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Quote It Saturday 11/7

Posted Nov 07 2009 10:00pm

Believe it or not, I have finally caught a virus, maybe the one the rest of my family had two weeks ago or maybe a new one (Jamie's starting to get congested again now). Although I've spent another week flat on my back, it's almost a relief to have "normal" symptoms like other people! For days, I've had a fever (a real fever!) and congestion. Who knows - maybe this virus will finally knock down my hyped-up immune system so I can get back to "normal." My spirits have been good, in part because of my nice weekend last week and in part thanks to some perspective gained from reading a wonderful memoir earlier this week.

The Diving Bell and the Butterfly by Jean-Dominque Bauby is the memoir of a man who was editor-in-chief of the French Elle magazine until a massive stroke left him with locked-in syndrome. He is paralyzed and can only move his neck and one eye. He communicates (and wrote his book) by blinking his eye. Kind of puts CFS into perspective, doesn't it? His book is uplifting and inspiring; his attitude is amazingly positive. You can read my full review at my book blog.

Here are a few brief quotes that I could relate to as someone living with an isolating chronic illness (while clearly recognizing the differences!)...

The doctors brought him a wheelchair, which made him realize that his situation was permanent and not improving, and caused him to move toward acceptance and consider the effect on friends and family:

Oddly enough, the shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection around me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome.

I think this is similar to what happens when someone with CFS is finally diagnosed, and I love the phrase "a barrier of affection." What a perfect description!

While someone wheels his chair outdoors along the shore, he spots a lighthouse:

I placed myself at once under the protection of this brotherly symbol, guardian not just of sailors but of the sick - those castaways on the shores of loneliness.

"Castaways on the shores of loneliness' - what a beautiful and fitting phrase!

And, finally, considering the difference between his old life and his new:

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memories.

I would highly recommend this book (and I've heard the movie made from it is also excellent), especially on a day when you're struggling with self-pity. Bauby's words are honest and inspiring.

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