In college, I had a terrifying incident of sleep paralysis. I woke in the night but could not move or cry out. My mind was fully awake but I was quite literally trapped in my frozen body for several minutes. Finally I was able to shake it off, my heart pounding, but I was totally freaked out by the experience. It happened to me one other time, ten years ago, when my oldest was a baby. I was in the process of falling back to sleep after getting up in the night to feed her, and the same thing happened.. my mind was not yet asleep but I could not move. I panicked and finally shook myself out of it, thankful that it only lasted a minute or two.
In reading The Diving Bell and The Butterfly, I revisited the terror of those moments of sleep paralysis. Imagine the horror of those moments stretched into years. Vibrant 43 yr old Jean-Dominique Bauby, editor in chief of the glamorous French Elle magazine, father of two, renowned for his humor, wit, energy and style, suffered a massive stroke that injured his brain stem. He survived but was left paralyzed and unable to speak, with only limited movement of his head and left eye. His intellect and cognitive functions, however, remained completely intact, a condition appropriately known as “locked-in syndrome”, a kind of living death.
Imprisoned in a body he has no control over, Bauby’s only escape, his sole entertainment, are the memories of his glittery Paris life before the trauma. Like a butterfly, he flits through recollections of trips and meals and family and friends, the pleasures of a life forever lost. His imagination makes it possible for him to survive without anger under the most horrific and constrained circumstances.
Sandrine, his speech therapist, unlocks his ‘diving bell’ with an alphabet board and a communication code that allows him to blink out messages. In this painstakingly slow way, he communicates with loved ones and is able to write this spare, haunting memoir. Not a word is wasted.
We truly feel his aching loneliness and regret. One part I cannot stop thinking about is a time when he is at the beach with his children after the stroke. He and his son are playing hangman. It’s from page 71. I had to set the book down and go hug my kids before I could read any further.
“My heart is not in the game. Grief surges over me. His face not two feet from mine, my son Theophile sits patiently waiting- and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Theophile. Don’t be scared, little man. I love you.”
At once heartbreaking and inspiring, this quiet gem of a book gave me a new appreciation for the small moments and minor physical feats our bodies accomplish effortlessly each day. I was amazed at Bauby’s indomitable spirit, and inspired to live life more fully and consciously. What I came away with was this: at any time it can all be taken away, so appreciate what you have while you have it.