Last night I watched a film called The Diving Bell and the Butterfly: A Memoir of Life in Death. Based on the memoir of Jean-Dominique Bauby, it tells the story of the former editor-in-chief of French Elle, who became paralyzed from a stroke. As a result, he suffered from a rare condition called ‘locked-in syndrome,’ leaving his brain activity fully intact, but disabling him from using speech. Against all odds, Bauby dictated the memoir using a simplified alphabetic system devised to translate each blink of an eye into a letter. This painstakingly slow mode of communication enabled Bauby to gradually share his dreams, passions and fears. He died days after French publication of his memoir.
The movie is only partly about Bauby’s struggle to come to terms with his physical limitations. He is silently enraged when a physician arrives to sew up his damaged eye, but seems to cringe more when the doctor recounts his recent skiing adventures. The inherent inequalities of the patient-doctor relationship are magnified even more by Bauby’s sheer inability to express himself. With his inner voice, Bauby mocks the physician who calls him by his nickname, realizing at the same time that he must accept that which he cannot change. This, I believe, is the message of redemption that the film ultimately seeks to impart about Bauby’s predicament.
Abandoning the initial pangs of self-pity, he calls instead on his imagination and memories to pull him through times of loneliness and despair. And what a fertile treasure trove he has from the past … He remembers shaving his father days before his stroke; he recalls buying an overpriced Madonna in Lourdes for a girlfriend whose reverence for the statue was inexplicable to Bauby; and he is transported back to lucid moments at work, with his children, with friends. A big fan of The Count of Monte Cristo, he intersperses thoughts about the present with imaginary scenes from the historical past.
Filmed from Bauby’s perspective (his voice, inaudible to those around him, nevertheless conveys clearly formed thoughts and feelings to the viewer), the opening scenes are full of distorted, out-of-focus images; the blurred vision due to his recent emergence from a coma and a damaged eye. At times, he imagines himself sinking to the bottom of the ocean encased in a diving bell, unable to return to the surface.
Some of those images brought back stark memories of the hallucinations I experienced as I regained consciousness in the Battambang hospital. I felt dizzy from the fractals in front of my eyes. I was nauseous from the shifting colours, the kaleidoscopic rainbow flickering against the white tiled walls. A female patient may have smiled at me, but upon seeing only a large mass of black hair, I imagined that I was perhaps locked up in a zoo.
The mind is a mystery. Locked-in, even more so. Unlocked, unleashed, it is capable of exquisite thoughts, beliefs and creative expression. Bauby’s life was tragically short-lived, but it is comforting to know that, even from the depths of his paralysis, he could live a fully mindful existence.