I am rereading Awakenings
, the Oliver Sacks book about encephalitis lethargica and L-DOPA. I first came across the story as a teenager and predictably found it completely fascinating. But I bounced off the book a bit the first time, probably because I was too young for it and also it has a lot of quite boring prefaces. But this time I found it entirely compelling, prefaces and all, and have been talking about it quite a bit, so here we are.
The story in brief, for those who don't know it (and also to give me an excuse to tell it again): after the First World War, there was a worldwide outbreak of Spanish flu, which killed more people than the war did, but has mostly been forgotten. And following that - and yet more forgotten - was an epidemic of an illness later called encephalitis lethargica, also called sleepy-sickness. It was prevalent between about 1918 and 1928, and has never really been seen since (beyond isolated cases). People who got it tended to fall asleep - for weeks or months. And then, when they woke up, they were changed in some deep, indefinable way: neither asleep nor awake, but something in between. They sat motionless in chairs and stared into space. They could be "posed", their arms outstretched, like living statues. They couldn't be woken, and some of them didn't appear even to age - so forty years later some had been frozen in place for decades, still looking largely as they had in the late 1920s when initially struck down by the disease.
In 1969, the neurologist Oliver Sacks - who was one of the few clinicians with responsibility for a large number of post-encephalitic patients, about forty of them, in a hospital in New York - hit upon the idea of giving them L-DOPA, which at the time was a brand-new drug. (It's a chemical precursor to dopamine that can pass through the blood-brain barrier.) So without a great deal of knowledge of what would happen, but that something
would, he started giving L-DOPA to these patients who had been out of the world for four decades.
And they woke up. This is the amazing part of the story, and Sacks writes about it like a dream: this glorious New York summer, in which these people not only woke up, and spoke, and moved, but became the people they had been. Sacks mentions one patient who had been a flapper, and the nurses going to the NYPL to look up the people and places she spoke about. He mentions another who had been a young Jewish emigrée from Vienna in the 1920s, and startled the staff because they had never known it until she spoke with an Austrian accent, and asked for a rabbi. It's just incredible to read about. And heartbreaking too, because L-DOPA turns out not to be quite the miracle that it promises. There's a honeymoon period, where Sacks and his colleagues are convinced it's just teething problems and they'll figure it out - and then the realisation that they can't stop the effect of the drug wearing off with time, or giving the patients side-effects that are too much to bear. So while some of the patients stay "awakened", others slip back into their pre-L-DOPA state, or into a coma this time. It's tragic and has an awful inevitable feel but it doesn't take on the feel of a Greek tragedy - you never lose sight of these people as real, individual human beings, not archetypes or fairy tales. I am not always convinced by Sacks' theoretical approaches, which draw a lot more from straight philosophy than I'm accustomed to seeing in a book that also purports to examine the scientific method. And it's also a book of its time and place, and a medicalised book - it doesn't always shine in a good light when considered through the lens of disability activism and theory - but Sacks is always interesting, always humane, and always interested
in individuals and their stories.
The coda to this is that I hadn't really gathered, the first time I read this book, that Sacks was queer (although I was reminded of his lifelong friendship with WH Auden, which is the kind of historical congruence I love). And then happydork
linked me to this beautiful article: My Life With Oliver Sacks
, by Bill Hayes, who was Sacks' partner at the time of his death. It's one of the loveliest things I've read in ages - a snapshot of queer work, a queer life, as well as a love letter and obituary. I adore it. i've been rereading a lot of formative things just recently - all the best-beloveds of teenage crazies, so The Bell Jar
and Prozac Nation
- but also Slaughterhouse Five
, Gender Outlaws
, Fear and Loathing on the Campaign Trail
, and Wild Dreams of a New Beginning
. (The last of which because I read a poem: Lawrence Ferlinghetti Is Still Alive
I feel like there ought to be some sort of conclusion to this thought, something about my foundering mental health, but actually I think it's just, there are always books, and that precious kinship of inquiring queers.