The Diving Bell and the Butterfly by Jean-Dominique Bauby

In 1997, at age 43 and at the height of both his personal and professional life, Jean-Dominique Bauby, the French editor of Elle, suffered a stroke that left him almost entirely paralyzed. His lone remaining means of communication was dictating letters one at a time by blinking his left eye. After reconciling himself to the horrors of locked-in syndrome, he went on to produce “a memoir of life in death” chronicling the daily struggle of inhabiting two diametrically opposed environments, a sunken body and a soaring mind: the diving bell and the butterfly of his book’s title.

Memoirs of illness are inherently plagued by pathos. Among the most heartbreaking of the book’s composite vignettes are those describing Bauby’s relations with his infirm elderly father and his two young children. Having not seen his father since before the stroke, he reflects “We are both locked-in cases, each in his own way: myself in my carcass, my father in his fourth-floor apartment.” When dealing with his children, the cruelty of age seems accelerated.

In the same way Bauby must care for his father as if he himself were the parent, so too are the roles reversed with his son and daughter: “Théophile dabs with a Kleenex at the thread of saliva escaping my closed lips. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions … Céleste cradles my head in her bare arms, covers my forehead with noisy kisses, and says over and over, ‘You’re my dad, you’re my dad,’ as if in incantation.” It comes as little surprise when he later writes, “I can weep quite discreetly. People think my eye is watering.” But though there is sadness in these pages, there’s a remarkable absence of self-pity.

Through even the worst hardships, Bauby maintains an unlikely resolve that’s both impressive and admirable. Refusing to suffer the further indignity of a hospital gown after one of his humiliating weekly baths, he remarks, “If I must drool, I may as well drool on cashmere.” This is gallows humor of the very best kind, designed not merely to break the tension but to shore up the spirit.

There are other times when his resolve is directly emboldened by a sense of defiance. In a chapter titled “The Vegetable”, he explains how he began writing after some close friends overheard local gossips claiming he was entirely brain dead. Compelled to “prove that my IQ was still higher than a turnip’s,” he composes a series of dispatches to his friends and family that eventually elicit responses.

When considering what to do with all the letters he’s received in reply, he writes, “I hope to fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship. That will keep the vultures at bay.” If this were merely a vengeful rebuke to the gossips’ schadenfreude, it would be hard to blame him. What’s most impressive about it, though, is the way he’s able to channel the raw energy of his frustration into, if not quite optimism, then an obstinate refusal to give in.

But for all its ability to inspire, Bauby’s memoir is also noteworthy for the considerable beauty of its prose. Economical and considered out of necessity, considering how long each sentence must have gestated before finally appearing on the page, The Diving Bell and the Butterfly is so meticulously crafted that there isn’t a wasted passage or a superfluous phrase. (Imagine the novel Henry James might have written under similar circumstances.) Through such deliberate diction, Bauby relates his living nightmare with a dreamlike serenity that offers an enduring hopefulness while never avoiding the awful reality of his plight.

It would be tempting to say that English translator Jeremy Leggatt deserves an equal share of the credit if the sheer force of will required to produce the original manuscript didn’t make that so laughable. Consider the number of disposable words you read in a single day, the mindless sloganeering, the autopilot clichés, and then take a moment to ponder the level of commitment and endurance that went into producing just a few lines of this remarkable book. Has the term “awe-inspiring” ever seemed so inadequate?

There’s a moment in the middle of Bauby’s story when he considers adapting his ordeal into a play. Though the ravages of his illness kept such a work off the stage – he died just two days after his book’s publication –his experiences have been dramatized in a new movie of the same title based on the memoir. Julian Schnabel’s film has been widely praised, winning the Best Director prize at Cannes and earning some of the top reviews of the year. Even if this weren’t the case, even if the film was an abject failure by every measure other than its ability to draw more attention to its source material, it would be worthwhile.

Originally published a decade ago, The Diving Bell and the Butterfly is as effective an exploration of illness as any that’s been written since, be it Margaret Edson’s Wit, Philip Roth’s Everyman or Andrew Solomon’s Noonday Demon. Bauby imparts no simple sentiments of the type Mitch Albom trades in, and his proximity to mortality doesn’t imbue him with any panoptic insights or transcendent lessons to teach his readers. What he does have to offer is nothing more or less than an unforgettable example of how to live life to its fullest until the last respirator-aided breath.