on May 8, 2006
The Diving Bell and the Butterfly (New York, 1997: Knopf) probes the delicate, sometimes permeable, line between a meaningful life and the meaning of life. Author Jean-Dominique Bauby, whose brain survived a cerebrovascular accident--a massive stroke--dictates the story to his amanuensis six months after the catastrophe.
In the blink of an eye, he lost the life he knew and loved; in thousands of blinks of his left eye-the only part of his body that still functions normally-he reclaims the beauty of his life and of life itself. By blinking, Bauby indicates the letters that make up the words that make up the story that describes the meaning of a meaningful life.
Bauby communicates in this way because he suffers from locked-in syndrome, the result of a rare stroke to the brainstem. After 20 days in a coma following the stroke, Bauby awoke to find that his rich mind, his wit, and his passion for life survived intact inside an immobilized body-a diving bell or carcass, by his own account.
He is fed by a feeding tube and lives at the mercy of the hospital staff and the attention of loved ones and friends who make their way to Berck, a seaside town disconnected from the highway system to Paris.
He is isolated in many ways, but he knows how to isolate himself even further. When his emotions overcome him, he can disguise the tears that flow as a mere watering of the eye. On one day, a small reminder of his life before the stroke can bring him to tears, but on another, he could laugh at it. His emotions are as distorted as his perceptions sometimes. The mere scrape of a shoe on the floor in the corridor can be deafening to him, but who can know that? The sight of his disfigured face reflected in window glass can horrify him, but who can know that? The indignity of being jostled about like a side-show freak for a quick sponge batch can depress him, but who can know that?
The editor-turned-author introduces the reader to his passion for life early in the book when he describes each new day: "My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set off for Tierra del Fuego, or for King Midas Court."
Bauby,44, had been the well-traveled editor-in-chief of the French edition of the international fashion magazine Elle when he suffered the stroke in December 1995. More than that, he had been the father of a 10-year-old Theophile and 8-year-old Celeste, the connoisseur of fine food and high-end automobiles, the son of an adoring elderly father.
For all that, though, much of Bauby's story--what he calls "bedridden travel notes"--reminds the reader that ordinary things make life meaningful: loved ones' patient attendance to our needs, the respect of the people around us, a change of scenery now and again, a trip to the beach, the opportunity to read a good book, the smell of French Fries. Life is in many ways an illusion--or a sequence of illusions.
The Diving Bell is a sequence of 28 vignettes that capture Bauby's frustration with his condition and weave in details of his life before the stroke. He was about to have a "man-to-man" talk with Theophile about his moving out of the family home, to help the child understand the brokenness of their familylife, but then he suffered the stroke. In this moment Bauby brings the reader face-to-face with the unfinished business of his life--unresolved hurts, misunderstandings, confusion, dreams. reflections, memories. He is aware these things will stay in the amber with him.
The reader sees, too, that life is in the hospital, the wheelchair, and nowhere else, as Bauby points out in the final chapter. There is no indication of the lithe, dark-haired woman's being present in his life, though she occupies pride of place in the prologue. There is the hope, though, that friends returning from vacation will return to him with stories or send him letters. That his place in the world he knew is somehow still there. He holds onto that hope despite his awareness that his life is now the hospital and the strangers who work there and who may or may not attend to his needs depending on the degree to which his condition makes them uncomfortable.
This is perhaps one of the hardest truths of his experience, a truth that drives home the agony of his achievement with the speech therapist--his ability to grunt out the lines of a nonsense rhyme about a kangaroo. A miracle on one level, yes. On another, it is absurd, struggling to say words that bear no relationship to the truth of a complex and beautiful soul.
Bauby died two days after the French publication of The Diving Bell in 1997. Perhaps there was no more to say.