Vintage Sacks

by Oliver Sacks

  Bennett sometimes calls Tourette’s “a disease of disinhibition.” He says there are thoughts, not unusual in themselves, that anyone might have in passing but that are normally inhibited. With him, such thoughts perseverate in the back of the mind, obsessively, and burst out suddenly, without his consent or intention. Thus, he says, when the weather is nice he may want to be out in the sun getting a tan. This thought will be in the back of his mind while he is seeing his patients in the hospital and will emerge in sudden, involuntary utterances. “The nurse may say, ‘Mr. Jones has abdominal pain,’ and I’m looking out the window saying, ‘Tanning rays, tanning rays.’ It might come out five hundred times in a morning. People in the ward must hear it—they can’t not hear it—but I guess they ignore it or feel that it doesn’t matter.”

  Sometimes the Tourette’s manifests itself in obsessive thoughts and anxieties. “If I’m worried about something,” Bennett told me as we sat around the table, “say, I hear a story about a kid being hurt, I have to go up and tap the wall and say, ‘I hope it won’t happen to mine.’” I witnessed this for myself a couple of days later. There was a news report on TV about a lost child, which distressed and agitated him. He instantly began touching his glasses (top, bottom, left, right, top, bottom, left, right), centering and recentering them in a fury. He made “whoo, whoo” noises, like an owl, and muttered sotto voce, “David, David—is he all right?” Then he dashed from the room to make sure. There was an intense anxiety and overconcern; an immediate alarm at the mention of any lost or hurt child; an immediate identification with himself, with his own children; an immediate, superstitious need to check up.

  After tea, Bennett and I went out for a walk, past a little orchard heavy with apples and on up the hill overlooking the town, the friendly malamutes gamboling around us. As we walked, he told me something of his life. He did not know whether anyone in his family had Tourette’s—he was an adopted child. His own Tourette’s had started when he was about seven. “As a kid, growing up in Toronto, I wore glasses, I had bands on my teeth, and I twitched,” he said. “That was the coup de grâce. I kept my distance. I was a loner; I’d go for long hikes by myself. I never had friends phoning all the time, like Mark—the contrast is very great.” But being a loner and taking long hikes by himself toughened him as well, made him resourceful, gave him a sense of independence and self-sufficiency. He was always good with his hands and loved the structure of natural things—the way rocks formed, the way plants grew, the way animals moved, the way muscles balanced and pulled against each other, the way the body was put together. He decided very early that he wanted to be a surgeon.

  Anatomy came “naturally” to him, he said, but he found medical school extremely difficult, not merely because of his tics and touchings, which became more elaborate with the years, but because of strange difficulties and obsessions that obstructed the act of reading. “I’d have to read each line many times,” he said. “I’d have to line up each paragraph to get all four corners symmetrically in my visual field.” Besides this lining up of each paragraph, and sometimes of each line, he was beset by the need to “balance” syllables and words, by the need to “symmetrize” the punctuation in his mind, by the need to check the frequency of a given letter, and by the need to repeat words or phrases or lines to himself.35 All this made it impossible to read easily and fluently. Those problems are still with him and make it difficult for him to skim quickly, to get the gist, or to enjoy fine writing or narrative or poetry. But they did force him to read painstakingly and to learn his medical texts very nearly by heart.

  When he got out of medical school, he indulged his interest in faraway places, particularly the North: he worked as a general practitioner in the Northwest Territories and the Yukon and worked on icebreakers circling the Arctic. He had a gift for intimacy and grew close to the Eskimos he worked with and he became something of an expert in polar medicine. And when he married, in 1968—he was twenty-eight—he went with his bride around the world and gratified a boyhood wish to climb Kilimanjaro.

  For the past seventeen years, he has practiced in small, isolated communities in western Canada—first, for twelve years as a general practitioner in a small city. Then, five years ago, when the need to have mountains, wild country, and lakes on his doorstep grew stronger, he moved to Branford. (“And here I will stay. I never want to leave it.”) Branford, he told me, has the right “feel.” The people are warm but not chummy, they keep a certain distance. There is a natural well-bredness and civility. The schools are of high quality, there is a community college, there are theaters and bookstores—Helen runs one of them—but there is also a strong feeling for the outdoors, for the wilds.

  There is much hunting and fishing, but Bennett prefers backpacking and climbing and cross-country skiing.

  When Bennett first came to Branford, he was regarded, he thought, with a certain suspicion. “A surgeon who twitches! Who needs him? What next?” There were no patients at first, and he did not know if he could make it there, but gradually he won the town’s affection and respect. His practice began to expand, and his colleagues, who had initially been startled and incredulous, soon came to trust and accept him, too, and to bring him fully into the medical community. “But enough said,” he concluded as we returned to the house. It was almost dark now, and the lights of Branford were twinkling. “Come to the hospital tomorrow—we have a conference at seven-thirty. Then I’ll do outpatients and rounds on my patients. And Friday I operate—you can scrub with me.”

  I slept soundly in the Bennetts’ basement room that night, but in the morning I woke early, roused by a strange whirring noise in the room next to mine—the playroom. The playroom door had translucent glass panels. As I peered through them, still half-asleep, I saw what appeared to be a locomotive in motion—a large, whirring wheel going round and round and giving off puffs of smoke and occasional hoots. Bewildered, I opened the door and peeked in. Bennett, stripped to the waist, was pedaling furiously on an exercise bike while calmly smoking a large pipe. A pathology book was open before him—turned, I observed, to the chapter on neurofibromatosis. This is how he invariably begins each morning—a half hour on his bike, puffing his favorite pipe, with a pathology or surgery book open to the day’s work before him. The pipe, the rhythmic exercise, calm him. There are no tics, no compulsions—at most, a little hooting. (He seems to imagine at such times that he is a prairie train.) He can read, thus calmed, without his usual obsessions and distractions.

  But as soon as the rhythmic cycling stopped, a flurry of tics and compulsions took over; he kept digging at his belly, which was trim, and muttering, “Fat, fat, fat . . . fat, fat, fat . . . fat, fat, fat,” and then, puzzlingly, “Fat and a quarter tit.” (Sometimes the “tit” was left out.)

  “What does it mean?” I asked.

  “I have no idea. Nor do I know where ‘Hideous’ comes from—it suddenly appeared one day two years ago. It’ll disappear one day, and there will be another word instead. When I’m tired, it turns into ‘Gideous.’ One cannot always find sense in these words; often it is just the sound that attracts me. Any odd sound, any odd name, may start repeating itself, get me going. I get hung up with a word for two or three months. Then, one morning, it’s gone, and there’s another one in its place.” Knowing his appetite for strange words and sounds, Bennett’s sons are constantly on the lookout for “odd” names—names that sound odd to an English-speaking ear, many of them foreign. They scan the papers and their books for such words, they listen to the radio and TV, and when they find a “juicy” name, they add it to a list they keep. Bennett says of this list, “It’s about the most valuable thing in the house.” He calls its words “candy for the mind.”

  This list was started six years ago, after the name Oginga Odinga, with its alliterations, got Bennett going—and now it contains more than two hundred names. Of these, twenty-two are “current”—apt to be regurgitated at any moment and chewed over, repeated, and savored internally. Of the twenty-two
, the name of Slavek J. Hurka—an industrial-relations professor at the University of Saskatchewan, where Helen studied—goes the furthest back; it started to echolale itself in 1974 and has been doing so, without significant breaks, for the last seventeen years. Most words last only a few months. Some of the names (Boris Blank, Floyd Flake, Morris Gook, Lubor J. Zink) have a short, percussive quality. Others (Yelberton A. Tittle, Babaloo Mandel) are marked by euphonious polysyllabic alliterations. Echolalia freezes sounds, arrests time, preserves stimuli as “foreign bodies” or echoes in the mind, maintaining an alien existence, like implants. It is only the sound of the words, their “melody,” as Bennett says, that implants them in his mind; their origins and meanings and associations are irrelevant. (There is a similarity here to his “enshrinement” of names as tics.)

  “It is similar with the number compulsions,” he said. “Now I have to do everything by threes or fives, but until a few months ago it was fours and sevens. Then one morning I woke up—four and seven had gone, but three and five had appeared instead. It’s as if one circuit were turned on upstairs, and another turned off. It doesn’t seem to have anything to do with me.”

  It is always the odd, the unusual, the salient, the caricaturable, that catch the ear and eye of the Touretter and tend to provoke elaboration and imitation.36 This is well brought out in the personal account cited by Meige and Feindel in 1902:

  I have always been conscious of a predilection for imitation. A curious gesture or bizarre attitude affected by any one was the immediate signal for an attempt on my part at its reproduction, and is still. Similarly with words or phrases, pronunciation or intonation, I was quick to mimic any peculiarity.

  When I was thirteen years old I remember seeing a man with a droll grimace of eyes and mouth, and from that moment I gave myself no respite until I could imitate it accurately. . . . For several months I kept repeating the old gentleman’s grimace involuntarily. I had, in short, begun to tic.

  At 7:25 we drove into town. It took barely five minutes to get to the hospital, but our arrival there was more complicated than usual, because Bennett had unwittingly become notorious. He had been interviewed by a magazine a few weeks earlier, and the article had just come out. Everyone was smiling and ribbing him about it. A little embarrassed, but also enjoying it, Bennett took the joking in good part. (“I’ll never live it down—I’ll be a marked man now.”) In the doctors’ common room, Bennett was clearly very much at ease with his colleagues, and they with him. One sign of this ease, paradoxically, was that he felt free to Tourette with them—to touch or tap them gently with his fingertips or, on two occasions when he was sharing a sofa, to suddenly twist on his side and tap his colleague’s shoulder with his toes—a practice I had observed in other Touretters. Bennett is somewhat cautious with his Tourettisms on first acquaintance and conceals or downplays them until he gets to know people. When he first started working at the hospital, he told me, he would skip in the corridors only after checking to be sure that no one was looking; now when he skips or hops no one gives it a second glance.

  The conversations in the common room were like those in any hospitals—doctors talking among themselves about unusual cases. Bennett himself, lying half-curled on the floor, kicking and thrusting one foot in the air, described an unusual case of neurofibromatosis—a young man whom he had recently operated on. His colleagues listened attentively. The abnormality of the behavior and the complete normality of the discourse formed an extraordinary contrast. There was something bizarre about the whole scene, but it was evidently so common as to be unremarkable and no longer attracted the slightest notice. But an outsider seeing it would have been stunned.

  After coffee and muffins, we repaired to the surgical-outpatients department, where half a dozen patients awaited Bennett. The first was a trail guide from Banff, very western in plaid shirt, tight jeans, and cowboy hat. His horse had fallen and rolled on top of him, and he had developed an immense pseudocyst of the pancreas. Bennett spoke with the man—who said the swelling was diminishing—and gently, smoothly palpated the fluctuant mass in his abdomen. He checked the sonograms with the radiologist—they confirmed the cyst’s recession—and then came back and reassured the patient. “It’s going down by itself. It’s shrinking nicely—you won’t be needing surgery after all. You can get back to riding. I’ll see you in a month.” And the trail guide, delighted, walked off with a jaunty step. Later, I had a word with the radiologist. “Bennett’s not only a whiz at diagnosis,” he said. “He’s the most compassionate surgeon I know.”

  The next patient was a heavy woman with a melanoma on her buttock, which needed to be excised at some depth. Bennett scrubbed up, donned sterile gloves. Something about the sterile field, the prohibition, seemed to stir his Tourette’s; he made sudden darting motions, or incipient motions, of his sterile, gloved right hand toward the ungloved, unwashed, “dirty” part of his left arm. The patient eyed this without expression. What did she think, I wondered, of this odd darting motion, and the sudden convulsive shakings he also made with his hand? She could not have been entirely surprised, for her G.P. must have prepared her to some extent, must have said, “You need a small operation. I recommend Dr. Bennett—he’s a wonderful surgeon. I have to tell you that he sometimes makes strange movements and sounds—he has a thing called Tourette’s syndrome—but don’t worry, it doesn’t matter. It never affects his surgery.”

  Now, the preliminaries over, Bennett got down to the serious work, swabbing the buttock with an iodine antiseptic and then injecting local anesthetic, with an absolutely steady hand. But as soon as the rhythm of action was broken for a moment—he needed more local, and the nurse held out the vial for him to refill his syringe—there was once again the darting and near-touching. The nurse did not bat an eyelid; she had seen it before and knew he would not contaminate his gloves. Now, with a firm hand, Bennett made an oval incision an inch to either side of the melanoma, and in forty seconds he had removed it, along with a Brazil-nut-shaped wodge of fat and skin. “It’s out!” he said. Then, very rapidly, with great dexterity, he sewed the margins of the wound together, putting five neat knots on each nylon stitch. The patient, twisting her head, watched him as he sewed and joshed him: “Do you do all the sewing at home?”

  He laughed. “Yes. All except the socks. But no one darns socks these days.”

  She looked again. “You’re making quite a quilt.”

  The whole operation completed in less than three minutes, Bennett cried, “Done! Here’s what we took.” He held the lump of flesh before her.

  “Ugh!” she exclaimed, with a shudder. “Don’t show me. But thanks anyway.”

  All this looked highly professional from beginning to end, and, apart from the dartings and near-touchings, non-Tourettic. But I couldn’t decide about Bennett’s showing the excised lump to the patient. (“Here!”) One may show a gallstone to a patient, but does one show a bleeding, misshapen piece of fat and flesh? Clearly, she didn’t want to see it, but Bennett wanted to show it, and I wondered if this urge was part of his Tourettic scrupulosity and exactitude, his need to have everything looked at and understood. I had the same thought later in the morning, when he was seeing an old lady in whose bile duct he had inserted a T-tube. He went to great lengths to draw the tube, to explain all the anatomy, and the old lady said, “I don’t want to know it. Just do it!”

  Was this Bennett the Touretter being compulsive or Professor Bennett the lecturer on anatomy? (He gives weekly anatomy lectures in Calgary.) Was it simply an expression of his meticulousness and concern? An imagining, perhaps, that all patients shared his curiosity and love of detail? Some patients doubtless did, but obviously not these.

  So it went on through a lengthy outpatient list. Bennett is evidently a very popular surgeon, and he saw or operated on each patient swiftly and dexterously, with an absolute and single-minded concentration, so that when they saw him they knew they had his whole attention. They forgot that they had waited, or that there were other
s still waiting, and felt that for him they were the only people in the world.

  Very pleasant, very real, the surgeon’s life, I kept thinking—direct, friendly relationships, especially clear with outpatients like this. An immediacy of relation, of work, of results, of gratification—much greater than with a physician, especially a neurologist (like me). I thought of my mother, how much she enjoyed the surgeon’s life, and how I always loved sitting in at her surgical-outpatient rounds. I could not become a surgeon myself, because of an incorrigible clumsiness, but even as a child I had loved the surgeon’s life, and watching surgeons at work. This love, this pleasure, half-forgotten, came back to me with great force as I observed Bennett with his patients; made me want to be more than a spectator; made me want to do something, to hold a retractor, to join in the surgery somehow.

  Bennett’s last patient was a young mechanic with extensive neurofibromatosis, a bizarre and sometimes cancerous disease that can produce huge brownish swellings and protruding sheets of skin, disfiguring the whole body.37 This young man had had a huge apron of tissue hanging down from his chest, so large that he could lift it up and cover his head, and so heavy that it bowed him forward with its weight. Bennett had removed this a couple of weeks earlier—a massive procedure—with great expertise, and was now examining another huge apron descending from the shoulders, and great flaps of brownish flesh in the groins and armpits. I was relieved that he did not tic “Hideous!” as he removed the stitches from the surgery, for I feared the impact of such a word being uttered aloud, even if it was nothing but a long-standing verbal tic. But, mercifully, there was no “Hideous!”; there were no verbal tics at all, until Bennett was examining the dorsal skin flap and let fly a brief “Hid—,” the end of the word omitted by a tactful apocope.