Wednesday, September 19, 2012

The Diving Bell and the Butterfly

I finished reading this beautiful book last night. It was written by Jean-Dominique Bauby, who was a victim of 'locked-in' syndrome after suffering a catastrophic stroke at the age of forty-four.
I picked up this book after it was mentioned in "Blue Nights" by Joan Didion--her daughter had read it. As I comb the internet in search of information on Mr. Bauby, who is, sadly, deceased, I found out there was a movie made of his memoir (I am so glad I got my hands on the book first, and I won't need to see the movie--the book itself is so vividly visual and full of imagery--a movie is not necessary).

I was sad reading the book--not pitiful sad, but spirit-sad. Soul-sad. That anyone, anywhere, is ordained to suffer this much physically. That anyone, anywhere, (and there are thousands upon thousands, all over this world of ours, suffering in any myriad of ways, at any given time, it's a thought that alights on me, unbidden, alot) continues to suffer, to endure, to struggle, through this life in stark comparison to those of us blithely, simply, living it. Through all our earthly little problems, what we, the healthy and lucky, perceive as 'difficulties', we don't, for the most part, have any fucking clue what real hardship is.

I can't say enough about this book--it begs to be read and to be faced up to. It invites the reader into some harrowing places. The body as prison. The syndrome as enemy.

Despite how removed Mr. Bauby's ultimately cut-off life was from my own, I found myself empathizing with him, with his dread of Sunday (a quiet day at the hospital where no one was around), his frustrations with but ultimate trust of his hospital caregivers. His joy at smelling the aroma of french fries when taken outside. The patience and sheer tenacity it would have taken to dictate a book to someone one letter at a time. His love of receiving written correspondence. All of this is a reminder to me of just how good we've got it. And how little precious time we spend wallowing in that very goodness.

It forced me to re-evaluate my whining about my own (hideously minor in comparison) health difficulties over these last four months. I've struggled to accept the limitations imposed upon me. No, really--accepting them has been near impossible. I even managed to accrue setbacks after refusing to heed medical advice. I had to, as I do with everything in my life, learn the hard way, treating my own heartbeat as a sometimes-nuisance, letting every little thing monumentalize itself in my head.

My friend L. and I have vowed to, remotely, since we live in different cities, start scribing a nightly gratitude journal so we don't lose sight of the beauty in this world as it whips by us at lightning speed.
I know that this book will be among some of the items I list tonight....

"I receive remarkable letters. They are opened for me... a hushed and holy ceremony. Some of them are serious in tone, discussing the meaning of life, invoking the supremacy of the soul, the mystery of every existence....Other letters simply relate the small events that mark the passage of time:  roses picked at dusk, the laziness of a rainy Sunday....these small gusts of happiness move me more deeply than all the rest. I hoard all these letters like treasure.  One day I hope to fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship. 
 It will keep the vultures at bay."
The Diving Bell and the Butterfly, Jean-Dominique Bauby, (c) 1997  pgs 83-84

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