The Diving-Bell and the Butterfly. Jean-Dominique Bauby

       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?