The Diving Bell and the Butterfly

Through the frayed curtain at my window, a wan glow announces the break of day. My heels hurt, my head weighs a ton, and something like a giant invisible diving bell holds my whole body prisoner. My room emerges slowly from the gloom. I linger over every item: photos of loved ones, my children’s drawings, posters, the little tin cyclist sent by a friend the day before the Paris-Roubaix bike race, and the IV pole hanging over the bed where I have been confined these past six months, like a hermit crab dug into his rock.

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 out for Tierra del Fuego or for King Midas’s court.

You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.

One day, for example, I can find it amusing, in my forty-fifth year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn’s. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad, and a tear rolls down through the lather a nurse’s aide spreads over my cheeks. And my weekly bath plunges me simultaneously into distress and happiness. The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted immersions that were the joy of my previous life.

A strange euphoria came over me. Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish, but I was also horrible to behold. There comes a time when the heaping up of calamities brings on uncontrollable nervous laughter—when, after a final blow from fate, we decide to treat it all as a joke. My jovial cackling at first disconcerted [the Empress] Eugénie, until she herself was infected by mirth. We laughed until we cried.

A niche must be found for us, broken-winged birds, voiceless parrots, ravens of doom, who have made our nest in a dead-end corridor of the neurology department. Of course, we spoil the view. I am all too conscious of the slight uneasiness we cause as, rigid and mute, we make our way through a group of more fortunate patients.

By means of a tube threaded into my stomach, two or three bags of a brownish fluid provide my daily caloric needs. For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.

Quite apart from the practical drawbacks, [my] inability to communicate is somewhat wearing. Which explains the gratification I feel twice daily when Sandrine knocks, pokes her small chipmunk face through the door, and at once sends all gloomy thoughts packing. The invisible and eternally imprisoning diving bell seems less oppressive.

For half an hour, the alarm on the machine that regulates my feeding tube has been beeping […] I cannot imagine anything so inane or nerveracking as this piercing beep beep beep pecking away at my brain. As a bonus, my sweat has unglued the tape that keeps my right eyelid closed, and the […] lashes are tickling my pupil unbearably. And to crown it all, the end of my catheter has become detached and I am drenched. […] Here comes the nurse. Automatically, she turns on the TV. A commercial, with a personal computer spelling out the question: “Were you born lucky?”

“Listen, there’s no way I’m going to wait in this!”

“Pity,” Joséphine snapped. “It would do a sinner like you a lot of good!”

“Not at all. It could even be dangerous. What if someone in perfect health happened to be here when the Madonna appeared? One miracle, and we’d end up paralyzed.”

“How do you feel, Pop?” asks Théophile.

His pop’s throat is tight, his hands are sunburned, and his bottom hurts from sitting on it too long, but he has had a wonderful day. And what about you kids, what will you carry back from this field trip into my endless solitude?

At the Café de Flore, one of those camps of Parisian snobbery that send up rumors like flights of carrier pigeons, some close friends of mine overheard a conversation at the next table.

“Did you know that Bauby is now a total vegetable?” said one [gossiper.]

“Yes, I heard, a complete vegetable,” came the reply. […] The tone of voice left no doubt that henceforth I belonged on a vegetable stall and not to the human race. […] I would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s.

Thus was born a collective correspondence that keeps me in touch with those I love. And my hubris has had gratifying results. Apart from the irrevocable few who maintain a stubborn silence, everybody now understands that he can join me in my diving bell, even if sometimes the diving bell takes me into unexplored territory. I receive remarkable letters. […] I carefully read each [one] myself. […] I hoard all these letters like treasure.

This afternoon, Claude (the young woman to whom I am dictating this book) and Brice are with me. I have known Claude for two weeks, Brice for twenty-five years. It is strange to hear my old partner in crime telling Claude about me. My quick temper, my love of books, my immoderate taste for good food, my red convertible—nothing is left out. Like a storyteller exhuming the legends of a lost civilization.

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 must have butterfly hearing.

I should not feel morally superior to Olivier, for today I envy him his mastery of the storyteller’s art. I am not sure I will ever acquire such a gift, although I, too, am beginning to forge glorious substitute destinies for myself.

Like millions of Parisians, our eyes empty and our complexions dull, Florence and I embarked like zombies on a new day. […] I mechanically carried out all those simple acts that today seem miraculous to me: shaving, dressing, downing a hot chocolate.

I have indeed begun a new life, and that life is here, in this bed, that wheelchair, and those corridors. Nowhere else.

September means the end of vacations, it means back to school and to work… […] But here at Berck I hear only the faintest echoes of the outside world’s collective return to work and responsibility…

[Claude’s] purse is half open, and I see a hotel room key, a metro ticket, and a hundred-franc note folded in four, like objects brought back by a space probe sent to earth to study how earthlings live, travel, and trade with one another. The sight leaves me pensive and confused. Does the cosmos contain keys for opening up my diving bell? A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking. I’ll be off now.