Wednesday, December 17, 2003

Sometimes I find being confronted with sadness keeps me humble.

Im reading a book called "The Diving Bell and the Butterfly," by Jean-Dominique Bauby. (The French title is "le scaphandre et le papillon") Bauby was the editor of the French version of Elle Magazine. He suffered a massive stroke at the age of 43, which left him quadraplegic. The only movement he could make was blinking his left eye. He wrote the entire book with a code that he created through the blinking of his eye. I just couldnt imagine if my mind was intact and I could not express anything at all. No facial expressions, no hand movements, no responding at all, yet having all these things in my head that I want to say. The worst was when he talked about his children came to visit him, and he couldnt touch them, or respond to their stories. Bauby died a year after his stroke, 2 days after his book was published.

I've seen movies like Stepmom, or My Life where a parent is faced with death. They know they will die and miss their childs life. They prepare by making movies, writing letters, and making scrapbooks. They somehow try to be present at an event that hasnt even occured yet, but knowing it will happen.

There is a patient who knows she is going to die. There was the one defining symptom which occured. At first, she was hysterical. She's only 45. She has 2 kids aged 12 and 14. Its not her time. Now, when she comes in for her chemo, instead of being in the treatment room with the rest of the patients, she goes to a room in the back. There, her sister helps her create a scrapbook for her daughters. She sits quietly and writes letters
meant for each milestone in their lives that she will miss, in an attempt to be there for her girls. I pass by her room to see her reaction to what she's doing. She is so focused and diligently working on leaving a bit of herself with her kids.

It takes a brave person to accept their fate. Both Bauby and my patient dealt with the unexpected and fought as much as they could, until they knew the only thing they could do was join them. Its only recently that I could feel the meaning of the words, "They were courageous til the very end."

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