A Leg to Stand On

by Oliver Sacks, M. D.

  I was amazed and fascinated by these visual experiences, which appeared to me, in some sense, analogous to the leg. Stereoscopy, so it seemed, had partly disappeared, to precisely the extent of my visual deprivation—just as the leg had disappeared, totally, with total sensory and motor deprivation. I could be fascinated by the visual changes, without any fear. And yet, despite this, despite other differences, there seemed to be a curious analogy: deprivation, non-use, in both cases, had been at work—with spectacular, bizarre (and, in the leg’s case, quite dreadful) consequences. There was nothing dreadful about the loss of stereoscopy, but it was still, nevertheless, quite drastic and radical. I had never realized that stereoscopy could be confined. I wondered what happened to prisoners confined in small cells. And I immediately bought a stereoscope and donated it to the ward, with the thought that it might be used by future patients, confined in small spaces, to protect them against “prisoner syndrome”—the resultant contractions of visual space.*

  Room, space, expansion. Freedom—ever-expanding physiology and world, ever-expanding personal (and social) space—this, it came to me, with extreme clarity, this was the essence of getting-better, convalescence—not merely in the specific realm of my leg and mobility, not merely in the technical realm of stereoscopy and visuality, but in the whole general realm of coming to life, emerging from self-absorption, sickness, patienthood, and confinement, to the spaciousness of health, of full being, of the real world—which, rather terrifyingly, I had largely forgotten, in the short space of three weeks as a patient.

  Not the least part of the terror was that I experienced no terror. I had no sense, no realization, of how contracted I was, how insensibly I had become contracted to the locus of my sickbed and sickroom—contracted in the most literal, physiological terms, but contracted too in imagination and feeling. I had become a pygmy, a prisoner, an inmate—a patient—without the faintest awareness. We speak, glibly, of “institutionalization,” without the smallest personal sense of what is involved—how insidious, and universal, is the contraction in all realms (not least the moral realm), and how swiftly it can happen to anyone, to oneself.

  I had often spoken to my own post-encephalitic patients, institutionalized for decades before their “awakening,” and asked them—Did they not feel terribly confined? Did they not yearn for the great world outside? And I would be amazed and incredulous when they quietly said “No.” I could not see them all as pathological—and yet this complaisance seemed almost universal, and retarded and obstructed their return to spaciousness and fullness of life, even when this had been rendered physically possible by L-DOPA. Now, I realized, such regression was universal. It would occur with any immobilization, illness, or confinement. It was an unavoidable, natural shrinking-down of existence, made both bearable and untreatable because not realizable—not directly realizable. How could one know that one had shrunk, if one’s frame of reference had itself shrunk? One had to be reminded of the great world one had “forgotten”—and then, only then, could one expand and be cured.

  * * *

  —

  That same happy Saturday—the day I was moved from my windowless, tiny, solitary cell to a spacious room on the orthopedic ward, the day when visual space and spaciousness was restored to me, a day on which I walked half a mile, which gave me a great sense of motor strength and space—that same happy Saturday (just three weeks after my fall—the longest and shortest, fullest and emptiest, three weeks of my life) saw a moral liberation, too.

  There had been, for me—and perhaps there must be for all patients, for it is a condition of patienthood (though, one hopes, one which can be well- and not ill-handled)—two miseries, two afflictions, conjoined, yet distinct. One was the physical (and “physical-existential”) disability—the organically determined erosion of being and space. The other was “moral”—not quite an adequate word—associated with the reduced stationless status of a patient, and, in particular, conflict with and surrender to “them”—“them” being the surgeon, the whole system, the institution—a conflict with hateful and even paranoid tones, which added to the severe, yet neutral, physical affliction a far less tolerable, because irresoluble, moral affliction. I had felt not only physically but morally prostrate—unable to stand up, stand morally before “them,” in particular, before the surgeon. And though I knew, at some level, all the time, that he was a decent man, and so was I, and that everyone meant well and was doing his best, yet I couldn’t shake off the nightmare feeling which had lain on me, doubtless to some extent since admission, but which became acute and specific when communications broke down—when the surgeon said, with authority, that there was “nothing,” and so contradicted and questioned and doubted my (most elemental) perceptions—perceptions on which my most elemental sense of “I,” self-integrity, was based. When I felt physically helpless, immobile, confined, I felt morally helpless, paralyzed, contracted, confined—and not just contracted, but contorted as well, into roles and postures of abjection.

  On Saturday, then, I called on the surgeon. Previously I had passively awaited his calls, which were always in the odious context of “rounds,” where before a massive team he had to play the role of all-wise consultant and I the role of all-passive patient. I called on the surgeon, and had “a good talk”—a wise talk, a human talk, which took us both off the hook.

  Such a talk was possible, now, because I needed him less. I no longer felt critically (and resentfully) dependent. It was possible because my world had enlarged—and so he, the system, the institution, could shrink, shrink into a reasonable and proper perspective. And clearly for him this was a relief too, because nobody wants a vexatious, vexed patient, nor did he want to play ogre in my drama. Peace was established, with propriety, dignity—and some hint of an amused, but reserved, cordiality.

  Now I was free—morally free, as well as physically free—to make the long trek, the return, which still lay before me. Now the moral obscurity and darkness was lifted, as well as the physical darkness, the shadow, the scotoma. Now the road lay open before me into the land of light and life. Now, unimpeded, without conflict or blocks, I would run this good road, swifter and swifter, into a joy, a fullness and sweetness of life, such as I had forgotten, or never known. My spirits had been rising since that wonder-walk on Wednesday, and now, on Saturday, I was flying with joy—a joy which was to last, and deepen, for six weeks, which transformed, and transfigured the world, and made of everything a new wonder and festivity.

  A peculiar delight suffused the garden outside my window. There had been no real outside before, no daylight, no sun rising and setting, no grass, no trees, no sense of space or life. Like a man parched, I gazed thirstily, yearningly, at the green quadrangle, only realizing how cut off from life I had been, in my sterile, windowless, artificial cubicle. No picture sufficed. I had to see—and since it was still physically very difficult for me, at least for the hours I still spent in bed, I gazed at its reflection in my shaving mirror held aloft. And through the mirror, tiny but real, I saw figures in the garden, sitting and strolling—my first glimpse of the real world, the human world, outside. Visually, in tiny reflection, I hugged this to myself, and longed above all to go down to this garden (though it didn’t occur to me that this would ever actually be possible: it still seemed, in some way, unattainable, or forbidden). Every step, every advance, needed a kind of “permission.” This feeling of being shut-up and kept-in was extraordinarily intense, the more so for being, for the most part, unconscious and unrealized. Moreover it was often I myself who prohibited, or inhibited, free speech and action—that part of myself which was now the institution internalized. And now, for the first time finding myself with other patients, I would see this in them where I failed to see it in myself; and I would see that something or someone was needed to break the barrier of prohibition or inhibition—whether it was someone “giving permission,” or the sudden insight that no “permission” was required. This t
oo made recovery step-wise. There was, so to speak, a ladder of freedom to be climbed rung by rung, the ascent of which needed a double prerequisite—the necessary degree of organic recovery and the necessary audacity, permission, or moral freedom.

  “Uneventful recovery.” What damned utter nonsense! Recovery (as the good Registrar said) was a “pilgrimage,” a journey, in which one moved, if one moved, stage by stage, or by stations. Every stage, every station, was a completely new advent, requiring a new start, a new birth or beginning. One had to begin, to be born, again and again. Recovery was an exercise in nothing short of birth, for as mortal man grows sick, and dies, by stages, so natal man grows well, and is quickened, by stages—radical stages, existence-stages, absolute and new: unexpected, unexpectable, incalculable and surprising. Recovery uneventful? It consists of events!

  After Saturday events moved quicker—or in broad, historical sweeps. I ceased to keep a minute diary or journal, and, to some extent, ceased observation and recording altogether, being carried along in the broad sweep, the spate, of recovery. And, as importantly, I was no longer alone, but one of many, a ward, a community, of patients. I was no longer the only one in the world, as perhaps every patient thinks in the ultimate solitude of illness. I was no longer confined to my own, empty world, but found myself in a world peopled by others—real others, at least in relation to each other and me: not just role-players, good or bad, as my caretakers had been. Only now could I exorcise the fearful words of the surgeon to me: “You’re unique!” Now, speaking freely to my fellow patients—a freedom made possible precisely by fellowship, by the fact that they were, we were, brothers together, under no status pressure to conceal or distort—now enjoying free commerce, for the first time, I learned that my own experience, my case, was far from unique. Almost every patient who had had injury or surgery to a limb, and whose limb had then been casted, out of sight, out of action, had experienced, at least, some degree of alienation: I heard of hands and feet which felt “queer,” “wrong,” “strange,” “unreal,” “uncanny,” “detached,” and “cut off”—and, again and again, the phrase “like nothing on earth.” I was on the ward six days, and spoke fully and freely to all patients there. Many, it was apparent, had had experiences like mine; and none, it was clear, had communicated this successfully to the surgeon. Some had tried, and been rebuffed, like me; most had preserved a reticent silence; none had actually managed to get through. Some had been terrified, others mildly scared; a few, stolid or stoic, seemed indifferent, saying, “Nah, I didn’t worry. It’s just one of those things.” If, indeed, I was unique it was not in regard to the experience or its character, but only in the reflection, the ceaseless thought, I brought to it—the sense of “reason’s violation,” and its fundamental importance.

  As soon as I had ascertained this, the investigator in me rested, and I could slip into a more normal, social relation. But all of us were still somewhat solitary and isolated at this stage—from the essential aloneness and privacy of illness, and the isolation enforced by the rigid “vertical” structure of the institution.

  * * *

  —

  My six days on the ward were social to a point—but to a necessarily limited point. It was only later, in the Convalescent Home, that the atmosphere changed, that isolation and institutionalization fell away, like a bad dream, and gave way to a delightful, cozy, homey atmosphere with a sense, often intense, of fellowship and friendship, and of an essentially communal and convivial life, living together, getting well together—the essential sharing and “con” of convalescence.

  The day before my transfer to Caenwood, the Convalescent Home in Hampstead, I was taken down to the little garden I had so yearningly gazed at—taken down in a wheelchair, dressed in hospital pajamas. This was a great joy—to be out in the air—for I had not been outside in almost a month. A pure and intense joy, a blessing, to feel the sun on my face and the wind in my hair, to hear birds, to see, touch and fondle the living plants. Some essential connection and communion with nature was re-established after the horrible isolation and alienation I had known. Some part of me came alive, when I was taken to the garden, which had been starved, and died, perhaps without my knowing it. I suddenly felt what I have often felt intensely before, but never thought to apply to my own time in hospital: that one needs open-air hospitals with gardens, set in country and woods—like some of the Little Sisters’ Homes I work in in rural New York; a hospital like a home, not a fortress or institution; a hospital like a home—and perhaps like a village.

  But if I rejoiced in the blessing of the sun, I found I was avoided by the non-patients in the gardens—the students, nurses, visitors who came there. I was set apart, we were set apart, we patients in white nightgowns, and avoided clearly, though unconsciously, like lepers. Nothing gave me such a sense of the social caste of patients, their being out-cast, outcasts, set apart by society: the pity, the abhorrence, our white gowns inspired—the sense of a complete gulf between us and them, which courtesy and ceremony served only to emphasize. I realized how I myself, in health, in the past, had shuddered away from patients, quite unconsciously, never realizing it for a moment. But now, sick myself, garbed and gowned as a patient, I was intensely conscious of how I was shuddered-from, how the healthy, the non-patients, kept a distance between us. Had I not been so fearful and self-involved on admission, I might have seen more clearly what “admission” involved—the hospital clothes, the name-tag, the removal of individuality, the reduction to a generic status and identity; but, curiously, it took that scene in the garden to show me, diagrammatically, and almost comically, how set-apart we were—and the gulf which would have to be bridged or leapt before one could fully rejoin the world of men.

  The gap, the abyss, between sickness and health—this was what the Convalescent Home was for—we had become invalids, in-valid. We had resided in sickness too long. And we had not only harbored it, but become sick ourselves—developed the attitudes of inmates and invalids. Now we needed a double recovery—a physical recovery, and a spiritual movement to health. It was not enough to be physically well, if we still felt the fear and the care of the ill. We had all, in our ways, been undermined by sickness—had lost the careless boldness, the freedom, of the well. We could not be thrown back into the world straight-away. We had to have an in-between—existential as well as medical, a place where we could live a limited existence—limited and protected, not too demanding—a limited, but steadily enlarging, existence—until we were ready to re-enter the great world. The acute hospital was scarcely a world at all, as acute injury or illness was scarcely a life. Now we were improved, and needed world and life, but could not face, would be destroyed by, the full demands of life, and the bustling, callous, careless hugeness of the world; we needed a quiet place, a haven, a shelter, where we could gradually regain our confidence and health, our confidence no less than our health—a peaceful interlude, a Sabbath-world, something like college, where we could grow morally and physically strong.

  It also struck me, this last day in hospital, that convalescence, and special places for it, was a social no less than an individual need. If we, freshly sick, could not face the world, the world could not face us, with our lineaments, our habiliments, of sickness and affliction. We inspired horror and fear—I saw this quite clearly—and for the world’s sake, no less than our own, could not be let out. We had been stamped, with the stigmata of patients, the intolerable knowledge of affliction and death, the intolerable knowledge of passivity, lost nerve, and dependence—and the world does not care to be reminded of such things. Erving Goffman has written well of “total institutions”—asylums, prisons—for the wholly set apart, those essentially terrible but perhaps necessary constructs, to keep from public sight the sick, the condemned, the stigmatized. But convalescent homes, like colleges, or cloisters, were different. They had a character essentially benevolent and sweet. They were institutions (if this is not a contradiction in terms) devo
ted to patience and understanding, to the nurture and re-arming of frail bodies and souls—devoted, centrally, to the individual and his care. Such a convalescent home would indeed be a haven and home, an asylum in the best and truest, deepest sense, and infinitely far from the horror of Goffman’s “asylums.”

  And yet there had to be ambivalences here, for though as a sick patient, in hospital, one was reduced to moral infancy, this was not a malicious degradation, but a biological and spiritual need of the hurt creature. One had to go back, one had to regress, for one might indeed be as helpless as a child, whether one liked it, or willed it, or not. In hospital one became again a child with parents (parents who might be good or bad), and this might be felt as infantilizing and degrading, or as a sweet and sorely-needed nourishing. Now came the next stage—the need for growing-up. If morally, existentially, one was a child in hospital, in a convalescent home one would be treated differently—more brusquely, less tenderly: as an adolescent, perhaps.