A Movie Stokes My Memories

Nov 30

Nov 30, 2007, The Wall Street Journal

In the opening frames of “The Diving Bell and the Butterfly,” the audience looks out through the watery left eye of Jean-Dominique Bauby toward the hazy midsections of medical personnel, the tops of lavender roses bleeding at eye level into one. The protagonist, awakening in bed from a massive stroke, does not realize that he cannot speak, that his tongue is not formulating the letters, words and sentences, pinging about his brain.

Thus does the film convey two of the initial ordeals of trauma: the victim’s new perspective and his inability to comprehend the disconnect between mind and body.

May 16, 1990. Highway 1, just outside Jerusalem.

These observations jibed with my memory of a 1990 May day and its aftershocks. It was then a runaway truck heavy with floor tiles hurtled down a stretch of highway outside Jerusalem and flush into the back left corner of a minibus where I sat in a seat with no headrest. My neck snapped back. My body flew forward then right. We banged to a stop against a railing and I landed two seats over. Listing to the right, I struggled to breathe and surveyed my limbs unmoving in their red vinyl seat. I wondered why I was not leaving this bus I wanted to leave.

I was not a quadriplegic long. Steroids and surgery lessened the swelling in my broken neck and I beheld my body enlivening: after one week a bicep flickered, after two a quadricep, after three and four I breathed and urinated without mechanical help. After four months, I slowly walked out of the hospital and into college — a hemiplegic with a heightened worldview. And after four years of a little walking, a lot of rolling, and a field a vision, like Mr. Bauby’s, somewhere between doorknobs and breasts, I retired my wheelchair. I was left to teeter with cane and ankle brace, to mind spasticity and spotty sensation, to play catch and type these words with one hand.

In popular portrayals, the paralyzed are often bathed in bathos. I have minded our depictions in print and on film for 17 years, and can report that broken necks are catnip to moviemakers. In 2005, both “Million Dollar Baby” and “The Sea Inside,” films in which quadriplegics wish to die, won Oscars.

I tried to use this chart to communicate when I could not speak. It was of little use.

There are great benefits to honestly communicating what it feels like to be disabled. Andre Dubus did so in his powerful book of essays “Meditations From a Moveable Chair.” Neal Jimenez did so in his unadorned film “The Waterdance,” a tale of paraplegia in a rehab ward. And Mr. Bauby did so too. Rendered by his stroke mute and motionless save his innervated left eye, he was able to communicate and ultimately write a luminous memoir, “The Diving Bell and the Butterfly,” by blinking at an assistant forever reciting the alphabet.

I marvel at his method. It is beyond difficult to mold and polish entire paragraphs in one’s head. As a quadriplegic playing Scrabble, I could not even conjure the seven-letter anagrams that had inevitably formed when I could manually arrange my tiles. And that “The Diving Bell and the Butterfly” emerged from a man within the hermetic cell of a condition known as locked-in syndrome magnifies its power. As a chronicle of disability and an ode to life, it is unsurpassed.

I tried to use this chart to communicate when I could not speak. It was of little use.

I was never comparably confined. Even during those weeks when I could neither speak nor move, I learned from a night nurse named Julie to smack my lips should I desperately need, say, a scratch on the nose. A brief go at communication with a chart of letters was unsuccessful. And so I mouthed words — no matter my intubation at the start — and some of them were understood.

More trying than misunderstandings were the bon mots left unsaid or the conversation with my mother about “The Great Gatsby” that I abandoned when it took minutes to simply convey the title. “My communication system disqualifies repartee,” wrote Mr. Bauby. “It deprives conversation of its sparkle, all those gems you bat back and forth like a ball — and I count this forced lack of humor one of the great drawbacks of my condition.”

And so proceeds Mr. Bauby, blink by blink, eloquently diagnosing his lot (and mine, during the months I spent in the hospital): the uplift and pain of visiting family, the comfort and cruelty of memory, the horror and humor of being cleaned, the impotence and magic of medicine, the beauty and falsity of prayer, the love and interdependence between patient and therapist, the spasms of sadness that perforate otherwise optimistic days, and most of all the struggle to coexist with the offending catastrophe, to let go of what was not yet done but is now impossible, to preserve the marrow of the self.

“Having turned down the hideous jogging suit provided by the hospital, I am now attired as I was in my student days,” writes Mr. Bauby, formerly a fashion magazine editor. “I see in the clothing 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.”

It was left to director Julian Schnabel to render the physical memory of the quadriplegic. (“Now, I’ll remember myself as I was,” says Mr. Bauby’s inner voice.) In every frame of his beautiful film, Mr. Schnabel emphasizes physical sensation — the touches, tastes, smells, sights and sounds Mr. Bauby endlessly summoned to his mind (his butterfly) so as to flee his benumbed body (his diving bell). When Mr. Bauby recalls shaving his father days before his stroke, the butterfly flutters to a red armchair four flights above the streets of Paris. There we feel the old man’s jowls pulled taut, taste the lather at his lips, hear the scrape of his whiskers, smell the aftershave cupped to his nose, take in his face reflected in a gilded mirror.

It is not easy to recall what can no longer be felt. My body was whole for 19 years and 35 days, and yet from that time I retain just three physical memories, portals to unencumbered movement: My limbs jangle at age 15 as I run for a ball on a field. My joints give at age 18 as I juke barefoot on a sand flat. My body slants months later as I cut a street corner at full speed. Sensation recollected is sensation still. This Mr. Schnabel underscores, his film as lush as the book is spare. It is saturated in sensation.

And yet his movie is anesthetized to the sensorial horrors of quadriplegia. We hear Mr. Bauby’s tracheotomy gurgle but once, though the suctioning of his sputum would have been incessant. We see him plopped a first time into his wheelchair semi-erect, though owing to orthostatic hypotension, he would have fainted. But this is as it should be. For Jean-Dominique Bauby stood up to physical reality. As his spirit metamorphosed, his butterfly transcended his diving bell.

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