THE DIVING-BELL AND THE BUTTERFLY
Jean-Dominique Bauby
Translated by Jeremy Leggatt

Copyright

4th Estate

An imprint of HarperCollinsPublishers

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London SE1 9GF

www.4thEstate.co.uk

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

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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.

The Alphabet

I AM FOND OF my alphabet letters. At night, when it is a little too dark and the only sign of life is the small red spot in the centre of the television screen, vowels and consonants dance to a Charles Trenet tune: ‘Dear Venice, sweet Venice, I’ll always remember you …’ Hand in hand the letters cross the room, whirl around the bed, sweep past the window, wriggle across the wall, swoop to the door and return to begin again.

ESARINTULOMDPCFBVHGJQZYXKW

The jumbled appearance of my chorus line stems not from chance but from cunning calculation. More than an alphabet, it is a hit parade in which each letter is placed according to the frequency of its use in the French language. That is why E dances proudly out in front while w labours to hold on to last place, B resents being pushed back next to v, and haughty J – which begins so many sentences in French – is amazed to find itself so near the rear of the pack. Roly-poly G is annoyed to have to trade places with H, while T and U, the tender components of ‘tu’, rejoice that they have not been separated. All this reshuffling has a purpose: to make it easier for those who wish to communicate with me.

It is a simple enough system. You read off the alphabet (ESA version, not ABC) until with a blink of my eye I stop you at the letter to be noted. The manoeuvre is repeated for the letters that follow so that fairly soon you have a whole word, and then fragments of more or less intelligible sentences. That at least is the theory. But the truth is that some visitors fare better than others. Because of nervousness, impatience or obtuseness, performances vary in the handling of the code (which is what we call this method of transcribing my thoughts). Crossword fans and Scrabble players have a head start. Girls manage better than boys. By dint of practice, some of them know the code by heart and no longer even turn to our special notebook – the one containing the order of the letters, and in which all my words are set down like the Delphic oracle’s.

Indeed, I wonder what conclusions anthropologists of the year 3000 will reach if they ever chance to leaf through these notebooks, haphazardly scribbled with remarks like ‘the physiotherapist is pregnant’, ‘mainly on the legs’, ‘Arthur Rimbaud’, and ‘the French team played like pigs’ are interspersed with unintelligible gibberish, misspelled words, lost letters, omitted syllables.

Nervous visitors come most quickly to grief. They reel off the alphabet tonelessly, at top speed, jotting down letters almost at random; and then, seeing the meaningless result, exclaim: ‘I’m an idiot!’ But in the final analysis their anxiety gives me a chance to rest, for they take charge of the whole conversation, providing both questions and answers, and I am spared the task of holding up my end. Reticent people are much more difficult. If I ask them. ‘How are you?’ they answer ‘Fine,’ immediately putting the ball back in my court. With some the alphabet becomes an artillery barrage, and I need to have two or three questions ready in advance in order not to be swamped. Meticulous people never go wrong: they scrupulously note down each letter and never seek to pierce the mystery of a sentence before it is complete. Nor would they dare dream of finishing a single word for you. Unwilling to chance the smallest error, they will never take it upon themselves to provide the ‘room’ that follows ‘mush,’ the ‘ic’ that follows ‘atom’, or the ‘nable’ without which neither ‘intermi’ nor ‘abomi can exist. Such scrupulousness makes for laborious progress, but at least you avoid the misunderstandings in which impulsive visitors bog down when they neglect to verify their intuitions. Yet I understood the poetry of such mind games one day when, attempting to ask for my glasses (lunettes), I was asked what I wanted to do with the moon (lune).

The Empress

NOT MANY PLACES in France still nurture the cult of Empress Eugénie. In the main hall of the Naval Hospital, a vast echoing space in which trolleys and wheelchairs can advance five abreast, a stained-glass window depicts the wife of Napoléon III, the hospital’s patroness. The two chief curiosities of this micromuseum are a white marble bust which restores to the glory of her youth this fallen highness who died at ninety-four; and the letter in which the deputy station-master of Berck’s railroad depot describes to the editor of the Correspondant Maritime the brief imperial visit of 4 May, 1864. Through his words I can see the special train pull in, the troupe of young ladies of Eugénie’s retinue, the joyful procession through the town, and the introduction of the hospital’s little patients (Berck began life as a children’s hospital) to their illustrious protectress. For a while I seized every chance I had to pay my respects to these relics.

A score of times I read the railwayman’s account. I mingled with the chattering flock of ladies-in-waiting, and whenever Eugénie progressed from one ward to another I followed her hat with its yellow ribbons, her silk parasol and the scent of her passage, imbued with the eau de Cologne of the court perfumer. On one particularly windy day I even dared draw near and bury my face in the folds of her white gauze dress with its broad satin stripes. It was as sweet as whipped cream, as cool as the morning dew. She did not send me away. She ran her fingers through my hair and said gently, ‘There there, my child, you must be very patient,’ in a Spanish accent very like the neurologist’s. She was no longer the empress of the French but a compassionate divinity in the manner of Saint Rita, patroness of lost causes.

And then, one afternoon as I confided my woes to her likeness, 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.

Whereupon a strange euphoria came over me. Not only was I exiled, paralysed, mute, half deaf, deprived of all pleasures and reduced to a jellyfish existence, 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 Eugénie, until she herself was infected by my mirth. We laughed until we cried. The municipal band then struck up a waltz, and I was so merry that I would willingly have risen and invited Eugénie to dance had such a move been fitting. We would have whirled around miles of floor. Ever since then, whenever I go through the main hall, I detect a hint of amusement in the Empress’s smile.

Cinecittà

THE NAVAL HOSPITAL must be a striking sight to the noisy microlight aircraft which buzz the Berck shoreline at an altitude of 300 feet. With its massive, over-elaborate silhouette and the high red-brick walls typical of northern France, it seems to have foundered on the sands between the town and the grey waters of the Channel. On the façade of its most imposing annexe, as on the fronts of schools and public baths in the French capital, are the words ‘City of Paris’. Created during the Second Empire for sick children in need of a climate healthier than that of Paris’s hospitals, the annexe has retained its extraterritorial status.

For while cold reality places us in the Pas-de-Calais region, as far as the medical bureaucracy is concerned we are still on the banks of the Seine.

Linked by endless corridors, the hospital buildings form an authentic maze, and one routinely runs into patients from Menard hopelessly lost in Sorrel – wards named after eminent surgeons. Like children who have wandered from their mothers, these unfortunates mutter ‘I’m lost!’ as they wobble about on their crutches. Being what the stretcher-bearers call a ‘Sorrel’, I am more or less at home here, but the same cannot be said of newcomers. I could try to signal with my eyes whenever my wheelchair is pushed in the wrong direction, but I have taken to looking stonily ahead. There is always the chance that we will stumble upon some unknown corner of the hospital, see new faces, or catch a whiff of cooking as we pass. It 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.

The lighthouse and I remain in constant touch, and I often call on it by having myself wheeled to Cinecittà, a region essential to my imaginary geography of the hospital. Cinecittà is the perpetually deserted terrace of Sorrel ward. Facing south, its vast balconies open on to a landscape heavy with the poetic and slightly offbeat charm of a movie set. The suburbs of Berck look like a model train layout. A handful of buildings at the foot of the sand-dunes give the illusion of a Western ghost town. As for the sea. it foams such an incandescent white that it might be the product of the special-effects department.

I could spend whole days at Cinecittà. There, I am the greatest director of all time. On the town side, I reshoot the close-ups for Touch of Evil. Down at the beach I rework the dolly shots for Stagecoach and offshore I recreate the storm rocking the smugglers of Moonfleet. Or else I dissolve into the landscape and there is nothing more to connect me to the world than a friendly hand stroking my numb fingers. I am Pierrot le Fou, my face smeared blue and a garland of dynamite-sticks entwining my head. The temptation to strike a match drifts by, like a cloud. And then it is the hour when the day fades, when the last train sets out for Paris, when I have to return to my room. I wait for winter. Warmly wrapped up, we can linger here until nightfall, watch the sun set and the lighthouse take up the torch, its hope-filled beams sweeping the horizon.

Tourists

AFTER DEVOTING ITSELF to the care of young victims of a tuberculosis epidemic after the Second World War, Berck gradually shifted its focus away from children. Nowadays it tends to concentrate more on the sufferings of the aged, on the inevitable breakdown of body and mind; but geriatrics is only one part of the picture I must paint to give an accurate idea of the hospital’s denizens. In one section are a score of comatose patients, poor devils at death’s door, plunged into endless night. They never leave their rooms. Yet everyone knows they are there, and they weigh strangely on our collective awareness, almost like a guilty conscience. In another wing, next door to the colony of elderly and enfeebled, is a cluster of morbidly obese patients whose substantial dimensions the doctors hope to whittle down. Elsewhere, a battalion of cripples forms the bulk of the inmates. Survivros of sport, of the highway, and of every possible and imaginable kind of domestic accident, these patients remain at Berck for as long as it takes to get their shattered limbs working again. I call them ‘tourists’.

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.

The best place to observe this phenomenon is the rehabilitation room, where all patients undergoing physiotherapy are congregated. Garish and noisy, a hubbub of splints, artificial limbs and harnesses of varying complexity, it is an authentic Court of Miracles. Here we see a young man with an earring, who suffered multiple fractures in a motorbike accident; a grandmother in a fluorescent nightgown, who is learning to walk after a fall from a stepladder; and a homeless man whose foot was somehow amputated by a subway train. 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. Every morning I spend half an hour suspended this way, frozen to attention in a posture that must evoke the appearance of the Commendatore’s statue in the last act of Mozart’s Don Giovanni. Below, people laugh, joke, call out. 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.

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