A bit of youthful presumption and quick answering found Rob and I at the Press Screening of The Diving Bell and the Butterfly. After persuading the film’s publicity agent that she was indeed expecting my arrival- she greeted me, asking if I was the one scheduled to interview Schnabel- Rob and I joined the small coterie of critics from, among others, the Boston Globe and The Phoenix.
Based on the French memoir Le scaphandre et le papillon by Jean-Dominique Bauby, The Diving Bell and the Butterfly describes his life after suffering a massive stroke at the age of 42 that left him with the condition locked-in syndrome, leaving his only means of communication as blinking his left eyelid.
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 cocoon 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 hanging over 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 Friday, the eighth of 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. That day I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took 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.” Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.
Of course, the party chiefly concerned 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 truly 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, from which I write.
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 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.
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.