This is an early classic of the ‘illness narrative’ literature, albeit one written by a clinician. Twenty detailed case studies form the central section of this book, describing the use in the late 1960s of a new miracle drug for people with post-encephalitic Parkinsonism. But these are not dry clinical case studies in which signs and symptoms are listed and described, and then synthesised to form predicted rules of human response to a drug. Instead, the case studies are rich descriptions of historical people, whose words, individuality and priorities colour the pages. Sacks paints the manifold presentations of the ‘sleepy sickness’ and the awakening effects of L-DOPA as not just a series of symptoms, but as products of personal characteristics interacting with chemical and disease processes in real people in particular social contexts.
The individuals that Sacks describes are 20 out of the 200 post-encephalitic patients that he treated with L-DOPA between 1969 and 1972. They were admitted to Mount Carmel, a hospital in a New York suburb, with disabilities due to the Parkinsonism that they developed after contracting encephalitis lethargica – the sleepy sickness – in the 1920s. Along with varying amounts of rigidity and an impoverishment of movement, they also lost some freedom of thought and expression. The phrases they used about their experience before L-DOPA include reference to prison, heaviness, being caged or buried deep in the ground. Frances D said that her essential symptom was ‘that I cannot start and I cannot stop….. I no longer seem to have any in-between states.’ The sleepy sickness had often struck in their teens, with immediate or delayed Parkinsonian after-effects, so that while some finished school and started careers, e.g. as a cobbler, accountant, legal secretary, or had children, others had been severely disabled since adolescence, with no experience of adult life or relationships.
Sacks documents in great detail the nature of their abilities and disabilities before any drug treatment, and then the precise reactions of the twenty to the administration of L-DOPA. These varied hugely from person to person, according to levels of dose, and even in some individuals from course to course, since several of them had to be taken off the L-DOPA in the face of excitatory crises, before the drug was restarted after a break. The drug facilitates movement, but also many other aspects of activity, including thought processes, interest and attention, appetites (for food and sex), and even breathing. Without L-DOPA, the post-encephalitics showed rigidity of trunk and limbs, even of gaze, resulting in smallness and poverty of gesture, voice, expression and handwriting. With L-DOPA they rediscover the music of movement, finding a freedom and vitality that they had lost many years before. For a moment they find a great pleasure in life. “It’s a very sweet feeling, very sweet and easy and peaceful. I am grateful to each moment for being itself.” (Leonard L.) Disastrously, they also go on to develop uncontrolled drives, resulting in tics and choreic movements, chaotic and violent outbursts, increased speed and excursion of movement, euphoria and mania, and ‘libidinous’ thoughts and hallucinations.
The tragedy of the treatment with L-DOPA is that, for many of the people treated with it, the gap between the frozen Parkinsonian state and the post-drug manic euphoric state becomes smaller and less easy to find. George W. tells Sacks that “I feel like I’m on a tightrope, or like a pin trying to balance on its point. If you ask whether L-DOPA is good or bad for me I’d say it was both. It has wonderful effects but there is a hell of a ‘but’…” Those who have to come off L-DOPA have a deeper Parkinsonism than what they experienced before. It becomes apparent that we all use a vital neuro-chemical system of checks and balances, which enables us to select movements against a delicate background of postural tone, to experience both drive and rest, and that it is subject to pathology and disruption. What is more, this balance of drive and rest is a feature not only of movement, but also of our emotional drives and cognitive abilities.
At the beginning of the discussion following the case studies, Sacks feels the need to justify his qualitative, relativistic approach, presumably because of a perceived disapproval from contemporary scientific medical authorities. He refers to Leibnitz, John Donne, Wittgenstein and a host of other authors to decry a simple quantitative rule-based medical model. His pattern was the Russian neurologist A.R.Luria – Diary of a Mnemonist, and The Man with the Shattered World. Indeed he tells in his 1990 introduction of a complete absence of medical reviews for Awakenings on its first 1972 publication. Perhaps because Sacks needed to be correct and academic for his medical critics, he uses a highly technical (and, for some, off-putting) language to describe the signs and symptoms of Parkinsonism: palilalic, opisthotonos, tachyphemic, oculogyric, verbigerative, akathisic, acholalia, ptosis and so on. (Only some of these are defined in the glossary.)
The story of these people arouses much sympathy, and has a dramatic and tragic element. No wonder then that it has inspired a documentary film (1974), a feature film starring Robert de Niro and Robin Williams (1990), and even a stage play (Harold Pinter’s A Kind of Alaska). Sacks’ approach is much more than a tale of people with a disabling disease that demand our sympathy. People like Leonard L., Hester Y., and Frances D. are fully rounded individuals whom he knows as friends that he respects, and who have taught him much, and who live in his pages with dignity.
Sacks, O (1973, rev. ed. 1990, ppbk 1991) Awakenings, London, Picador
Awakenings (1974), Yorkshire Television documentary, dir. Duncan Dallas (now available from certain university libraries, and can be streamed from vimeo, clip here: https://vimeo.com/ondemand/awakenings )
Awakenings, (1990) feature film, dir. Penny Marshall, starring Robert de Niro, Robin Williams (clip here: https://www.youtube.com/watch?v=Hj52vD7KGxs )
Audio book available: https://www.learnoutloud.com/Catalog/Biography/Scientists/Awakenings/45524
Pinter, H (1982) A Kind of Alaska, one-act play