On the Move: A Life

  For the first two weeks at Blue Mountain, however, I found myself completely blocked and in great pain: I had pushed myself too hard on the bike, and my back had seized up. On day sixteen, I happened to pull out the memoirs of Luis Buñuel to read and found a sentence in which he expresses his fear of losing his memory and his identity, as his aging and demented mother had done. This suddenly activated my memories of Jimmie, an amnesic sailor I had started seeing in the 1970s. I got to work instantly, spent twelve hours writing about Jimmie, and by nightfall completed his story, “The Lost Mariner.” I wrote nothing more from days seventeen to thirty. When people asked me if my stay at Blue Mountain had been a “productive” one, I was not sure how to answer: I had one supremely productive day and twenty-nine blocked or sterile ones.

  I offered the piece to Bob Silvers at The New York Review of Books, and he liked it, although he made an interesting request. He asked, “Can I see your notes on the patient?” He looked through my consultation notes, written each time I had seen Jimmie, and he said, “Many of these are more vivid and immediate than what you’ve given me. Why don’t you insert some of your notes and weave things together, so we have both your immediate response to the patient and the more reflective one as you look back over the years?”3 I followed his advice, and he published the piece in February of 1984. This was a huge encouragement to me, and over the next eighteen months I sent him five more pieces, which would form a nucleus for The Man Who Mistook His Wife for a Hat. Bob’s support and friendship and his endlessly careful and constructive editing are legendary; once he phoned me when I was in Australia, asking how I would feel about replacing a comma with a semicolon. And he has nudged me into many essays I might not have written otherwise.

  I continued to publish individual pieces (some in The New York Review of Books, others in different journals, like The Sciences and Granta), at first with no notion that they could come together in any way. Colin and Jim Silberman, my American publisher, felt there was a sort of unity of tone and feeling in them, but I was not sure they would hold together as a book.

  I wrote what were to become the last four pieces in The Man Who Mistook His Wife for a Hat on the last four days of 1984, conceiving them as a quartet, perhaps even a little book to be called “The World of the Simple.”

  The following month I visited my friend Jonathan Mueller, who was working as a neurologist at the VA Hospital in San Francisco. As we walked around the Presidio, where the hospital was located, he told me of his interest in the sense of smell. I then told him two stories. One was about a man who, despite complete and permanent destruction of his sense of smell from a head injury, started to imagine (or possibly hallucinate) contextually appropriate smells, like the smell of coffee when he saw it brewing. The other was the story of a medical student who, in the course of an amphetamine-induced mania, developed an extraordinary heightening of the sense of smell (this story was really about my own experience, though in Hat I called the medical student “Stephen D.”). The next morning, over a very long meal in a Vietnamese restaurant, I wrote both stories out, bracketed them under a single title (“The Dog Beneath the Skin”), and sent them off to my publishers. I had felt that my Hat book was missing something, and now “Dog” provided the missing piece.

  With this, I felt a marvelous sense of completion and liberation. I had completed my book of “clinical tales,” I was a free man, and I could take a real holiday, which I felt I had not done in a dozen years. Impulsively, I decided to visit Australia; I had never been there, and my brother Marcus lived in Sydney with his wife and children. I had met Marcus’s family when they came to England for my parents’ golden wedding anniversary in 1972 but had not seen them since. I walked down to San Francisco’s Union Square, where Qantas had an office, presented my passport, and said I wanted to go on the first available flight to Sydney. No problem, they said, there was plenty of room, and I had just enough time to hurry back to the hotel, get my things, and head for the airport.

  It was the longest plane ride I had ever been on, but time passed rapidly as I wrote excitedly in my journal, and fourteen hours later we arrived in Sydney; I recognized the famous bridge and the opera house as we circled the city. I handed in my passport at Passport Control and was about to move on when the passport officer said, “And your visa?”

  “Visa?” I replied. “What visa? Nobody told me about a visa.” Previously genial, the passport officer suddenly became very stern and serious: Why was I coming to Australia? Was there anyone who could vouch for me? I said that my brother and his family were in the airport awaiting me. I was told to sit down while he was found and my bona fides checked. The authorities gave me a provisional visa for ten days, but they warned me, “Never do this again, or we’ll send you straight back to the States.”

  My ten days in Australia gave me a strong sense of joyous discovery—discovering a brother I hardly knew (Marcus was ten years older than I and had gone to Australia in 1950); a sister-in-law, Gay, whom I immediately felt at home with (she shared my passions for minerals and plants, for swimming and diving); and a young nephew and niece who bonded with their new (and, to their eyes, exotic) uncle.

  With Marcus, I sought and found a relationship I had never really had with my brothers in England. It was a relationship I could not have had with David, who was so unlike me—dapper, charming, social—or Michael, who was lost in the depths of schizophrenia. With Marcus—quiet, scholarly, thoughtful, and warm—I felt I could have a deeper sort of relationship.

  I fell in love, too, with Sydney and later with the Daintree Rainforest and the Great Barrier Reef in Queensland, which I found overwhelmingly beautiful—and strange. Seeing Australia’s unique flora and fauna made me think of how Darwin was so astonished by the plants and animals in Australia that he wrote in his journal, “Two distinct Creators must have been at work.”

  —

  After the heights and depths Colin and I had been through with Awakenings and Leg, our relationship became lighter and easier. If the yearlong editing of Leg had almost killed us both, working on the Hat book, as we both called it, was straightforward. Many of the pieces in Hat had already been published, and Colin, besides editing the rest, suggested how they might be divided into four groups, with introductions for each section.

  Colin published the book in November 1985, just six months after the manuscript was completed; the U.S. edition came out in January 1986, with a modest initial printing of fifteen thousand copies.

  My Leg book had not sold particularly well, and no one expected that a book of neurological stories would be a commercial success. But after a few weeks, Summit had to do another printing and then another. The book’s popularity grew through word of mouth, and in April, completely unexpectedly, it appeared on the New York Times best-seller list. I thought it must be a mistake or a temporary surge, but it would stay on the best-seller list for twenty-six weeks.

  What amazed and moved me, even more than being a “best seller,” were the letters which poured in, many from people who had themselves experienced problems which I had written about in Hat—face-blindness, musical hallucinations, etc.—but which they had never before admitted to anyone or even, sometimes, to themselves. Others asked about the people I had written about.

  “How is Jimmie, the Lost Mariner?” they would write. “Say hello to him. Give him my best.” Jimmie was real to them, and this was so of many other figures in the book; the reality of their situations and struggles touched the hearts, as well as the minds, of many readers. Readers could imagine themselves in Jimmie’s position, whereas the extreme and tragic predicament of my Awakenings patients was almost beyond even the most sympathetic imagination.

  One or two reviewers saw me as specializing in the “bizarre” or “exotic,” but I felt the opposite. I thought of my case histories as “exemplary”—I very much liked Wittgenstein’s dictum that a book should consist of examples—and hoped that perhaps, by depicting cases of exceptional severity, one might illuminate no
t only the impact and experience of being neurologically ill but crucial and perhaps unexpected aspects of the organization and workings of the brain.

  —

  Although Jonathan Miller had said to me, after Awakenings was published, “You’re famous now,” it was not really so. Awakenings had received a literary prize and acclaim in England, but it was hardly noticed in the United States (it got only one review, from Peter Prescott at Newsweek). With the sudden popularity of Hat, though, I had entered the public sphere, whether I wanted it or not.

  Certainly there were advantages. Suddenly I was in contact with a great many people. I had powers to help but also powers to harm. I could no longer write anything in an anonymous way. I had not really thought of a reading public when I wrote Migraine and Awakenings and the Leg book. Now I felt a certain self-consciousness.

  I had given occasional public lectures before, but after Hat came out, I was deluged with speaking invitations and requests of all sorts. For better and for worse, with Hat’s publication, I became a public figure, with a public persona, even though by disposition I am solitary and venture to believe that the best, at least the most creative, part of me is solitary. Solitude, creative solitude, was more difficult to come by now.

  My fellow neurologists, however, remained somewhat remote and dismissive. Now to this was added, I think, a certain suspicion. I had, it seemed, defined myself as a “popular” writer, and if one is popular, then, ipso facto, one is not to be taken seriously. This was by no means completely so, and there were some colleagues who saw Hat as solid, detailed neurology embedded in a fine, classical narrative form. But by and large, the medical silence continued.

  —

  In July of 1985, a few months before Hat was published, I felt a rebirth of interest in Tourette’s syndrome. Over the course of a few days, I filled an entire notebook with thoughts and again saw the possibility of a whole book arising. I was visiting England at the time, and this flow of ideas and excitement reached its height on the plane back to New York. But it was to be interrupted a day or two after my return, when the postman delivered a package to my little house on City Island. It was from The New York Review of Books, and it contained Harlan Lane’s history of the deaf and of sign language, When the Mind Hears. Bob Silvers wanted to know if I would review it. “You have never really thought about language,” Bob wrote. “This book will force you to.”

  I was not sure I wanted to be diverted from the Tourette’s book I planned to write. I had originally wanted to start a Tourette’s book after meeting Ray in 1971, but it was derailed first by my leg accident and then by the business with John. Now I felt it was in danger of being bumped once again. And yet Harlan Lane’s book both fascinated and outraged me. It recounted the story of deaf people; their unique, rich culture based on a visual language, sign; and the continuing debate about whether deaf people should be educated in their own visual language or forced into “oralism,” an often disastrous decision for people born deaf.

  My interests in the past had always risen directly from clinical experience, but now I found myself, almost against my will, becoming involved in an exploration of deaf history and culture and the nature of sign languages—something I had no firsthand experience with. But I went to visit some local deaf schools where I met a number of deaf children. And, inspired by Nora Ellen Groce’s book Everyone Here Spoke Sign Language, I visited a small town in Martha’s Vineyard where a century before nearly a quarter of the population had been born deaf. Deaf people in this town were not seen as “deaf”; they were seen simply as farmers, scholars, teachers, sisters, brothers, uncles, aunts.

  By 1985, there were no longer any deaf people in the town, but the older hearing people still had vivid memories of their deaf relatives and neighbors and still sometimes used sign among themselves. Over the years, the community had adopted the one language everyone could use; hearing and deaf alike were fluent in sign. I had never really thought much about cultural topics, and I was intrigued to encounter the idea of an entire community adapting in this way.

  When I visited Gallaudet University in Washington, D.C., (it is the only university in the world for deaf and hearing-impaired students) and talked about the “hearing impaired,” one of the deaf students signed, “Why don’t you look at yourself as sign impaired?”4 It was a very interesting turning of the tables, because there were hundreds of students all conversing in sign, and I was the mute one who could understand nothing and communicate nothing, except through an interpreter. I got drawn more and more deeply into deaf culture, and my little book review expanded into a more personal essay, which was published in The New York Review of Books in the spring of 1986.

  And that, I thought, was the end of my involvement with the deaf world—a brief but fascinating journey.

  —

  One day in the summer of 1986, I got a phone call from a young photographer, Lowell Handler. He had been using special stroboscopic techniques to catch people with Tourette’s syndrome in mid-tic. Could he come round and show me his portfolio? He had a special sympathy for the subject, he said, because he himself had Tourette’s. A week later we met. His portraits impressed me, and we began to discuss a possible collaboration in which we would travel around the country meeting other people with Tourette’s, documenting their lives in text and photographs.

  Both of us had heard tantalizing reports about a Mennonite community in a small town in Alberta where there was an extraordinary concentration of people with Tourette’s syndrome. Roger Kurlan and Peter Como, neurologists in Rochester, had visited La Crete several times to map the genetic distribution of Tourette’s, and some in the Tourette’s community had jokingly started to refer to the town as Tourettesville. But there had not been a detailed study of particular individuals in La Crete and of what it meant to have Tourette’s syndrome in such a close-knit, religious community.

  Lowell went on a preliminary visit to La Crete, and we started to plan a longer expedition. We needed support for the cost of travel and processing a great deal of film. I applied to the Guggenheim Foundation for a fellowship, proposing to do a study of the “neuroanthropology” of Tourette’s syndrome, and was awarded a grant for $30,000; Lowell got a commission from Life magazine, still flourishing at the time and famous for its photojournalism.

  By the summer of 1987, arrangements had been made for us to visit La Crete. Lowell was laden with cameras and extra lenses; I had just my usual notebooks and pens. The La Crete visit was extraordinary in many ways and broadened my sense of the range of Tourette’s syndrome and of people’s reactions to it. It also gave me a sense of how strongly Tourette’s, though neurological in origin, could be modified by context and culture—in this case, a deeply supportive religious community in which Tourette’s was accepted as God’s will. What would living with Tourette’s be like, we wondered, in a much more permissive environment? We resolved to visit Amsterdam to find out.5

  Lowell and I stopped in London on our way to Amsterdam, in part because I wanted to visit my father on his birthday (he was ninety-two) and in part because Hat had just come out in paperback and the BBC had asked me to talk about Tourette’s on its World Service. There was a taxi waiting to take me back to the hotel after my interview, with a most unusual taxi driver. He jerked, ticced, barked, cursed, and at a red light got out and jumped on the hood of his car, leaping back into his driver’s seat before the light turned green. I was amazed at this—how clever of the BBC or my publishers, knowing I would be talking about Tourette’s, to select a spectacularly Tourettic taxi driver to drive me back! And yet I was puzzled. The taxi driver did not say anything, although he must have known that my special interest in Tourette’s was the reason he had been selected. I said nothing for several minutes and then, hesitantly, asked him how long he had had the condition.

  “What do you mean—’condition’?” he said angrily. “I don’t have a ‘condition’!”

  I apologized and said I had not meant to upset him, but I was a doctor and had
been so struck by his unusual movements that I wondered if he had a condition called Tourette’s syndrome. He shook his head violently and repeated that he did not have any “condition” and that if he had a few nervous movements, this had not prevented him from being a sergeant in the army or anything else. I said nothing more, but when we arrived at my hotel, the driver said, “What was that syndrome you mentioned?”

  “Tourette’s syndrome,” I said, and gave him the name of a neurological colleague in London, adding that she was a very warm, understanding person, as well as having an unrivaled expertise with patients with Tourette’s.

  —

  The Tourette Syndrome Association had grown steadily since 1972, and satellite groups were being established all over the United States (and indeed around the world). In 1988, the TSA organized its first national meeting, and nearly two hundred people with Tourette’s gathered for three days at a hotel in Cincinnati. Many of them had never met another person with Tourette’s, and they feared they might “catch” one another’s tics. This fear was not unfounded, for sharing tics can indeed occur when people with Tourette’s meet. Indeed, some years ago, after meeting a Tourettic man in London with a spitting tic, I mentioned this to another Touretter in Scotland, who immediately spat and said, “I wish you hadn’t told me that!” and added a spitting tic to his already large repertoire.

  In honor of the Cincinnati meeting, the governor of Ohio had declared a statewide Tourette’s awareness week, but apparently not everyone knew this. One of us, Steve B., a young man with striking Tourette’s and coprolalia, went into a Wendy’s restaurant for a hamburger. While he was waiting for his food, Steve jerked and yelled an obscenity or two, and the restaurant manager asked him to leave, saying, “You can’t do that here.”