I want to write…but…
I’ve heard those words spoken in that configuration many times over the years; from friends and from aspiring writers and, if I’m to be completely honest, from my own lips. But, they have no authority here and they are as evanescent as yesterday’s blank page. The words are meaningless in light of the extraordinary accomplishment of the dead Frenchman that is buried in front of me.
I’m standing before the grave of Jean-Dominique Bauby at the Père-Lachaise cemetery in Paris—a journal in one hand and a pot of chrysanthemums in the other—paying my respects to this uncommon writer. It is a wistful yet joyous celebration of le Jour des Morts and le Jour des Mots—the Day of the Dead and the Day of the Words.
I open my journal and read the words I’ve transcribed into it, taken from the only book written by the man in the ground at my feet.
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 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.
These are elegantly descriptive sentences, almost Hemingway-esque in their simplicity, and they come from a man enduring circumstances that have driven others to the edge of terror and tumbling into the abyss of insanity.
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.
The year was 1995 and I was a thirty-one-year-old Brooklyn playwright and professional storyteller for children in Manhattan. In the summers, I taught English and drama at an American boarding school in the Italian region of Switzerland—and I had been in Paris just a few months before the events written about by my writing muse. I had also been to the Père-Lachaise, a regular haunt, to drink a bottle of wine in the company of Oscar Wilde.
However, my life and my struggles at the time were nothing compared to the existential nightmare of Jean-Dominique Bauby. My brain and body were intact.
Up until then, I had never even heard of the brainstem. 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 cerebrovascular accident took my brain stem out of action.
The accident that Bauby writes about:
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.
But, how…how was Jean-Dominique able to communicate the words you’ve just read?
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.
Again, one wonders with a wonderment beyond the pale: How did he write these words I’ve transcribed?
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.
He writes these words by dictating his memoir, one letter at a time, to his clever and efficient conversational co-conspirator, Claude Mendibil, who lists the letters in accordance with their frequency in the French language.
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.
By a fortunate stroke of luck and intuition, Bauby’s physical therapist noticed that he could blink his left eyelid—his paralyzed right eyelid had been sewed shut to prevent his eyeball from drying up—and she had devised a communication system called partner-assisted scanning, which utilized his singular muscular ability to dictate a beautiful memoir called Le Scaphandre et le Papillon.
And, what are those travel notes of which Bauby babbles about? They’re excursions of the imagination, of course—the only recourse for a traveler physically bound and rooted in place like an oak tree. But, his thoughts branch out, stretching beyond the boundaries of place, allowing his mind, which he likens to a diving bell, to take flight like a butterfly.
You can wander off in space and 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 ambitions.
Ten months and two hundred thousand blinks later he completes his magnificient memoir and promptly expires from pneumonia on 7 March 1997, two days after his book is published.
I set the pot of chrysanthemums on his grave, move to a nearby bench, open my journal, and write like there are no excuses.
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