by Oliver Sacks
Foreword to AWAKENINGS (1990 Edition)
Twenty-four years ago I entered the wards of Mount Carmel and met the remarkable post-encephalitic patients who had been immured there since the great encephalitis lethargica (sleeping sickness) epidemic just after the First World War. Von Economo, who first described the encephalitislethargica half a century before, had spoken of the most affected patients as “extinct volcanoes.” In the spring of 1969, in a way which he could not have imagined, which no one could have imagined or foreseen, these “extinct volcanoes” erupted into life. The placid atmosphere of Mount Carmel was transformed—occurring before us was a cataclysm of almost geological proportions, the explosive “awakening,” the “quickening,” of eighty or more patients who had long been regarded, and regarded themselves, as effectively dead. I cannot think back on this time without profound emotion—it was the most significant and extraordinary in my life, no less than in the lives of our patients. All of us at Mount Carmel were caught up with the emotion, the excitement, and with something akin to enchantment, even awe.
It was not a purely “medical” excitement, any more than these awakenings were a purely medical event. There was a tremendous human (even allegorical) excitement at seeing the “dead” awaken again—it was at this point that I conceived the title Awakenings, taken from Ibsen’s When We Dead Awaken—at seeing lives which one had thought irremediably blighted suddenly bloom into a wonderful renewal, at seeing individuals in all their vitality and richness emerge from the almost cadaveric state where they had been frozen and hidden for decades. We had had inklings of the vivid personalities so long immured—but the full reality of these only emerged, indeed burst upon us, with our patients’ awakenings.
I was exceedingly lucky to encounter such patients at such a time, in such working conditions. But they were not the only post-encephalitic patients in the world—there were, in the late ’60s, still many thousands, some in large groups, in institutions all over the world. There was no major country without its complement of post-encephalitics. And yet Awakenings is the only existing account of such patients—their decades-long “sleep” and, then, their dramatic “awakening” in 1969.
I found this exceedingly peculiar at the time: why, I thought, were there not other accounts of what must be happening all over the world? Why, for example, was there not an Awakenings from Philadelphia, where I knew of a group of patients not so dissimilar to my own? Why not from London, where the Highlands Hospital housed the largest post-encephalitic colony in England?4 Or from Paris or Vienna, where the disease first struck?
There is no single answer to this; there were many things that mitigated against the sort of description, the “biographic” approach, of Awakenings.
One factor that made Awakenings possible had to do with the nature of the situation. Mount Carmel is a chronic hospital, an asylum; and physicians in general avoid such hospitals, or visit them briefly, and leave as soon as they can. This was not always the case: in the last century, Charcot virtually lived in the Salpêtrière, and Hughlings-Jackson at the West Riding Asylum—the founders of neurology realized well that it was only in such hospitals that the depths and details of the profounder disorders could be explored and worked out. As a resident I myself had never been to a chronic hospital, and though I had seen a number of patients with post-encephalitic Parkinsonism and other problems in outpatient clinics, I had no idea how profound and strange the effects of post-encephalitic disease might be. I found coming to Mount Carmel, in 1966, a revelation. It was my first encounter with disease of a depth I had never seen, read of, or heard of, before. The medical literature on the sleeping sickness had virtually come to a stop in 1935, so that the profounder forms of it, occurring later, had never been described. I would not have imagined it possible for such patients to exist; or, if they existed, to remain undescribed. For physicians do not go, and reports do not emerge, from the “lower reaches,” these abysses of affliction, which are now (so to speak) beneath the notice of Medicine. Few doctors ever entered the halls and back wards of chronic hospitals and asylums, and few had the patience to listen and look, to penetrate the physiologies and predicaments of these increasingly inaccessible patients.
The “other” side, the good side, of chronic hospitals is that what staff they have may work and live in them for decades, may become extraordinarily close to their charges, the patients, get to know and love them, recognize, respect them, as people. So when I came to Mount Carmel I did not just encounter “eighty cases of post-encephalitic disease,” but eighty individuals, whose inner lives and total being was (to a considerable extent) known to the staff, known in the vivid, concrete knowing of relationship, not the pallid, abstract knowing of medical knowledge. Coming to this community—a community of patients, but also of patients and staff—I found myself encountering the patients as individuals, whom I could less and less reduce to statistics or lists of symptoms.
And, of course, this was a unique time for the patients, and for all of us. It had been established in the late 1950s that the Parkinsonian brain was lacking in the transmitter dopamine, and that it might therefore be “normalized” if the level of dopamine could be raised. But attempts to do this, by giving L-DOPA (a precursor of dopamine) in milligram quantities, had failed persistently—until Dr. George Cotzias, with great audacity, gave a group of patients L-DOPA in doses of a thousand times greater than had ever been used. With the publication of Cotzias’s results in February 1967, the outlook for Parkinsonian patients was changed at a stroke: a sudden, unbelievable hope appeared—that patients hitherto able to look forward only to miserable and increasing disability might be (if not cured) transformed by the new drug. Life opened out once again, in imagination, for all our patients. For the first time in forty years they could believe in a future. The atmosphere from this time on was electric with excitement. One of the patients, Leonard L., when he heard of L-DOPA, rapped on his letterboard with mixed enthusiasm and irony, “Dopamine is Resurrectamine. Cotzias is the Chemical Messiah.”
Yet it was not L-DOPA, or what it offered, which was so exciting for me when I first came as a young doctor, a year out of residency, to Mount Carmel. What excited me then was the spectacle of a disease that was never the same in two patients, a disease that could take any possible form—one rightly called a “phantasmagoria” by those who first studied it. (“There is nothing in the literature of medicine,” wrote McKenzie in 1927, “to compare with the phantasmagoria of disorder manifested in the course of this strange malady.”) At this level of the fantastic, the phantasmagoric, the encephalitis was enthralling. Much more fundamentally, it was, by virtue of the enormous range of disturbances occurring at every level of the nervous system, a disorder that could show, far better than any other, how the nervous system was organized, how brain and behavior, at their more primitive levels, worked. The biologist, the naturalist, in me was enthralled by all this—and led me to start gathering data at this time for a book on primitive, subcortical behaviors and controls.
But then, over and above the disorder, and its direct effects, were all the responses of the patients to their sickness—so what confronted one, what one studied, was not just disease or physiology, but people, struggling to adapt and survive. This too was clearly realized by the early observers, above all Ivy McKenzie: “The physician is concerned (unlike the naturalist) . . . with a single organism, the human subject, striving to preserve its identity in adverse circumstances.” In perceiving this, I became something more than a naturalist (without, however, ceasing to be one). There evolved a new concern, a new bond: that of commitment to the patients, the individuals under my care. Through them I would explore what it was like to be human, to stay human, in the face of unimaginable adversities and threats. Thus, while continually monitoring their organic nature—their complex, ever-changing pathophysiologies and biologies—my central study and concern became identity—their struggle to maintain identity—to observe this, to assist this, and, finally, to describe thi
s. All this was at the junction of biology and biography.
This sense of the dynamics of illness and life, of the organism or subject striving to survive, sometimes under the strangest and darkest circumstances, was not a viewpoint which had been emphasized when I was a student or resident, nor was it one I found in the current medical literature. But when I saw these post-encephalitic patients, it was clearly and overwhelmingly true—indeed, it was the only way in which I could view them. Thus what had been dismissed disparagingly by most of my colleagues (“chronic hospitals—you’ll never see anything interesting in those places”) revealed itself as the complete opposite: an ideal situation in which to observe, to care, to explore. Awakenings would have been written, I think, even if there had not been any “awakening”: it would then have been People of the Abyss (or Cinquante Ans de Sommeil, as the French edition has it), a delineation of the stillness and darkness of these arrested and frozen lives, and of the courage and humor with which patients, nonetheless, faced life.
The intensity of feeling for these patients, and equally of intellectual interest and curiosity about them, bound us together as a community at Mount Carmel; and this intensity rose to a peak in 1969, the actual year of the patients’ “awakenings.” In the spring of that year, I moved to an apartment a hundred yards from the hospital and would sometimes spend twelve or fifteen hours a day with our patients. I was with the patients constantly—I grudged the hours of sleep—observing them, talking with them, getting them to keep notebooks, and keeping voluminous notes myself, thousands of words each day. And if I had a pen in one hand, I had a camera in the other: I was seeing such things as had never, perhaps, been seen before—and which, in all probability, would never be seen again; it was my duty, and my joy, to record and bear witness. Many others also dedicated themselves, spent countless hours in the hospital. All of us involved with the patients—nurses, social workers, therapists of every sort—were in constant communication: talking to each other excitedly in the passage, phoning each other on weekends and at night, constantly exchanging new experiences and ideas. The excitement, the enthusiasm, of that year was remarkable; this, it seems to me, was an essential part of the Awakenings experience.
And yet, at the start, I scarcely knew what to expect. I had read the half-dozen reports on L-DOPA published in 1967 and ’68, but felt my own patients to be very different. They did not have ordinary Parkinson’s disease (like the other patients reported), but a post-encephalitic disorder of far greater complexity, severity, and strangeness. How would these patients, with their so-different disease, react? I felt I had to be cautious—almost exaggeratedly so. When, early in 1969, I embarked on the work which was later to become Awakenings, I conceived it in quite limited and narrowly “scientific” terms—as a ninety-day, double-blind trial of L-DOPA in a large group of patients who had become institutionalized after having encephalitis. L-DOPA was considered an experimental drug at this time, and I needed to get (from the Food and Drug Administration) a special investigator’s license to use it. It was a condition of such licenses that one use “orthodox” methods, including a double-blind trial, coupled with presentation of results in quantitative form.
But it became obvious within a month or less that the original format would have to be abandoned. The effects of L-DOPA in these patients was decisive—spectacular; while, as I could infer from the precise 50 percent failure rate, there was no significant placebo effect whatever. I could no longer, in good conscience, continue the placebo but had to try L-DOPA in every patient; and I could no longer think of giving it for ninety days and then stopping—this would have been like stopping the very air that they breathed. Thus what was originally conceived as a limited ninety-day experiment was transformed instead into a historical experience: a story, in effect, of life for these patients as it had been before L-DOPA, and as it was changed, and as it was to become, after starting treatment with L-DOPA.
Thus I was impelled, willy-nilly, to a presentation of case-histories or biographies, for no “orthodox” presentation, in terms of numbers, series, grading effects, etc., could have conveyed the historical reality of the experience. In August 1969, then, I wrote the first nine case histories, or “stories,” of Awakenings.
The same impulse, the same sense that one had to convey stories and phenomena—the drama of stories, the delight of phenomena—led me to write a number of letters to the editor, which I dispatched to the Lancet and the British Medical Journal early the next year. I enjoyed writing these letters, and as far as I could gather, readers of these journals enjoyed reading them too. There was something about their format and style that allowed me to convey the wonder of the clinical experience, in a way that would have been quite impossible in a medical article.
I now decided to present my overall observations, and my general conclusions, while still adhering to an epistolary format. My earlier letters to the Lancet had been anecdotal (and everyone loves anecdotes); I had not yet attempted any general formulations. My first experiences, the patients’ first responses, in the summer of ’69, had been happy ones; there had been an astonishing, festive “awakening,” at the time—but then all of my patients ran into trouble and tribulation. I observed, at this time, not only specific “side-effects” of L-DOPA, but certain general patterns of trouble—sudden and unpredictable fluctuations of response, the rapid development of oscillations, the development of extreme sensitivity to L-DOPA, and finally, the absolute impossibility of matching dose and effect—all of which I found dismaying in the extreme. I tried altering the dose of L-DOPA, but this no longer worked—the “system” now seemed to have a dynamic of its own.
In the summer of 1970, then, in a letter to the Journal of the American Medical Association, I reported these findings, describing the total effects of L-DOPA in sixty patients whom I had maintained on it for a year. All of these, I noted, had done well at first; but all of them, sooner or later, had escaped from control, had entered complex, sometimes bizarre, and unpredictable states. These could not, I indicated, be seen as “side effects,” but had to be seen as integral parts of an evolving whole. Ordinary considerations and policies, I stressed, sooner or later ceased to work. There was a need for a deeper, more radical understanding.
My JAMA letter caused a furor among some of my colleagues. I was astonished and shocked by the storm that blew up; and, in particular, by the tone of some of the letters. Some colleagues insisted that such effects “never” occurred; others that, even if they did, the matter should be kept quiet, lest it disturb “the atmosphere of therapeutic optimism needed for the maximal efficiency of L-DOPA.” It was even thought, absurdly, that I was “against” L-DOPA—but it was not L-DOPA but reductionism that I was against. I invited my colleagues to come to Mount Carmel, to see for themselves the reality of what I had reported; none of them took up my invitation. I had not properly realized, until this time, the power of wish to distort and deny—and its prevalence in this complex situation, where the enthusiasm of doctors, and the distress of patients, might lie in unconscious collusion, equally concerned to wish away an unpalatable truth. The situation had similarities to what had occurred twenty years before, when cortisone was clothed with unlimited promise; and one could only hope that with the passage of time, and the accumulation of undeniable experience, a sense of reality would triumph over wish.
Was my letter too condensed—or simply confusing? Did I need to put things in the form of extended articles? With much labor (because it went against the grain, so to speak), I put everything I could in an orthodox or conventional format—papers full of statistics and figures and tables and graphs—and submitted these to various medical and neurological journals. To my amazement and chagrin, none was accepted—some of them, indeed, elicited vehemently censorious, even violent, rejections, as if there were something intolerable in what I had written. This confirmed my feeling that a deep nerve had been struck, that I had somehow elicited not just a medical, but a sort of epistemological, anxiety—and rage
.5
I had not only cast doubt on what had appeared at first to be the extremely simple matter of giving a drug and being in control of its effects; I had cast doubt on predictability itself. I had (perhaps without fully realizing it myself ) hinted at something bizarre, a contradiction of ordinary ways of thinking, and of the ordinary, accepted picture of the world. A specter of extreme oddness, of radical contingency, had come up—and all this was disquieting, confounding, in the extreme (“These things are so bizarre that I cannot bear to contemplate them”—Poincaré).
And so, by mid-1970 I was brought to a halt, at least so far as any publication was concerned. The work continued, full of excitement, unabated, and I accumulated (I dared to think) an absolute treasure of observations and of hypotheses and reflections associated with them, but I had no idea what to do with them. I knew that I had been given the rarest of opportunities; I knew that I had something valuable to say; but I saw no way of saying it, of being faithful to my experiences, without forfeiting medical “publish-ability” or acceptance among my colleagues. This was a time of great bewilderment and frustration, considerable anger, and sometimes despair.
This impasse was broken in September of 1972, when the editor of The Listener invited me to write an article on my experiences. This was going to be my opportunity. Instead of the censorious rejections I was used to, I was actually being invited to write, being offered a chance to publish, fully and freely, what had been accumulating and building up, dammed up, for so long. I wrote “The Great Awakening” at a single sitting—neither I nor the editor altered a single word—and it was published the following month. Here, with a sense of great liberation from the constraints of “medicalizing” and medical jargon, I described the wonderful panorama of phenomena I had seen in my patients. I described the raptures of their “awakenings,” I described the torments that so often followed; but above all, it was phenomena which I was concerned to describe, with a neutral and phenomenological (rather than a therapeutic, or “medical”) eye.