Debreifing: The Diving Bell & The Butterfly (aka: Le scaphandre et le papillon) by Jean-Dominique Bauby

Posted on November 11, 2008. Filed under: Books, Personal Reviews | Tags: , , , , , , , , |

What is it like to be locked-in? How is it to suffer a stroke at a young(er) age and live your remaining moments a prisoner in your body? Bauby offers us a window to look through and watch him live in this fashion. Bauby was a successful editor-in-chief of Elle (fashion magazine), living in France. He had a blessed life with wonderful children and then suddenly, while driving he suffers a life-altering stroke that drives him first into a coma and then leaves him to live with Locked-In syndrome for the remainder of his life.

The book is simple in that it is a simple man’s story of his life. Daily events and nothing very earth-shattering. But it is gripping. You are drawn into this story because of what this story means and is about. To write this story Bauby had to blink to a transcriber  using the French Language Frequency Ordered Alphabet (e, s, a, r….). This transcription worked by the transcriber reciting through the modified alphabet and Bauby blinking when the desired letter was reached. (Wikipedia has a good cliff notes’ version of the history of this monumental book ) . Knowing how hard it was for Bauby to record his thoughts makes every page worth savoring and each letter becomes so important when you think of how difficult and important this was to Bauby.

The story moves through the daily life and rituals of a person suffering Locked-In syndrome. Bauby is plagued by troubles and there is very little he can do to voice his opinion on pain, love, or life in general but to blink. Blinking is his voice, and he can only blink one eye. We are able to chronicle Bauby’s life through his doctor visits, bath time rituals, television programming, his inner games, and his visitors. In the end Bauby relives and retells the fateful day that he had his stroke, it is interesting to see what he remembers from that day – to see which details are still important to him.

Bauby understands that his condition may scare many people away and additionally that this condition also prevents him from finishing his life the way he planned. He still works for Elle, in his mind, from his hospital bed – still goes on business vacations and even ‘visited’ Hong Kong for the first time!

This story is not about learning something profound about life. Bauby suffers locked-in, it goes without say that he thinks life is precious and that he has learned the value of all the past moments he has let get away from him, that is not what he fills the pages of his memoir with. He fills it with the new ordinary. The ordinary for him is what is extraordinary for us. He sounds and mentally functions like he did prior to the stroke, but he can not express these thoughts through any other means than blinking. This life, his normal, is something that feels to him like a diving bell – he is trapped in his body, in this diving bell, while his mind is like a butterfly, free and vivid.

This is a touching story, and one of the few written about locked-in syndrome. It offers a peek into a successful man whose life was changed permanently, and still he is successful in his writing, and blinking.

Grade: B


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