The man who mistook his wife for a hat (9 page)

   not feel. She had learned to operate-but how did she feel? Had the substitutions dispersed the disembodied sense she first spoke of?

   The answer is-not in the least. She continues to feel, with the continuing loss of proprioception, that her body is dead, not-real, not-hers-she cannot appropriate it to herself. She can find no words for this state, and can only use analogies derived from other senses: 'I feel my body is blind and deaf to itself … it has no sense of itself-these are her own words. She has no words, no direct words, to describe this bereftness, this sensory darkness (or silence) akin to blindness or deafness. She has no words, and we lack words too. And society lacks words, and sympathy, for such states. The blind, at least, are treated with solicitude-we can imagine their state, and we treat them accordingly. But when Christina, painfully, clumsily, mounts a bus, she receives nothing but uncomprehending and angry snarls: 'What's wrong with you, lady? Are you blind-or blind-drunk?' What can she answer-'I have no proprioception'? The lack of social support and sympathy is an additional trial: disabled, but with the nature of her disability not clear-she is not, after all, manifestly blind or paralysed, manifestly anything-she tends to be treated as a phoney or a fool. This is what happens to those with disorders of the hidden senses (it happens also to patients who have vestibular impairment, or who have been labyrinthectomised).

   Christina is condemned to live in an indescribable, unimaginable realm-though 'non-realm', 'nothingness', might be better words for it. At times she breaks down-not in public, but with me: 'If only I could
feel!'
she cries. 'But I've forgotten what it's like … I
was
normal, wasn't I? I
did
move like everyone else?'

   'Yes, of course.'

   'There's no "of course". I can't believe it. I want proof.'

   I show her a home movie of herself with her children, taken just a few weeks before her polyneuritis.

   'Yes, of course, that's me!' Christina smiles, and then cries: 'But I can't identify with that graceful girl any more! She's gone, I can't remember her,
Icant even imagine her.
It's like something's been scooped right out of me, right at the centre . . . that's what they

   do with frogs, isn't it? They scoop out the centre, the spinal cord, they
pith
them . . . That's what I am,
pithed,
like a frog . . . Step up, come and see Chris, the first pithed human being. She's no proprioception, no sense of herself-disembodied Chris, the pithed girl!' She laughs wildly, with an edge of hysteria. I calm her- 'Come now!'-while thinking, 'Is she right?'

   For, in some sense, she
is
'pithed', disembodied, a sort of wraith. She has lost, with her sense of proprioception, the fundamental, organic mooring of identity-at least of that corporeal identity, or 'body-ego', which Freud sees as the basis of self: 'The ego is first and foremost a body-ego.' Some such depersonalisation or de-realisation must always occur, when there are deep disturbances of body perception or body image. Weir Mitchell saw this, and incomparably described it, when he was working with amputees and nerve-damaged patients in the American Civil War-and in a famous, quasi-fictionalised account, but still the best, phenom-enologically most accurate, account we have, said (through the mouth of his physician-patient, George Dedlow):

   'I found to my horror that at times I was less conscious of myself, of my own existence, than used to be the case. This sensation was so novel that at first it quite bewildered me. I felt like asking someone constantly if I were really George Dedlow or not; but, well aware of how absurd I should seem after such a question, I refrained from speaking of my case, and strove more keenly to analyse my feelings. At times the conviction of my want of being myself was overwhelming and most painful. It was, as well as I can describe it, a deficiency in the egoistic sentiment of individuality.'

   For Christina there is this general feeling-this 'deficiency in the egoistic sentiment of individuality'-which has become less with accommodation, with the passage of time. And there is this specific, organically based, feeling of disembodiedness, which remains as severe, and uncanny, as the day she first felt it. This is also felt, for example, by those who have high transections of the spinal cord-but they of course, are paralysed; whereas Christina, though 'bodiless', is up and about.

   There are brief, partial reprieves, when her skin is stimulated. She goes out when she can, she loves open cars, where she can feel the wind on her body and face (superficial sensation, light touch, is only slightly impaired). 'It's wonderful,' she says. 'I feel the wind on my arms and face, and then I know, faintly, I
have
arms and a face. It's not the real thing, but it's something-it lifts this horrible, dead veil for a while.'

   But her situation is, and remains, a 'Wittgensteinian' one. She does not know 'Here is one hand'-her loss of proprioception, her de-afferentation, has deprived her of her existential, her epistemic, basis-and nothing she can do, or think, will alter this fact. She cannot be certain of her body-what would Wittgenstein have said, in her position?

   In an extraordinary way, she has both succeeded and failed. She has succeeded in operating, but not in being. She has succeeded to an almost incredible extent in all the accommodations that will, courage, tenacity, independence and the plasticity of the senses and the nervous system will permit. She has faced, she faces, an unprecedented situation, has battled against unimaginable difficulties and odds, and has survived as an indomitable, impressive human being. She is one of those unsung heroes, or heroines, of neurological affliction.

   But still and forever she remains defective and defeated. Not all the spirit and ingenuity in the world, not all the substitutions or compensations the nervous system allows, can alter in the least her continuing and absolute loss of proprioception-that vital sixth sense without which a body must remain unreal, unpossessed.

   Poor Christina is 'pithed' in 1985 as she was eight years ago and will remain so for the rest of her life. Her life is unprecedented. She is, so far as I know, the first of her kind, the first 'disembodied' human being.

   
Postscript

   Now Christina has company of a sort. I understand from Dr H.H. Schaumburg, who is the first to describe the syndrome, that large numbers of patients are turning up everywhere now with severe

   sensory neuronopathies. The worst affected have body-image disturbances like Christina. Most of them are health faddists, or are on a megavitamin craze, and have been taking enormous quantities of vitamin B6 (pyridoxine). Thus there are now some hundreds of 'disembodied' men and women-though most, unlike Christina, can hope to get better as soon as they stop poisoning themselves with pyridoxine.

   
4

   The Man Who Fell out of Bed

   When I was a medical student many years ago, one of the nurses called me in considerable perplexity, and gave me this singular story on the phone: that they had a new patient-a young man- just admitted that morning. He had seemed very nice, very normal, all day-indeed, until a few minutes before, when he awoke from a snooze. He then seemed excited and strange-not himself in the least. He had somehow contrived to fall out of bed, and was now sitting on the floor, carrying on and vociferating, and refusing to go back to bed. Could I come, please, and sort out what was happening?

   When I arrived I found the patient lying on the floor by his bed and staring at one leg. His expression contained anger, alarm, bewilderment and amusement-bewilderment most of all, with a hint of consternation. I asked him if he would go back to bed, or if he needed help, but he seemed upset by these suggestions and shook his head. I squatted down beside him, and took the history on the floor. He had come in, that morning, for some tests, he said. He had no complaints, but the neurologists, feeling that he had a 'lazy' left leg-that was the very word they had used- thought he should come in. He had felt fine all day, and fallen asleep towards evening. When he woke up he felt fine too, until he moved in the bed. Then he found, as he put it, 'someone's leg' in the bed-
a severed human leg,
a horrible thing! He was stunned, at first, with amazement and disgust-he had never experienced, never imagined, such an incredible thing. He felt the

   leg gingerly. It seemed perfectly formed, but 'peculiar' and cold. At this point he had a brainwave. He now realised what had happened:
it was all a joke!
A rather monstrous and improper, but a very original, joke! It was New Year's Eve, and everyone was celebrating. Half the staff were drunk; quips and crackers were flying; a carnival scene. Obviously one of the nurses with a macabre sense of humour had stolen into the Dissecting Room and nabbed a leg, and then slipped it under his bedclothes as a joke while he was still fast asleep. He was much relieved at the explanation; but feeling that a joke was a joke, and that this one was a bit much, he threw the damn thing out of the bed. But-and at this point his conversational manner deserted him, and he suddenly trembled and became ashen-pale-
when he threw it out of bed, he somehow came after it
-
and now it was attached to him.

   'Look at it!' he cried, with revulsion on his face. 'Have you ever seen such a creepy, horrible thing? I thought a cadaver was just dead. But this is uncanny! And somehow-it's ghastly-it seems stuck to me!' He seized it with both hands, with extraordinary violence, and tried to tear it off his body, and, failing, punched it in an access of rage.

   'Easy!' I said. 'Be calm! Take it easy! I wouldn't punch that leg like that.'

   'And why not?' he asked, irritably, belligerently.

   'Because it's
your
leg,' I answered. 'Don't you know your own leg?'

   He gazed at me with a look compounded of stupefaction, incredulity, terror and amusement, not unmixed with a jocular sort of suspicion, 'Ah Doc!' he said. 'You're fooling me! You're in cahoots with that nurse-you shouldn't kid patients like this!'

   'I'm not kidding,' I said. 'That's your own leg.'

   He saw from my face that I was perfectly serious-and a look of utter terror came over him. 'You say it's my leg, Doc? Wouldn't you say that a man should know his own leg?'

   'Absolutely,' I answered. 'He
should
know his own leg. I can't imagine him
not
knowing his own leg. Maybe
you're
the one who's been kidding all along?'

   'I swear to God, cross my heart, I haven't … A man
should
know his own body, what's his and what's not-but this leg, this
thing'
-another shudder of distaste-'doesn't feel right, doesn't feel real-and it doesn't
look
part of me.'

   'What
does
it look like?' I asked in bewilderment, being, by this time, as bewildered as he was.

   'What does it look like?' He repeated my words slowly. 'I'll tell you what it looks like.
It looks like nothing on earth.
How can a thing like that belong to me? I don't know
where
a thing like that belongs . . . ' His voice trailed off. He looked terrified and shocked.

   'Listen,' I said. 'I don't think you're well. Please allow us to return you to bed. But I want to ask you one final question. If this-this thing-is
not
your left leg' (he had called it a 'counterfeit' at one point in our talk, and expressed his amazement that someone had gone to such lengths to 'manufacture' a 'facsimile') 'then where
is
your own left leg?'

   Once more he became pale-so pale that I thought he was going to faint. 'I don't know, he said. 'I have no idea. It's disappeared. It's gone. It's nowhere to be found . . .

   
Postscript

   Since this account was published (in A
Leg to Stand On,
1984), I received a letter from the eminent neurologist Dr Michael Kre-mer, who wrote:

   I was asked to see a puzzling patient on the cardiology ward. He had atrial fibrillation and had thrown off a large embolus giving him a left hemiplegia, and I was asked to see him because he constantly fell out of bed at night for which the cardiologists could find no reason.

   When I asked him what happened at night he said quite openly that when he woke in the night he always found that there was a dead, cold, hairy leg in bed with him which he could not understand but could not tolerate and he, therefore,

   with his good arm and leg pushed it out of bed and naturally, of course, the rest of him followed.

   He was such an excellent example of this complete loss of awareness of his hemiplegic limb but, interestingly enough, I could not get him to tell me whether his own leg on that side was in bed with him because he was so caught up with the unpleasant foreign leg that was there.

   
5

   
Hands

   Madeleine J. was admitted to St. Benedict's Hospital near New York City in 1980, her sixtieth year, a congenitally blind woman with cerebral palsy, who had been looked after by her family at home throughout her life. Given this history, and her pathetic condition-with spasticity and athetosis, i.e., involuntary movements of both hands, to which was added a failure of the eyes to develop-I expected to find her both retarded and regressed.

   She was neither. Quite the contrary: she spoke freely, indeed eloquently (her speech, mercifully, was scarcely affected by spasticity), revealing herself to be a high-spirited woman of exceptional intelligence and literacy.

   'You've read a tremendous amount,' I said. 'You must be really at home with Braille.'

   'No, I'm not,' she said. 'All my reading has been done for me- by talking-books or other people. I can't read Braille, not a single word. I can't do
anything
with my hands-they are completely useless.'