‘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 . . .’
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.’
She held them up, derisively. ‘Useless godforsaken lumps of dough—they don’t even feel part of me.’
I found this very startling. The hands are not usually affected by cerebral palsy—at least, not essentially affected: they may be somewhat spastic, or weak, or deformed, but are generally of considerable use (unlike the legs, which may be completely paralysed—in that variant called Little’s disease, or cerebral diplegia).
Miss J.’s hands were mildly spastic and athetotic, but her sensory capacities—as I now rapidly determined—were completely intact: she immediately and correctly identified light touch, pain, temperature, passive movement of the fingers. There was no impairment of elementary sensation, as such, but, in dramatic contrast, there was the profoundest impairment of perception. She could not recognise or identify anything whatever—I placed all sorts of objects in her hands, including one of my own hands. She could not identify—and she did not explore; there were no active ‘interogatory’ movements of her hands—they were, indeed, as inactive, as inert, as useless, as ‘lumps of dough’.
This is very strange, I said to myself. How can one make sense of all this? There is no gross sensory ‘deficit’. Her hands would seem to have the potential of being perfectly good hands—and yet they are not. Can it be that they are functionless—‘useless’—because she had never used them? Had being ‘protected’, ‘looked after’, ‘babied’ since birth prevented her from the normal exploratory use of the hands which all infants learn in the first months of life? Had she been carried about, had everything done for her, in a manner that had prevented her from developing a normal pair of hands? And if this was the case—it seemed far-fetched, but was the only hypothesis I could think of—could she now, in her sixtieth year, acquire what she should have acquired in the first weeks and months of life?
Was there any precedent? Had anything like this ever been described—or tried? I did not know, but I immediately thought of a possible parallel—what was described by Leont’ev and Zapo-rozhets in their book Rehabilitation of Hand Function (Eng. tr. 1960). The condition they were describing was quite different in origin: they described a similar ‘alienation’ of the hands in some two hundred soldiers following massive injury and surgery—the injured hands felt ‘foreign’, ‘lifeless’, ‘useless’, ‘stuck on’, despite elementary neurological and sensory intactness. Leont’ev and Za-porozhets spoke of how the ‘gnostic systems’ that allow ‘gnosis’, or perceptive use of the hands, to take place could be ‘dissociated’ in such cases as a consequence of injury, surgery and the weeks- or months-long hiatus in the use of the hands that followed. In Madeleine’s case, although the phenomenon was identical—‘useless-ness’, ‘lifelessness’, ‘alienation’—it was lifelong. She did not need just to recover her hands, but to discover them—to acquire them, to achieve them—for the first time: not just to regain a dissociated gnostic system, but to construct a gnostic system she had never had in the first place. Was this possible?
The injured soldiers described by Leont’ev and Zaporozhets had normal hands before injury. All they had to do was to ‘remember’ what had been ‘forgotten’, or ‘dissociated’, or ‘inactivated’, through severe injury. Madeleine, in contrast, had no repertoire of memory for she had never used her hands—and she felt she had no hands— or arms either. She had never fed herself, used the toilet by herself, or reached out to help herself, always leaving it for others to help her. She had behaved, for sixty years, as if she were a being without hands.
This then was the challenge that faced us: a patient with perfect elementary sensations in the hands, but, apparently, no power to integrate these sensations to the level of perceptions that were related to the world and to herself; no power to say, ‘I perceive, I recognise, I will, I act’, so far as her ‘useless’ hands went. But somehow or other (as Leont’ev and Zaporozhets found with their patients), we had to get her to act and to use her hands actively, and, we hoped, in so doing, to achieve integration: ‘The integration is in the action,’ as Roy Campbell said.
Madeleine was agreeable to all this, indeed fascinated, but puzzled and not hopeful. ‘How can I do anything with my hands,’ she asked, ‘when they are just lumps of putty?’