Kitabı oku: «The Diving-Bell and the Butterfly»
THE DIVING-BELL AND THE BUTTERFLY
Jean-Dominique Bauby
Translated by Jeremy Leggatt
Copyright
4th Estate
An imprint of HarperCollinsPublishers
1 London Bridge Street
London SE1 9GF
This eBook first published in Great Britain by 4th Estate in 2018
Copyright © Éditions Robert Laffont. S.A., 1997
Translation copyright © Éditions Robert Laffont, S.A. 1997
PS Section © Sarah O’Reilly 2007, except ‘Obituary: Jean-Dominique Bauby’ by James Kirkup © James Kirkup 1997, ‘Bringing the Story to Screen’ © HarperCollinsPublishers, 2008 and photos © Pathé Distribution Ltd 2007
PS™ is a trademark of HarperCollins Publishers Ltd
A Day In The Life
Words & Music by John Lennon and Paul McCartney
(C) Copyright 1967 Sony/ATV Tunes LLCD/B/A
Sony/ATV Music Publishing
All Rights Reserved. International Copyright Secured
Used by Permission of Hal Leonard Europe Limited
Cover design by Jack Smyth
The moral rights of Jean-Dominique Bauby to be identified as the author of this work has been asserted
A catalogue record for this book is available from the British Library
All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins
Source ISBN: 9780007441815
Ebook Edition © March 2019 ISBN: 9780007384914
Version: 2019-03-11
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Praise
From the reviews of The Diving-Bell and the Butterfly.
‘Read this book and fall back in love with life’
EDMUND WHITE
‘The most extraordinary book of the year’ Daily Telegraph
‘[He] goes to the core of what it means to be human’
Observer
‘Staggering. It represents an almost inconceivable act of generosity’
A. L. KENNEDY
‘Everyone in the country should own at least one copy’
Guardian
‘Vibrantly, insistently, a tale for our times… This is a memoir where the man speaks for the moment, and it is one of the great books of the century’ Financial Times
‘The most remarkable memoir of our time’
CYNTHIA OZICK
Dedication
FOR MY CHILDREN THÉOPHILE AND CÉLESTE
AND MY DEEPEST GRATITUDE TO CLAUDE MENDIBIL,
WHOSE ALL-IMPORTANT CONTRIBUTION TO THESE
PAGES WILL BECOME CLEAR AS MY STORY UNFOLDS.
Contents
COVER
TITLE PAGE
COPYRIGHT
NOTE TO READERS
PRAISE
DEDICATION
PROLOGUE
THE WHEELCHAIR
PRAYER
BATH TIME
THE ALPHABET
THE EMPRESS
CINECITTÀ
TOURISTS
THE SAUSAGE
GUARDIAN ANGEL
THE PHOTO
YET ANOTHER COINCIDENCE
THE DREAM
VOICE OFF
MY LUCKY DAY
OUR VERY OWN MADONNA
THROUGH A GLASS, DARKLY
PARIS
THE TURNIP
OUTING
TWENTY TO ONE
LOADED FOR DUCK
SUNDAY
THE LADIES OF HONG KONG
THE MESSAGE
AT THE WAX MUSEUM
THE MYTHMAKER
‘A DAY IN THE LIFE’
SEASON OF RENEWAL
P. S.: IDEAS, INTERVIEWS & FEATURES …
ABOUT THE AUTHOR
OBITUARY: JEAN-DOMINIQUE BAUBY BY JAMES KIRKUP
ABOUT THE BOOK
ROOM 119, NAVAL HOSPITAL, BERCK-SUR-MER BY SARAH O’REILLY
LE SCAPHANDRE ET LE PAPILLON: A PUBLISHING SENSATION BY SARAH O’REILLY
BRINGING THE STORY TO SCREEN
READ ON
THE WEB DETECTIVE
IF YOU LIKED THIS, WHY NOT TRY …
ABOUT THE AUTHOR
ABOUT THE PUBLISHER
Prologue
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 overhanging the bed where I have been confined these past six months like a hermit crab dug into his rock.
No need to wonder very long where I am, or to recall that the life I once knew was snuffed out on Friday, 8 December, last year.
Up until then I had never even heard of the brain-stem. I’ve since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. I was brutally introduced to this vital piece of anatomy when a cerebro-vascular accident put my brain-stem out of action. In the past it was known as a ‘massive stroke’, and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as ‘locked-in syndrome’. Paralysed from head to toe, the patient, his mind intact, is imprisoned inside his own body, but unable to speak or move. In my case, blinking my left eyelid is my only means of communication.
Of course the sufferer is the last to hear the good news. I myself had twenty days of deep coma and several weeks of grogginess and somnolence before I fully appreciated the extent of the damage. I did not fully awake until the end of January. When I finally surfaced, I was in Room 119 of the Naval Hospital at Berck-sur-Mer on the French Channel coast – the same Room 119, infused now with the first light of day.
An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter-hour by quarter-hour. After their night’s respite, my congested bronchial tubes once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can’t tell if they are burning hot or ice cold. To fight off stiffness I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb.
My cocoon 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.
Enough rambling. My main task now is to compose the first of these bedridden travel notes so that I shall be ready when my publisher’s emissary arrives to take my dictation, letter by letter. In my head I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph.
Seven thirty. The duty nurse interrupts the flow of my thoughts. Following a well established ritual, she draws the curtain, checks tracheostomy and drip-feed, and turns on the TV so I can watch the news. Right now a cartoon celebrates the adventures of the fastest frog in the West. And what if I asked to be changed into a frog? What then?
The Wheelchair
I HAD NEVER SEEN so many white coats in my little room. Nurses, orderlies, physiotherapist, occupational therapist, psychologist, neurologist, interns and even the department head – the whole hospital had turned out for the event. When they first burst in, pushing the device ahead of them, I thought it meant that I was being ejected to make room for a new patient. I had already been at Berck a few weeks, and was daily drawing nearer to the shores of awareness, but I still could not imagine any connection between a wheelchair and me.
No one had yet given me an accurate picture of my situation, and I clung to the certainty, based on bits and pieces I had overheard, that I would very quickly recover movement and speech.
Indeed, my roving mind was busy with a thousand projects: a novel, travel, a play, marketing a fruit cocktail of my own invention. (Don’t ask for the recipe; I have forgotten it.) They immediately dressed me. ‘Good for the morale,’ pronounced the neurologist in sententious tones. And in truth I would have been pleased to trade my yellow nylon hospital gown for a checked shirt, old trousers and a shapeless sweater – except that it was a nightmare to put them on. Or rather to watch the clothes manipulated, after endless contortions, over these uncooperative deadweight limbs, which serve me only as a source of pain.
When I was finally dressed the ritual could begin. Two attendants seized me by the shoulders and feet, lifted me off the bed and dumped me unceremoniously into the wheelchair. I had graduated from being a patient whose prognosis was uncertain to an official quadriplegic. They didn’t quite applaud, but they came close. My caretakers made me travel the length and breadth of the hospital floor to make certain that the seated position did not trigger uncontrollable spasms, but I was too devastated by this brutal downgrading of my future hopes to take much notice. They had to place a special cushion behind my head: it was wobbling about like the head of one of those African women upon removal of the stack of rings that has been stretching her neck for years. ‘You can handle the wheelchair,’ said the occupational therapist with a smile intended to make the remark sound like good news, whereas to my ears it had the ring of a life-sentence. In one flash I saw the frightening truth. It was as blinding as an atomic explosion and keener than a guillotine blade. They all left.
As three orderlies laid me back down, I thought of movie gangsters struggling to fit the slain informer’s body into the boot of their car. The wheelchair sat abandoned in a corner, with my clothes tossed over its dark-blue plastic back-rest. Before the last white coat left the room I signalled my wish to have the TV turned on low. On screen was my father’s favourite quiz show, Letters and Numbers. Since daybreak an unremitting drizzle had been streaking the windows.
Prayer
ODDLY ENOUGH, THE shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection around me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome. First of all, it is very rare. It is small consolation, but the chances of being caught in this hellish trap are about as likely as those of winning the lottery. At Berck, only two of us were locked in, and my own case was not classic. I am perverse enough to be able to swivel my head, which is not supposed to be part of the clinical picture. Since most victims are abandoned to a vegetable existence, the evolution of the disease is not well understood. All that is known is that if the nervous system makes up its mind to start working again, it does so at the speed of a hair growing from the base of the brain. So it is likely that several years will go by before I can expect to wiggle my toes.
In fact it is in my respiratory passages that I can hope for improvement. In the long term, I can hope to eat more normally: that is, without the help of a gastric tube. Eventually, perhaps I could breathe naturally, without a respirator, and muster enough breath to make my vocal cords vibrate.
But for now, I would be the happiest of men if I could just swallow the overflow of saliva endlessly flooding my mouth. Even before first light I am already practising sliding my tongue towards the rear of my palate in order to provoke a swallowing reaction. What is more, I have dedicated to my larynx the little packets of incense hanging on the wall, amulets brought back from Japan by pious globetrotting friends. Just one of the stones in the thanksgiving monument erected by my circle of friends during their wanderings. In every corner of the world the most diverse deities have been solicited in my name. I try to organize all this spiritual energy. If they tell me that candles have been burned for my sake in a Breton chapel, or a mantra chanted in a Nepalese temple, I at once give each of the spirits invoked a precise task. A woman I know enlisted a Cameroon holy man to procure me the good will of Africa’s gods: I have assigned him my right eye. For my hearing problems I rely on the warm relationship that my devout mother-in-law enjoys with the monks of a Bordeaux brotherhood. They regularly dedicate their prayers to me, and I occasionally steal into their abbey to hear their chants fly heavenward. So far the results have been unremarkable. But when seven brothers of the same order had their throats cut by Islamic fanatics my ears hurt for several days. Yet all these lofty protections are merely clay ramparts, walls of sand, Maginot Lines, compared to the small prayer my daughter Céleste sends up to her Lord every evening before closing her eyes. Since we fall asleep at roughly the same hour, I set out for the kingdom of slumber with this wonderful talisman which shields me from all harm.
Bath Time
AT EIGHT THIRTY the physiotherapist arrives. Brigitte, a woman with an athletic figure and an imperial Roman profile, has come to exercise my stiffened arms and legs. They call the exercise ‘mobilization’, a term whose martial connotations contrasts ludicrously with the paltry forces thus summoned, for I’ve lost sixty-six pounds in just twenty weeks. When I began a diet a week before my stroke I never dreamed of such a dramatic result. As she works, Brigitte checks for the smallest flicker of improvement. ‘Try to squeeze my hand,’ she asks. Since I sometimes have the illusion that I am moving my fingers, I focus my energy on crushing her knuckles, but nothing stirs and she replaces my inert hand on its foam pad. In fact the only sign of change is in my neck. I can now turn my head ninety degrees, and my field of vision extends from the slate roof of the building next door to the curious tongue-lolling Mickey Mouse drawn by my son Théophile when I was still unable to open my mouth. Now, after regular exercise, we have reached the stage of slipping a lollypop into it. As the neurologist says, ‘We need to be very patient.’ The session with Brigitte ends with a facial massage. Her warm fingers travel all over my face, including the numb zone which seems to me to have the texture of parchment, and the area that still has feeling where I can manage the beginnings of a frown. Since the demarcation line runs across my mouth, I can only half-smile, which fairly faithfully reflects my ups and downs. A domestic event as commonplace as washing can trigger the most varied emotions.
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. Luckily I have no time for gloomy thoughts. Already they are wheeling me back shivering to my room on a trolley as comfortable as a bed of nails. I must be fully dressed by ten thirty and ready to go to the rehabilitation centre. 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.
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