The Diving Bell and the Butterfly

Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death. Paris: Vintage. 1998. Print.

First Sentences:

I had never seen so many white coats in my little room.

Description:

Sometimes the parts that make up the whole are overwhelming to contemplate. The number of bricks individually laid to make a house, the millions of railroad ties in a mile of train track, the knots and strings woven into Persian rug. Like an optical illusion, sometimes it is difficult to see that the forest is made up of thousands of trees.

To write The Diving Bell and the Butterfly: A Memoir of Life in Death, author Jean-Dominique Bauby, a locked-in former editor for Elle fashion magazine in Paris, "dictated" each individual letter of the book in a unique way. After a massive stroke left him without movement in all body parts from the neck down and took away his ability to speak, Bauby wrote this book by blinking his left eye to indicate each letter to compose each word. It was the only body part he could control. 

Claude Mendible, who assisted Bauby in recording these letters, cleverly created a special display of the entire alphabet rearranged by frequency of letter use. He then held this display up for Bauby to see and carefully recited or pointed to each letter until Bauby blinked at his choice to start a word. Then the process was repeated for the next letter of that word, then the next, then the next ... and on and on to create The Diving Bell and the Butterfly, Bauby's 132-page memoir. Unbelievable.  

Can you imagine the effort, the tedium, the self-control, the dedication to create an entire book in this manner? Bauby spent hours writing and rewriting each essay in his mind while lying alone and immobile in a hospital bed in Berck, France, before Mendible arrived to slowly transcribe his thoughts into this book.

And what a beautiful, sensitive, thought-provoking book of short essays Bauby created. Structured loosely around the daily rhythms and scheduled "events" in his locked-in hospital world, Bauby also lets "the butterfly" of his imagination and thoughts soar or wallow and writes whatever he feels at that time. He contemplates his relationships with the mother of his two children, his kids, his new companion, and the hospital staff. He describes his own emotions and the appearances of other patients glimpsed while rigidly strapped to his wheelchair during short excursions in the building. And he reflects on the tragedy of his current status and the new life he knows he will lead forever.

I need to feel strongly, to love, and to admire, just as desperately as I need to breathe. A letter from a friend, a Balthus painting on a postcard, a page of Saint-Simon, give meaning to the passing hours. But to keep my mind sharp, to avoid descending into resigned indifference, I maintain a level of resentment and anger, neither too much not too little, just as a pressure cooker has a safety valve to keep it from exploding.

But there is humor, too, in Bauby's essays:

I've lost sixty-six pounds in just twenty weeks. When I began a diet a week before my stroke, I never dreamed of such dramatic result.

The smallest of situations or actions can bring Bauby pleasure or sadness, and he relates both with clarity and power:

Having turned down the hideous jogging suit provided by the hospital, I am now attired as I was in my student days. Like the bath, my old clothes could easily bring back poignant, painful memories. But I see in the clothing a symbol of continuing life. And proof that I still want to be myself. If I must drool, I may as well drool on cashmere.

He lives as if in a "diving bell," so weighed down it is impossible for him to move. Yet the butterfly of his imagination keeps him sane and fills book with his soaring thoughts.

Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to a meal at any hour, with no fuss or ceremony. If it's a restaurant, no need to call ahead. If I do the cooking, it is always  success.

The stories he relates, from a Father's Day with his family, to visits from uncomfortable friends, to his days at "the Beach Club" (a small bit of sand overlooking the ocean outside the hospital where he can sit and luxuriate in the smells of the world), to the last time he saw his father and his own tender memory of shaving him, are essays so intimate and strong they are almost poetry to read. Quiet passion, astute observations, and strong opinions are all there, but again the concept of the effort made to create these beautiful essays is almost overwhelming.

It is not until the final essay that we learn exactly what happened on that December 1995 day when the stroke occurred and Bauby went into a 20-day coma. 

How can I begin to recall those long futile house, as elusive as drops of mercury from a broken thermometer? How can I describe waking for the last time, heedless, perhaps a little grumpy, beside the lithe, warm body of a tall, dark-haired woman?

He emerges from this trauma to learn of his locked-in status. It is a cruel fate, but one he does not consistently dwell on. He immediately works to learn how show anyone he is still thinking, feeling behind his useless body. He knows it is vital to communicate with the world to preserve his self-dignity and humanness despite his limited capabilities.

The Diving Bell and the Butterfly was published to rave reviews in France in 1997 and later made into a poignant movie. Tragically, Jean-Dominique Bauby died of an infection two days after the book's publication. But his will, his thoughts, and his passionate writing remain behind for all in this beautiful work.

Happy reading. 

Fred

www.firstsentencereader.blogspot.com

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If this book interests you, be sure to check out:

Pistorius, Martin. Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body

True memoir of a young man who contracts a mysterious illness that causes his voice, body, and all movement to be rendered uncontrollable, even though he is fully aware and thinking inside. Misdiagnosed for ten years, he eventually is able to communicate through a compassionate nurse and tell his fascinating story.

Scalzi, Joe. Lock In

Set in the future when locked-in people (paralyzed and fully sentient but unable to respond) are common due to an international pandemic infection, Lock In tells the story of one such person who is an FBI agent and conducts his investigations via a robot controlled by his mind as his inert body lays in a protective bed miles away. Fascinating. (previously reviewed here)