“Oh, you poor thing!” she said. “We’ll have to do something about that!” We all laughed; she had merely been going to ask me for my Social Security number.
13. It was not until some years later that the strange, unstable states I saw with my postencephalitic patients were observed in “ordinary” parkinsonian patients maintained on L-dopa. These patients, with their more stable nervous systems, might not show such effects for several years (while the postencephalitics developed them within weeks or months).
14. By 1978, Kitty had decided to retire; we thought she had reached the usual retirement age of sixty-five, but she was, we learned, in her nineties, though astonishingly youthful and vivacious (could music have kept her young?). Kitty’s replacement was Connie Tomaino, an energetic young woman with an advanced degree in music therapy who would go on to organize a massive, wide-ranging program of music therapy, exploring what musical approaches were most suitable for patients with dementia, patients with amnesia, and patients with aphasia. Connie and I collaborated for many years, and she is still at Beth Abraham, now as director of the Institute for Music and Neurologic Function.
The Bull on the Mountain
After my mother’s death, I returned to a wintry New York. Having just been fired by Beth Abraham, I had no apartment, no real job, and no significant income.
I had, however, been working as a consultant doing a weekly neurology clinic at the Bronx Psychiatric Center, familiarly known as Bronx State. I would examine patients, usually diagnosed as schizophrenic or manic-depressive, to see whether they might have some neurological condition as well. Like my brother Michael, patients on tranquilizers often developed movement disorders (parkinsonism, dystonia, tardive dyskinesia, etc.), and these movement disorders often persisted long after the medications were stopped. I spoke to many patients who said that they could live with their mental disorders but not with the movement disorders we had given them.
I also saw patients whose psychoses or schizophrenia-like conditions were due to (or augmented by) neurological diseases. I recognized several undiagnosed or misdiagnosed postencephalitic patients in Bronx State’s back wards and found others with brain tumors or degenerative brain diseases.
But this job occupied only a few hours a week and paid very little. Seeing my situation, the director at Bronx State, Leon Salzman (a very genial man who had written an excellent book on the obsessional personality), invited me to work half-time in the hospital. He thought I would be particularly interested in Ward 23, a ward where young adults with a variety of problems—autism, retardation, fetal alcohol syndrome, tuberous sclerosis, early-onset schizophrenia, etc.—were warehoused together.
Autism was not a hot subject at that time, but it was one which interested me, so I accepted the offer. At first, I enjoyed being on this ward, although it upset me deeply as well. Neurologists, perhaps more than any other specialists, see tragic cases—people with incurable, relentless diseases which can cause great suffering. There has to be, along with fellow feeling and sympathy and compassion, a sort of detachment so that one is not drawn into a too-close identification with patients.
But Ward 23 had a so-called behavior modification policy, using rewards and punishments, and in particular “therapeutic punishment.” I hated to see the way in which the patients were treated, sometimes locked in seclusion rooms or starved or restrained. Among other things, it reminded me of the way I had been treated as a child when I was sent away to a boarding school where I (and other boys) were frequently punished by a capricious and sadistic headmaster. I felt myself falling sometimes into an almost helpless identification with the patients.
I observed these patients closely, felt for them, and tried, as a physician, to bring out their positive potentials. I tried to engage them, whenever possible, in the morally neutral realm of play. With John and Michael, autistic and retarded twins who were calendar and number savants, play took the form of looking for factors or prime numbers; for José, a graphically gifted autistic boy, play was in the realm of drawing and visual arts; while for Nigel—a speechless, autistic, and probably retarded youth—music was crucial. I had my old upright piano transported to Ward 23, and when I played, Nigel and some of the other young patients would gather round the piano. Nigel, if he liked the music, would do strange and elaborate dances. (I spoke of him in one consultation note as “an idiot Nijinsky.”)
Steve, also mute and autistic, was drawn to a pool table which I had found in the hospital basement and had moved up to the ward. He acquired skill with amazing speed, and although he spent hours alone at the table, he clearly enjoyed playing pool with me. This was, as far as I could see, his only social or personal activity. When not absorbed by the pool table, he was hyperactive, darting around, always in motion, lifting things up and examining them—a sort of exploratory behavior, half-compulsive, half-playful, as one may sometimes see in Tourette’s syndrome or some frontal lobe disorders.
I was fascinated by these patients and started to write about them early in 1974. By April, I had completed twenty-four pieces—enough, I thought, for a small book.
Ward 23 was a locked ward, and being locked in was particularly hard on Steve. He would sometimes sit by the window or by the wire-glass-paneled door, longing to be outside. The staff never took him out. “He’ll run off,” they would say. “He’ll make his escape.”
I felt very sorry for Steve, and though he could not speak, I felt, from the way he would look for me and attach himself to me at the pool table, that he would not run away from me. I spoke to a colleague—a psychologist at Bronx Developmental Services, a day program where I also did a weekly session—and he agreed, after meeting Steve, that the two of us could safely take him out together. We broached the idea to Dr. Taketomo, the unit chief on Ward 23, who thought about it carefully and then agreed, saying, “He’s your responsibility if you take him out. Make sure he comes back safe and sound.”
Steve was startled when we took him out of the ward but seemed to understand that we were going on an outing. He got into the car, and we drove to the New York Botanical Garden, ten minutes from the hospital. Steve loved the plants; it was May and the lilac was in full bloom, He loved the grassy dells and the spaciousness all about him. At one point, he picked a flower, gazed at it, and uttered the first word any of us had ever heard him say: “Dandelion!”
We were stunned; we had no idea that Steve could recognize any flowers, let alone name them. We spent half an hour in the garden and then drove back slowly so Steve could get a good look at the crowds and shops on Allerton Avenue, the bustle of life he was so cut off from in Ward 23. He resisted a little as we walked back into the ward but seemed to understand there might be further outings.
The staff, who had been unanimously opposed to the excursion and had predicted it would end in disaster, seemed furious at our descriptions of Steve’s good behavior and obvious happiness in the garden and his uttering his first word. We were greeted with black looks.
I had always made a point of avoiding the big Wednesday staff meetings, but the day after our outing with Steve, Dr. Taketomo insisted that I come. I felt apprehensive of what I might hear, and even more of what I might say. And my apprehensions were fully justified.
The chief staff psychologist said that a well-organized and successful behavior modification program had been set up and that I was undermining this by my notions of “play” not conditional on external rewards or punishment. I replied, defending the importance of play and criticizing the reward-punishment model. I said I thought this constituted a monstrous abuse of the patients in the name of science and sometimes smacked of sadism. My reply was not received too kindly, and the meeting ended in angry silence.
Two days later, Taketomo came up to me and said, “Rumors are going around that you are sexually abusing your young patients.”
I was shocked and replied that such a thought would never enter my mind. I regarded patients as my charges, my responsibility, and I would never make use of my
power as a therapeutic figure to exploit them.
In a growing rage, I added, “You may know that Ernest Jones, Freud’s colleague and biographer, worked with retarded and disturbed children in London as a young neurologist until rumors came out that he was abusing his young patients. These rumors forced him out of England, and he then went to Canada.”
He said, “Yes, I know. I wrote a biography of Ernest Jones.”
I wanted to turn on him and say, “You fucking idiot, why did you get me into this?” But I didn’t; he probably felt that he was just mediating a civilized discussion.
I went to Leon Salzman and told him the situation; he was sympathetic and angered on my behalf, but he thought it would be best for me to leave Ward 23. I felt an overwhelming if irrational guilt at abandoning my young patients, and on the night of my departure I threw the twenty-four pieces I had written into the fire. I had read that Jonathan Swift, in a desperate mood, had thrown the manuscript of Gulliver’s Travels into the fire and that his friend Alexander Pope had pulled it out. But I was alone and had no Pope to pull my book out.
The day after I left, Steve escaped from the hospital and climbed up high on the Throgs Neck Bridge; mercifully, he was rescued before he could jump. This made me realize that my sudden, forced abandonment of my patients was at least as hard for them, and as dangerous, as it was for me.
I left Ward 23 foaming with guilt, remorse, and rage: guilt at leaving the patients, remorse for destroying the book, and rage at the accusations of abuse. They were false, but they made me deeply uncomfortable, and I thought that what I had delivered so fatally in a few words about the running of the ward in that Wednesday meeting, I would now expose to the world in a denunciatory book I would write, called “Ward 23.”
—
I took off for Norway soon after my departure from Ward 23, because I thought that it would be a good, peaceful place to write my diatribe. But I had a series of accidents one after the other, gradually getting more and more serious. First I rowed far out on Hardangerfjord, one of the larger fjords in Norway, and then clumsily lost an oar overboard. Somehow I made my way back with one oar, but it took several hours, and I wondered once or twice whether I would make it.
The next day I started out for a little mountain walking. I was alone and had told no one where I was going. I saw a sign in Norwegian at the bottom of the mountain which said “Beware of the Bull”; it included a little cartoon of a man being tossed by a bull. I thought this must be the Norwegian sense of humor. How could you keep a bull on a mountain?
I dismissed it from my mind, but a few hours later, coming nonchalantly around a big boulder, I found myself face-to-face with a huge bull sitting squarely on the path. “Terror” is too mild a word for what I felt, and my fear induced a sort of hallucination: the bull’s face seemed to expand until it filled the universe. Very daintily, as if I had casually decided to end my walk at this point, I turned around and started retracing my steps. But then my nerve broke, panic took over, and I started to run down the muddy, slippery path. I heard heavy, thudding footsteps and heavy breathing behind me (was the bull in pursuit?), and suddenly—I do not know how it happened—I was at the bottom of a cliff with my left leg twisted grotesquely underneath me.
One can have dissociations in times of extremity. My first thought was that someone, someone I knew, had had an accident, a bad accident, and only then did I realize that I was that someone. I tried to stand up, but the leg gave way like a strand of spaghetti, completely limp. I examined the leg—very professionally, imagining that I was an orthopedist demonstrating an injury to a class of students: “You see the quadriceps tendon has torn off completely, the patella can be flipped to and fro, the knee can be dislocated backwards: so.” With that, I yelled. “This causes the patient to yell,” I added, and then again came back to the realization that I was not a professor demonstrating an injured patient; I was the injured person. I had been using an umbrella as a walking stick, and now, snapping off the handle, I splinted the stem of the umbrella to my leg using strips of cloth I tore from my anorak and started my descent, levering myself down with my arms. At first I did so very quietly, because I thought the bull might still be in the vicinity.
I went through many different moods as I levered myself and my useless leg down the path. I did not see my life in a flash, but many, many memories unreeled. They were nearly all good memories, grateful memories, memories of summer afternoons, memories of having been loved, memories of having been given things, and gratitude that I had also given something back. In particular, I thought, I had written one good book and one great book; I found myself using the past tense. A line from an Auden poem, “Let your last thinks all be thanks,” kept going through my mind.
Eight long hours passed, and I was in near-shock, with a considerable amount of swelling in the leg, though fortunately no bleeding. Soon it would be dark; the temperature was already going down. No one was searching for me; no one even knew where I was. Suddenly I heard a voice. I looked up and saw two figures on a ridge—a man holding a gun and a smaller figure next to him. They came down and rescued me, and I thought then that being rescued from almost certain death must be one of the sweetest experiences in life.
—
I was flown to England and, forty-eight hours later, operated on to repair the torn quadriceps tendon and muscle. But following the surgery, for two weeks or more, I could neither move nor feel the damaged leg. It felt alien, not a part of me, and I was deeply puzzled, confounded. My first thought was that I had suffered a stroke while under anesthesia. My second thought was that this was a hysterical paralysis. I found myself unable to communicate my experience to the surgeon who operated on me; all he could say was “Sacks, you’re unique. I never heard anything like this before!”
Eventually, as the nerves recovered, the quadriceps came back to life: first in the form of fasciculations, individual bundles of muscle fibers twitching in the previously inert and toneless muscle; then as an ability to make small voluntary contractions of the quadriceps, to tense the muscle (where it had been jellylike, impossible to contract, for the previous twelve days); and finally in the ability to flex the hip, though the movement was erratic, weak, and easily fatigued.
At this stage, I was taken down to the casting room to have the cast changed and the stitches taken out. When the cast was removed, the leg looked quite alien, not “mine,” more like a beautiful wax model from an anatomy museum, and I felt nothing whatever as the stitches were taken out.
After a new cast was put on, I was taken to the physiotherapy department to be stood up and walked. I use this odd, passive construction—“to be stood up and walked”—because I had forgotten how to stand and walk, do this actively, on my own. Hoisted to my feet and trying to stand, I was assailed by rapidly fluctuating images of my left leg: it seemed very long, very short, very slim, very squat. These images modulated to relative stability in a minute or two, my proprioceptive system recalibrating, I imagined, to the rush of sensory input and the first, sputtering motor output in a leg which had been without sensation or movement for two weeks. But moving the leg felt like manipulating a robot limb—consciously, experimentally, one step at a time. It was nothing like normal, fluent walking. And then, suddenly, I “heard,” with hallucinatory force, a gorgeous, rhythmic passage from Mendelssohn’s Violin Concerto. (Jonathan Miller had given me a tape of this when I went into hospital, and I had played it constantly.) With this playing in my mind, I found myself suddenly able to walk, to regain (as neurologists say) the “kinetic melody” of walking. When the inner music stopped after a few seconds, I stopped too; I needed the Mendelssohn to keep going. But within an hour, I had regained fluent, automatic walking and no longer needed my imaginary musical accompaniment.
Two days later, I was moved to Caenwood House—a baronial convalescent home on Hampstead Heath. My month there was an unusually social one. I was visited not only by Pop and Lennie but by my brother David (who had arranged my flight from No
rway and emergency admission to hospital in London) and even Michael. Nieces, nephews, and cousins came, neighbors, people from shul, and, almost daily, my old friends Jonathan and Eric. All this, combined with the sense that I had been saved from death and was recovering mobility and independence daily, gave a peculiarly festive quality to my weeks at the convalescent home.
Pop would sometimes visit after his morning consulting hours (though he was almost eighty, he still had a full working day). He made a point of visiting some of the elderly parkinsonian patients at Caenwood and would sing World War I–era songs with them; many of them, though they could hardly speak, were able to sing along once my father got them going. Lennie would come in the afternoons, and we would sit outside in the mild October sun and chat for hours. When I got more mobile and graduated from crutches to a stick, we would walk to local tea shops in Hampstead or Highgate Village.
The leg incident taught me in a way which I could not, perhaps, have learned otherwise about how one’s body and the space around one are mapped in the brain and how this central mapping can be profoundly deranged by damage to a limb, especially if this is combined with immobilization and encasement. It also gave me a feeling of vulnerability and mortality which I had not really had before. In my earlier days on the motorbike, I was audacious in the extreme. Friends observed that I seemed to think of myself as immortal or invulnerable. But after my fall and my near death, fear and caution entered my life and have been with me, for better or worse, ever since. A carefree life became a careful one, to some extent. I felt this was the end of youth and that middle age was now upon me.
Almost as soon as the accident happened, Lennie perceived that there was a book to be written about it, and she liked to see me, pen in hand, writing in my notebook. (“Don’t use a ballpoint!” she admonished me sharply; her own beautifully legible, rounded handwriting was always done with a fountain pen.)