Title: The Diving Bell and the Butterfly
Author: Jean-Dominique Bauby
Published: Harper Perennial, 1997 (Originally by First Estate)
After suffering a massive stroke, Jean-Dominique Bauby, editor-in-chief of French Elle and the father of two young children, found himself completely paralysed and speechless. Able only to move one eyelid, he ‘dictated’ this remarkable book.
The Diving Bell and the Butterfly records Bauby’s lonely existence but also the ability to invent a life for oneself in the most appalling of circumstances. It is a remarkable book about the triumph of the human spirit.
Jean-Dominique Bauby dictated this book with ONE EYELID. One freaking eyelid. You hear that and go ‘oh gosh that would be difficult’. But thinking about it seriously, it would have taken absolutely forever. That’s one LETTER at a time. Not one word, one LETTER. It’s just staggering. Must have taken an incredibly long time, and a lot of patience. And this is how he communicates with everyone.
After having a stroke, he is left suffering ‘locked in’ syndrome. Completely awake and coherent, but unable to communicate. He describes it aptly as ‘imprisoned inside his own body’. People have to do everything for him, around him, he is not included in his own life.
I really enjoyed this book, maybe because I’ve worked in a Neurology unit before and have seen the damage that a stroke can do, so I understood it to some degree. I can say I’ve never seen someone with locked in syndrome, but truthfully? I have no idea what people who cannot communicate can comprehend. Communication difficulties like word finding difficulties, inability to speak, inability to understand… It’s a fairly short book (139 pages in my edition) which makes sense. It is a movie too, which I’ve seen but it’s been a while. Should watch that again.
This is a book I would definitely recommend but understand you have to put a lot into it yourself.
Have you read The Diving Bell and the Butterfly? What did you think?