On the Move: A Life

by Oliver Sacks

  “I’ve heard of your battle with the waves, you crazy loon,” she wrote in 1964. I had written to her of how I dislocated a shoulder when flung on Venice Beach by a giant wave and how my friend Chet had pulled me out.

  She hoped I would send her some of my papers on neurology, “of which I’ll understand not one word, but will glow with loving pride at my ridiculous, brilliant and altogether delightful nephew.”

  And so our letters continued, seven or eight a year. I wrote to Lennie of leaving California and my first impressions of New York:

  This is really a marvelous city, rich, exciting, unlimited in range and depth—as London is; although the two cities are profoundly different. New York is punctate, scintillating, the way all cities look from a plane at night: it is a mosaic of qualities and people and dates and styles, a sort of enormous urban jigsaw. Whereas London has much the quality of an evolved city, the present like a transparency overlying the wafers of the past, layer on layer, extended in time, like Schliemann’s Troy, or the crust of the earth. But then again, for all its sparkling synthetic quality, New York is strangely old-fashioned, archaic. The huge girders of the “El” are a railway-phantasy of the 1880’s, the crayfish tail of the Chrysler building a pure Edwardian vanity. I can’t see the Empire State Building without the vast silhouette of King Kong scrambling up its sides. The East Bronx is like Whitechapel in the early Twenties (before the diaspora to Golders Green).

  Len wrote of family events, of books she had read and plays she had seen, and especially of her robust walking trips. She remained an enthusiastic hill walker into her seventies and now had the leisure to explore the wilder parts of Ireland, Scotland, and Wales.

  Along with her letters came parcels of Blue Vinny, a blue cheese from a single dairy farm in Dorset; I adored this and rated it above Stilton. I loved the slightly smelly parcels that arrived every month, each containing a quarter of a Blue Vinny wheel. She had started sending me these in my Oxford days, was still doing so fifteen years later.

  In 1966, Len wrote to me about my mother’s second hip operation. She wrote, “Your mum has had a rough week…. Your pop was a very worried man.” But all went well—my mother moved to crutches, then a stick—and the following month Lennie wrote, “Her grit and determination are incredible.” (All the Landau siblings, it seemed to me, were strongly endowed with grit and determination.)

  I wrote to Lennie early in 1967, after I had read Liveing’s book On Megrim and determined to write my own book on the subject. Lennie was excited by this; she had felt, since my boyhood days, that I could and should be “a writer.” I wrote to her of Friedman’s reaction to my manuscript and how my father thought that I would do well to defer to him, but Lennie, with her characteristic Landau clarity and tough-mindedness, did not agree.

  “Your Dr. Friedman,” she wrote in October of 1967, “sounds a most unpleasant piece of work, but don’t let him get under your skin. Keep hold of your faith in yourself.”

  —

  In the autumn of 1967, my parents stopped in New York; they were on the way back from Australia, where they visited my eldest brother, Marcus, and his family. Our parents had worried about me, one way and another, and now they could see for themselves that I was enjoying professional life, appreciating and being appreciated by my patients—my brother David had visited New York a few months earlier and reported that I was “adored” by my patients—and writing about the extraordinary postencephalitic patients I was now seeing in New York. A few weeks later, Lennie wrote, “Your mum and pop came home completely refreshed at having seen their youngest and eldest in their respective habitats,” adding that Marcus, in Australia, had written her a letter of “lyrical ecstasy” about his baby daughter.

  By 1968, larger threats were looming—the Vietnam War and an intensification of the draft; I was summoned for a military interview but managed to persuade the powers that I was not suitable material for the army.

  “Let me tell you how relieved we all are that you’re to remain a civilian,” Len wrote. “This Vietnamese War grows more horrific daily, and the web becomes more and more entangled…. What are your views on the horrible muddle the world over (as well as the occasional good happenings)? Do write and let me know how you are.”

  1. Perhaps I had never really expected to succeed in research. In a 1960 letter to my parents, wondering about doing research in physiology at UCLA, I wrote, “I am probably too temperamental, too indolent, too clumsy and even too dishonest to make a good research worker. The only things I really enjoy are talking…reading and writing.”

  And I quoted a letter I had just received from Jonathan Miller, who, writing about himself, Eric, and me, said, “I am, like Wells, enchanted by the prospect and paralyzed by the reality of scientific research. The only place where any of us move nimbly or with grace is with ideas and words. Our love of science is utterly literary.”

  2. One might imagine that the recreational use of angel dust would not have outlasted the 1960s, but I find, looking at the latest available Drug Enforcement Administration figures, that as recently as 2010 more than fifty thousand young adults and high school students had to be brought to emergency rooms after taking PCP.

  3. One reader at Faber, however, made a peculiar comment. He said, “The book is too easy to read. This will make people suspicious—professionalize it.”

  4. In fact, in 1992, I did add to the book, stimulated in part by seeing an exhibit of migraine art and in part by discussion with my friend Ralph Siegel, a very good mathematician and neuroscientist. (Twenty years after that, in 2012, I revisited the subject of migraine aura from yet another perspective when I wrote Hallucinations.)

  5. In 1972, Pop was consulted by our cousin Al Capp, who had a range of peculiar symptoms which had stymied his own doctors. My father took one look at him, as they were shaking hands, and said, “Are you on Apresoline?” (This was a drug then used to control high blood pressure.)

  “Yes,” Al said, surprised.

  “You have SLE, systemic lupus erythematosus, caused by Apresoline,” my father explained. “Fortunately this drug-induced form is entirely reversible, but if you do not stop the Apresoline, it will be fatal.”

  Al felt that my father, with his lightning intuition, had saved his life.

  6. This went both ways, as Abba Eban wrote in an obituary for my father in The Jewish Chronicle:

  I remember in 1967, after the Six-Day War, when I passed through London on my way back from the United Nations, the taxi in which I was travelling drew level with another cab at a red traffic light. My driver called out to his colleague: “Do you know who I’ve got in here? I’ve got a nephew of Dr. Sacks!”

  I received the accolade without any sense of humiliation and was certainly proud for Uncle Sam. He went round telling the story for months with characteristic exuberance.

  7. Annie Landau, the eldest, left the comforts of London for Palestine in 1899. She knew no one in this new place but was determined to help provide a wide-ranging education for the Anglo-Jewish girls in Jerusalem, at a time when most of them were impoverished and illiterate, denied education, and pushed into teenage marriage or prostitution. They could not have found a better champion than my aunt, whose passion for women’s education overcame all sorts of cultural and political obstacles. Her parties, which brought together eminent Jews, Arabs, Christians, and members of the British mandate, were legendary, and the school that she directed for forty-five years left a lasting legacy on the development of modern Jerusalem. (The history of Annie Landau and her school, the Evelina de Rothschild School, is recounted in Laura S. Schor’s book The Best School in Jerusalem: Annie Landau’s School for Girls, 1900–1960.)

  Awakenings

  In the fall of 1966, I started seeing patients at Beth Abraham, a chronic disease hospital affiliated with the Albert Einstein College of Medicine. I soon realized that among its five hundred residents, some eighty patients, dispersed in various wards, were survivors of the extraordinary encephalitis lethar
gica (or sleepy sickness) pandemic which had swept the world in the early 1920s. The sleepy sickness had killed many thousands outright, and those who had seemingly recovered often came down, sometimes decades later, with strange postencephalitic syndromes. Many were frozen in deeply parkinsonian states, some stuck in catatonic postures—not unconscious but with their consciousness suspended at the point where the disease had closed in on certain parts of the brain. I was amazed when I heard that some of the patients had been like this for thirty or forty years—indeed, that the hospital had originally been opened in 1920 for these first victims of the encephalitis lethargica.

  During the 1920s and 1930s, hospitals had been built or converted around the world to accommodate postencephalitic patients; one such, the Highlands Hospital in north London, had originally been a fever hospital with dozens of pavilions spread out over many acres but was then used to house nearly twenty thousand postencephalitics. But by the late 1930s, most of those affected had died, and the disease itself—once front-page news—was all but forgotten. There were very few reports in the medical literature about the strange postencephalitic syndromes that might not become apparent until decades later.

  The nurses, who knew these patients well, were convinced that behind their statuesque appearance—locked in, imprisoned—there were intact minds and personalities. The nurses also mentioned that the patients might have occasional, very brief liberations from their frozen states; music, for example, might animate the patients and allow them to dance, even though they could not walk, or to sing, even though they could not speak. On rare occasions, moreover, some might move spontaneously, suddenly, and with lightning speed, so-called kinesia paradoxa.

  What fascinated me 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 had studied it in the 1920s and 1930s. It was a syndrome that included an 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 worked at their more primitive levels.

  When I wandered among my postencephalitic patients, I sometimes felt like a naturalist in a tropical jungle, sometimes, indeed, in an ancient jungle, witnessing prehistoric, pre-human behaviors—grooming, clawing, lapping, sucking, panting, and a whole repertoire of strange respiratory and phonatory behaviors. These were “fossil behaviors,” Darwinian vestiges of earlier times brought out of physiological limbo by the stimulation of primitive brain-stem systems, damaged and sensitized by the encephalitis in the first place, and now “awakened” by L-dopa.1

  I spent a year and a half observing and taking notes, sometimes filming the patients and recording them, and in that time I got to know them not only as patients but as people. Many of them had been abandoned by their families and had no contact with anyone but the nursing staff. It was not until I dug out their charts from the 1920s and 1930s that I could confirm their diagnoses, and at this point I asked the director of the hospital if we could move some of them together into a single ward, in the hope that this would allow a community to form.

  I felt from the start that I was seeing individuals in an unprecedented state and situation, one which had never been described, and within weeks of encountering them in 1966, I pondered writing a book about them; I thought of adopting one of Jack London’s titles, The People of the Abyss. 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 postencephalitic patients, it was clearly and overwhelmingly true. 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 for seeing entire lives unfold.

  —

  It had been established in the late 1950s that the parkinsonian brain was deficient in the transmitter dopamine and that it might therefore be “normalized” by raising the level of dopamine. But attempts to do this by giving L-dopa (a precursor of dopamine) in milligram quantities had unclear effects, and it was not until George Cotzias, with great audacity, gave doses a thousand times greater to a group of patients with Parkinson’s disease that extraordinary therapeutic effects were seen. With the publication of his results in February 1967, the outlook for patients with Parkinson’s disease was changed at a stroke: patients hitherto able to look forward only to miserable and increasing disability might be transformed by the new drug. The atmosphere was electric with excitement, and I wondered whether L-dopa could help my own, very different patients.

  Should I give L-dopa to our patients at Beth Abraham? I hesitated; they did not have ordinary Parkinson’s disease but a postencephalitic 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. Might L-dopa activate neurological problems some of these patients had had in the early years of their illness, before they were encased in parkinsonism?

  In 1967, with some trepidation, I applied to the Drug Enforcement Administration for a special investigator’s license to use L-dopa, still an experimental drug at the time. The license took several months to come, and for various reasons it was not until March of 1969 that I embarked on a ninety-day double-blind trial with six patients. Half of them would receive a placebo, but neither they nor I knew who would receive the real drug.

  But within a few weeks, the effects of L-dopa were clear and spectacular. 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 decided to make L-dopa available for any patient ready to try it.2

  At first, nearly all the patients’ responses were happy ones; there was an astonishing, festive “awakening” that summer as they burst into explosive life after having been almost inanimate for decades.

  But then almost all of them ran into trouble, developing not only specific “side effects” of L-dopa but certain general patterns of trouble too: sudden and unpredictable fluctuations of response and extreme sensitivity to L-dopa. Some of the patients would react differently to the drug each time we tried it. I tried altering the doses, titrating them carefully, but this no longer worked; the “system” now seemed to have a dynamic of its own. There seemed to be, with many of the patients, nothing between too much L-dopa and too little.

  I thought of Michael and his problems with tranquilizers (which damped down dopamine systems, while L-dopa activated them) when I was trying to titrate my own patients, finding the incorrigible limitations of any purely medical or medicational approach when dealing with brain systems which had seemingly lost their usual resilience or latitude.3

  —

  When I was a resident at UCLA, neurology and psychiatry were presented as almost unrelated disciplines, but when I emerged from residency to encounter the full reality of patients, I often found I had to be as much a psychiatrist as a neurologist. I had felt this strongly with my migraine patients, and I encountered it overwhelmingly with the postencephalitics, for they had a myriad of disorders both “neurologic” and “psychiatric”: parkinsonism, myoclonus, chorea, tics, strange compulsions, urges, obsessions, sudden “crises,” and gusts of passion. A purely neurological or a purely psychiatric approach with such patients would lead nowhere; the neurological and the psychiatric had to be conjoined.

  The postencephalitics had been in a state of suspension for decades—suspension of memory, perception, and consciousness. They were coming back to life, to full consciousness and mobility. Would they find themselves, like Rip Van Winkle, anachronisms in a world that had moved on?

  When I gave L-dopa to these patients, their “awakenings” w
ere not only physical but intellectual, perceptual, and emotional too. Such a global awakening or animation was in contradiction to concepts of neuroanatomy in the 1960s, a neuroanatomy that saw the motor, the intellectual, and the affective in quite separate and noncommunicating compartments of the brain. The anatomist in me, subservient to this notion, said, “This can’t be. Such an ‘awakening’ should not happen.”

  But clearly it was happening.

  The Drug Enforcement Administration wanted me to fill out standardized inventories of symptoms and responses to the drug, but what was going on was so complex in both neurological and human terms that such inventories could not begin to accommodate the reality of what I was witnessing. I felt a need to keep detailed notes and journals, as did some of the patients. I started carrying a tape recorder and a camera, and later a little Super 8 movie camera, because I knew that what I was seeing might never be seen again; it was crucial to have a visual record.

  Some of the patients would sleep for much of the day but be wide awake at night, and this meant that I too had to have a twenty-four-hour schedule. Although this led to sleep deprivation, it gave me a feeling of closeness to them, and it also allowed me to be on night call for all of the five hundred patients at Beth Abraham. This was a job that might involve treating a patient with acute heart failure, sending another to an emergency room, or requesting an autopsy if a patient had died. While there was normally a different on-call doctor every night, I thought I might as well be on permanent night call, so I volunteered for this.

  The administrators at Beth Abraham liked the idea and offered me, at a very nominal rate, an apartment in a house next door to the hospital—the apartment normally reserved for whichever physician was on call. This worked well for everyone: most of the other physicians hated being on call, and I was delighted to have an apartment which was always open to my patients. Staff members—psychologists, social workers, physiotherapists, speech therapists, music therapists, among them—dropped by frequently to discuss the patients. Almost every day, there were fertile, exciting discussions about the unprecedented events unfolding before us, which demanded unprecedented approaches from us all.