Jean-Dominique Bauby - The Diving Bell and the Butterfly

Review by Ro Guru Bennett on show 16th Sept 2010
This book was written by Jean-Dominique Bauby who was the editor-in-chief of the French magazine Elle. At 43, Bauby was witty, charismatic and successful and the father of two young children. Then tragedy struck. In his own words, ‘the life I once knew was snuffed out on Friday 8th December last year. Up until then I had never even heard of the brain-stem. I’ve since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. I was brutally introduced to this vital piece of anatomy when a cerebro-vascular accident put my brain-stem out of action.

In the past it was known as a ‘massive stroke’ and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as ‘locked-in-syndrome’. Paralysed from head to toe, the patient, his mind intact, is imprisoned inside his own body, but unable to speak or move. In my case, blinking with my left eyelid is my only means of communication.’
Bauby did communicate - he wrote this book with the help of ESA. This is where each letter of the alphabet is placed according to the frequency of its use in the French language. This is how Bauby describes the system: ‘It is a simple enough system. You read off the alphabet (ESA not ABC) until with a blink of my eye I stop you at the letter to be noted. The manoeuvre is repeated for the letters that follow so that fairly soon you have a whole word and then fragments of more or less intelligible sentences. That at least is the theory. But the truth is that some visitors fare better than others. Because of nervousness, impatience or obtuseness, performances vary in the handling of the code (which is what we call this method of transcribing my thoughts). Crossword fans and Scrabble players have a head start.’

Even from this tiny extract we get a glimpse of his character and wit. But beside the humour there is horror - for instance when he describes waking one day to discover his right eye being sewn shut to prevent him developing an ulcerated cornea.

Then there is the frustration. he writes: ‘Sunday. If the TV is turned on, it is vital to choose the right channel. It is a matter of strategy. For three or four hours are likely to go by before the return of the kindly soul who can change channels. Sometimes it is wiser to forgo an interesting programme if it is followed by a tearful soap opera, a silly game show or a raucous talk show. Violent applause hurts my ears.’ ... ‘A very black fly settles on my nose. I waggle my head to unseat him. He digs in. Olympic wrestling is child’s play compared to this. Sunday.’

Then there is the pathos of spending Father’s Day with his children: "Today we spent the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad."

In many ways it’s a heartbreaking book, but Bauby’s strength of character, resilience and humour shine through it.

I first read it a few years ago and it touched me greatly at that time because my brother had had a stroke which left him in a similar state. I wished that I had read it before my brother died, maybe we could have communicated with him.
Then recently I watched the film and decided to read the book again and the impact was just as great.

Sadly, Jean Dominique-Bauby died of a heart attack on March 9, 1997, two days after his book was published in France.
Review by Guru Bennett