Tuesday, February 26, 2008

The Spoon Theory and More About Hearing Issues

A few years ago, I was looking on the Web for more insight into my mother's illness, myasthenia gravis, in hopes I could understand a bit better why sometimes she seemed fine and other times couldn't even come out to dinner at a restaurant.

At the time, I thought I understood fatigue, but as I've since learned, there's fatigue and then there's fatigue.

Anyway, I came across a really cool site called But You Don't Look Sick, and while browsing it, came across an essay written by a woman with Lupus who is trying to explain to her best friend what it "feels" like. Please read the full essay here. Seriously. I'm going to summarize, but it won't be as good as the full essay.

At the time, I had what Oprah calls "An Aha Moment." Or so I thought.

In the essay, Christine Miserandino writes compares having an illness like Lupus that affects your energy levels to having a specific number of a concrete object (you could use poker chips, pens or anything, she uses spoons in her metaphor) that you have to "spend" to get anything done. Healthy people have, if not a limitless supply, almost as many as they want. People with this type of chronic illness, or my mother's myasthenia gravis, don't. We have a very limited number, far fewer than we had before we got sick, and when we run out, that's it. And of course, some days, you have fewer than others. (Boy, have I been feeling that one lately. I went to a friend's 3-year-old son's birthday party on Saturday and got so wiped out that I'm still recovering on Tuesday and don't think I've made it out of my pajamas yet.) (Ok, actually, I've changed pajamas several times so I'm not in disgustingly dirty ones, but still just wearing PJs. It's all I can manage. I even went to the acupuncturist in my PJs today. Hey, it's Portland. No one cares.)

Anyway, I came across the link for The Spoon Theory when a friend sent me a link to a page her partner (also a friend) had set up to remind friends and family and others how to best communicate with the hearing impaired. (You can read it here.) Most of it was stuff I already knew -- my mom is deaf and I grew up with a lot of what's listed. But I'm not all that used to thinking about those tips in relation to me. Especially the parts about making sure you have someone's attention before talking and the part about facing the person you're talking to.

I generally don't have problems if I know someone is talking to me and I'm concentrating on the conversation. But if I'm doing my own thing in the family room and Scott starts talking to me from the kitchen (which is all one big room, but opposite ends), I don't always realize that his words aren't just more background noise that I've got going in my head. And the other day, we were all in the kitchen but Scott was making his lunch for the next day so he was facing the counter and had his back to me. He had to repeat what he was saying three times before I caught the gist. Following the tips on that webpage would solve these problems. Assuming we're always perfect and never forget. :)

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