Body 02 May 2006 01:12 am
for pete’s sake…
Today I am grateful that I am not terribly conflict-avoidant.
I am also grateful for Wild Divine, the neat biofeedback video game that Josh got for his birthday. I’ve been playing with it and revisiting my old biofeedback skills. It’s fun to play a video game I don’t suck at, and it feels kind of like magic to move things around on a screen without using mouse, joystick, or keyboard.
Thanks to this mix of natural crabbiness and hours of relaxation training, I was able to have a difficult email exchange with my trainer without completely losing a polite tone. (Though I was maybe a little over-Cameronian in my approach of considering four conceivable rationales for his position and squashing them one by one like fat aphids.) There were some things that needed to be brought out into the open. Now we’re both annoyed. And yet, this feels like progress.
It was Disability Blogging Day yesterday, and this would have been a pretty good jumping off point for it, even a day late. But I’m already sick of the particulars, so let’s skip to the big generalities.
I’m not looking for a display of empathy; I’m not looking for a display of sensitivity. Getting and staying sick was disappointing, but I’m over it. I don’t need anybody getting all huggy with me about my weirdo chronic illness, and if I did, I’d get a therapist already. What I look for is is a lack of jackassery. Alas.
update, 10:30 a.m.: Now I’m feeling a little bad. Written communication isn’t this guy’s strong suit, he’s basically a nice kid, and I kind of stomped him. Oh well. As I said to my friends on #foo, I’ll have to be extra kind to stray kittens today to make up for it. Or something.
on 02 May 2006 at 6:59 am 1.Rechercher said …
Um, so does that mean we act like you don’t have the illness? Seriously, I’m wondering.
on 02 May 2006 at 9:38 am 2.Cam Sculpin said …
Not exactly. And, okay, I may accept some hugginess with my huggier friends from time to time, heh, but there have been folks who think I’m looking for it from any random person who has to know about my illness, and it just ain’t so.
Imagine that you have a good friend who doesn’t have a car for some good reason. He lives across town, and your local mass transit’s not so good. There are a lot of ways this’ll slow him down — he can’t go out at a moment’s notice because he has to arrange transportation, and sometimes he says, “No, man, I’m not spending two hours on the bus today.” It’s a pain. It’s unusual in our culture. If you want to see him, often you wind up having to pick him up or go to his house or meet at some transit-friendly location.
But you probably don’t get all fuzzy with him over how inspiring it is that he can live without a car, and you don’t feel extra-specially good about yourself that you are friends with this guy without a car, or whatever. It just isn’t this dramatic emotional thing.
And on the other hand, you don’t pitch a fit about how Bob is a bad friend because he doesn’t have a car. You don’t declare that he has a character defect, nor treat him as stupid or childish or pitiful or fragile. It isn’t that kind of dramatic emotional thing either.
You just say, “Oh, right, Bob doesn’t have a car,” and that’s that, and accept the occasional limitations and inconveniences that this brings.
And maybe it’s even sort of interesting to you — how does somebody live there without a car? What kind of stuff does he put up with? How’s his life different from yours? What does he know about the city that you don’t see from a car? — and you can learn from his experiences. (After all, you know, maybe someday you won’t have a car. Maybe you’ve been thinking about going car-free.)
Disability is really, really ordinary like that.
Now, CFS/CFIDS can slow me down in a friendship and sometimes it’s been part of bringing one or two to a full stop. I’ve had people whine at me about my lack of energy for them, and I’ve had at least one person drop me because (as far as I can tell) I wasn’t dragging my tired carcass to their parties. That’s jackassery. It doesn’t show so much online, but sometimes I do run low on energy and time awake and have to bow out of exchanges that I’d otherwise like to pursue. Or sometimes my expressed interest in the illness has been taken as unseemly or whiny.
And, on the other hand, the occasional “Oh you poor dear so sick that is so tragic you are so brave!” that I get from people just weirds me out. Because, gosh, you know, life’s good. Life’s excellent. I’m happy to know that they recognize it as a serious illness, but, uh, hey. I’m not exactly the poor sad little waif in the snow here.
So I think the ideal position for a friend to take vis-a-vis my disability is to cut me slack when I’m not giving them as much energy as they would like or when I seem extra ditzy, accept that I have an interest in CFS/CFIDS research, accept that I have some expertise in finding my limits and making do, and be amused/annoyed along with me when I point out something really dopey that somebody’s said. Accept that it’s an aspect of who I am, but also accept that it’s nothing more than that.
You know: just don’t be a jerk. You have mastered that fine. Would that everyone in the world had mastered this.
I don’t want to speak for the Disabled Community — especially since I pass so easily and am chock full of privilege that way — but I think that’s a pretty common sort of position.
on 02 May 2006 at 11:28 am 3.Josh said …
(a–’s post you linked to there is friends-locked. I assume it says roughly what nihilistech’s and yours say, though.)
on 02 May 2006 at 11:44 am 4.Cam Sculpin said …
Whoops! Yeah — I don’t want to speak for her, but I’d say we’re pretty much in agreement. I’ll just pull that link there.
on 02 May 2006 at 9:59 pm 5.Lisa said …
Hum, so you like Wild Divine? I’ve been tempted to get it for months. What’s it really like? (Stuff that the promotional stuff on the website doesn’t say…) Is it woo woo cheesy or just a way to make biofeedback interesting?
on 02 May 2006 at 10:09 pm 6.Cam Sculpin said …
I do like it! It’s a little woo-woo cheesy: apparently my “energy has become converted” and I am “freed from the selfish constraints of the earthly realm”! Rock on! But it’s really not as cheesy as you might think — no cheesier than any average video game I’ve seen, for sure. The graphics are very pretty, and there are neat biofeedback challenges. Sometimes you have to make your energy (for lack of a better word) calm, sometimes lively, and sometimes it’s about holding it steady.
The real cheesiness is on the accompanying CD of songs from the Wild Divine Band. Oh my.