Vintage Sacks

by Oliver Sacks

  This, I learned later, was not a conscious suppression—Bennett had no memory of the tic—and yet it seemed to me there must have been, if not a conscious, then a subconscious solicitude and tact at work. “Fine young man,” Bennett said, as we went outside. “Not self-conscious. Nice personality, outgoing. Most people with this would lock themselves in a closet.” I could not help feeling that his words could also be applied to himself. There are many people with Tourette’s who become agonized and self-conscious, withdraw from the world, and lock themselves in a closet. Not so Bennett: he had struggled against this; he had come through and braved life, braved people, braved the most improbable of professions. All his patients, I think, perceive this, and it is one of the reasons they trust him so.

  The man with the skin flap was the last of the outpatients, but for Bennett, immensely busy, there was only a brief break before an equally long afternoon with his inpatients on the ward. I excused myself from this to take an afternoon off and walk around the town. I wandered through Branford with the oddest sense of déjà vu and jamais vu mixed; I kept feeling that I had seen the town before, but then again that it was new to me. And then, suddenly, I had it—yes, I had seen it, I had been here before, had stopped here for a night in August 1960, when I was hitchhiking through the Rockies, to the West. It had a population then of only a few thousand and consisted of little more than a few dusty streets, motels, bars—a crossroads, little more than a truck stop in the long trek across the West. Now its population was twenty thousand, Main Street a gleaming boulevard filled with shops and cars; there was a town hall, a police station, a regional hospital, several schools—it was this that surrounded me, the overwhelming present, yet through it I saw the dusty crossroads and the bars, the Branford of thirty years before, still strangely vivid, because never updated, in my mind.

  Friday is operating day for Bennett, and he was scheduled to do a mastectomy. I was eager to join him, to see him in action. Outpatients are one thing—one can always concentrate for a few minutes—but how would he conduct himself in a lengthy and difficult procedure demanding intense, unremitting concentration, not for seconds or minutes, but for hours?

  Bennett preparing for the operating room was a startling sight. “You should scrub next to him,” his young assistant said. “It’s quite an experience.” It was indeed, for what I saw in the outpatient clinic was magnified here: constant sudden dartings and reachings with the hands, almost but never quite touching his unscrubbed, unsterile shoulder, his assistant, the mirror; sudden lungings; and touchings of his colleagues with his feet; and a barrage of vocalizations—“Hooty-hooo! Hooty-hooo!”—suggestive of a huge owl.

  The scrubbing over, Bennett and his assistant were gloved and gowned, and they moved to the patient, already anesthetized, on the table. They looked briefly at a mammogram on the X-ray box. Then Bennett took the knife, made a bold, clear incision—there was no hint of any ticcing or distraction—and moved straightaway into the rhythm of the operation. Twenty minutes passed, fifty, seventy, a hundred. The operation was often complex—vessels to be tied, nerves to be found—but the action was confident, smooth, moving forward at its own pace, with never the slightest hint of Tourette’s. Finally, after two and a half hours of the most complex, taxing surgery, Bennett closed up, thanked everybody, yawned, and stretched. Here, then, was an entire operation without a trace of Tourette’s. Not because it had been suppressed, or held in—there was never any sign of control or constraint—but because, simply, there was never any impulse to tic. “Most of the time when I’m operating, it never even crosses my mind that I have Tourette’s,” Bennett says. His whole identity at such times is that of a surgeon at work, and his entire psychic and neural organization becomes aligned with this, becomes active, focused, at ease, un-Tourettic. It is only if the operation is broken for a few minutes—to review a special X ray taken during the surgery, for example—that Bennett, waiting, unoccupied, remembers that he is Tourettic, and in that instant he becomes so. As soon as the flow of the operation resumes, the Tourette’s, the Tourettic identity, vanishes once again. Bennett’s assistants, though they have known him and worked with him for years, are still astounded whenever they see this. “It’s like a miracle,” one of them said. “The way the Tourette’s disappears.” And Bennett himself was astonished, too, and quizzed me, as he peeled off his gloves, on the neurophysiology of it all.

  Things were not always so easy, Bennett told me later. Occasionally, if he was bombarded by outside demands during surgery—“You have three patients waiting in the E.R.,” “Mrs. X. wants to know if she can come in on the tenth,” “Your wife wants you to pick up three bags of dog food”—these pressures, these distractions, would break his concentration, break the smooth and rhythmic flow. A couple of years ago, he made it a rule that he must never be disturbed while operating and must be allowed to concentrate totally on the surgery, and the O.R. has been tic-free ever since.

  Bennett’s operating brings up all the conundrums of Tourette’s, along with deep issues such as the nature of rhythm, melody, and “flow,” and the nature of acting, role, personation, and identity. A transition from uncoordinated, jerky ticciness to smooth orchestrated, coherent movement can occur instantly in Touretters when they are exposed to, called into, rhythmic music or action. I saw this with the man I described in “Witty Ticcy Ray,” who could swim the length of a pool without tics, with even, rhythmic strokes—but in the instant of turning, when the rhythm, the kinetic melody, was broken, would have a sudden flurry of tics. Many Touretters are also drawn to athletics, partly (one suspects) because of their extraordinary speed and accuracy,38 and partly because of their bursting, inordinate motor impulse and energy, which thrust toward some motor release—but a release that, happily, instead of being explosive, can be coordinated into the flow, the rhythm, of a performance or a game.

  One sees very similar situations with playing or responding to music. The convulsive or broken motor or speech patterns that may occur in Tourette’s can be instantly normalized with incanting or singing (this has also long been known to occur with stutterers). It is similar with the jerky, broken movements of parkinsonism (sometimes called kinetic stutter); these too can be replaced, with music or action, by a rhythmic, melodic flow.

  Such responses seem to involve chiefly the motor patterns of the individual, rather than the persona, the identity, in any higher form. Some of the transformation while Bennett was operating, I felt, was occurring at this elementary, “musical” level. At this level, Bennett’s operating had become automatic; there were, at every moment, a dozen things to attend to, but these were integrated, orchestrated, into a single seamless stream—and one that, like his driving, had become partly automated with time, so that he could chat with the nurses, make jokes, banter, think, while his hands and eyes and brain performed their skilled tasks faultlessly, almost unconsciously.

  But above this level, coexisting with it, was a higher, personal one, which has to do with the identity, the role, of a surgeon. Anatomy (and then surgery) have been Bennett’s constant loves, lying at the center of his being, and he is most himself, most deeply himself, when he is immersed in his work. His whole personality and demeanor—sometimes nervous and diffident—change when he puts on his surgical mantle, takes on the quiet assurance, the identity, of one who is a master at his work. It seems part of this overall change that the Tourette’s vanishes, too. I have seen exactly this in Tourettic actors as well; I know one man, a character actor, who is violently Touretty offstage, but totally free from Tourettisms, totally in role, when he is acting.

  Here one is seeing something at a much higher level than the merely rhythmic, quasi-automatic resonance of the motor patterns; one is seeing (however it is to be defined in psychic or neural terms) a fundamental act of incarnation or personation, whereby the skills, the feelings, the entire neural engrams of another self, are taking over in the brain, redefining the person, his whole nervous system, as long as the performance lasts.39
Such identity transformations, reorganizations, occur in us all as we move, in the course of a day, from one role, one persona, to another—the parental to the professional, to the political, to the erotic, or whatever. But they are especially dramatic in those who move in and out of neurological or psychiatric syndromes, and in professional performers and actors.

  These transformations, the switches between very complex neural engrams, are typically experienced in terms of “remembering” and “forgetting”—thus Bennett forgets that he is Tourettic while operating (“it never even crosses my mind”), but remembers it as soon as there is an interruption. And in the moment of remembering, he becomes so, for at this level, there is no distinction between the memory, the knowledge, the impulse, and the act—all come or go together, as one. (It is similar with other conditions: I once saw a parkinsonian man I know take a shot of apomorphine to help his rigidity and “freezing”—he suddenly unfroze a couple of minutes later, smiled, and said, “I have forgotten how to be parkinsonian.”)

  Friday afternoon is open. Bennett often likes to go for long hikes on Fridays, or cycle rides, or drives, with a sense of the trail, the open road, before him. There is a favorite ranch he loves to go to, with a beautiful lake and an airstrip, accessible only via a rugged dirt road. It is a wonderfully situated ranch, a narrow fertile strip perfectly placed between the lake and mountains, and we walked for miles, talking of this and that, with Bennett botanizing or geologizing as we went. Then, briefly, we went to the lake, where I took a swim; when I came out of the water I found that Bennett, rather suddenly, had curled up for a nap. He looked peaceful, tension-free, as he slept; and the suddenness and depth of his sleep made me wonder how much difficulty he encountered in the daytime, whether he might not sometimes be stressed to the limit. I wondered how much he concealed beneath his genial surface—how much, inwardly, he had to control and deal with.

  Later, as we continued our ramble about the ranch, he remarked that I had seen only some of the outward expressions of his Tourette’s, and these, bizarre as they occasionally seemed, were by no means the worst problems it caused him. The real problems, the inner problems, are panic and rage—feelings so violent that they threaten to overwhelm him, and so sudden that he has virtually no warning of their onset. He has only to get a parking ticket or see a police car, sometimes, for scenarios of violence to flash through his mind: mad chases, shoot-outs, flaming destructions, violent mutilation, and death scenarios that become immensely elaborated in seconds and rush through his mind with convulsive speed. One part of him, uninvolved, can watch these scenes with detachment, but another part of him is taken over and impelled to action. He can prevent himself from giving way to outbursts in public, but the strain of controlling himself is severe and exhausting. At home, in private, he can let himself go—not at others but at inanimate objects around him. There was the wall I had seen, which he had often struck in his rage, and the refrigerator, at which he had flung virtually everything in the kitchen. In his office, he had kicked a hole in the wall and had had to put a plant in front to cover it; and in his study at home the cedar walls were covered with knife marks. “It’s not gentle,” he said to me. “You can see it as whimsical, funny—be tempted to romanticize it—but Tourette’s comes from deep down in the nervous system and the unconscious. It taps into the oldest, strongest feelings we have. Tourette’s is like an epilepsy in the sub-cortex; when it takes over, there’s just a thin line of control, a thin line of cortex, between you and it, between you and that raging storm, the blind force of the subcortex. One can see the charming things, the funny things, the creative side of Tourette’s, but there’s also that dark side. You have to fight it all your life.”

  Driving back from the ranch was a stimulating, at times terrifying, experience. Now that Bennett was getting to know me, he felt at liberty to let himself and his Tourette’s go. The steering wheel was abandoned for seconds at a time—or so it seemed to me, in my alarm—while he tapped on the windshield (to a litany of “Hooty-hoo!” and “Hi, there!” and “Hideous!”), rearranged his glasses, “centered” them in a hundred different ways, and, with bent forefingers, continually smoothed and evened his mustache while gazing in the rearview mirror rather than at the road. His need to center the steering wheel in relation to his knees also grew almost frenetic: he had constantly to “balance” it, to jerk it to and fro, causing the car to zigzag erratically down the road. “Don’t worry,” he said when he saw my anxiety. “I know this road. I could see from way back that nothing was coming. I’ve never had an accident driving.”40

  The impulse to look, and to be looked at, is very striking with Bennett, and, indeed, as soon as we got back to the house he seized Mark and planted himself in front of him, smoothing his mustache furiously and saying, “Look at me! Look at me!” Mark, arrested, stayed where he was, but his eyes wandered to and fro. Now Bennett seized Mark’s head, held it rigidly toward him, hissing. “Look, look at me!” And Mark became totally still, transfixed, as if hypnotized.

  I found this scene disquieting. Other scenes with the family I had found rather moving: Bennett dabbing at Helen’s hair, symmetrically, with outstretched fingers, going “whoo, whoo” softly. She was placid, accepting; it was a touching scene, both tender and absurd. “I love him as he is,” Helen said. “I wouldn’t want him any other way.” Bennett feels the same way: “Funny disease—I don’t think of it as a disease but as just me. I say the word ‘disease,’ but it doesn’t seem to be the appropriate word.”

  It is difficult for Bennett, and is often difficult for Touretters, to see their Tourette’s as something external to themselves, because many of its tics and urges may be felt as intentional, as an integral part of the self, the personality, the will. It is quite different, by contrast, with something like parkinsonism or chorea: these have no quality of self-ness or intentionality and are always felt as diseases, as outside the self. Compulsions and tics occupy an intermediate position, seeming sometimes to be an expression of one’s personal will, sometimes a coercion of it by another, alien will. These ambiguities are often expressed in the terms people use. Thus the separateness of “it” and “I” is sometimes expressed by jocular personifications of the Tourette’s: one Touretter I know calls his Tourette’s “Toby,” another “Mr. T.” By contrast, a Tourettic possession of the self was vividly expressed by one young man in Utah, who wrote to me that he had a “Tourettized soul.”

  Though Bennett is quite prepared, even eager, to think of Tourette’s in neurochemical or neurophysiological terms—he thinks in terms of chemical abnormalities, of “circuits turning on and off,” and of “primitive, normally inhibited behaviors being released”—he also feels it as something that has come to be part of himself. For this reason (among others), he has found that he cannot tolerate haloperidol and similar drugs—they reduce his Tourette’s, assuredly but they reduce him as well, so that he no longer feels fully himself. “The side effects of haloperidol were dreadful,” he said. “I was intensely restless, I couldn’t stand still, my body twisted, I shuffled like a parkinsonian. It was a huge relief to get off it. On the other hand, Prozac has been a godsend for the obsessions, the rages, though it doesn’t touch the tics.” Prozac has indeed been a godsend for many Touretters, though some have found it to have no effect, and a few have had paradoxical effects—an intensification of their agitations, obsessions, and rages.41

  Though Bennett has had tics since the age of seven or so, he did not identify what he had as Tourette’s syndrome until he was thirty-seven. “When we were first married, he just called it a ‘nervous habit,’” Helen told me. “We used to joke about it. I’d say, ‘I’ll quit smoking, and you quit twitching.’ We thought of it as something he could quit if he wanted. You’d ask him, ‘Why do you do it?’ He’d say, ‘I don’t know why.’ He didn’t seem to be self-conscious about it. Then, in 1977, when Mark was a baby, Carl heard this program, ‘Quirks and Quarks,’ on the radio. He got all excited and hollered, ‘Helen, come li
sten! This guy’s talking about what I do!’ He was excited to hear that other people had it. And it was a relief to me, because I had always sensed that there was something wrong. It was good to put a label on it. He never made a thing of it, he wouldn’t raise the subject, but, once we knew, we’d tell people if they asked. It’s only in the last few years that he’s met other people with it, or gone to meetings of the Tourette Syndrome Association.” (Tourette’s syndrome, until very recently, was remarkably underdiagnosed and unknown, even to the medical profession, and most people diagnosed themselves, or were diagnosed by friends and family, after seeing or reading something about it in the media. Indeed, I know of another doctor, a surgeon in Louisiana, who was diagnosed by one of his own patients who had seen a Touretter on the Phil Donahue show. Even now, nine out of ten diagnoses are made, not by physicians, but by others who have learned about it from the media. Much of this media emphasis has been due to the efforts of the TSA, which had only thirty members in the early seventies but now has more than twenty thousand.)

  Saturday morning, and I have to return to New York. “I’ll fly you to Calgary if the weather’s fine,” Bennett said suddenly last night. “Ever flown with a Touretter before?”

  I had canoed with one,42 I said, and driven across country with another, but flying with one . . .

  “You’ll enjoy it,” Bennett said. “It’ll be a novel experience. I am the world’s only flying Touretter-surgeon.”

  When I awake, at dawn, I perceive, with mixed feelings, that the weather, though very cold, is perfect. We drive to the little airport in Branford, a veering, twitching journey that makes me nervous about the flight. “It’s much easier in the air, where there’s no road to keep to, and you don’t have to keep your hands on the controls all the time,” Bennett says. At the airport, he parks, opens a hangar, and proudly points out his airplane—a tiny red-and-white single-engine Cessna Cardinal. He pulls it out onto the tarmac and then checks it, rechecks it, and re-rechecks it before warming up the engine. It is near freezing on the airfield, and a north wind is blowing. I watch all the checks and rechecks with impatience but also with a sense of reassurance. If his Tourette’s makes him check everything three or five times, so much the safer. I had a similar feeling of reassurance about his surgery—that his Tourette’s, if anything, made him more meticulous, more exact, without in the least damping down his intuitiveness, his freedom.