Monday, January 08, 2007

Giving in to Grousing...

NOTE: I wrote this earlier in the week, when I was frustrated and probably a little angry. I don't mean for this blog to turn into a 'Me and my Chronic Illness' site, but as it is a part of my life -- and lately, a big part of my Foreign Service life -- I decided to go ahead and post this rather than deleting it. Anyways, thanks for understanding.
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.


Anonymous said...

I think your statistical analysis of the sample population is right on. Poppycock, indeed. Notice to all hyper-optimistic people that Tiny Tim is FICTIONAL/FICTIONAL (that's what you FS types do when you want to emphasize something, right?).

The shots thing sounds like a bitch (sorry if that gets me censored), and it's even more of a bitch that we have to worry about what insurance will cover. People live and die by the insurance adjuster in our crazy, messed-up world. Yay.

As for transcendence, it might help if you picked up a copy of Emerson somewhere. I seem to remember something about a huge, transparent, floating eyeball (the kind of recurring nightmare you get after an MA in English).

At any rate, your avid readership whole-heartedly support you, whatever you decide about the shots, and even if you do grouse a lot. :)


Anonymous said...

as someone who was diagnosed last year with NHL which is akin to saying to saying a slow boat to China cancer which will kill ya, I feel ya about that whole transcendence thing. me, I did the five steps of grief and basically accepted that I would do what I needed to do. i had guillen berrea (still can't spell it, 50% survival rate i was told) as a kid and had to relearn to do the walking thing in the midst of adolescence so I never had the slow decay of MS but rather it happened all at once. the rebuilding is still ongoing 30 years later but you do what you have to. but considering the alternative, what else can we do?

Anonymous said...


Before I joined the FS, I used to teach creative writing to kids in a cancer center, a job that was both very rewarding and extraordinarily difficult. (Believe me, it put the pain of visas into perspective.) I was sometimes criticised because the newsletter of kids' writings I put together wasn't "inspring" enough--as if it were the kids' job (and mine) to make others feel better about their illness.

You probably already know Susan Sontag's *Illness as Metaphor,* but if you don't, I recommend it.

I just wanted to say that I'm so sorry about the MS.

Your fan,
Amy S.