by Oliver Sacks
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 subcortex; 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 rear-view 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.” 63
63. Driving cross country with another friend with Tourette’s was also a memorable experience, for he would twitch the steering wheel violently from side to side, stamp on the brake or the accelerator suddenly, or pull out the ignition key at speed. But he always checked that these Tourettisms were safe, and never had an accident in ten years of driving.
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 selfness 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. 64
64. This was very clear with another Tourettic physician, an obstetrician, who had not only tics but panics and rages that, with a great effort, he could contain. When he was put on Prozac, this precarious control broke down, and he got into a violent fight with the police and spent a night in jail.
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 listen! 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, 65 I said, and driven a
cross country with another, but flying with one—
65. Canoeing with Shane F. one summer on Lake Huron was a remarkable human and clinical experience, for the canoe became an extension of his body, would pitch and plunge with each of his Tourettisms, giving me an unforgettably direct sense of what it must be like to be him. We were constantly flung around, as in a storm, constantly on the point of overturning, and I longed for the canoe to founder, and sink once and for all, so that I could escape and swim back to the shore.
“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.
His checking done, Bennett leaps like a trapeze artist into the plane, revs the engine while I climb in, and takes off. As we climb, the sun is rising over the Rockies to the east and floods the little cabin with a pale, golden light. We head toward nine-thousand-foot crests, and Bennett tics, flutters, reaches, taps, touches his glasses, his mustache, the top of the cockpit. Minor tics, Little League, I think, but what if he has big tics? What if he wants to twirl the plane in midair, to hop and skip with it, to do somersaults, to loop the loop? What if he has an impulse to leap out and touch the propeller? Touretters tend to be fascinated by spinning objects; I have a vision of him lunging forward, half out the window, compulsively lunging at the propeller before us. But his tics and compulsions remain very minor, and when he takes his hands off the controls the plane continues quietly. Mercifully, there is no road to keep to. If we rise or fall or veer fifty feet, what does it matter? We have the whole sky to play with.
And Bennett, though superbly skilled, a natural aviator, is like a child at play. Part of Tourette’s, at least, is no more than this—the release of a playful impulse normally inhibited or lost in the rest of us. The freedom, the spaciousness, obviously delight Bennett; he has a carefree, boyish look I rarely saw on the ground. Now, rising, we fly over the first peaks, the advance guard of the Rockies; yellowing larches stream beneath us. We clear the slopes by a thousand feet or more. I wonder whether Bennett, if he were by himself, might want to clear the peaks by ten feet, by inches—Touretters are sometimes addicted to close shaves. At ten thousand feet, we move in a corridor between peaks, mountains shining in the morning sun to our left, mountains silhouetted against it to our right. At eleven thousand feet, we can see the whole width of the Rockies—they are only fifty-five miles across here—and the vast golden Alberta prairie starting to the east. Every so often Bennett’s right arm flashes in front of me, his hand taps lightly on the windshield. “Sedimentary rocks, look!” He gestures through the window. “Lifted up from the sea bottom at seventy to eighty degrees.” He gazes at the steeply sloping rocks as at a friend; he is intensely at home with these mountains, this land. Snow lies on the sunless slopes of the mountains, none yet on their sunlit faces; and over to the northwest, toward Banff, we can see glaciers on the mountains. Bennett shifts, and shifts, and shifts again, trying to get his knees exactly symmetrical beneath the controls of the plane.
In Alberta now—we have been flying for forty minutes—the Highwood River winds beneath us. Flying due north, we start a gentle descent toward Calgary, the last, declining slopes of the Rockies all shimmering with aspen. Now, lower, to vast fields of wheat and alfalfa—farms, ranches, fertile prairie—but still, everywhere, stands of golden aspen. Beyond the checkerboard of fields, the towers of Calgary rise abruptly from the flat plain.
Suddenly, the radio crackles alive—a huge Russian air transport is coming in; the main runway, closed for maintenance, must quickly be opened up. Another massive plane, from the Zambian air force. The world’s planes come to Calgary for special work and maintenance; its facilities, Bennett tells me, are some of the best in North America. In the middle of this important flurry, Bennett radios in our position and statistics (fifteen-foot-long Cardinal, with a Touretter and his neurologist) and is immediately answered, as fully and helpfully as if he were a 747. All planes, all pilots, are equal in this world. And it is a world apart, with a freemasonry of its own, its own language, codes, myths, and manners. Bennett, clearly, is part of this world and is recognized by the traffic controller and greeted cheerfully as he taxis in.
He leaps out with a startling, ticlike suddenness and celerity—I follow at a slower, “normal” pace—and starts talking with two giant young men on the tarmac, Kevin and Chuck, brothers, both fourth-generation pilots in the Rockies. They know him well. “He’s just one of us”, Chuck says to me. “A regular guy. Tourette’s—what the hell? He’s a good human being. A damn good pilot, too.”
Bennett yarns with his fellow pilots and files his flight plan for the return trip to Branford. He has to return straightaway; he is due to speak at eleven to a group of nurses, and his subject, for once, is not surgery but Tourette’s. His little plane is refueled and readied for the return flight. We hug and say goodbye, and as I head for my flight to New York I turn to watch him go. Bennett walks to his plane, taxis onto the main runway, and takes off, fast, with a tailwind following. I watch him for a while, and then he is gone.
4. To See and Not See
Early in October of 1991, I got a phone call from a retired minister in the Midwest, who told me about his daughter’s fiancé, a fifty-year-old man named Virgil, who had been virtually blind since early childhood. He had thick cataracts and was also said to have retinitis pigmentosa, a hereditary condition that slowly but implacably eats away at the retinas. But his fiancée, Amy, who required regular eye checks herself because of diabetes, had recently taken him to see her own ophthalmologist, Dr. Scott Hamlin, and he had given them new hope. Dr. Hamlin, listening carefully to the history, was not so sure that Virgil did have retinitis pigmentosa. It was difficult to be certain at this stage, because the retinas could no longer be seen beneath the thick cataracts, but Virgil could still see light and dark, the direction from which light came, and the shadow of a hand moving in front of his eyes, so obviously there was not a total destruction of the retina. And cataract extraction was a relatively simple procedure, done under local anesthesia, with very little surgical risk. There was nothing to lose—and there might be much to gain. Amy and Virgil would be getting married soon—wouldn’t it be fantastic if he could see? If, after a near-lifetime of blindness, his first vision could be his bride, the wedding, the minister, the church! Dr. Hamlin had agreed to operate, and the cataract on Virgil’s right eye had been removed a fortnight earlier, Amy’s father informed me. And, miraculously, the operation had worked. Amy, who began keeping a journal the day after the operation—the day the bandages were removed—wrote in her initial entry: “Virgil can SEE!—Entire office in tears, first time Virgil has sight for forty years—Virgil’s family so excited, crying, can’t believe it!—Miracle of sight restored incredible!” But the following day she remarked problems: “Trying to adjust to being sighted, tough to go from blindness to sighted. Has to think faster, not able to trust vision yet—Like baby just learning to see, everything new, exciting, scary, unsure of what seeing means.”
A neurologist
’s life is not systematic, like a scientist’s, but it provides him with novel and unexpected situations, which can become windows, peepholes, into the intricacy of nature—an intricacy that one might not anticipate from the ordinary course of life. “Nature is nowhere accustomed more openly to display her secret mysteries”, wrote William Harvey, in the seventeenth century, “than in cases where she shows traces of her workings apart from the beaten path.” Certainly this phone call—about the restoration of vision in adulthood to a patient blind from early childhood—hinted of such a case. “In fact”, writes the ophthalmologist Alberto Valvo, in Sight Restoration after Long-Term Blindness, “the number of cases of this kind over the last ten centuries known to us is not more than twenty.”
What would vision be like in such a patient? Would it be “normal” from the moment vision was restored? This is what one might think at first. This is the commonsensical notion—that the eyes will be opened, the scales will fall from them, and (in the words of the New Testament) the blind man will “receive” sight. 66
66. There is a hint of something stranger, more complex, in Mark’s description of the miracle at Bethsaida, for here, at first, the blind man saw “men as trees, walking”, and only subsequently was his eyesight fully restored (Mark 8:22-26).
But could it be that simple? Was not experience necessary to see? Did one not have to learn to see? I was not well acquainted with the literature on the subject, though I had read with fascination the great case history published in the Quarterly Journal of Psychology in 1963 by the psychologist Richard Gregory (with Jean G. Wallace), and I knew that such cases, hypothetical or real, had riveted the attention of philosophers and psychologists for hundreds of years. The seventeenth-century philosopher William Molyneux, whose wife was blind, posed the following question to his friend John Locke: “Suppose a man born blind, and now adult, and taught by his touch to distinguish between a cube and a sphere [be] made to see: [could he now] by his sight, before he touched them—distinguish and tell which was the globe and which the cube?” Locke considers this in his 1690 Essay Concerning Human Understanding and decides that the answer is no. In 1709, examining the problem in more detail, and the whole relation between sight and touch, in A New Theory of Vision, George Berkeley concluded that there was no necessary connection between a tactile world and a sight world—that a connection between them could be established only on the basis of experience.
