The Diving Bell and the Butterfly: A Memoir of Life in Death
Jean-Dominique Bauby (trans. by Jeremy Leggatt)
I emerged confident that my opinions–a good many received rather than thought through–were actually facts and those held by others were, at best, mistakes.
The decades since have been filled with unlearning that mindset and trying to accept humility.
Paramount among those opinions, formed in an enclave fighting the Reagan era with every fibre of its Frankfurt School and conservatory soul, was that anything that even hinted at success smacked of commercialism. That made such things questionable on both moral and artistic/intellectual grounds.
And so Julian Schnabel, the plate painting rage of the age, came in for particular scorn. Clearly this guy couldn’t be taken seriously. There’s nothing that compares with the scorn we can hold for those just a half generation older than us. I’ll come back to Schnabel, because he’s important.
Jean-Dominique Bauby was, in 1995, at the top of his game. As editor of French Elle he lived one of those lives they make movies about: exotic travels, beautiful women, the best food, the finest wines, loving children and, one supposes, the money that accompanies such success.
Bauby was 43 years old when, in December of that year, he had a massive stroke. Those last two words, together, represent one of the more brutal pairings in the English language. Bauby became, at an instant, a paralytic on a countdown timer.
It turns out there’s a term for a complete sundering of a mind from the failed body it exists within: locked-in syndrome. The thought alone is terrifying, the reality far worse.
My grandfather, at the end of his life, suffered a heart attack and, before he could recover, a stroke. I remember standing in his hospital room, watching in horror as half his body shook uncontrollably and my mother–his daughter and the strongest woman I’ve ever known–buried her tear-streaked face in my father’s chest saying over and over again, “Tommy, make somebody do something.”
I fled that scene in terror, hiding in the work due at the end of the semester and my cab-driving nights and weekends. I didn’t see my grandfather again until Christmas Day, by which point he’d suffered a second, far more destructive stroke.
The mute twisted form in the bed in front of me bore only a passing, diminished resemblance to the man I’d known. By now he was almost completely paralyzed; breathing without a machine was still possible, but not much more. I remember looking across the room as his face, only for an instant, relaxed and I saw him again, in there, trapped and aware and unable to tell anyone.
That was the last time I saw my grandfather alive. I took more shifts, ostensibly to plow tuition dollars into my bank account. I returned to school. I cowered from the terrible knowledge I alone seemed to have been granted. His death was no relief and it took decades for me to cry about it and longer still to start trying to forgive myself.
So maybe, just a little, I comprehend being locked-in.
In this short memoir, dictated over a period of two months, Bauby tells the tale from the other side. The wonder of this book is that the living mind fought its way out of its failed capsule. And the manner in which it did so serves as an astonishing example of the will to live, communicate and connect.
Each day, Bauby tells us in the Prologue, he “compose[s] these bedridden travel notes” which he then dictates “letter by letter.” He retains some small ability to move and sense; he can even close his one eye willfully.
This is how he communicates: a therapist, visitor or aide moves a stylus across a card bearing the letters of the alphabet arranged by their frequency of use in the French language. When the stylus alights on the desired letter Bauby blinks. Thus, what he is thinking is transcribed.
It’s an astonishing effort, made the more impossible because he must fully compose and edit his prose before dictating. Yet he does so, telling the story of his days, his life, his illness. Though no chapter is long–how could it be?–Bauby packs in astonishing amounts of detail and observation.
Surprisingly, there is little here that is overly sentimental. Bauby has been hospitalized in Berck-sur-Mere, a seaside town some remove from his Parisian stomping grounds. Yet a return to the metropole by ambulance for a consultation doesn’t evoke maudlin self-pity. Instead, he notices all the minor characters he passed by each day in his working years and wonders if his colleagues, toiling six stories above him, can even conceive of him lying strapped to a gurney below them.
Don’t mistake such restraint for lack of emotion. When his children visit, and he cannot communicate with them even as they can’t truly comprehend what has happened to him, his pain is very real. When his tolerance for his state reaches the boiling point he reacts as anyone would. He assigns nasty nicknames to hospital staff. He invents unflattering backstories for them. He attempts to gurgle and blink his displeasure.
Yet he remains locked in.
And, as I suspect was true of my grandfather, he is aware not just of what he has lost, but of what he is losing. Consider the full quote that begins with the caption in the nearby hospital photo:
“I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.”
Bauby’s struggle is to live in what he calls his diving bell and make his peace with the freedom of the butterflies. In what is perhaps the book’s climactic moment, a bundled up Bauby, in a wheelchair, is brought to the beachfront promenade and wheeled along, taking in the air, the sights, the sounds and, to the dismay of his companions, the smells. “But I never tire of the smell of french fries” could be the book’s epigram.
A note on the title page tells us that Bauby died two days after publication of this book in France. Somehow, that seems fitting. His great work, after all, has seen its completion and I think in some ways it is a great work.
And Schnabel, what of Schnabel? Well, in 2007 Schnabel directed a movie of this book–a movie that, once again, I saw before reading the book. The film is seared in my memory. Not only did Schnabel capture Bauby’s eye for the telling detail, he conveyed his emotional state and presented some of the most arresting images I have ever seen in a film.
So I was wrong, happily wrong, about Julian Schnabel. And I learned that thanks to Bauby.