The Diving Bell and the Butterfly: A Memoir of Life in Death

Author: Jean-Dominique Bauby

Rating: ⭐ 5/5

Date Read: 2012/07/18

Pages: 132

As I turned the last page of this book, I couldn’t help but feel a bit guilty. Jean-Dominique Bauby, who suffered a stroke that left him unable to talk or move, painstakingly dictated his memoir by blinking, over the course of months. I finished reading it in an afternoon.

At the age of 44, Bauby, the former French Elle editor in chief, had a stroke that damaged his brain stem. Here’s a bit of a refresher on neuroanatomy: the brain stem is an evolutionarily ancient structure at the base of the brain, right before the brain becomes the spinal cord. Newer, cortical areas of the brain are involved in recently evolved functions, such as language and planning. Deeper structures control more basic functions, such as movement, respiration, and circulation. Strokes that damage cortical areas are no picnic, but the brain is plastic enough that skills can often be relearned. Strokes that damage the brain stem, however, are catastrophic.

Following the stroke, Bauby became locked in to his own mind. His locked in syndrome meant that he was unable to move, unable to speak. He was luckier than others with the syndrome: he could blink his left eye, and he learned to move his head 90 degrees to the left.

His memoir consists of a series of non-linear vignettes that deal with his life, both before and after the stroke. He speaks of the nurses, his children, travels he went on before the stroke, former lovers, old friends. During a particularly moving scene, he writes about the imaginary meals he eats (due to the stroke, he has to be fed through a feeding tube). Because he memorized each chapter before dictating it, he was forced to be concise. His brevity adds a haunting quality to the memoir.

This book will be of interest to almost anyone, but especially those of us who are interested in the brain. Psychologists, neuroscientists, and neurologists in particular should read this book. It’s amazing to see what a rich inner world can be created by those who the outer world writes off as close to vegetative.