Vintage Sacks (9 page)

In the astonishing interviews recorded by Groce, the island's older residents would talk at length, vividly and affectionately, about their former relatives, neighbors, and friends, usually without even mentioning that they were deaf. And it would only be if this question was specifically asked that there would be a pause and then, “Now you come to mention it, yes, Ebenezer
was
deaf and dumb.” But Ebenezer's deaf-and-dumbness had never set him apart, and scarcely even been noticed as such: he had been seen, he was remembered, simply as “Ebenezer”—friend, neighbor, dory fisherman—not as some special, handicapped, set-apart deaf-mute. The deaf on Martha's Vineyard loved, married, earned their livings, worked, thought, wrote as everyone else did—there were not set apart in any way, unless it was that they were, on the whole, better educated than their neighbors, for virtually all of the deaf on Martha's Vineyard were sent to be educated at the Hartford Asylum—and were often looked at as the most sagacious in the community.
²⁹

Intriguingly, even after the last deaf Islander had died in 1952, the hearing tended to preserve Sign among themselves, not merely for special occasions (telling dirty jokes, talking in church, communicating between boats, etc.) but generally. They would slip into it, involuntarily, sometimes in the middle of a sentence, because Sign is “natural” to all who learn it (as a primary language), and has an intrinsic beauty and excellence sometimes superior to speech.

I was so moved by Groce's book that the moment I finished it I jumped in the car, with only a toothbrush, a tape recorder, and a camera—I had to see this enchanted island for myself. I saw how some of the oldest inhabitants still preserved Sign, delighted in it, among themselves. My first sight of this, indeed, was quite unforgettable. I drove up to the old general store in West Tisbury on a Sunday morning and saw half a dozen old people gossiping together on the porch. They could have been any old folks, old neighbors, talking together—until suddenly, very startlingly, they all dropped into Sign. They signed for a minute, laughed, then dropped back into speech. At this moment I knew I had come to the right place. And, speaking to one of the very oldest there, I found one other thing, of very great interest. This old lady, in her nineties, but sharp as a pin, would sometimes fall into a peaceful reverie. As she did so, she might have seemed to be knitting, her hands in constant complex motion. But her daughter, also a signer, told me she was not knitting but thinking to herself, thinking in Sign. And even in sleep, I was further informed, the old lady might sketch fragmentary signs on the counterpane—she was dreaming in Sign. Such phenomena cannot be accounted as merely social. It is evident that if a person has learned Sign as a primary language, his brain/mind will retain this, and use it, for the rest of that person's life, even though hearing and speech are freely available and unimpaired. Sign, I was now convinced, was a fundamental language of the brain.

A SURGEON'S LIFE

Tourette's syndrome is seen in every race, every culture, every stratum of society; it can be recognized at a glance once one is attuned to it; and cases of barking and twitching, of grimacing, of strange gesturing, of involuntary cursing and blaspheming, were recorded by Aretaeus of Cappadocia almost two thousand years ago. Yet it was not clinically delineated until 1885, when George Gilles de la Tourette, a young French neurologist—a pupil of Charcot's and a friend of Freud's—put together these historical accounts with observations of some of his own patients. The syndrome as he described it was characterized, above all, by convulsive tics, by involuntary mimicry or repetition of others' words or actions (echolalia and echopraxia), and by the involuntary or compulsive utterances of curses and obscenities (coprolalia). Some individuals (despite their affliction) showed an odd insouciance or nonchalance; some a tendency to make strange, often witty, occasionally dream-like associations; some extreme impulsiveness and provocativeness, a constant testing of physical and social boundaries; some a constant, restless reacting to the environment, a lunging at and sniffing of everything or a sudden flinging of objects; and yet others an extreme stereotypy and obsessiveness—no two patients were ever quite the same.

Any disease introduces a doubleness into life—an “it,” with its own needs, demands, limitations. With Tourette's, the “it” takes the form of explicit compulsion, a multitude of explicit impulsions and compulsions: one is driven to do this, to do that, against one's own will, or in deference to the alien will of the “it.” There may be a conflict, a compromise, a collusion between these wills. Thus being “possessed” can be more than a figure of speech for someone with an impulse disorder like Tourette's, and no doubt in the Middle Ages it was sometimes literally seen as “possession.” (Tourette himself was fascinated by the phenomenon of possession and wrote a play about the epidemic of demonic possession in medieval Loudun.)

But the relation of disease and self, “it” and “I,” can be particularly complex in Tourette's, especially if it has been present from early childhood, growing up with the self, intertwining itself in every possible way. The Tourette's and the self shape themselves each to the other, come more and more to complement each other, until finally, like a long-married couple, they become a single, compound being. This relation is often destructive, but it can also be constructive, can add speed and spontaneity and a capacity for unusual and sometimes startling performance. For all its intrusiveness, Tourette's may be used creatively, too.

Yet in the years after its delineation, Tourette's tended to be seen not as an organic but as a “moral” disease—an expression of mischievousness or weakness of the will, to be treated by rectifying the will. From the 1920s to the 1960s, it tended to be seen as a psychiatric disease, to be treated by psychoanalysis or psychotherapy; but this, on the whole, proved ineffective, too. Then, with the demonstration, in the early 1960s, that the drug haloperidol could dramatically suppress its symptoms, Tourette's was regarded (in a sudden reversal) as a chemical disease, the result of an imbalance of a neurotransmitter, dopamine, in the brain. But all these views are partial, and reductive, and fail to do justice to the full complexity of Tourette's. Neither a biological nor a psychological nor a moral-social viewpoint is adequate; we must see Tourette's not only simultaneously from all three perspectives, but from an inner perspective, an existential perspective, that of the affected person himself. Inner and outer narratives here, as everywhere, must fuse.

Many professions, one would think, would be closed to someone with elaborate tics and compulsions or strange, antic behaviors, but this does not seem to be the case. Tourette's affects perhaps one person in a thousand, and we find people with Tourette's—sometimes the most severe Tourette's—in virtually every walk of life. There are Tourettic writers, mathematicians, musicians, actors, disc jockeys, construction workers, social workers, mechanics, athletes. Some things, one might think, would be completely out of the question—above all, perhaps, the intricate, precise, and steady work of a surgeon. This would have been my own belief not so long ago. But now, improbably, I know
five
surgeons with Tourette's.
³⁰

I first met Dr. Carl Bennett at a scientific conference on Tourette's in Boston. His appearance was unexceptionable—he was fiftyish, of middle size, with a brownish beard and mustache containing a hint of grey, and was dressed soberly in a dark suit—until he suddenly lunged or reached for the ground or jumped or jerked. I was struck both by his bizarre tics and by his dignity and calm. When I expressed incredulity about his choice of profession, he invited me to visit and stay with him, where he lived and practiced, in the town of Branford, in British Columbia—to do rounds at the hospital with him, to scrub with him, to see him in action. Now, four months later, in early October, I found myself in a small plane approaching Branford, full of curiosity and mixed expectations. Dr. Bennett met me at the airport, greeted me—a strange greeting, half lunge, half tic, a gesture of welcome idiosyncratically Tourettized—grabbed my case, and led the way to his car in an odd rapid skipping walk, with a skip each fifth step and sudden reachings to the ground as if to pick something up.

The situation of Branford is almost idyllic, nestled as it is in the shadow of the Rockies, in southeast British Columbia with Banff and its mountains to the north, and Montana and Idaho to the south; it lies in a region of great gentleness and fertility but is ringed with mountains, glaciers, lakes. Bennett himself has a passion for geography and geology; a few years ago he took a year off from his surgical practice to study both at the University of Victoria. As he drove, he pointed out moraines, stratifications, and other formations, so that what had at first seemed to my eyes a mere pastoral landscape became charged with a sense of history and chthonic forces, of immense geological vistas. Such keen, fierce attention to every detail, such constant looking below the surface, such examination and analysis, are characteristic of the restless, questioning Tourettic mind. It is, so to speak, the other side of the obsessive and perseverative tendencies, its disposition to reiterate, to touch again and again.

And, indeed, whenever the stream of attention and interest was interrupted, Bennett's tics and iterations immediately reasserted themselves—in particular, obsessive touchings of his mustache and glasses. His mustache had constantly to be smoothed and checked for symmetry, his glasses had to be “balanced”—up and down, side to side, diagonally, in and out—with sudden, ticcy touchings of the fingers, until they too, were exactly “centered.” There were also occasional reachings and lungings with his right arm; sudden, compulsive touchings of the windshield with both forefingers (“The touching has to be symmetrical,” he commented); sudden repositionings of his knees, or the steering wheel (“I have to have the knees symmetrical in relation to the steering wheel. They have to be
exactly
centered”); and sudden, high-pitched vocalizations, in a voice completely unlike his own, they sounded like “Hi, Patty,” “Hi, there,” and, on a couple of occasions, “Hideous!” (Patty, I learned later, was a former girlfriend, her name now enshrined in a tic.)
³¹

There was little hint of this repertoire until we reached town and got obstructed by traffic lights. The lights did not annoy Bennett—we were in no hurry—but they did break up the driving, the kinetic melody, the swift, smooth stream of action, with its power to integrate mind and brain. The transition was very sudden: one minute, all was smoothness and action; the next, all was broken-upness, pandemonium, riot. When Bennett was driving smoothly, one had the feeling not that the Tourette's was in any way being suppressed but that the brain and the mind were in a quite different mode of action.

Another few minutes, and we had arrived at his house, a charming, idiosyncratic house with a wild garden, perched on a hill overlooking the town. Bennett's dogs, rather wolflike, with strange, pale eyes, barked, wagged their tails, bounded up to us as we drove in. As we got out of the car, he said “Hi, puppies!” in the same quick, odd, high, crushed voice he had earlier used for “Hi, Patty!” He patted their heads, a ticklike, convulsive patting, a quick-fire volley of five pats to each, delivered with a meticulous symmetry and synchrony. “They're grand dogs, half-Eskimo, half-malamute,” he said. “I felt I should get two of them, so they could companion each other. They play together, sleep together, hunt together—everything.” And, I thought, are patted together: Did he get two dogs partly because of his own symmetrical, symmetrizing compulsions? Now, hearing the dogs bark, his sons ran out—two handsome teenage kids. I had a sudden feeling that Bennett might cry “Hi, kiddies!” in his Touretty voice and pat their heads, too, in synchrony, symmetrically. But he introduced them, Mark and David, individually to me. And then, as we entered the house, he introduced me to his wife, Helen, who was preparing a late-afternoon tea for all of us.

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.
³²

“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 feeling 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.
³³
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.”
³⁴

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.