The Diving Bell and the Butterfly
Jean-Dominique Bauby was just 43 years old when he suffered a massive stroke in his brainstem. In just a few moments he went from being the editor-in-chief of French Elle magazine to a institutionalized quadriplegic whose only physical ability was to blink his eyes. This state, known as Locked-In Syndrome, results in a person who is cognitively intact and able to perceive and understand everything happening to them and everything going on around them, but unable to move a muscle. The stroke left him completely dependent on others for everything and able only to communicate through a tedious series of blinks through the alphabet, one letter at a time to “say” anything. Nevertheless, once Bauby woke from a six week coma and was confronted with his new life, he began to live that life to the greatest extent that he could. He wrote this memoir by formulating the chapters in his head and then blinking out the words, letter by letter to a transcriptionist. In this amazingly light hearted book, without a shred of self pity or the slightest tone of the maudlin, Bauby describes his days and his mental trips through his past life. Though he is unable to swallow and is fed with a GI tube, he “tastes” the fabulous meals from his past. He recalls the soft touch and warmth of lovers, the joys of fatherhood, the love of classic music from his younger days, and so much more. This man with, what most of us would consider very little and with huge impediments to happiness and fulfillment, finds joy in every interaction, every sight, every experience, even those that do discourage him. He is no Professor Pangloss, painting a pretty picture of everything. When things are rough and dispiriting, he tells it like it is, but then counter balances these situations with descriptions of things that do work out and of people who truly go above and beyond to help him have a semblance of a life. The life that Bauby builds for himself in his locked-in state is, in many ways richer than the lives of countless people walking around in perfect health. His book is many layered and one can read it over and over and find something new each time. I read this twice and discovered dozens of new observations on life, love, and many other aspects of our humanity. This is one of the most inspiring books I have ever read and possibly the best book I read this year. Finally, in a way this is Bauby’s generativity document that he leaves to his friends and loved ones and, also, to all of us. He died peacefully two days after this book was published. I strongly recommend this beautiful piece of life’s work for anyone who wants to be inspired to live their life more fully.
