In 1885 Gilles de la Tourette, a pupil of Charcot, described the astonishing syndrome which now bears his name. 'Tourette's syndrome', as it was immediately dubbed, is characterised by an excess of nervous energy, and a great production and extravagance of strange motions and notions: tics, jerks, mannerisms, grimaces, noises, curses, involuntary imitations and compulsions of all sorts, with an odd elfin humour and a tendency to antic and outlandish kinds of play. In its 'highest' forms, Tourette's syndrome involves every aspect of the affective, the instinctual and the imaginative life; in its 'lower', and perhaps commoner, forms, there may be little more than abnormal movements and impulsivity, though even here there is an element of strangeness. It was well recognized and extensively reported in the closing years of the last century. It was clear to Tourette, and his peers, that this syndrome was a sort of possession by primitive impulses and urges: but also that it was a possession with an organic basis - a very definite (if undiscovered) neurological disorder. When I first saw Ray he was 24 years old, and almost incapacitated by multiple tics of extreme violence coming in volleys every few seconds. He had been subject to these since the age of four and severely stigmatized by the attention they aroused, though his high intelligence, his wit, his strength of character and sense of reality enabled him to pass successfully through school and college, and to be valued and loved by a few friends and his wife. Since leaving college, however, he had been fired from a dozen jobs-always because of tics, never for incompetence-was continually in crises of one sort and another, usually caused by his impatience, his pugnacity, and his coarse, brilliant 'chutzpah', and had found his marriage threatened by involuntary cries of 'Fuck!' 'Shit!', and so on, which would burst from him at times of sexual excitement. He was (like many Touretters) remarkably musical, and could scarcely have survived-emotionally or economically. had he not been a weekend jazz drummer of real virtuosity, famous for his sudden and wild extemporisations, which would arise from a tic or a compulsive hitting of a drum and would instantly be made the nucleus of a wild and wonderful improvisation, so that the 'sudden intruder' would be turned to brilliant advantage. His Tourette's was also of advantage in various games, especially ping-pong, at which he excelled, partly in consequence of his abnormal quickness of reflex and reaction, but especially, again, because of 'improvisations', 'very sudden, nervous, frivolous shots' (in his own words), which were so unexpected and startling as to be virtually unanswerable. The only time he was free from tics was in his sleep; or when he swam or sang, or worked, evenly and rhythmically, and found 'a kinetic melody', a play, which was tension-free, tic-free and free. Under an ebullient, eruptive, clownish surface, he was a deeply serious man-and a man in despair. He had never heard of the TSA (which, indeed, scarcely existed at the time), nor had he. heard of Haldol. He had diagnosed himself as having Tourette's after reading the article on 'Tics' in the Washington Post. When I confirmed the diagnosis,and spoke of using Haldol, he was excited but cautious. I made a test of Haldol by injection, and he proved extraordinarily sensitive to it, becoming virtually tic-free for a period of two hours after I had administered no more than one-eighth of a milligram. After this auspicious trial, I started him on Haldol, prescribing a dose of a quarter of a milligram three times a day.
He came back, the following week, with a black eye and a broken nose and said: “So much for your fucking Haldol.” Even this minute dose, he said, had thrown him off-balance, interfered with his speed, his timing, his preternaturally quick reflexes. Like many Touretters, he was attracted to spinning things, and to revolving doors in particular, which he would dodge in and out of like lightning: he had lost this knack on the Haldol, had mistimed his movements, and had been bashed on the nose. Further, many of his tics, far from disappearing, had simply become slow, and enormously extended: he might get 'transfixed in mid-tic', as he put it, and find himself in almost catatonic postures. He was understandably discouraged by this experience - and this thought - and also by another thought which he now expressed. “Suppose you could take away the tics,” he said. “What would be left? I consist of tics-there is nothing else.” He seemed, at least jokingly, to have little sense of his identity except as a ticqueur: he called himself “the ticcer of President's Broadway,” and spoke of himself, in the third person, as “witty ticcy Ray,” adding that he was so prone to “ticcy witticisms and witty ticcicisms” that he scarcely knew whether it was a gift or a curse. He said he could not imagine life without Tourette's, nor was he sure he would care for it. I was strongly reminded, at this point, of what I had encountered in some of my patients. I had observed in that such extreme physiological sensitivities and instabilities. might be transcended if it were possible for the patient to lead a rich and full life: that the “existential” balance, or poise, of such a life might overcome a severe physiological imbalance. Feeling that Ray also had such possibilities in him, that, despite his own words, he was not incorrigibly centred on his own disease, in an exhibitionistic or narcissistic way, I suggested that we meet weekly for a period of three months. During this time we would try to imagine life without Tourette's; we would explore (if only in thought and feeling) how much life could offer, could offer him, without the perverse attractions and attentions of Tourette's; we would examine the role and importance of Tourette's to him, and how he might get on without these. We would explore all this for three months-and then make another trial of Haldol. There followed three months of deep and patient exploration, in which (often against much resistance and spite and lack of faith' in self and life) all sorts of healthy and human potentials came to light: potentials which had somehow survived twenty years of severe Tourette's and 'Touretty' life, hidden in the deepest and strongest core of the personality. This deep exploration was exciting and encouraging in itself and gave us, at least, a limited hope. What in fact happened exceeded all our expectations. For when I again tried Ray on Haldol in the same minute dose as before, he now found himself tic-free, but without significant ill-effects - and he has remained this way for the past nine years. The effects of Haldol, here, were “miraculous” - but only became so when a miracle was allowed. Its initial effects were close to catastrophic: partly, no doubt, on a physiological basis; but also because any 'cure', or relinquishing of Tourette's, at this time would have been premature. Having had Tourette's since the age of four, Ray had no experience of any normal life: he was heavily dependent on his exotic disease and, not unnaturally, employed and exploited it in various ways. He had not been ready to give up his Tourette's and (I cannot help thinking) might never have been ready without those three months of intense preparation, of tremendously hard and concentrated deep analysis and thought.
The past nine years, on the whole, have been happy ones for Ray ~ a liberation beyond any possible expectation. After twenty years of being confined by Tourette's, he enjoys a freedom he would never have thought possible. His marriage is tender and stable - and he is now a father as well; he has many good friends, who love and value him as a person - and not simply as an accomplished Tourettic clown; he plays an important part in his local community; and he holds a responsible position at work. Yet problems remain: problems perhaps inseparable from having Tourette's - and Haldol. During his working hours, and working week, Ray remains “sober, solid, square” on Haldol - this is how he describes his “Haldol self.” He is slow and deliberate in his movements and judgments, with none of the impatience, the impetuosity, he showed before Haldol, but equally, none of the wild improvisations and inspirations. Even his dreams are different in quality: “straight wish-fulfilment,” he says, “with none of the elaborations, the extravaganzas, of Tourette's.” He is less sharp, less quick in repartee, no longer bubbling with witty tics or ticcy wit. He no longer enjoys or excels at ping-pong or other games; he no longer feels “that urgent killer instinct, the instinct to win, to beat the other man”; he is less competitive, then, and also less playful; and he has lost the impulse, or the knack, of sudden frivolous moves which take everyone by surprise. He has lost his obscenities, his coarse chutzpah, his spunk. He has come to feel, increasingly, that something is missing. Most important, and disabling, because this was vital for him as a means of both support and self-expression - he found that on Haldol he was musically “dull”, average, competent, but lacking energy, enthusiasm, extravagance and joy. He no longer had tics or compulsive hitting of the drums - but he no longer had wild and creative surges. As this pattern became clear to him, and after discussing it with me, Ray made a momentous decision: he would take Haldol “dutifully” throughout the working week, but would take himself off it, and “let fly”, at weekends. This he has done for the past three years. So now there are two Rays -on and off Haldol. There is the sober citizen, the calm deliberator, from Monday to Friday; and there is “witty ticcy Ray”, frivolous, frenetic, inspired, at weekends. It is a strange situation, as Ray is the first to admit:
Having Tourette's is wild, like being drunk all the while. Being on Haldol is dull, makes one square and sober, and neither state is really free. You normals, who have the right transmitters in the right places at the right times in your brains, have all feelings, all styles, available all the time - gravity, levity, whatever is appropriate. We Touretters don't: we are forced into levity by our Tourette's and forced into gravity when we take Haldol. You are free, you have a natural balance: we must make the best of an artificial balance.
Ray does make the best of it, and has a full life, despite Tourette's, despite Haldol, despite the unfreedom, despite being deprived of that birthright of natural freedom which most of us enjoy. But he has been taught by his sickness and, in a way, he has transcended it. He would say, with Nietzsche: “I have traversed many kinds of health, and keep traversing them. And as for sickness: are we not almost tempted to ask whether we could get along without it? Only great pain is the ultimate liberator of the spirit.” Ray has achieved what Nietzsche liked to call The Great Health - rare humour, valour, and resilience of spirit: despite being, or because he is, afflicted with Tourette's.
Nº 133, quarta-feira, 14 de julho de 2010 PORTARIA No- 219, DE 13 DE JULHO DE 2010 I - formação generalista, humanista, crítica e reflexiva, ca-Art. 8º A prova do Enade 2010 terá, em seu componentepacitado a atuar em todos os níveis de atenção à saúde, com base noespecífico da área de Fisioterapia, 30 (trinta) questões, sendo 3 (três)A Presidente, Substituta, do Instituto N