The film scene is stunning—taken from the perspective of the eye itself
looking outward—a blood orange light radiating through what seems like
a translucent leaf, the fractals of its veins branching off into
smaller and smaller ones fine as spider silk. At least that’s how I
remember it. Dark, oily eyelashes form spikes through which blinding
lights flash. A diminishing aperture carefully sutured closed until its
owner is imprisoned in darkness. The film—adapted from a memoir—is The
Diving Bell and The Butterfly. The man is Jean-Dominique Bauby.
As the story unfolds we learn that journalist, author and editor of the French fashion magazine ELLE, Jean-Dominique Bauby, survives a massive stroke thrusting him into a coma for weeks only to awaken almost completely paralyzed. He loses the use of his right eye requiring that it be sutured shut. The man suffers “locked-in syndrome,” a bright mind incarcerated in a motionless body, able to communicate only by the blink of an eye. Nonetheless, with the help of an emissary who takes his dictation, he writes his memoir one letter—one blink—at a time.
Often, if not daily, I wonder if Calvin suffers his own sort of locked-in syndrome, knowing what he wants but held captive by his wordlessness, his inability to express his desires. But he shows few stressors of this imprisonment—his irritability more likely due to an upset tummy or his antiepileptic drug side effects—only the stubborn refusal to do something, such as walk down the sidewalk holding my hand, or a stubborn insistence for another, like repeatedly leading me to the bathroom to play with the shutters.
I imagine Jean-Dominique encased in his thick, heavy, claustrophobic diving bell. In his memoir he writes:
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.
If only I knew that Calvin could do the same somehow—escape from his diving bell—I'd be released, to some extent, from my despair over his incapacity.
The author goes on to write about his beloved, aging father:
Every now and then he calls, and I listen to his affectionate voice, which quivers a little in the receiver they hold to my ear. It cannot be easy for him to speak to a son who, as he well knows, will never reply.
I’m reminded of the times in the past five years that I’ve traveled away from Calvin, to see my mother whose progressive Alzheimer’s has become her own diving bell, and to visit friends in New York, Los Angeles and Seattle. When I call home I talk to Michael, or the nurse, and then they put the phone to Calvin’s ear. “Hi Calvin ... hi Sweetie ... it’s Mama. I miss you Baby. I miss you sooooo much.” I know he’s either pushing the phone away, trying to bite it or—in the rarest of cases—smiling. My attempts at connecting with my son—now eight—feel futile. He seems utterly submerged in a metal bell surrounded by murky waters, shifting light and muffled sounds.
However, as I write this I realize that perhaps it’s not Calvin who is imprisoned in this dark chamber, rather I am, which brings me both relief and sadness: relief that Calvin seems oblivious to the world he is missing so very much of and sadness because we are both missing it.
So, instead, I must close my eyes and imagine taking flight from this diving bell—this cocoon—that, in some ways I have made for myself. I must remind myself that, like Jean- Dominique Bauby, I can always float in my dreams.
Version originally published 09.26.11.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
As the story unfolds we learn that journalist, author and editor of the French fashion magazine ELLE, Jean-Dominique Bauby, survives a massive stroke thrusting him into a coma for weeks only to awaken almost completely paralyzed. He loses the use of his right eye requiring that it be sutured shut. The man suffers “locked-in syndrome,” a bright mind incarcerated in a motionless body, able to communicate only by the blink of an eye. Nonetheless, with the help of an emissary who takes his dictation, he writes his memoir one letter—one blink—at a time.
Often, if not daily, I wonder if Calvin suffers his own sort of locked-in syndrome, knowing what he wants but held captive by his wordlessness, his inability to express his desires. But he shows few stressors of this imprisonment—his irritability more likely due to an upset tummy or his antiepileptic drug side effects—only the stubborn refusal to do something, such as walk down the sidewalk holding my hand, or a stubborn insistence for another, like repeatedly leading me to the bathroom to play with the shutters.
I imagine Jean-Dominique encased in his thick, heavy, claustrophobic diving bell. In his memoir he writes:
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.
If only I knew that Calvin could do the same somehow—escape from his diving bell—I'd be released, to some extent, from my despair over his incapacity.
The author goes on to write about his beloved, aging father:
Every now and then he calls, and I listen to his affectionate voice, which quivers a little in the receiver they hold to my ear. It cannot be easy for him to speak to a son who, as he well knows, will never reply.
I’m reminded of the times in the past five years that I’ve traveled away from Calvin, to see my mother whose progressive Alzheimer’s has become her own diving bell, and to visit friends in New York, Los Angeles and Seattle. When I call home I talk to Michael, or the nurse, and then they put the phone to Calvin’s ear. “Hi Calvin ... hi Sweetie ... it’s Mama. I miss you Baby. I miss you sooooo much.” I know he’s either pushing the phone away, trying to bite it or—in the rarest of cases—smiling. My attempts at connecting with my son—now eight—feel futile. He seems utterly submerged in a metal bell surrounded by murky waters, shifting light and muffled sounds.
However, as I write this I realize that perhaps it’s not Calvin who is imprisoned in this dark chamber, rather I am, which brings me both relief and sadness: relief that Calvin seems oblivious to the world he is missing so very much of and sadness because we are both missing it.
So, instead, I must close my eyes and imagine taking flight from this diving bell—this cocoon—that, in some ways I have made for myself. I must remind myself that, like Jean- Dominique Bauby, I can always float in my dreams.
Version originally published 09.26.11.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
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| from the film, The Diving Bell and the Butterfly |
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