The man who mistook his wife for a hat

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The man who mistook his wife for a hat Page 23

by Oliver Sacks


  My friend and colleague Isabelle Rapin had actually seen Jose years before, when he was presented with 'intractable seizures' in the child neurology clinic-and she, with her great experience, did not doubt that he was 'autistic'. Of autism in general she had written:

  A small number of autistic children are exceedingly proficient at decoding written language and become hyperlexic or preoccupied with numbers . . . Extraordinary proficiencies of some autistic children for putting together puzzles, taking apart mechanical toys, or decoding written texts may reflect the consequences of attention and learning being inordinately focused on non-verbal visual-spatial tasks to the exclusion of, or perhaps because of, the lack of demand for learning verbal skills. (1982, pp. 146-50)

  Somewhat similar observations, specifically about drawing, are made by Lorna Selfe in her astonishing book Nadia (1978). All idiot savant or autistic proficiencies and performances, Dr Selfe gathered from the literature, were apparently based on calculation and memory alone, never on anything imaginative or personal. And if these children could draw-supposedly a very rare occurrence-their drawings too were merely mechanical. 'Isolated islands of proficiency' and 'splinter skills' are spoken of in the literature. No allowance is made for an individual, let alone a creative, personality.

  What then was Jose, I had to ask myself. What sort of being? What went on inside him? How had he arrived at the state he was in? And what state was it-and might anything be done?

  I was both assisted and bewildered by the available information-the mass of 'data' that had been gathered since the first onset of his strange illness, his 'state'. I had a lengthy chart available to me, containing early descriptions of his original illness: a very high fever at the age of eight, associated with the onset of incessant, and subsequently continuing, seizures, and the rapid appearance of a brain-damaged or autistic condition. (There had been doubt from the start about what, exactly, was going on.)

  His spinal fluid had been abnormal during the acute stage of the illness. The consensus was that he had probably suffered an encephalitis of sorts. His seizures were of many different types- petit mal, grand mal, 'akinetic', and 'psychomotor', these last being seizures of an exceptionally complex type.

  Psychomotor seizures can also be associated with sudden passion and violence, and the occurrence of peculiar behaviour-states even between seizures (the so-called psychomotor personality). They are invariably associated with disorder in, or damage to, the temporal lobes, and severe temporal-lobe disorder, both left-sided and right-sided, had been demonstrated in Jose by innumerable EEGs.

  The temporal lobes are also associated with the auditory capacities, and, in particular, the perception and production of speech. Dr Rapin had not only considered Jose 'autistic', but had wondered whether a temporal-lobe disorder had caused a 'verbal auditory agnosia'-an inability to recognise speech sounds that interfered with his capacity to use or understand the spoken word. For what was striking, however it was to be interpreted (and both psychiatric and neurological interpretations were offered), was the loss or regression of speech, so that Jose, previously 'normal' (or so his parents avowed), became 'mute', and ceased talking to others when he became ill.

  One capacity was apparently 'spared'-perhaps in a compensatory way enhanced: an unusual passion and power to draw, which had been evident since early childhood, and seemed to some extent hereditary or familial, for his father had always been fond of

  sketching, and his (much) older brother was a successful artist. With the onset of his illness; with his seemingly intractable seizures (he might have twenty or thirty major convulsions a day, and uncounted 'little seizures', falls, 'blanks', or 'dreamy states'); with the loss of speech and his general intellectual and emotional 'regression', Jose found himself in a strange and tragic state. His schooling was discontinued, though a private tutor was provided for a while, and he was returned permanently to his family, as a 'fulltime' epileptic, autistic, perhaps aphasic, retarded child. He was considered ineducable, untreatable and generally hopeless. At the age of nine, he 'dropped out'-out of school, out of society, out of almost all of what for a normal child would be 'reality'.

  For fifteen years he scarcely emerged from the house, ostensibly because of'intractable seizures', his mother maintaining she dared not take him out, otherwise he would have twenty or thirty seizures in the street every day. All sorts of anticonvulsants were tried, but his epilepsy seemed 'untreatable': this, at least, was the stated opinion in his chart. There were older brothers and sisters, but Jose was much the youngest-the 'big baby' of a woman approaching fifty.

  We have far too little information about these intervening years. Jose, in effect, disappeared from the world, was 'lost to follow-up', not only medically but generally, and might have been lost forever, confined and convulsing in his cellar room, had he not 'blown up' violently very recently and been taken to the hospital for the first time. He was not entirely without inner life, in the cellar. He showed a passion for pictorial magazines, especially of natural history, of the National Geographic type, and when he was able, between seizures and scoldings, would find stumps of pencil and draw what he saw.

  These drawings were perhaps his only link with the outside world, and especially the world of animals and plants, of nature, which he had so loved as a child, especially when he went out sketching with his father. This, and this only, he was permitted to retain, his one remaining link with reality.

  This, then, was the tale I received, or, rather, put together from his chart or charts, documents as remarkable for what they lacked

  as for what they contained-the documentation, through default, of a fifteen-year 'gap': from a social worker who had visited the house, taken an interest in him, but could do nothing; and from his now aged and ailing parents as well. But none of this would have come to light had there not been a rage of sudden, unprecedented, and frightening violence-a fit in which objects were smashed-which brought Jose to a state hospital for the first time.

  It was far from clear what had caused this rage, whether it was an eruption of epileptic violence (such as one may see, on rare occasions, with very severe temporal-lobe seizures), or whether it was, in the simplistic terms of his admission note, simply 'a psychosis', or whether it represented some final, desperate call for help, from a tortured soul who was mute and had no direct way of expressing his predicament, his needs.

  What was clear was that coming to the hospital and having his seizures 'controlled' by powerful new drugs, for the first time, gave him some space and freedom, a 'release', both physiological and psychological, of a sort he had not known since the age of eight.

  Hospitals, state hospitals, are often seen as 'total institutions' in Erving Goffman's sense, geared mainly to the degradation of patients. Doubtless this happens, and on a vast scale. But they may also be 'asylums' in the best sense of the word, a sense perhaps scarcely allowed by Goffman: places that provide a refuge for the tormented, storm-tossed soul, provide it with just that mixture of order and freedom of which it stands in such need. Jose had suffered from confusion and chaos-partly organic epilepsy, partly the disorder of his life-and from confinement and bondage, also both epileptic and existential. Hospital was good for Jose, perhaps lifesaving, at this point in his life, and there is no doubt that he himself felt this fully.

  Suddenly too, after the moral closeness, the febrile intimacy of his house, he now found others, found a world, both 'professional' and concerned: unjudging, unmoralistic, unaccusing, detached, but at the same time with a real feeling both for him and for his problems. At this point, therefore (he had now been in hospital for four weeks), he started to have hope; to become more animated,

  to turn to others as he had never done before-not, at least, since the onset of autism, when he was eight.

  But hope, turning to others, interaction, was 'forbidden', and no doubt frighteningly complex and 'dangerous' as well. Jose had lived for fifteen years in a guarded, closed
world-in what Bruno Bettelheim in his book on autism called the 'empty fortress'. But it was not, it had never been, for him, entirely empty; there had always been his love for nature, for animals and plants. This part of him, this door, had always remained open. But now there was temptation, and pressure, to 'interact', pressure that was often too much, came too soon. And precisely at such time Jose would 'relapse', would turn again, as if for comfort and security, to the isolation, to the primitive rocking movements, he had at first shown.

  The third time I saw Jose, I did not send for him in the clinic, but went up, without warning, to the admission ward. He was sitting, rocking, in the frightful day room, his face and eyes closed, a picture of regression. I had a qualm of horror when I saw him like this, for I had imagined, had indulged, the notion of 'a steady recovery'. I had to see Jose in a regressed condition (as I was to do again and again) to see that there was no simple 'awakening' for him, but a path fraught with a sense of danger, double jeopardy, terrifying as well as exciting-because he had come to love his prison bars.

  As soon as I called him, he jumped up, and eagerly, hungrily, followed me to the art room. Once more I took a fine pen from my pocket, for he seemed to have an aversion to crayons, which was all they used on the ward. 'That fish you drew,' I hinted it with a gesture in the air, not knowing how much of my words he might understand, 'that fish, can you remember it, can you draw it again?' He nodded eagerly, and took the pen from my hands. It was three weeks since he had seen it. What would he draw now?

  He closed his eyes for a moment-summoning an image?- and then drew. It was still a trout, rainbow-spotted, with fringy fins and a forked tail, but, this time, with egregiously human features, an odd nostril (what fish has nostrils?), and a pair of ripely human lips. I was about to take the pen, but, no, he was not finished. What had he in mind? The image was complete. The

  image, perhaps, but not the scene. The fish before had existed- as an icon-in isolation: now it was to become part of a world, a scene. Rapidly he sketched in a little fish, a companion, swooping into the water, gambolling, obviously in play. And then the surface of the water was sketched in, rising to a sudden, tumultuous wave. As he drew the wave, he became excited, and emitted a strange, mysterious cry.

  I couldn't avoid the feeling, perhaps a facile one, that this drawing was symbolic-the little fish and the big fish, perhaps him and me? But what was so important and exciting was the spontaneous representation, the impulse, not my suggestion, entirely from himself, to introduce this new element-a living interplay in what he drew. In his drawings as in his life hitherto, interaction had always been absent. Now, if only in play, in symbol, it was allowed back. Or was it? What was that angry, avenging wave?

  Best to go back to safe ground, I felt; no more free association. I had seen potential, but I had seen, and heard, danger too. Back to safe, Edenic, prelapsarian Mother Nature. I found a Christmas card lying on the table, a robin redbreast on a tree trunk, snow and stark twigs all around. I gestured to the bird, and gave Jose

  the pen. The bird was finely drawn, and he used a red pen for the breast. The feet were somewhat taloned, grasping the bark (I was struck, here and later, by his need to emphasise the grasping power of hands and feet, to make contact sure, almost gripping, obsessed). But-what was happening?-the dry winter twiglet, next to the tree trunk, had shot up in his drawing, expanded into florid open bloom. There were other things that were perhaps symbolic, although I could not be sure. But the salient and exciting and most significant transformation was this: that Jose had changed winter into spring.

  Now, finally, he started to speak-though 'speak' is much too strong a term for the strange-sounding, stumbling, largely unintelligible utterances that came out, on occasion startling him as much as they startled us-for all of us, Jose included, had regarded him as wholly and incorrigibly mute, whether from incapacity, indisposition, or both (there had been the attitude, as well as the fact, of not speaking). And here, too, we found it impossible to say how much was 'organic', how much was a matter of 'motivation'. We had reduced, though not annulled, his temporal-lobe disorders-his electro-encephalograms (EEGs) were never normal; they still showed in these lobes a sort of low-grade electrical muttering, occasional spikes, dysrhythmia, slow waves. But they were immensely improved compared with what they were when he came in. If he could remove their convulsiveness, he could not reverse the damage they had sustained.

  We had improved, it could not be doubted, his physiological potentials for speech, though there was an impairment of his abilities to use, understand, and recognise speech, with which, doubtless, he would always have to contend, But, equally important, he now was fighting for the recovery of his understanding and speech (egged on by all of us, and guided by the speech therapist in particular), where previously he had accepted it, hopelessly or masochistically, and indeed had turned against virtually all communication with others, verbal and otherwise. Speech impairment and the refusal to speak had coupled before in the double malignancy of disease; now, recovery of speech and attempts to speak

  were being happily coupled in the double benignity of beginning to get well. Even to the most sanguine of us it was very apparent that Jose would never speak with any facility approaching normal, that speech could never, for him, be a real vehicle for self-expres-

  sion, could serve only to express his simpler needs. And he himself seemed to feel this too and, while he continued to fight for speech, turned more fiercely to drawing for self-expression.

  One final episode. Jose had been moved off the frenzied admission ward to a calmer, quieter special ward, more homelike, less prisonlike, than the rest of the hospital: a ward with an exceptional number and quality of staff, designed especially, as Bet-

  telheim would say, as 'a home for the heart', for patients with autism who seem to require a kind of loving and dedicated attention that few hospitals can give. When I went up to this new ward, he waved his hand lustily as soon as he saw me-an outgoing, open gesture. I could not imagine him having done this before. He pointed to the locked door, he wanted it open, he wanted to go outside.

  He led the way downstairs, outside, into the overgrown, sunlit garden. So far as I could learn, he had not, voluntarily, gone outside since he was eight, since the very start of his illness and withdrawal. Nor did I have to offer him a pen-he took one himself. We walked around the hospital grounds, Jose sometimes gazing at the sky and trees, but more often down at his feet, at the mauve and yellow carpet of clover and dandelions beneath us. He had a very quick eye for plant forms and colours, rapidly saw and picked a rare white clover, and found a still rarer four-leaved one. He found seven different types of grass, no less, seemed to recognise, to greet, each one as a friend. He was delighted most of all by the great yellow dandelions, open, all their florets flung open to the sun. This was his plant-it was how he felt, and to show his feeling he would draw it. The need to draw, to pay graphic reverence, was immediate and strong: he knelt down, placed his clipboard on the ground, and, holding the dandelion, drew it.

  This, I think, is the first drawing from real life that Jose had done since his father took him sketching as a child, before he became ill. It is a splendid drawing, accurate and alive. It shows his love for reality, for another form of life. It is, to my mind, rather similar to, and not inferior to, the fine vivid flowers one finds in medieval botanies and herbals-fastidiously, botanically exact, even though Jose has no formal knowledge of botany, and could not be taught it or understand it if he tried. His mind is not built for the abstract, the conceptual. That is not available to him as a path to truth. But he has a passion and a real power for the particular-he loves it, he enters into it, he re-creates it. And the particular, if one is particular enough, is also a road-one might say nature's road-to reality and truth.

  The abstract, the categorical, has no interest for the autistic

  person-the concrete, the particular, the singular, is all. Whether this is a question of capac
ity or disposition, it is strikingly the case. Lacking, or indisposed to, the general, the autistic seem to compose their world picture entirely of particulars. Thus they live, not in a universe, but in what William James called a 'multiverse', of innumerable, exact, and passionately intense particulars. It is a mode of mind at the opposite extreme from the generalising, the scientific, but still 'real', equally real, in a quite different way. Such a mind has been imagined in Borges's story Tunes the Me-morious' (so like Luria's Mnemonist):

  He was, let us not forget, almost incapable of ideas of a general, Platonic sort … In the teeming world of Funes, there were only details, almost immediate in their presence . . . No one . . . has felt the heat and pressure of a reality as indefatigable as that which day and night converged upon the hapless Ireneo.

  As for Borges's Ireneo, so for Jose. But it is not necessarily a

  hapless circumstance: there may be a deep satisfaction in particulars, especially if they shine, as they may do for Jose, with an emblematic radiance.

  I think Jose, an autist, a simpleton too, has such a gift for the concrete, for form, that he is, in his way, a naturalist and natural artist. He grasps the world as forms-directly and intensely felt forms-and reproduces them. He has fine literal powers, but he has figurative powers too. He can draw a flower or fish with remarkable accuracy, but he can also make one which is a personification, an emblem, a dream, or a joke. And the autistic are supposed to lack imagination, playfulness, art!

  Creatures like Jose are not supposed to exist. Autistic child-artists like 'Nadia' were not supposed to exist. Are they indeed so rare, or are they overlooked? Nigel Dennis, in a brilliant essay on Nadia in the New York Review of Books (4 May 1978), wonders how many of the world's 'Nadias' may be dismissed or overlooked, their remarkable productions crumpled up and consigned to the trash can, or simply, like Jose, treated without thought, as an odd talent, isolated, irrelevant, of no interest. But the autistic artist or (to be less lofty) the autistic imagination is by no means rare. I have seen a dozen examples of it in as many years, and this without making any particular effort to find them.

 

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