Jean-Dominique Bauby was the editor of French fashion magazine, Elle, the father of two young children and an all-round successful, enigmatic man when, in December 1995, at the age of 43, he suffered a stroke that left him with Locked-In Syndrome. This meant his body was paralysed, but his mind remained intact, he was literally a prisoner within his own body. All he could do was turn his head slightly and blink his left eye.
Opening sentence: Through the frayed curtain at my window a wan glow announces the break of day.
The Diving-Bell and the Butterfly is the book he wrote while in hospital in July-August 1996. When I say wrote, I mean he composed and edited the entire book in his head, then dictated it to his speech therapist, Claude Mendibil. He dictated it by using his only means of communication – his left eye. Using a special version of the (French) alphabet that placed the most-used letters first, Jean-Dominique would blink his left eye at the letter he wanted, Claude would write it down, and in this way, he wrote his book. That alone is an outstanding achievement, but what makes this even more extraordinary is that the book he wrote is just beautiful to read.
The chapters are a mix of his observations, memories and imaginings. He writes so eloquently about the anguish of not being able to talk to his friends and family and that even though he can’t move he, ‘need(s) to feel strongly, to love and to admire, just as desperately as I need to breathe.’ To help his loved ones understand this, he starts a monthly newsletter so they, ‘can join me in my cocoon.’ They write back and their letters are a touching source of great joy for him.
When describing his reality, he is open and honest. There is a heart-breaking paragraph when he’s looking at his son and can’t bear that he can’t hug him, ‘There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible.’
You just can’t begin to imagine the reality of living like this, but what struck me is that this is in no way a book full of self-pity. His stories and memories are engaging, moving, often funny and witty and really capture the spirit of this inspiring man.
Jean-Dominique tragically died from pneumonia two days after The Diving-Bell and the Butterfly book was published in March 1997, but what a wonderful legacy to leave. This is a truly remarkable book that I know I’ll go back and read again.