“The Diving Bell and the Butterfly” is a whip cracking just in front of my face, a cosmic wake-up call, a reminder of something I know well and say all the time — love what you’ve got, because it could all go away in a heartbeat.
This is what happened to 43-year-old Jean-Dominique Bauby in 1995. One minute he’s a king in Paris: the editor-in-chief of Elle Magazine, father of two, friend to many, a successful man taking a test drive in a new BMW. The next moment he has a stroke that attacks the brain stem.
Twenty days later, when he emerges from a coma, he is pretty close to what hospital workers, with their stark lingo, would call a “gork” — he’s completely paralyzed.
Except for his left eyelid.
He can blink.
With the greatest effort, he establishes that he wants to communicate. A special language is invented: A personalized alphabet is read to him, and he blinks to choose the letters. In this way, he is — though trapped in a world of such silence and distance that it’s unsettling just to think about it — able to “write” this slim, 132-page volume. [To buy the paperback from Amazon, click here. For the Kindle edition, click here.]
The smaller the focus, the sharper the vision. Julian Schnabel, the painter-director, understood this and made an unforgettable film.
Because every word costs so much, Bauby becomes a master poet. He recalls scenes from childhood and visits from his children, and while he savors them, he also notes that, with every day, “I watch my past recede.” But he presses on. He writes a monthly newsletter, reads his mail, listens “to the butterflies that flutter inside my head.”
His life is reduced to mind and vision, but it is enough for Bauby. He does not pray that “the giant invisible diving bell” which holds his body prisoner will lift long enough for him to throw himself out the window. He does not even wallow in self-pity. At the end of the book, he looks into the purse of the saintly woman who is transcribing his manuscript and notices her metro ticket and hotel room key. To him, these are like objects from a space probe — they describe a life now alien to him.
“Does the cosmos contain keys for opening up my diving bell?” he wonders. “A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking.”
Then he ends that thought — and the book — with these simple words: “I’ll be off now.”
These words resonate with special force because, two days after the book was published in France , Bauby died.
Is it too glib to say that he no longer needed his lifeline?
A friend once told me an ancient Jewish story: People come together in a room to rid themselves of their troubles. They put those cares in the center of a table and go around the room describing them. Then they get to choose the troubles they’ll take home. And each person chooses his own.
I felt that way after reading “The Diving Bell and the Butterfly” — relieved that the troubles I’m carrying around aren’t heavier. And grateful, oh so grateful, that I am still strong enough to lift them.
This article originally appeared on The Head Butler
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