It's a horrifying thought: to think of what it would be like to have locked-in syndrome. Being paralyzed and trapped inside of your own body without being able to communicate. Everything happening around you as a feeling of claustrophobia tightly grips your mind. Trapped in the diving bell of the body. It's rigid chamber keeping you in. Its ribs wrapped around your organs, bars made of bones. Each cell, its own prison. Each moment, a sentence without an appeal.
A few years ago, I watched a movie called "The Diving Bell and the Butterfly" and subsequently read the book. This is the true story about Jean-Dominique Bauby who had been editor-in-chief of Elle magazine before he had a massive stroke at age 43. The damage to his brain resulted in locked-in syndrome. He was completely paralyzed except for the ability to blink one eye.
Bauby lied in a hospital bed with the ability to see and feel all of his surroundings (his personality and intellect still intact), but unable to connect with the world around him for years.
This story caused me to have considerable anxiety. I imagined myself as Jean-Dominique Bauby. I imagined feeling pain, a terrible itch, a fly on my nose and being unable to stop it. I imagined not being able to feel pleasure or say "I love you." I imagined having great ideas, thinking of funny jokes, creating new concepts and having to let them all die inside of me - a graveyard of little gifts buried deep inside my brain.
It frightens me to my core.
My girls must feel this way sometimes. I guess all babies do. Their feet are cold so they cry out and we change their diapers. They have a tummy ache so they scream loudly and we try to feed them.
I do my best to listen to Laurel and Juniper. I can hear subtle differences in their cries. I know when June has rolled to her stomach in the crib and needs a hand. I know when Laurel is being a sleep monster. I know when June Bug is hangry. When Laurel Bear is bored. I do my best.
But things won't always be this easy. The list of things they will need from me will get long. Their worlds will get bigger. Their bones and brains will grow.
I worry that Juniper will have trouble communicating. I worry she'll become trapped in her shell. But I need her as much as she needs me. Please god, don't put her in that diving bell.
Sometimes when she looks at me and bats those beautiful lashes, I think about how it could all be taken away from me in the blink of an eye.
Dr. Luke has used the word "regression." She says that it could happen. Or maybe it won't. It's a word I try not to think much about. But it's one of those ghosts that haunt me in the darker parts of my mind. So deep and dark, in fact, that I find my mind collapsing around it to protect me as I write. I cannot continue. Perhaps another time...
Jean-Dominique Bauby did find a way to communicate. He and his speech therapist devised a system to allow him to form words by blinking. And so he wrote a book. A book that was turned into a popular movie. It's a beautiful story.
There inside the diving bell, somehow he found a way to let the world in. And even more miraculously, he found a way to get out into the world again.