The Diving-Bell and the Butterfly by Jean-Dominique Bauby

Paperback, 132 pages
Published June 23rd 1998 by Vintage (first published 1997)
Original title: Le Scaphandre et le Papillon
Translated by Jeremy Leggatt

Blurb: "In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young childen, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem. After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.

By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an "inexhaustible reservoir of sensations," keeping in touch with himself and the life around him.

Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly.

This book is a lasting testament to his life."

I have to admit, my first question when I saw the title of this book was "What is a diving bell?" Allow me to show you. Diving bells were used to transport divers to the depths of the ocean. The author, Jean-Dominique Bauby describes his paralysis as "something like a giant invisible diving-bell [holding] his whole body prisoner". Once I saw what it looks like the image was a lot stronger for me, as I imagined the weight of it making his limbs impossible to lift and confining him in place.

This is an incredibly moving memoir. Jean-Dominique transitioned effortlessly (or so it seems while reading) between memories, his day-to-day existence and the escape his mind provided for him. He describes his mental escape from his harsh reality: "when blessed silence returns, I can listen to the butterflies that flutter inside my head".

Jean-Dominique dictated this book with hope but also eloquently depicted his moments of despair and frustration, sometimes with humour. Imagine the frustration of a fly landing on you and not being able to get it off, and the small actions that represent every decision we make; to turn the volume up on the television, to close the curtains, to wash yourself and every other task that most people can do without thinking. The author often writes about food too, as something that he misses tasting and savouring rather than nutrients pumped into him to keep him alive. He also made an observation that while he feels the same, the people who have met him since he was ill, can have little idea of the person he was. The most poignant moments for me were him listening to his very elderly father speaking to him down the phone and not being able to reply and the overwhelming need to hug his son.

I think it's incredible that he wrote this memoir and memorised it before dictating it letter by letter to bring his thoughts to the world. He also set up ALIS (Association du Locked-In Syndrome) to show that his illness was not an obstacle to life. The charity raises money for people with locked-in syndrome to help them to live their daily lives in as much comfort as possible.

I thought this was a beautifully well-written insight into the mind of someone who refused to give up despite all the adversity in his life. 8 out of 10 from me.