The Diving-Bell and the Butterfly

by Jean-Dominique Bauby

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 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 wallowings that were the joy of my previous life. Armed with a cup of tea or a Scotch, a good book or a pile of newspapers, I would soak for hours, manoeuvring the taps with my toes. Rarely do I feel my condition so cruelly as when I am recalling such pleasures.

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 clothes 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.

was in this way that I came upon the lighthouse, on one of the very first expeditions in my wheelchair, shortly after swimming up from the mists of coma. As we emerged from a lift, having got off on the wrong floor, I saw it: tall, robust and reassuring, in red and white stripes that reminded me of a rugby shirt. I at once placed myself under the protection of this brotherly symbol, guardian not just of sailors but of the sick – those castaways on the shores of loneliness.

Once I was a master at recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to table at any hour, with no fuss or ceremony. If it’s a restaurant, no need to book. If I do the cooking, it is always a success. The bourguignon is tender, the boeuf en gelée translucent, the apricot pie possesses just the requisite tartness. Depending on my mood I treat myself to a dozen snails, a plate of Alsatian sausage with sauerkraut, and a bottle of late-vintage golden Gewurztraminer, or else I savour a simple soft boiled egg with fingers of toast and lightly salted butter.

As the weeks go by, this forced solitude has allowed me to acquire a certain stoicism and to realize that the hospital staff are of two kinds: the majority, who would not dream of leaving the room without first attempting to decipher my SOS messages; and the less conscientious minority, who make their getaway pretending not to notice my distress signals.

My daughter Céleste tells me of her adventures with her pony. In five months she will be nine. My father tells me how hard it is to stay on his feet. He is fighting undaunted through his ninety-third year. These two are the outer links of the chain of love which surrounds and protects me. I often wonder about the effect of these one-way conversations on those at the other end of the line. I am overwhelmed by them. How dearly I would love to be able to respond with something other than silence to these tender calls. I know that some of them find it unbearable. Sweet Florence refuses to speak to me unless I first breathe noisily into the receiver which Sandrine holds glued to my ear. ‘Are you there, Jean-Do?’ she asks anxiously over the air. And I have to admit that at times I do not know any more.

I need to feel strongly, to love and to admire, just as desperately as I need to breathe.

Grief surges over me. His face not two feet from mine, my son Théophile 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 Théophile. Don’t be scared, little man, I love you. Still engrossed in the game, he moves in for the kill. Two more letters: he has won, and I have lost. On a corner of the page he completes his drawing of the gallows, the rope and the condemned man.

I AM FADING AWAY. Slowly but surely. Like the sailor who watches his home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.

I carefully read each letter myself. Some of them are serious in tone, discussing the meaning of life, invoking the supremacy of the soul, the mystery of every existence. And by a curious reversal, the people who focus most closely on these fundamental questions tend to be people I had known only superficially. Their small talk had masked hidden depths. Had I been blind and deaf, or does it take the glare of disaster to show a person’s true nature?

Other letters simply relate the small events that punctuate the passage of time: roses picked at dusk, the laziness of a rainy Sunday, a child crying himself to sleep. Capturing the moment, these small slices of life, these small gusts of happiness, move me more deeply than all the rest. A couple of lines or eight pages, a Middle Eastern stamp or a suburban postmark … I hoard all these letters like treasure. One day I hope to fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship. It will keep the vultures at bay.

Mithra-Grandchamp is the women we were unable to love, the chances we failed to seize, the moments of happiness we allowed to drift away. Today it seems to me that my whole life was nothing but a string of those small near-misses: a race whose result we know beforehand, but in which we fail to bet on the winner.

The small Health Department calendar on the wall, whittled away day by day, announces that it is already August. Mysterious paradox: time, motionless here, gallops out there. In my contracted world the hours drag on but the months flash by.