The Diving Bell and the Butterfly

...an unknown face interposed itself between us. Reflected in the glass I saw the head of a man who seemed to have emerged from a vat of formaldehyde. His mouth was twisted, his nose damaged, his hair tousled, his gaze full of fear. One eye was sewn shut, the other goggled like the doomed eye of Cain. For a moment I stared at that dilated pupil, before I realized it was only mine.
Jean-Dominique Bauby had the life that most of us might have wanted. He was editor of the international fashion magazine Elle, father of two children, a man of taste and wit. He lived in Paris, ate and loved --- as he lived --- with that peculiar French gusto.
But, one day, in 1995, on his way to supper with his son (wine and oysters), Bauby passed out. He woke up in a hospital in Breck-sur-Mer, with "locked-in syndrome."
The Merck Manual says that locked-in...describes a condition in which patients remain awake and sentient but because of motor paralysis in all parts of the body cannot communicate except possibly by coded eye movements.
Bauby, a man of words who can no longer speak. A man of taste who must now have the nutrients passed by tube into his stomach. A man of vigor, in a body that is moveless except for the right eye. With which, using a special code devised by him, he wrote the tale of his new existence.
The Diving Bell and the Butterfly is rich with descriptions of the emotions that you and I might experience, especially those of us who have our own disabilities. Despair at the "helpers" who don't help. Grief, especially when we meet with people from Before. Occasional wry humor at our strange new plight. And fantasy. This, on his new internal life:
Far from such din, when blessed silence returns, I can listen to the butterflies that flutter inside my head. To hear them, one must be calm and pay close attention, for their wingbeats are barely audible. Loud breathing is enough to drown them out. This is astonishing: my hearing does not improve, yet I hear them better and better.
I suspect that one test of great disability literature is how it deals with grief, the sadness that must overwhelm us all when, despite all attempts otherwise, we are forced to acknowledge the truth of our situation.
Many writers fall into the trap of sentiment, or fake hope. Some, like the late Andre Dubus, pretend there is no sadness, only bitterness. ("I stay angry a lot," he once told Susan Stamberg). Nancy Mairs, doyen of the East Coast School of Agony Writing, claims no earth-shaking grief, just an uneasy acceptance. Others, like John Callahan, temper woe with a deliciously cruel black humor.
Bauby can be bittersweet too. When he is invited by his son to play "Hangman," he says, "I ache to tell him that I have enough on my plate playing quadriplegic..." At another point, he says, "...henceforth I belonged on a vegetable stall and not to the human race."
But, in contrast to these other writers, Bauby tells us that it's OK to grieve:
...my son Theóphile sits patiently waiting --- and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Theóphile. Don't be scared, little man. I love you...
Bauby died a year ago. But he left us a fine gift, the story of one who survives what he calls a "monstrous condition" with an edge of humor, a tad of grace, a smidgen of hope, and an immense serving of art.

He was a wise man who came to the startling awareness (as all of us sooner or later must) that life in the body is a simple lease-hold. One which the gods can, at any time, repossess, without prior notice.