Three years ago, in January 2005, I suffered a serious traumatic brain injury. The injury placed me in a coma for ten days and the hospital for weeks more. The injury changed my life. Since that time I have looked for voices and means of expression of what I went through and continue to carry with me.
The Diving Bell and the Butterfly is the English translation of the French memoir Le scaphandre et le papillon written by journalist Jean-Dominique Bauby. Bauby served as editor-in-chief of the French fashion magazine ELLE. In December 1995 at the age of 43 his life changed. He suffered a massive stroke. The results of the stroke included complete and permanent paralysis of almost all his voluntary muscles while retaining nearly full awareness of his senses. Vision, hearing, tactile sensation remained absent any ability to act upon the information those senses provided. This rare condition is known as “locked-in syndrome”. For Bauby, his sole means of communication to the outside world was the ability to blink his left eye.
Using that one remaining ability, Bauby wrote and edited this book– painstakingly, tediously, letter-by-letter, two minutes per word, he wrote the book over the course of a year. The book gives voice to his thoughts and feelings about his life and the situation in which he found himself. The title serves as a clear description: the diving bell refers to the empty shell he considered his body, the butterfly refers to his spirit. The book was published in 1997. Two days after publication, Bauby suffered a heart attack and died. His astonishing book continues to give cheer to those who face life’s ultimately impossible odds and the confrontation of the sudden, merciless, fickle nature of life. The book serves as an inspirational reminder of mortality: the plain fact that swift and sudden changes can sweep away anything we might have taken for granted.
From the book’s back cover:
In a voice that is by turns wistful and mischievous, angry and sardonic, Bauby gives us a celebration of the liberating power of consciousness: what it is like to spend a day with his children, to imagine lying in bed beside his wife, to conjure up the flavor of delectable meals even as he is fed through a tube. Most of all, this triumphant book lets us witness an indomitable spirit and share in the pure joy of its own survival.