Diving Bell and the Butterfly

Through the frayed curtain at my window, a wan glow announces the break of day. My heels hurt, my head weighs a ton, and something like a giant invisible cocoon holds my whole body prisoner. My room emerges slowly from the gloom. I linger over every item: photos of loved ones, my children's drawings, posters, the little tin cyclist sent by a friend the day before the Paris–Roubaix bike race, and the IV pole hanging over the bed where I have been confined these past six months, like a hermit crab dug into his rock.

No need to wonder very long where I am, or to recall that the life I once knew was snuffed out Friday, the eighth of December, last year.

Up until then I had never even heard of the brain stem. I've since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. That day I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took my brain stem out of action. In the past, it was known as a "massive stroke," and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as "locked-in syndrome." Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.

I've known about `The Diving Bell and the Butterfly` for a while. I find the concept fascinating, and the House MD POTW got me to poke around a bit more. Someone gave me a link to a free first chapter from the NY times, which I promptly read. I want to get my mitts on a dead tree copy even more, now.