Oliver Sacks (1933–2015): A belated obituary

Two years ago, Oliver Sacks left us. With him, neurology and neuropsychology have lost not only one of their ablest popularizers, but also an important source of encouragement and inspiration. His accounts of neurological disorders have thrown new light on the creative and positive aspects of neuropathology and helped to liberate patients from feelings of unworthiness and inferiority.

His books brought Sacks acclaim and fame, but we should not forget that for a long time his popularity remained confined to a lay audience. His writings initially received little interest from his direct colleagues and often met with suspicion and contempt (Sacks, 1983, 2015). Many thought he romanticized neurological disorders and was heedless to the crude suffering they caused. In this way, he was felt to wrong these patients (Halliwell, 1999). Only later in his career he was widely appreciated as an original mind by his fellow neurologists, who finally acknowledged his contributions to neurology and neuroscience.

Apart from the numerous historical chapters, paragraphs, and footnotes in his books, Sacks wrote several papers on the history of neurology and neuroscience, for instance on Kurt Goldstein (1878–1965), William Gowers (1845–1915), Edward Liveing (1832–1919), and Sigmund Freud (1856–1939), which were published in various professional journals and edited books (Sacks, 1995, 1996, 1997, 1999). When this obituary appears, some of his previously uncollected papers may have been republished in the first of two planned volumes of his essays, which is scheduled for October 2017 (Sacks, 2017).

That Sacks got off the beaten tracks of his profession was unexpected and initially not a matter of free choice or contemplated decision. Writing for a lay audience almost began as an accident, as the result of the disapproval by his colleagues (Sacks, 1983, 2015). It all had to do with levodopa, which came on the market in 1968. At that time, Sacks was working as a consultant for Beth Abraham Hospital in the Bronx, New York, which still housed dozens of survivors of the devastating encephalitis lethargica (or Von Economo’s encephalitis) epidemic that ravaged the world from 1916 to 1927, claiming millions of victims (Arts, 2000; Vilensky, 2010). These residents suffered from a severe parkinsonism, known in the literature as “postencephalitic parkinsonism” (Casals, Elizan & Yahr, 1998; Vilensky, Gilman, & McCall, 2010a, 2010b). They spent their days in immobility, locked in their frozen bodies. Sacks decided to treat these living statues with levodopa. The results were frankly spectacular and aptly characterized by Sacks as “awakenings.” Patients who for many years had stayed motionless in their wheelchairs or beds suddenly came alive. For the first time in decades, they were able to speak fluently, to walk, and to dance. However, the side effects of the treatment, which appeared after a honeymoon period of just a few weeks or months, were as spectacular as the effects. Severe and disabling involuntary movements, as well as neuropsychiatric disturbances, developed in all but a few of the treated patients (Sacks, 1973). In Parkinson’s disease, these side effects appear much later, and are rarely as severe as in postencephalitic patients. At that time, none of the levodopa-treated patients with Parkinson’s disease had started to develop these side effects (Sacks, 2015). Sacks’ patients thus offered a forewarning of what was to come. What happened to them demonstrated that levodopa was not without risks. Understandably, Sacks was convinced he had something important to say. He wrote a series of conventional neurological papers and sent them to several journals. To his astonishment, all were refused. Moreover, they evoked plainly dismissive and hostile reactions. Sacks wryly concluded: “When I had nothing to say I could be published without difficulty; now I had something to say I was denied publication” (Sacks, 1983, p. 1969). How was he to understand this? Little by little, he figured out what had happened. Levodopa was just heralded as the first effective treatment for Parkinson’s disease—in fact, the first effective treatment for any neurological disease. Sacks’ papers couldn’t but ruin the party.

After this huge disappointment, it took many years before Sacks again ventured to offer anything for publication in the medical literature. However, he continued to meticulously write down his observations on his patients and recorded what they told him. His writer’s block ended when the editor of the BBC magazine The Listener asked Sacks to write an article on his experiences with postencephalitic patients. In one stretch, he wrote “The Great Awakening” (Sacks, 1972). Unlike his colleagues, the readers of The Listener responded with great enthusiasm. A new perspective opened before him and he made an important decision: he would tell his patients’ stories, enliven them with quotes, and add lengthy descriptions and analyses of their symptoms. He did not have to eschew literary, historical, or philosophical remarks. He allowed himself to follow in the footsteps of the great clinicians of the nineteenth century (Sacks, 2015).

When the book Awakenings appeared in 1973, it received enthusiastic reviews in the English press and was a critical success. Famous writers and playwrights praised its literary qualities. A television documentary of Sacks and his patients was made in the same year. However, it was received with an icy silence by the neurological community. An important exception was the Russian neuropsychologist and physician Alexander Luria (1902–1977), who had published a similar book in 1968 about the Russian mnemonist Solomon Shereshevsky (1886–1958) (Luria, 1968). He encouraged Sacks to continue on this new trail, for science needed to develop a “romantic” side. Its importance was that:

[r]omantics in science want neither to split living reality into its elementary components, nor to represent the wealth of life’s concrete events in abstract models that lose the properties of the phenomena themselves. It is of the utmost importance to romantics to preserve the wealth of living reality, and they aspire to a science that retains this richness. (Luria, 1979, p. 174)

The inspiration and encouragement by Luria was crucial for Sacks. For both of them, “romantic” science was not a departure from modern science or medicine; it enriched science. It was not an alternative to modern science or medicine, but a necessary, additional perspective. Luria and Sacks were firmly embedded in mainstream science. They simply observed that modern neuroscience and neurology become soulless and stultifying when patients are seen as nothing but their brains. They remind us that the experiences of patients are as important as their laboratory or neuroimaging results—not only when we want to be good doctors, but also when we aspire to be good scientists. Interestingly, many leading neurologists have adjusted their opinion on Sacks’ work and now share his convictions.

In a certain sense, Sacks was lost in time. He mostly felt at home among the great naturalists of the nineteenth century, like Charles Darwin (1809–1882), Alfred Russel Wallace (1823–1913), and Alexander von Humboldt (1769–1859), whose scientific works are as readable as novels. The textbooks written by the neurologists Sacks admired, such as Edward Liveing (1832–1919) and William Gowers (1845–1915), were also lively works, with detailed patient histories, written in literary prose. This was of vital importance, because at that time scientific works were produced for the educated lay reader as well. Without this broader audience, printing numbers would be too small and production costs too high.

Oliver Sacks sitting in the botanical garden in Amsterdam. The author thanks Mr. Bill Hayes for providing this picture. © Bill Hayes.

The emphasis Sacks laid on the positive, creative aspects of neurological disorders had an enormous emancipatory and liberating effect. According to Silberman, Sacks played a major role in the emancipation of people with autism spectrum disorders (Silberman, 2015). Likewise, his works had a liberating effect for people with Gilles de la Tourette and other neuro(psycho)logical disorders (Kushner, 2012; Halliwell, 1999). But even when we acknowledge Sacks’ role as an important popularizer and as a liberator or emancipator, we still are not doing him full justice. Especially for the busy neurologist or neuropsychologist, Sacks’ work is a treasure trove. His careful observations and meticulous accounts of patients’ experiences offer information and instruction that is difficult to obtain in a busy practice.

A tragic irony in Sacks’ life is that he liberated many from the burden of prejudice and pseudo-scientific portrayal, but was not able to liberate himself. He showed people with all kinds of disorders and peculiarities that much creativity and even beauty is hidden in their difference. He encouraged them to correct their negative self-image and to stop hiding their problems. But he was hardly able to cope with his own difference. Was he traumatized too much? In the Second World War, when London was continuously exposed to V1 and V2 attacks, his parents (Samuel Sacks [1895–1990], a physician, and Muriel Elsie Landau [1895–1972], a surgeon) did what most sensible adults in London did: they sent him off to the countryside. There, without his parents, the shy, clumsy boy was frequently bullied and battered. This must have left deep scars on his soul. When he reached adolescence after the war, there was another problem. The fierce rejection of his homosexuality by his mother burdened him with a lifelong sense of guilt and shame. After a brief, wild interlude in California, he remained cautious and celibate for almost thirty-five years and refused to answer questions about his sexual orientation. Finally, at 77, he met the love of his life in the writer Bill Hayes. The last chapter of On the Move (Sacks, 2015) offers a beautiful and surprisingly honest account of this romance. Thus, Oliver Sacks’ last case report is about himself. And unlike most case reports, this one had a favorable conclusion—indeed, a real American happy ending.

Acknowledgments

This article is based on an earlier obituary written in Dutch (Arts, 2016). The author thanks Kate Edgar for helpful comments on the text.