by Oliver Sacks
As we sat at the table, Bennett was repeatedly distracted by tics—a compulsive touching of the glass lampshade above his head. He had to tap the glass gently with the nails of both forefingers, to produce a sharp, half-musical click or, on occasion, a short salvo of clicks. A third of his time was taken up with this ticcing and clicking, which he seemed unable to stop. Did he have to do it? Did he have to sit there?
“If it were out of reach, would you still have to click it?” I asked.
“No”, he said. “It depends entirely on how I’m situated. It’s all a question of space. Where I am now, for example, I have no impulse to reach over to that brick wall, but if I were in range I’d have to touch it perhaps a hundred times.” I followed his glance to the wall and saw that it was pockmarked, like the moon, from his touchings and jabbings; and, beyond it, the refrigerator door, dented and battered, as if from the impact of meteorites or projectiles. “Yeah”, Bennett said, now following my glance. “I fling things—the iron, the rolling pin, the saucepan, whatever—I fling things at it if I suddenly get enraged.” I digested this information in silence. It added a new dimension—a disquieting, violent one—to the picture I was building and seemed completely at odds with the genial, tranquil man before me. 55
55. Some people with Tourette’s have flinging tics—sudden, seemingly motiveless urges or compulsions to throw objects—quite different from Bennett’s flinging in rage. There may be a very brief premonition—enough, in one case, to yell a warning “Duck!”—before a dinner plate, a bottle of wine, or whatever is flung convulsively across the room. Identical throwing tics occurred in some of my postencephalitic patients when they were overstimulated by L-DOPA. (I see somewhat similar flinging behaviors—though not tics—in my two-year-old godson, now in a stage of primal antinomianism and anarchy.)
“If the light so disturbs you, why do you sit near it?” I asked.
“Sure, it’s ‘disturbance,’ ” Bennett answered. “But it’s also stimulation. I like the feel and the sound of the click. But, yeah, it can be a great distraction. I can’t study here, in the dining room—I have to go to my study, out of reach of the lamp.”
The sense of personal space, of the self in relation to other objects and other people, tends to be markedly altered in Tourette’s syndrome. I know many people with Tourette’s who cannot tolerate sitting in a restaurant within touching distance of other people and may feel compelled, if they cannot avoid this, to reach out or lunge convulsively toward them. This intolerance may be especially great if the “provoking” person is behind the Touretter. Many people with Tourette’s, therefore, prefer corners, where they are at a “safe” distance from others, and there is nobody behind them. 56
56. This was comically shown on one occasion when I went to a restaurant for dinner with three Tourettic friends in Los Angeles. All three of them at once rushed for the corner seat—not, I think, in any competitive spirit, but because each saw it as an existential-neural necessity. The lucky one was able to sit calmly in his place, while the other two were constantly lunging at other diners behind them.
Analogous problems may arise, on occasion, when driving; there may be a sense that other vehicles are “too close” or “looming”, even that they are suddenly “zooming”, when they are (a non-Tourettic person would judge) at a normal distance. There may also be, paradoxically, a tendency to be “attracted” to other vehicles, to drift or veer toward them—though the consciousness of this, and a greater speed of reaction, usually serves to avert any mishaps. (Similar illusions and urges, stemming from abnormalities in the neural basis of personal space, may occasionally be seen in parkinsonism, too.)
Another expression of Bennett’s Tourette’s—very different from the sudden impulsive or compulsive touching—is a slow, almost sensuous pressing of the foot to mark out a circle in the ground all around him. “It seems to me almost instinctual”, he said when I asked him about it. “Like a dog marking its territory. I feel it in my bones. I think it is something primal, prehuman—maybe something that all of us, without knowing it, have in us. But Tourette’s ‘releases’ these primitive behaviors.” 57
57. Tourette’s should not be regarded as a psychiatric disorder, but as a neurobiological disorder of a hyperphysiological sort, in which there may occur subcortical excitation and spontaneous stimulation of many phylogenetically primitive centers in the brain. A similar stimulation or release of “primitive” behaviors may be seen with the excitatory lesions of encephalitis lethargica, such as I describe in Awakenings (pp. 55-6). These were often apparent in the early days of the illness and became prominent again with the stimulation of L-DOPA.
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 of 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. 58
58. Such tendencies, co
mmon in Tourette’s syndrome, are also seen in patients with postencephalitic syndromes. Thus my patient Miriam H. had compulsions to count the number of e’s on every page she read; to say, or write, or spell sentences backward; to divide people’s faces into juxtapositions of geometric figures; and to balance visually, to symmetrize, everything she saw.
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. 59
59. The name of an eminent researcher on Tourette’s syndrome—Dr. Abuzzahab—has an almost diagnostic power, provoking grotesque, perseverative elaborations in Touretters (Abuzzahuzzahab, etc.). The power of the unusual to excite and impress is not, of course, confined to Touretters. The anonymous author of the ancient mnemotechnic text Ad Herennium described it, two thousand years ago, as a natural bent of the mind and one to be exploited for fixing images more firmly in the mind:
When we see in everyday life things that are petty, ordinary, and banal, we generally fail to remember them, because the mind is not being stirred by anything novel or marvellous. But if we see or hear something exceptionally base, dishonourable, unusual, great, unbelievable, or ridiculous, that we are likely to remember for a long time—, Ordinary things easily slip from the memory while the striking and the novel stay longer in the mind—Let art, then, imitate nature.
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 u
sual, 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.”
