Michael had worked for almost thirty-five years retired, and the company was sold to a larger firm, which promptly fired all the old employees. At fifty-six, Michael found himself out of work. He struggled to gain useful skills; he worked hard at learning typing, shorthand, and bookkeeping but found these traditional skills less and less valued in a rapidly changing world. Overcoming his awkwardness—he had never approached anyone for a job previously—he went for two or three interviews and was turned down. At this point, I think, he gave up hope of further work. He gave up his long walks and turned to heavy cigarette smoking: he spent hours sitting in the lounge, smoking and staring into space; this is how I would usually find him when I visited London in the mid- and later 1980s. For the first time in his life, at least the first time that he acknowledged, he started hearing voices. These “deejays” (he pronounced this “Die-Jays”), he told me, using some sorts of preternatural radio waves, were able to monitor his thoughts, broadcast them, and insinuate thoughts of their own.

  At this point, Michael said he wanted a general doctor of his own, not our father, who had always acted as his physician. Seeing that Michael looked underweight and pale and not merely “decompensated,” his new physician did some simple medical tests and found that Michael had anemia and hypothyroidism. Once thyroxine, iron, and vitamin B12 were prescribed, Michael regained much of his energy, and in three months the “deejays” were gone.

  —

  In 1990, Pop died; he was ninety-four. Though David and his family in London had been a great support to Michael and Pop in his later years, we all felt it would be impossible for Michael to live alone in the big house at 37 Mapesbury or even in an apartment of his own. After a long search, we settled on a residence designed for elderly Jewish people with mental illness just up the road, at 7 Mapesbury. Here, we thought, Michael, now back in good physical health, would have a supportive structure, would know the neighborhood, and could easily walk to the synagogue, the bank, or familiar shops.

  David and Lili would have Michael over for a Shabbat dinner on Friday evenings. Liz, my niece, would visit him regularly and check on all his needs. Michael agreed to all this with as good a grace as he could muster and would later joke about his relocation, saying that in his seventy-odd years the only journey he had ever made was from number 37 to number 7 Mapesbury Road. (Michael’s bond with Liz was now the closest family bond in his life. She could draw him out of his grim obsessions for a while, and they would sometimes laugh and joke together.)

  The residence, Ealon House, worked out surprisingly well; it gave Michael something of a social life and some practical skills. When I visited him, he would make a cup of tea or coffee for me in his room; he had never even made his own tea or coffee before. He showed me the washing machine and dryer in the basement; he had never taken care of his own laundry before, and now he not only did his own but helped older residents do theirs, too. And he began, by degrees, to assume a certain status, certain roles, in this small community.

  Though he had virtually ceased reading now (“Don’t send me any more books!” he wrote to me on one occasion), he had retained the fruits of a lifetime’s reading and became a virtual encyclopedia whom the other residents could consult. Michael, who had felt ignored or taken for granted for much of his life, enjoyed his new status as a man of knowledge, a wise elder.

  And after a lifetime of distrusting doctors, he came to trust the exceptional doctor, Cecil Helman, who looked after him and the other residents.1 Cecil and I enjoyed a correspondence and then a friendship, and he often wrote to me about Michael. In one letter, he wrote:

  Michael is in good shape at present. The staff describe his situation as “brilliant.” He does the Kiddush every Friday night at Ealon House, and apparently is very good at it. It’s given him an almost rabbinical role within that little community, and I believe it’s helped his self-esteem a great deal.

  (“I have a Holy Mission, I think,” Michael wrote to me. The capitalization of “Holy Mission” and the carefully underlined “I think” showed a sense of irony or humorous reservation about himself.)

  When David died of lung cancer in 1992, Michael was deeply distressed. “I should have died!” he said, and for the first time in his life made a suicidal gesture, drinking a whole bottle of strong codeine cough syrup. (He had a very long sleep, but nothing worse.)

  Otherwise, the last fifteen years of his life were relatively tranquil. He helped others and had a role, an identity he had never had at home, and he had a little life outside Ealon House, going for walks in the neighborhood and eating at a diner in Willesden Green (he enjoyed ham and eggs for dinner instead of the bland kosher food served at Ealon House). Lili and Liz, David’s wife and daughter, continued to have him over on Friday evenings. I would stay in a nearby hotel when I went to London, now that the house was sold, and invite Michael there for a Sunday brunch. And a couple of times, Michael invited me to his diner, playing the host and paying the bill; this clearly gave him great pleasure.

  When I visited him, he would always ask me to bring him a smoked salmon sandwich and a carton of cigarettes. I was happy to bring him a sandwich—smoked salmon was also my favorite food—less happy about the cigarettes; he was now chain-smoking close to a hundred cigarettes a day (their cost consumed almost his entire allowance).2

  This heavy cigarette smoking affected Michael’s health, giving him not only a smoker’s cough and bronchitis but, more seriously, aneurysms in many of the arteries in his legs. In 2002, one of his popliteal arteries became blocked, almost cutting off blood flow to the lower part of his leg, which started to become cold and pale and no doubt painful; ischemic pain can be very severe. Michael, however, made no complaints, and it was only when he was observed limping that he was sent to a doctor. Fortunately, surgeons were able to save his leg.

  Though Michael would say, “I am a doomed man!” announcing this to all and sundry in a loud, booming voice, he showed little emotion in ordinary social encounters. There was one occasion, however, when his severe demeanor softened. Our nephew Jo
nathan once visited Michael with his ten-year-old twin sons, and they both leapt up on this great-uncle they had never seen, showering him with endearments and kisses. Michael first stiffened, then softened, then burst into a roar of laughter, embracing his great-nephews with a warmth and spontaneity he had not shown (or perhaps felt) for years. This was immensely moving to Jonathan, who, born in the 1950s, had never seen Michael “normal.”

  In 2006, an aneurysm in Michael’s other leg blocked up, and here again he made no complaints, though he was well aware of the dangers. He had been getting more disabled generally and knew that should he lose the leg or become more bronchitic, Ealon House would no longer be able to care for him. If this happened, he would have to be moved to a nursing home, where he would have no autonomy, identity, or role. Life under these circumstances, he felt, would be meaningless, intolerable. I wonder, then, if he willed himself to die.

  The last scene of Michael’s life was played out in a hospital emergency room, waiting for the operation which this time, he thought, would probably take his leg. He was lying on a stretcher when he suddenly raised himself up on an elbow, said, “I’m going outside to have a smoke,” and fell back dead.

  —

  Late in 1987, I met Stephen Wiltshire, an autistic boy in England. I was astounded by the hugely detailed architectural drawings which he had started doing at the age of six; he had only to glance at a complex building or even a whole cityscape for a few seconds before drawing the whole thing accurately from memory. Now thirteen, he had already published a book of his drawings, even though he was still withdrawn and virtually mute.

  I wondered what lay beneath Stephen’s extraordinary skill in instantly “recording” a visual scene and reproducing it in minute detail; I wondered how his mind worked, how he saw the world. Above all, I wondered about his capacities for emotion and for relationship with other people. Autistic people had been seen, classically, as being intensely alone, incapable of relationships with others, incapable of perceiving others’ feelings or perspectives, incapable of humor, playfulness, spontaneity, creativity—mere “intelligent automata,” in Hans Asperger’s terms. But even my brief glimpse of Stephen had given me a much warmer impression.