The Diving-Bell and the Butterfly

by Jean-Dominique Bauby

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.

To complete the picture 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.

Lined up like a row of onions, this human throng waves arms and legs under minimal supervision, while I lie tethered to an inclined board which is slowly raised to a vertical position.

I would like to be a part of all this hilarity, but as soon as I direct my one eye towards them, the young man, the grandmother and the homeless man turn away, feeling the sudden need to study the ceiling smoke-detector. The ‘tourists’ must be very worried about fire.

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. What a banquet! The yolk flows warmly over my palate and down my throat. And indigestion is never a problem. Naturally, I use the finest ingredients: the freshest vegetables, fish straight from the water, the most delicately marbled meat. Everything must be done right.

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.

I receive remarkable letters. They are opened for me, unfolded and spread out before my eyes, in a daily ritual that gives the arrival of the post the character of a hushed and holy ceremony. 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.

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 the ear of a butterfly.

I LOVED TO TRAVEL. Fortunately I have stored away enough pictures, smells and sensations over the course of the years to enable me to leave Berck far behind on days when a leaden sky rules out any chance of going outdoors. They are strange wanderings. The sour smell of a New York bar. The odour of poverty in a Rangoon market. Little bits of the world. The white icy nights of Saint Petersburg, or the unbelievably molten sun at Furnace Creek in the Nevada desert.

He is also in search of past time, of memory itself, of the books he has read, the poems he learnt by heart; even more sad, he thinks of all the books he wanted to read and hadn’t done so. He has to listen to someone else reading them to him. He remembers a bet he lost at a racetrack, one of the many flashes of wry humour in his

Bauby’s determination to overcome difficulties that would send most of us into irretrievable depths of despair are expressed in the words: ‘I have decided to carry on my fight against fatality by setting up the first association in the world for people suffering from Locked-In Syndrome.’ So he created ALIS (Association du Locked-In Syndrome) and became its first president, stating his objectives thus: ‘To collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, and to make them true citizens of the 21st century.’ Already many famous people have become sponsors.

With the flutter of a single eyelid, we witness the moment when ‘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.’

He movingly captures the power of the imagination in this way: ‘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, realise your childhood dreams and adult ambitions.’