Greg’s use of the present tense, or the near-present tense; his sense of all these events, not as far distant, much less as terminated, but as having taken place “a year ago, maybe” (and, by implication, likely to take place again, at any time); all this, which seemed so pathological, so anachronistic in clinical testing, seemed almost normal, natural, now that we were part of this sixties crowd sweeping toward the Garden.
Inside the Garden we found the special place reserved for Greg’s wheelchair near the soundboard. And now Greg was growing more excited by the minute; the roar of the crowd excited him—“It’s like a giant animal”, he said—and the sweet, hash-laden air. “What a great smell”, he said, inhaling deeply. “It’s the least stupid smell in the world.” 51
51. Jean Cocteau, in fact, said this of opium. Whether Greg was quoting this, consciously or unconsciously, I do not know. Smells are sometimes even more evocative than music; and the percepts of smells, generated in a very primitive part of the brain—the “smell brain”, or rhinencephalon—may not go through the complex, multistage memory systems of the medial temporal lobe. Olfactory memories, neurally, are almost indelible; thus they may be remembered despite an amnesia. It would be fascinating to bring Greg hot pretzels, or hash, to see whether their smells could evoke memories of the concert. He himself, the next day, spontaneously mentioned the “great” smell of pretzels—it was very vivid for him—and yet he could not locate the smell in place or time.
As the band came onstage, and the noise of the crowd grew greater, Greg was transported by the excitement and started clapping loudly and shouting in an enormous voice, “Bravo! Bravo!” then “Let’s go!” followed by “Let’s go, Hypo”, followed, homophonously, by “Ro, Ro, Ro, Harry-Bo.” Pausing a moment, Greg said to me, “See the tombstone behind the drums? See Jerry Garcia’s Afro?” with such conviction that I was momentarily taken in and looked (in vain) for a tombstone behind the drums—before realizing it was one of Greg’s confabulations—and at the now-grey hair of Jerry Garcia, which fell in a straight, unhindered descent to his shoulders.
And then, “Pigpen!” Greg exclaimed, “You see Pigpen there?”
“No”, I replied, hesitantly, not knowing how to reply. “He’s not there—You see, he’s not with the Dead anymore.”
“Not with them?” said Greg, in astonishment. “What happened—he got busted or something?”
“No, Greg, not busted. He died.”
“That’s awful”, Greg answered, shaking his head, shocked. And then a minute later, he nudged me again. “Pigpen! You see Pigpen there?” And, word for word, the whole conversation repeated itself.
But then the thumping, pounding excitement of the crowd got him—the rhythmic clapping and stamping and chanting possessed him—and he started to chant, “The Dead! The Dead!” then with a shift of rhythm, and a slow emphasis on each word, “We want the Dead!” And then, “Tobacco Road, Tobacco Road”, the name of one of his favorite songs, until the music began.
The band began with an old song, “Iko, Iko”, and Greg joined in with gusto, with abandon, clearly knowing all the words, and especially luxuriating in the African-sounding chorus. The whole vast Garden now was in motion with the music, eighteen thousand people responding together, everyone transported, every nervous system synchronized, in unison.
The first half of the concert had many earlier pieces, songs from the sixties, and Greg knew them, loved them, joined in. His energy and joy were amazing to see; he clapped and sang nonstop, with none of the weakness and fatigue he generally showed. He showed a rare and wonderful continuity of attention, everything orienting him, holding him together. Looking at Greg transformed in this way, I could see no trace of his amnesia, his frontal lobe syndrome—he seemed at this moment completely normal, as if the music was infusing him with its own strength, its coherence, its spirit.
I had wondered whether we should leave at the break midway through the concert—he was, after all, a disabled, wheelchair-bound patient, who had not really been out on the town, at a rock concert, for more than twenty years. But he said, “No, I want to stay, I want it all”—an assertion, an autonomy, I rejoiced to see and had hardly ever seen in his compliant life at the hospital. So we stayed, and in the interval went backstage, where Greg had a large hot pretzel and then met Mickey Hart and exchanged a few words with him. He had looked a little tired and pale before, but now he was flushed, excited by the encounter, charged and eager to be back for more music.
But the second half of the concert was somewhat strange for Greg: more of the songs dated from the mid—or late seventies and had lyrics that were unknown to him, though they were familiar in style. He enjoyed these, clapping and singing along wordlessly, or making up words as he went. But then there were newer songs, radically different, like “Picasso Moon”, with dark and deep harmonies and an electronic instrumentation such as would have been impossible, unimaginable, in the 1960s. Greg was intrigued, but deeply puzzled. “It’s weird stuff”, he said, “I never heard anything like it before.” He listened intently, all his musical senses stirred, but with a slightly scared and bewildered look, as if seeing a new animal, a new plant, a new world, for the first time. “I guess it’s some new, experimental stuff”, he said, “something they never played before. Sounds futuristic—maybe it’s the music of the future.” The newer songs he heard went far beyond any development that he could have imagined, were so beyond and in some ways so unlike what he associated with the Dead, that it “blew his mind.” It was, he could not doubt, “their” music he was hearing, but it gave him an almost unbearable sense of hearing the future—as late Beethoven would have struck a devotee if it had been played at a concert in 1800.
“That was fantastic”, he said, as we filed out of the Garden. “I will always remember it. I had the time of my life.” I played CDs of the Grateful Dead in the car on the way home, to hold as long as possible the mood and memory of the concert. I feared that if I stopped playing the Dead, or talking about them, for a single moment, all memory of the concert would go from his mind. Greg sang along enthusiastically all the way back, and when we parted at the hospital, he was still in an exuberant concert mood.
But the next morning when I came to the hospital early, I found Greg in the dining room, alone, facing the wall. I asked him about the Grateful Dead—what did he think of them? “Great group”, he said, “I love them. I heard them in Central Park and at the Fillmore East.”
“Yes”, I said, “you told me. But have you seen them since? Didn’t you just hear them at Madison Square Garden?”
“No”, he said, “I’ve never been to the Garden.” 52
52. Greg has no recollection of the concert, seemingly—but when I was sent a tape of it, he immediately recognized some of the “new” pieces, found them familiar, was able to sing them. “Where did you hear that? ” I asked as we listened to “Picasso Moon.”
He shrugged uncertainly. But there is no doubt that he has learned it, nonetheless. I have taken now to visiting him regularly, with tapes of our concert and of the latest Grateful Dead concerts. He seems to enjoy the visits and has learned many of the new songs. And now, whenever I arrive, and he hears my voice, he lights up, and greets me as a fellow Deadhead.
3. 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 Georges 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 dreamlike 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. 53
53. A further four surfaced (one an ophthalmic surgeon) following the original publication of this piece. In addition to these Tourettic surgeons, I now know of three Tourettic internists, two Tourettic neurologists, but only one Tourettic psychiatrist.
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 gray, 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 cathonic 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 its 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 these, 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, that 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.) 54
54. Tics can have an ambiguous status, partway between meaningless jerks or noises and meaningful acts. Though the tendency to tic is innate in Tourette’s, the particular form of tics often has a personal or historical origin. Thus a name, a sound, a visual image, a gesture, perhaps seen years before and forgotten, may first be unconsciously echoed or imitated and then preserved in the stereotypic form of a tic. Such tics are like hieroglyphic, petrified residues of the past and may indeed, with the passage of time, become so hieroglyphic, so abbreviated, as to become unintelligible (as “God be with you” was condensed, collapsed, after centuries, to the phonetically similar but meaningless “goodbye”). One such patient, whom I saw long ago, kept making an explosive, guttural, trisyllabic noise, which revealed itself, on analysis, as a very accelerated, crushed rendering of “Verboten!” in a convulsive parody of his father’s constantly forbidding German voice.
A recent correspondent, a woman with Tourette’s, after reading an earlier version of this piece, wrote that “ ‘enshrinement’—is the perfect word to describe the interplay between life and tics—the process by which the former gets incorporated into the latter—It is almost as if the Tourettic body becomes an expressive archive—albeit jumbled—of one’s life experience.”
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—b
ut 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 ticlike, 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.