Tuesday, May 20, 2014

Approaches to Life and Death

In reading the biography of Gilda Radner, I naturally think of two good friends of mine, both my age, who died of cancer within just a few months of each other. I spent a lot of time with both of them during the last few months of their lives. J was determined not to "waste her pain." She wrote a blog about the lessons she was learning, she shared her struggles and fears with family and friends, she even started a Bible Study. In contrast, N just quit life. She didn't see any point to anything. She was just too tired; she was ready to be done with it all. There is no one way to respond to illness. I admired the way J responded, and I wonder how I'd respond to a cancer diagnosis. I was talking with a neighbor the other day who was telling me about the illness of another neighbor of ours. This other neighbor is in a wheelchair now, and embarrassed to go out. That was my first response to the ataxia diagnosis. I was embarrassed to go out in public with the symptoms. Thankfully, Mr. M knew that I would go stir-crazy and get depressed staying in the house all day. I got out as much as I could, even if it was just sitting in the back yard watching the clouds form different shapes. I was as involved in church and Bible Study and spending time with my family as I could be. (I think; those 10 lost years are pretty much a blur. I just remember feeling as if I was in jail most of the time, and trying to keep my schedule as close to that of a healthy person as possible.) Even though my ataxia has gotten worse (as it is a degenerative disease), my symptoms are now so well controlled by the right dose of the right combination of drugs that I almost forget that I have a disease at times. I don't remember much from when I was first diagnosed except that I was very, very scared. I was working at the library when I was diagnosed, so every free minute, I was scouring the medical reference books, and all of them said that a person with ataxia will look and sound drunk. I asked my friends repeatedly if I was looking or sounding drunk. The books also said that a person with ataxia could expect to be in a wheelchair within 5 years of the diagnosis. That scared me more than anything. I had spent a lot of time with people in wheelchairs and I knew first hand how dependent they were on others, and I couldn't imagine living that way. I think, though, that I tried as much as I could to participate in life in those early, scary years, even when that participation meant just enjoying the breeze in the back yard.

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