The Diving Bell and the Butterfly

by Jean-Dominique Bauby


New York, Vintage Books, 1997

Week 52 Spiritual Memoir

The Diving Bell and the Butterfly is a memoir of a year in the life of Jean-Dominique Bauby, the editor of the French edition of Elle magazine. When he was 43 years old, he suffered a massive stroke which left him completely immobilized in what is called “locked-in syndrome.” This was his diving bell. His mind, on the other hand, was his butterfly. Through his mind, he was able to travel to all the far-flung places he had frequented before the stroke.

The task for the doctors and therapists was to release him from his diving bell in whatever way they could. Because he could move one eyelid, that movement became his communication device. With a speech therapist, they devised a manner of speech. She would read through the alphabet until she got to the letter he wanted; he would blink his eye and she would write the letter down until words and then sentences were formed. They used a frequency alphabet as opposed to an ABC alphabet. In French, the first three letters of the frequency alphabet are ESA.

He was determined to write a book to help explain himself to his children. A young woman named Claude was hired to help him put his thoughts on paper. The result is this small, very profound view of Bauby’s world--the diving bell that encases him and the butterfly of his thoughts. The short chapters tell of flights of fancy, frustrations, the pleasures of visits, and the irony of his life situation. He longs for repartee with his children, but the painfulness of the communication form makes humor difficult. He longs for a good meal, but in his memory, he is able to re-eat some of the best meals he ever had—without the calories. He cherishes his children’s letters, and pictures, and kisses, and kindnesses, and memorizes them so they are repeated over and over in his mind. He says that when someone calls on the telephone, he can listen to what they are saying “to intercept and catch passing fragments of life, the way you catch a butterfly.”

Through this book, the reader understands what they previously could only imagine—the “what ifs” of life. We are forced to imagine ourselves in this situation. Would we respond in such a creative way, or would we descend to anger and bitterness? He does say, “To keep my mind sharp, to avoid descending into resigned indifference, I maintain a level of resentment and anger, neither too much nor too little, just as a pressure cooker has a safety valve to keep it from exploding.”

On what level, then, do we appreciate life? If all but our mind were gone, how would we live? As I am writing this, I am trying to remember my favorite meal of all time. Can I remember it in minute detail? Can I savor each morsel? Can I remember the joy on the faces of my companions? To speak of something more mundane, can I remember what I talked about with my husband last night? What we ate for supper? What did I say to my son when I spoke to him on the phone yesterday?

The author died of pneumonia two days after the book was published. His legacy lived on in this small book and in the movie, The Diving Bell and the Butterfly, that came out in 2007, which is arriving from Netflix at our house today. Reviewers say that the movie captures the essence of the book in a very profound way.

Surprisingly, the book is not painful to read. It is an inspired look at the human spirit at its most basic, the will to survive and the desire to thrive. Somehow, when you are reading this book, the disappointments of the day fall away and you find yourself focusing on the very essence of life.

A review in the New York Times: http://www.nytimes.com/books/97/06/15/reviews/970615.mallon.html

An article about Bauby’s children and their mother since the book and movie: http://www.dailymail.co.uk/femail/article-511930/How-Jean-Do-butterfly-escaped-diving-bell-last.html

A review of the movie from my favorite movie reviewer, James Berardinelli:
http://www.reelviews.net/php_review_template.php?identifier=413