Katie, 12 January
This weekend (a long weekend for those of us here in Japan), I downloaded the entirity of NPR's Memorable Moments of 2006 to listen to while I crocheted. A lot of the stories are intensely moving. The ones about illness dealt primarily with cancer.
This got me thinking about the socially acceptable response to disease. One should be, of course, devastated upon receiving a diagnosis of a chronic illness. This is acceptable. You are allowed a period of 'why me?'-ness. Some 'angry at god' time. But then? Well, this devastation should morph into a desire to 'fight'. To overcome your illness. In the words of the NPR commentator who has been sharing the story of his cancer treatment over the course of the year:
I'm not spending my time thinking why me, though. I don't have the time. I think about the old saying, "We aren't given the burdens we deserve, we're given the burdens we can bear." I have work to do, because I'm going to fight like hell.
I just want to point out that this is absolute poppycock.
You don't fight a disease. It's not something you can challenge in some sort of physical sense. You can't ask your illness to play a game of chess with you, or run a race against you, or try for basketball shots from the freethrow line. "Hey cancer, best out of three..." It doesn't work like that. And furthermore, who says we're only given the burdens we can bear? The sample population on which those types of inane sayings are based is rather skewed: people who couldn't bear it just aren't around anymore to disprove the notion. According to a recent book I read, 20 of the 93 people whom Dr. Kevorkian helped die had MS. Some burdens aren't bearable, despite the platitudes.
I think what people really mean when they say they're going to fight a disease or bear a disease or do anything besides just HAVE a disease, is that they're going to remain upbeat. "I won't let my cancer get me down!" "I won't let MS stop me!" That's the sort of thing we like to hear from people with chronic or life-threatening illness. That's our standard for whether or not the person is admirable and praiseworthy in her or his handling of the situation. And you know what? That is a really crummy thing to ask of someone. So now, in order to retain society's respect, I am required to be perpetually perky? I have to smile and give a big thumbs up and say, "Oh, not to worry, just a little incurable disease! Think of all the fun ways I could decorate a wheelchair!"? Gee, thanks a lot. I think somewhere in there I'm also supposed to find Jesus.
To NPR's credit, they did publish one of the few realistic stories I've heard about dealing with illness. The following exchange I thought was particularly true to life:
Rebecca remembers that follow-up visit with the neurologist.
"He said, 'You know, I've seen a lot of families go through this and there's a lot of different ways people handle it. But there are some families can pull together and achieve this kind of transcendence,'" Rebecca remembered.
"And transcendence was the word he used -- where they go through their grief and their anger and everything else, but they really have something precious that they hold onto in the end. And I think one of the things that I feel worst about is the fact that I never felt anything like transcendence. I never achieved anything like that with my family. Instead of things sort of coming together and us having a wonderful, glowing "transcendental" experience, it was really quite the opposite; things just kind of dissolved and got down to a very, very basic survival level."
What a burden to put on a person, telling her she has to achieve some sort of spiritual growth through dealing with her husband's malignant brain tumor. Making her think she's a failure because the experience wasn't wonderful and glowing.
Sometime this month I'm supposed to go back to Tokyo and arrange for MS medication. The medication is a daily injection that I have to give myself. I'm told that it hurts like a bee sting. It has to be refrigerated. It costs $1600 a month -- a third of my salary -- and it's not clear to me how much of that my insurance will cover. The medication is not going to take away my MS, or reverse any damage. I don't get to think, "Hey, just 6 months of this and I'll be cured!" It might slow down the MS. There's a 2 in 3 chance that it won't do anything at all. A lot of time and energy and money and pain for a 29% chance of merely reduced increase in symptoms. What an awful choice. Like I have a choice.
My New Year's resolution was to not grouse about my MS. And also to finally beat it at checkers.