A Life Worth Living? (The Diving-Bell and the Butterfly - Jean-Dominique Bauby)

Member Name: wigglylittleworm

Product:	The Diving-Bell and the Butterfly - Jean-Dominique Bauby
Date:	23/11/08 (223 review reads)
Rating:

Advantages: Beautifully written

Disadvantages: none

What is your worst fear? Mine is to suffer some kind of illness or disability that makes me unable to live an independent life and be trapped within a useless body. I suffer from bouts of sleep paralysis during times of stress, put simply my mind wakes up and my body does not. When that first happened it was terrifying, I would fight with all my strength to try and open my eyes or move my legs but my body would not respond, the whole time being aware of what is going on around me; now I am simply able to tell myself it is sleep paralysis and go back to sleep again. When I wake up in the morning I am always relieved to be able to get up and face the day but the fear is there that one day I will end up permanently in a similar state.

Jean-Dominique Bauby suffered a stroke on the 8th of December 1995 while out driving with his young son. The result for him was a catastrophic brain injury which led to him suffering from locked in syndrome, a condition where the body loses all of its movement but the mind remains intact. This was a cruel blow to a man in his prime, editor of the French edition of Elle magazine and father of two young children who until that moment lived a charmed life.

Bauby's new home is room 119 of the Berck-sur-Mer Hospital on the French Channel Coast, a rehabilitation centre. His prognosis is poor, patients nerves can regenerate at the speed of a hair growing meaning that in several years time he may be able to wiggle his toes again but for now his only movement is blinking his left eye (his right having been sewn shut) and swivelling his head from side to side. Every function needed to keep him alive is performed by a machine or carer, he breathes via a tracheotomy tube, he is catheterised and fed a liquid diet directly into his stomach.

I can imagine falling into deep despair if this was my lot but Bauby shows remarkable strength and courage in building a new life for himself in these terrible circumstances. He describes in vivid detail the care he is provided, the carers who attend to his limp body and the other patients in the hospital who refuse to make eye contact with him in the physiotherapy room. Of course such a life is frustrating, not being able to swallow the saliva that pools in your mouth or not being able to read just two of the frustrations he faces. It is also a deeply painful time for him, his friends and family visit and phone regularly but not being able to hug his children causes him the most pain.

Instead of descending into self pity Bauby writes letters to his loved ones, starts an association for people suffering from locked in condition so they can communicate with one another and writes the book I am reviewing. The title "The Diving Bell and The Butterfly" refers to his weighed down body and the fact that he can still hear the butterflies wings flapping in his mind. Writing it must have been an extremely long process, his only means of communication being a letter board with the letters placed in the order of frequency they are used in the French language. His editor would read out the letters one at a time and Bauby would blink when she read out the correct one and slowly the book took shape.

The book is beautifully written and is almost poetic at times. The book was originally written in French but the translation is wonderful with none of the clumsiness you can sometimes see with translations. It is a truly remarkable account of one mans life and his character and spirit really shine through on the pages. One of the hardest aspects of his disability was that he became invisible to many around him, his physical presence meant many would look straight through him but this book shows a mind that is as active as it always was with a rich imagination and dreams that carry him through his ordeal. Sadly Bauby died just two days after the book was published so could not see for himself what an impact his book had but it must be a comfort for his children to have a record of their fathers last months of life.

The book is short, just 136 pages long but is an extremely engrossing read. The version of the book I read is the Harper Perennial version which also contains obituaries written by his friends and more about the film based on the book. I really enjoyed the extras in this version as it let me know a bit more about the man he was before he became ill and made the story even more moving.

The Diving Bell and The Butterfly by Jean-Dominique Bauby (ISBN 0007139845) is available from Amazon.co.uk for £3.49.

Summary: A great book