So Shenker came to the hospital again to observe and interview the patients. The night before the article was due to be published, I rushed to a newsstand on Allerton Avenue to get an early copy of the morning paper.
Shenker had carefully laid out the nuances of what he called “an astonishing topography of tics.” He noted that one woman had an eye-clenching tic which she was able to transmute into a fist-clenching tic and that another patient could chase her tics away by concentrating on typing or knitting.
After the article appeared, I began to get a lot of letters from people with multiple tics seeking a medical opinion. I felt it would be improper to see them, because this would be profiting, in a sense, from a newspaper article. (Here, perhaps, I was echoing my father’s reaction earlier that year to the Times review of Migraine.) But there was one very persistent and engaging young man whom I did see. Ray was full of convulsive tics and what he called “ticcy witticisms” and “witty ticcicisms” (he referred to himself as Witty Ticcy Ray). I was extremely fascinated by what was going on with him, not only his rapid-fire tics, but his speed of thought and wit, as well as the ways he had found to cope with his Tourette’s. He had a good job and was happily married, but he could not walk down a street without everyone looking at him; he had been a target for bewildered or disapproving glances since he was five years old.
Ray sometimes thought of his Tourettic self (which he called Mr. T.) as distinct from his “real” self, much as Frances D., a normally reticent and reserved postencephalitic lady, felt that she had a “wild dopa self” very different from her civilized “real” self.
His Tourettic self made Ray impulsive and disinhibited and gave him an unusual rapidity of repartee and reaction generally. He almost always won games of Ping-Pong, not so much from skill as from the extraordinary speed and unpredictability of his serves and returns. (It had been similar in the early days when postencephalitic patients, before they were enveloped by parkinsonism and catatonia, tended to be hyperkinetic and impulsive and in this state could beat normal players in a game of football.) Ray’s physiological quickness and impulsiveness, conjoined with his musicality, enabled him to be a remarkable improviser on drums.
What I had seen in the summer and fall of 1969 with the postencephalitics I thought I would never see again. Now, after meeting Ray, I realized that Tourette’s syndrome was another, perhaps equally rare and rich (and in some ways kindred), subject for study.
The day after I met Ray, I thought I spotted three people in the streets of New York with the same syndrome, and the day after that another two. This amazed me, for Tourette’s was described then as extremely rare, occurring in perhaps one or two people in a million. But I realized now that it must be at least a thousand times commoner. I must have been blind not to see this before, I thought, but spending time with Ray had tuned my neurological eye, so to speak, to see Tourette’s.
I thought there must be many other people like Ray, and I fantasized about bringing them together so that they might recognize their physiological and psychological kinship and form a sort of fraternal association. In the spring of 1974, I found that this fantasy had become a reality: the Tourette Syndrome Association (TSA) had been founded in New York two years earlier by a group of parents of children with Tourette’s, but it now included about twenty adults with Tourette’s as well. I had seen a little girl with Tourette’s in 1973, and her father, a psychiatrist who had been a founding member of the TSA, invited me to a meeting.
People with Tourette’s are often unusually open to hypnosis and suggestion and disposed to involuntary repetition and imitation. I saw this at that first TSA meeting when, at one point, a pigeon flew onto a windowsill outside the conference room. It opened and closed its wings, fluttered, and then settled down. There were seven or eight people with Tourette’s sitting in front of me, and I could see several of them making fluttering movements with their arms and shoulder blades, echoing the pigeon or each other.
Towards the end of 1976, at a meeting of the TSA, I was approached by John P., a young man who said, “I am the greatest Touretter in the world. I have the most complex Tourette’s you will ever see. I can teach you things about Tourette’s that nobody else knows. Would you like me as a specimen to study?” I was a bit taken aback by this invitation in which grandiosity and self-deprecation were strangely mixed, but I suggested we meet in my office and then decide whether further study could be productive. He presented himself to me not as someone in need of help or treatment but as a research project.
Seeing the speed and complexity of his tics and verbalizations, I thought it would be useful to have a video recorder on hand when I saw him, so I arranged to rent what at the time was the most compact recorder available—a Sony Portapak (it weighed about twenty pounds).
We had two reconnaissance sessions, and John was as good as his word. I had indeed never seen a picture as complex or as severe as the one he presented and had to live with, nor had I read or heard of anything even approaching it; I dubbed it “super-Tourette’s” in my mind. I was very glad I had a video recorder going, for some of his tics and odd behaviors occurred in a fraction of a second, sometimes with two or more of them occurring simultaneously. There was far too much for the unaided eye to take in, but with the recorder I could capture everything and play it back in slow motion or frame by frame. I could also go over the video with John, who could often tell me what he had been thinking or feeling while making each tic. In this way, I thought, one might be able to have a tic analysis analogous to a dream analysis. Tics, perhaps, could be a “royal road” to the unconscious.
This was a thought I later gave up, for the majority of tics and ticcish behaviors (lunging, leaping, barking, etc.), it seemed to me, originated as reactive or spontaneous firings of the brain stem or striatum and, in this sense, were biologically but not psychically determined. But there were obvious exceptions, especially in the realm of coprolalia, the compulsive, convulsive use of expletives or offensive words (and its motor equivalent, copropraxia, or obscene gestures). John liked to attract attention, to provoke or outrage others; the compulsion to test social boundaries, the limits of propriety, is not uncommon in people with Tourette’s syndrome.
I was struck in particular by a strange sound that John often uttered along with his tics. When I recorded this and slowed down the playback, elongating the sound, I discovered that it was in fact a German word—“verboten!”—crushed into a single unintelligible noise by its ticcish rapidity. When I mentioned this to John, he said that was how his German-speaking father would admonish him whenever he ticced as a child. I sent a copy of this tape to Luria, who was fascinated by what he called “the introjection of the father’s voice as a tic.”
Many tics and ticcish behaviors, I came to feel, were poised between the involuntary and the intentional, somewhere between jerks and acts, subcortical in origin but sometimes given meaning and intentionality whether conscious or subconscious.
One summer day, while John was in my office, a butterfly flew in through the open window. John followed its soaring, zigzag flight with sudden, erratic jerks of his head and eyes as he poured out a stream of endearments and imprecations: “I want to kiss you, I want to kill you,” he repeated, and then abbreviated this to “kiss you, kill you, kiss you, kill you.” After two or three minutes of this—he seemed unable to stop as long as the butterfly was fluttering around—I said, jokingly, “If you were really concentrating, you could disregard the butterfly, even if it landed on your nose.”
The moment I said this, he clutched the end of his nose and tore at it, as if to dislodge an enormous butterfly which had attached itself there. I wondered if his excessively vivid Tourettic imagination had crossed over into hallucination, conjuring up a phantom butterfly as real, perceptually, as an actual one. It was like a little nightmare being enacted in full consciousness before me.
I worked intensively with John in the first three months of 1977, and this produced a sense of wonder, discovery
, and intellectual excitement more intense than anything I had felt since the summer of 1969, when the postencephalitics were awakening. It revived in me very strongly the sense which I had after meeting Ray, that I must write a book on Tourette’s. I wondered about writing a book with John as a central character—perhaps a composite or actual “day in the life” of someone with super-Tourette’s.
After so promising a start, I thought that a full-scale study could be immensely informative, but I cautioned John, saying that such a study was essentially an exploration, an investigation, and no therapeutic benefit could be promised. In this way, the study might be akin to Luria’s Mind of a Mnemonist or to Freud’s Interpretation of Dreams (I had these two books constantly by my side during the months of our “Tourette-analysis”).
I would see John in my office every Saturday, and I recorded our sessions with two video recorders going simultaneously, one narrowly focused on John’s face and hands, the other with a wider-angle view of the two of us.
Driving to my office on Saturday mornings, John would often stop at an Italian grocery on the way and get himself a sandwich and a Coke. The grocery was popular, always full of people whom John could describe, or rather impersonate, uncannily, bringing them all to life. I had been reading Balzac and quoted him to John as saying, “I have a whole society in my head.”
“So do I,” said John, “but in the form of imitation.” These instant, involuntary imitations and mimicries often had a flavor of caricature or mockery, and John would sometimes draw amazed or outraged glances from those around him, which he in turn impersonated or caricatured. Sitting in my office, hearing him describe and enact such scenes, I started to think that I might need to go out into the world with him to witness such interactions for myself.1 I felt very hesitant about doing this; I did not want to make him self-conscious, feeling he was observed all the while (or literally “on camera,” if I had the Portapak with me), nor did I want to intrude too much into his life outside our Saturday morning routine. And yet I thought it would be of great value if one could record a day or a week in the life of such a super-Touretter—that this could provide an anthropological or ethological view to complement the clinical and phenomenological observations made in the office.
I contacted a team of anthropological documentary filmmakers—they were just back from filming a tribe in New Guinea—and they were intrigued by the notion of a sort of medical anthropology. But they wanted $50,000 for a week’s recording, and I did not have $50,000; it was more than I earned in an entire year.
I mentioned this to Duncan Dallas (I knew that Yorkshire Television sometimes gave grants for documentary fieldwork), and he said, “Why don’t I come and see him?” Duncan arrived a couple of weeks later, and he agreed that John was unlike anything he had ever seen before and that he was very articulate and good at presenting himself. Duncan wanted to make a full documentary about him, and John, who had seen the Awakenings documentary, was excited by the idea. By this time, however, I was less enthusiastic and a little disturbed by what seemed to be excessive enthusiasm and perhaps expectations on John’s part. I wanted to continue my quiet, exploratory work with him, and now he was dreaming of being the central figure in a television documentary.
He had said that he liked to “perform,” to make “scenes,” to be the center of attention, but would afterwards avoid ever going back to a place where he had once created such a scene. How might he react to having some of his “scenes” or “performances”—exhibitionistic, but arising from his tics—captured on film, given a permanent form which he could not erase? All this was carefully discussed by the three of us during Duncan’s reconnaissance visit, and Duncan was at pains to say that John could come over to England and play a part in the editing of the film at any stage.
The filming was done in the summer of 1977, and John was in his best form: full of tics and antics, driven but also playful—clowning, improvising, and imitating when he had an audience, but also talking carefully, soberly, and often very movingly about life for someone like himself. We all thought that a remarkable but balanced and very human documentary would result.
After the filming, John and I went back to our own quiet sessions together, but I observed a certain tension in him now—a holding back I had not seen before—and when he was invited to go to London to take an active part in the editing, he declined the invitation.
The film was shown on British television early in 1978; it attracted much notice, all of it good, and a slew of letters were sent to John by viewers who felt for him and admired him. He was at first very proud of the documentary and showed it to his friends and neighbors, but he then became deeply disturbed and, above all, angry about it and turned on me, saying that I had “sold” him into the hands of the media (forgetting that he was the one who had most wanted a film and that I was the one who had counseled caution). He wanted the film to be suppressed and never shown, and this equally for the videotapes I had made (which now numbered over a hundred). If the film were ever shown again, if ever any of the tapes were shown, he said, he would come after me and kill me. I was deeply shocked and bewildered by all this—scared, too—but I acceded to his wishes, and the documentary has never been broadcast again.
But this, alas, did not satisfy him. He started to make threatening phone calls to me, and these, at first, consisted of two words, “Remember Tourette,” because as he knew I knew perfectly well, Gilles de la Tourette had himself been shot in the head by one of his own patients.2
Under the circumstances, I could not show any of the footage of John even to my medical colleagues, and this was intensely frustrating, because I felt it was extremely valuable material that could cast illumination not just on many aspects of Tourette’s syndrome but on rarely explored aspects of neuroscience and human nature in general. I thought I could write an entire book based on five seconds of this videotape, but I never did.
I withdrew an article I had written about John for The New York Review of Books; it was already in proof, but to publish, I now feared, would have inflamed him.
I understood more when the documentary of Awakenings was shown at a psychiatric meeting in the fall of 1977, and its screening was continually interrupted by someone who turned out to be John’s sister. We spoke later, and she said she found the documentary and its exposure of such patients “shocking.” She was alarmed that her brother would be exposed on television; people like him, she added, should be hidden from sight. I began to appreciate, too late, the depths of John’s ambivalence about filming: his compulsion to be seen and shown, to exhibit himself, but also to hide from sight.
—
In 1980, as a break from my abortive struggles with the Leg book, I wrote a piece about Ray, the charming, witty, ticcy man whom I had seen and followed for almost ten years. I was anxious about Ray’s reaction to my writing about him, so I asked how he might feel about its being published and offered to read my piece to him.
He said, “No, that’s okay. You don’t have to.”
When I insisted, he invited me to his house for dinner so I could read it to him and his wife afterwards. Ray ticced and twitched a good deal as I read, and at one point he burst out, “You take a few liberties!”
I stopped and pulled out a red pencil, saying, “What shall I delete? It’s up to you.”
But he said, “Go on—keep reading.”
When I came to the end of the piece, he said, “It’s essentially true. But don’t publish it here. Publish it in London.”
I sent the piece to Jonathan Miller, who liked it and passed it on to Mary-Kay Wilmers, who (with Karl Miller, Jonathan’s brother-in-law) had recently founded the London Review of Books.
“Witty Ticcy Ray” was a different sort of writing from anything I had done before—it was the first full-length case history I had written about living a life, a full life, despite a complex neurological condition—and its reception encouraged me to write more case histories like it.
—
In 1
983, Elkhonon Goldberg, a friend and colleague who had studied in Moscow under Luria, asked me if I would join him in giving a seminar at the Albert Einstein College of Medicine on the new field of neuropsychology which Luria had pioneered.
This session was devoted to agnosias—perceptions or misperceptions stripped of meaning—and at one point Goldberg turned to me and asked if I could give an example of a visual agnosia. I immediately thought of one of my patients, a music teacher who had become unable to recognize his students (or anyone else) visually. I described how Dr. P. might pat the “heads” of water hydrants or parking meters, mistaking them for children, or amiably address knobs on the furniture and be astounded when they did not reply. At a certain point, I said, he even mistook his wife’s head for a hat. The students, while appreciating its gravity, could not help laughing at this comical situation.
I had not thought of elaborating my notes on Dr. P. up to this point, but telling his story to the students brought our encounter back into my mind, and that evening I wrote up his case history. I titled it “The Man Who Mistook His Wife for a Hat” and sent it off to the London Review of Books.
It did not occur to me that it might become the title story of a collection of case histories.
—
In the summer of 1983, I went to Blue Mountain Center, a retreat for artists and writers, for a month. It was on a lake, which was wonderful for swimming, and I had my mountain bike with me. I had never found myself surrounded by writers and artists before, and I enjoyed the combination of solitary days spent writing and thinking and convivial dinners with the other residents at the end of the day.