When I was about twenty my flatmate, Laura, read a book called ‘The Man Who Mistook His Wife For A Hat’ by neurologist and writer Dr Oliver Sacks. When she finished it she suggested I should read it too.
It was the first time I’d read anything about neuroscience and I was fascinated by the accessible anecdotes and case studies Sacks described. It’s a long time since I read the book but I distinctly remember the feelings of awe and anxiety it generated.
I’d never really thought too much about brains, mine or anyone else’s. Oliver’s writing was my introduction to the workings of this incredible organ. He made me aware of its fragility, and the enormous impact small changes can have on our perception, emotions, movement and sense of self.
In the book he wrote about ‘Witty Ticcy Ray’ a jazz drummer with Tourettes. This was the first time I’d heard of the condition. What I don’t remember is recognising the description of, “Strange motions and notions: tics, jerks, mannerisms, grimaces, noises, curses…and compulsions” as having anything to do with the battle I was beginning to have with my own body, which had begun to wriggle uncontrollably at night, with my limbs folding and stretching suddenly.
I’d begun repeating the R Kelly lyric, ‘I believe I can Fly’ over and over too, but another decade passed before I eventually confessed to Laura that this (which she always thought of as our ‘shared thing’) was in fact an early vocal tic.
I wouldn’t say reading ‘The Man Who Mistook His Wife For A Hat’ led to an ‘I have Tourettes’ epiphany, but it contributed vastly to my understanding of the condition and sowed the seed that what I was experiencing might have a neurological basis.
Years later when I was diagnosed with Tourettes I went back to Oliver Sacks’s work. This time it wasn’t through his own writing but through that of Lowell Handler, a photographer with Tourettes who travelled with Dr Sacks, meeting and photographing people with the condition in the US and Canada. It was through his book Twitch and Shout that I got to know a lot more about Tourettes and the lives and experiences of people living with tics.
I was looking for something other than the polarised positions of mockery and medicalised descriptions, which dominated what I’d found about Tourettes. Sacks’s writing, films, and exploration of the brain in relation to music and creativity offered radically different perspectives, and I lapped them up.
When Dr Sacks first began working as a neurologist, Tourettes was considered an extremely rare, if not ‘mythical’ condition. He once wrote that it was one of a number of conditions, ‘that could not be accommodated in the conventional frameworks of medicine, and therefore… were forgotten and mysteriously ‘disappeared’.’ He became interested in Tourettes through his work with patients affected by Encephalitis Lethargica, also known as ‘sleepy sickness’. He discovered that giving these patients L-DOPA transformed and ‘awakened’ them, but also led to tic-like movements – Tourettism. This research came to public attention through his book ‘Awakenings’.
Witty Ticcy Ray was the first patient with Tourettes that Dr Sacks met. He wrote, ‘The day after seeing Ray, it seemed to me that I noticed three Touretters in the street in downtown New York. I was confounded, for Tourette’s syndrome was said to be excessively rare. It had an incidence, I had read, of one in a million, yet I had apparently seen three examples in an hour. I was thrown into a turmoil of bewilderment and wonder: was it possible that I had been overlooking this all the time, either not seeing such patients or vaguely dismissing them?’
Oliver’s work was key to Tourettes being recognised and better understood both by other doctors and by the wider public. And although his writing hasn’t always been to everyone’s taste, and he’s been criticised both for exploiting his patients’ experiences as well as for not being scientifically rigorous, his ability to make neurology accessible has undoubtedly had a major impact on many people’s understanding of the brain, the mind, and of themselves.
He’s certainly played an important part in my journey, so it was with sadness that I learnt yesterday of his death, from cancer, at the age of 82.
While I’ve been writing this post my fist has been pounding my chest as often as my fingers have typed the words, and while my thoughts have been constructing my sentences, my mouth has been involuntarily listing the contents of a lot of different sacks:
“Sacks of bears.”
“Sacks of rice.”
“Sacks of period dramas.”
“Sacks of insight.”
Dr Oliver Sacks, I’m very grateful to you for your curiosity, your skill and for your inspirational way of bringing the wonders and struggles of the brain to the attention of us all.