Jean-Dominique Bauby was an active, robust family man and editor of French Elle when at the age of forty-three he was brought low by a rare stroke of the brain stem. After his stroke, he remained in a coma for months, and when he woke he suffered from locked in syndrome. This is a condition when a person’s thought processes are still intact and fully functioning, but his or her body is unable to communicate those thoughts. In Bauby’s case, he could still blink an eyelid to share his thoughts, but to be honest, that’s close enough. Before his death, Bauby dictated this, his memoir, letter by letter with blinks.
This is a heartbreaking book and I don’t know how to review it. It can’t really be a review, because how can you review such a thing? It’s impossible not to feel for this man who had his life stolen from him so dramatically and so quickly. He describes how, just before his accident, he was caring for his elderly father, who could no longer leave his flat, comparing how he was being shaved to the way he shaved his father. They both expected the elder man to die first – neither realised then just how fragile life could be.
Bauby distills his life into a series of minutiae that none of us ever think of; how happy he’d be if he could just swallow his saliva or be able to tell whether his limbs are hot or cold. The huge effect that an indifferent nurse can have – whether they’ll ignore his frantic eyeblinks or try to work out what he wants, whether it’s just the television on or a more serious problem. The last day of his normal life has taken on a surreal significance, of course; he takes us through it step by step.
What I think amazed me most about the book was that he maintained his good humor, his compassion, and all the best of his human spirit. He’s understandably a little bitter, but he never turns the memoir into an outlet for complaints; all of his observations are tinged with humor. Most of all what struck me was his determined efforts to get better. It seems that brain stems do occasionally heal, but do so at a snail’s pace. He was working on making noises with his mouth again. Devastatingly, the poor man died two days after this book was published, and all his goals herein left me with a sense of both sadness and wonder, that a man so betrayed by his own body could continue to hope that it would serve him well again one day.
If nothing else, The Diving Bell and the Butterfly will leave you with a lasting appreciation for your own life, for your ability to speak and walk and laugh. I can’t imagine how heartless you’d have to be to walk out on a frantically blinking patient after reading this book – I’m not a nurse and wouldn’t like to be, but even so it made me think about how I treat others and how I’d like to be treated. This is such a worthy, if sad, book, which should be read by all.
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