Book Review: The Diving Bell and the Butterfly

The Diving Bell and the Butterfly

was written by Jean-Dominque Bauby (1997)

I first heard about this book through word of mouth on Multiple Sclerosis blogs.  Why would someone who has MS read this particular book?  While this is not a book about MS, it is a book about extreme disability. It does capture the indomitable spirit of someone who is basically trapped by their body.  It is the memoir of a man who is completely paralyzed except for the use of one of his eyes to blink.  It is through this blinking that this book exists at all.

I suppose I am one who always insists upon lying on a psychological bed of nails.  I knew that reading this book would be emotionally cathartic for me.  I have a disease which impairs my movement.  I wanted to read about how this man survived not being able to move at all.

Here is a short synopsis of his story.  Jean Bauby had been a successful editor for the French version of Elle magazine.  He lived an exciting carefree life complete with money, fancy cars, and beautiful women.  In 1995, at the age of 43, he suffers a massive stroke which does not kill him but, instead, leaves him totally paralyzed.  His condition is rare and is called, "Locked in Syndrome" because he is basically locked inside his body.  His mind is still intact, however, and he must learn to live within his motionless body.  A speech therapist comes to his aid with a method for him to communicate using eye blinks.  It is through this method that he is able to slowly and painstakingly create this memoir of his experience. 

This book is also now a motion picture which I also had the chance to see.  Of course I will tell you that reading his words through his memoir was much more moving for me.

I read this book this past summer in one sitting while I was at the beach with my family.  By the end of it I am weeping.  I feel that somehow I had lost a friend.  In a note in front of the book they tell you that Jean-Dominique Bauby dies just two days after the French publication of his book.  I am glad he got to see it published. 

Of course while reading this I thought about how I would feel if I were in this situation and I don't think anyone really can.  We can only imagine through his words and even then, none of us can truly feel what he had to go through.  As I read I remember looking out to the sea and wondering what it would be like to not be able to run towards it or jump in the cooling frothy water.  I sat cross legged with the book on my lap in remorseful repose.  I began to think about the future and how none of us knows what is coming next.  One day you are fine and healthy and the next...well...anything can happen. 

The parts of his book which made me the most sad were the times he spent with his children after his stroke.  The very hardest thing for me to cope with having Multiple Sclerosis is the thought that I might not always be able to care for my children in the ways that I want to.  One of the most poignant passages in Bauby's memoir depicts a scene with his little boy Theophile: