Recently, I re-read a favorite book that has had an immense impact on me. “The Diving Bell and the Butterfly” is a memoir by Jean-Dominic Bauby, who was the Editor-in-Chief of the famous French fashion magazine, Elle. In 1995, when he was 43 and at the peak of his career he had a devastating stroke that left him completely paralyzed but entirely conscious, trapped by what doctors call ‘locked-in syndrome’ (the diving bell in the book’s title) leaving his mind free, like a “butterfly”. Using the only functioning muscle – his left eyelid – he began dictating his remarkable story, painstakingly spelling it out letter by letter. The short (132 pages) book was dictated laboriously via 200,000 blinks of his left eye in response to a recited alphabet, his sole means of communication. It must have been a very long, tedious and frustrating experience. He died a few days after the book was published.
Waking up from a coma three weeks after his stroke, Bauby writes “At first some of the staff had terrified me. I saw them only as my jailers, as accomplices in some awful plot. Later I hated some of them, those who wrenched my arm while putting me in my wheelchair, or left me all night long with the TV on, or let me lie in a painful position despite my protests. For a few minutes or a few hours, I would cheerfully have killed them. Later still, as time cooled my fiercest rages, I got to know them better. They carried out as best they could their delicate mission: to ease our burden a little when our crosses bruised our shoulders too painfully.”
Another incident that Bauby describes: “Finally we reach the farthest point of our journey, the very end of the promenade. I have not insisted on coming all this way just to gaze at the flawless seascape. I have come to gorge on the aromas emanating from a modest shack by the path leading away from the beach. Claude and Brice bring me to a halt downwind. My nostrils quiver with pleasure as they inhale a robust odor – intoxicating to me but one that most mortals cannot abide. ‘Oooh!’ says a disgusted voice behind me, ‘What a stench!’ But I never tire of the smell of French fries”!
Imagine sitting quietly in a chair, unable to communicate while friends and family gather around, talking animatedly. Not being able to enjoy the pleasure of scratching away that nagging itch. Smelling the wafting flavors of favorite foods but not having the ability to taste anything.
An 86 years old person sharing a bench with me in the park this morning, sighed softly and said, “The sky is so blue with no clouds. It is so quiet here. I could say that I hear myself think, but there are no thoughts. Like the sky – my mind is blank. But here’s a thought for you. Do what you want when and while you can and you won’t have any regrets. And oh, I might not even remember what I just said to you by the time I get up to go home.”
Having been through a few health issues, I very much appreciated his comment about the value of “here and now” because these are the only moments one has any control over. I revisit Bauby’s memoir frequently, because it serves to remind me of life’s simple pleasures and how fortunate I am to have the ability to make all kinds of choices every minute of every single day. Lounge around on the deck; nah, go cycling. Have fried eggs with toast or boiled eggs and avocado. Coffee or tea. Read, write, paint, listen to music, watch a show or just take a nap.
It is all gone in the blink of an eye.
Paul McCartney agrees: