The Diving Bell and The Butterfly

I am sharing a few thoughts on this short AMAZING book that I read last year. This book is moving, it is emotional, and it is based on the real-life store of Mr. Bauby. If you have read this, please like and comment below.

The Diving Bell and the Butterfly take you into the extraordinary mind of one man, Jean-Dominque Bauby. In 1995, Mr. Bauby suffered a stroke at the young age of 43 and proceeded to be diagnosed with “locked in syndrome”. Unable to communicate with anything but his left eyelid, he documents memories of the past and the present, with all things imaginative and inviting.

What can you say about this amazing book that is rightfully called The Diving Bell and the Butterfly that has not been said before? It takes your imagination through the mind of a colorful man whose life ended too soon. The man was Jean-Dominque Bauby and the life he led came to an end in 1995. But before that, he suffered from “locked-in” syndrome. Locked- in syndrome as defined by NORD (National Organization for Rare Disorders) is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. (retrieved from https://rarediseases.org/rare-diseases/locked-in-syndrome/) A man whose words were so descriptive with sights and sounds, you could picture everything through his eyes. Naval Hospital Berck-sur-Mer, located along the French Channel, was where Mr. Bauby was housed for long-term care following his stroke. After the stroke a coma ensued for 20 days and when he woke up he had only the use of his left eye-lid. And with this small movement, he was able to document his day to day life, as well as memories that he held dear in extraordinary detail. He describes himself as being reduced to a jellyfish and horrible to behold. Bauby goes on to describe the first time he saw himself as someone appeared to have emerged from formaldehyde, with a twisted mouth and one eye sewn shut. But those who held him dear knew differently. His mind was full of love, laughter, and fond memories. Let’s start with the symbolism of the actual time of this book.

Bauby stated “My diving bell becomes less oppressive and my mind takes flight like a butterfly”. (p.5) Personally, I had never heard of a head being labeled a diving bell, to be honest, that was when I first knew I was going to love this book. I envisioned his description of Cinecitta as magical. Cinecitta is described by Bauby as a deserted terrace with balconies that “opened onto a landscape heavy with the poetic and slightly offbeat charm of a movie set” (p .29) The movie set is filled with suburbs described as a model train set, and buildings that he compares to a ghost town. He goes on to describe the sea that foams “such an incandescent white that it might be the product of the special-effects department”. (p.29) Now can you just picture looking down and seeing such a place? Bauby imagines himself a director and goes in in detail to rework some scenes from different movie.

This was a deep read and personal journey for me. As this was penned by a man who, for me, lived through hell. In my mind, and I have imagined this scenario and how gut-wrenching it must have been. To have your body fail you and your mind be wide awake. To have to wake up one day so scared, because you were fine before and now it’s foreign. To have to only communicate with one eye-lid, when your mind is as active as it was before. Memories so sacred, you cling to them and relive them over and over because you cannot feel or touch loved ones anymore. Yet the memories are so warm, like a scarf around your neck when the leaves are falling outside on a chilly November day. His detailed description of past events and memories are so alive with colors and personal phrases from him, that I could see everything clearly.

 

Bauby, J. (1997). The diving bell and the butterfly. New York: A.A. Knopf.

Locked In Syndrome – NORD (National Organization for Rare … (n.d.). Retrieved October 22,

 

 

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