Barnstorming on an Invisible Segway

When I wrote this entry and said I was having four hour periods of not being dizzy once every six days, I knew there would be a problem with it, and there was. It comes up a lot when you talk about a chronic illness or disability to more than one person. It's one of the reasons I don't talk more about it (other reason: not being able to do stuff and feeling crappy is BORING), but I thought it was worth talking about because it's a problem I haven't seen discussed much.

I got an e-mail from a friend congratulating me on having a period of feeling good every day, and cheerfully opining that this friend would far rather have a chunk of feeling good every day than have one whole good day and then a whole bad one.

You see what happened there? My friend is generally a careful reader, like most of you are generally careful readers. But between the lj page and the e-mail, "once every six days" had transmuted into "once every day." It could have happened to anybody. It was, it seems, bound to happen to somebody when I made that post, because it generally does, and when it does, it's never the other direction. I never have to correct someone thinking I said I felt decent about once a month that it's actually more like once a week. Anyone can make a simple mistake when they're reading someone else's journal quickly; heaven knows I do enough of it. But on this topic it's never in the other direction. It's never in the "I thought things were worse for you than they actually are" direction. And I'm very clear that it's not that I have the absolute worst situation ever. It's not that there is nothing worse my friends could imagine. Many of you make a career out of imagining horrible things; I have no illusion that mine is the pessimal condition. So that doesn't explain the error always being in the happier direction. What does explain it is that the people who care about me really want me to be doing better.

But here's the thing: it takes a non-trivial act of will to say, "Yay! For approximately 4 out of every 144 hours, I feel all right! That's nearly 3% of the time that I feel moderately okayish and normal! After a year and a half of PT exercises and coming up on two years of really bad problems, not to mention the slightly more erratic problems preceding it, I get not quite 3% of the time feeling decent!" I think we can all agree that from an objective standpoint, this is not actually great. If someone came up to you out of the blue and said, "I only feel okay not quite 3% of the time," you would be pretty upset for them, and worried. This is only good compared to, say, 0-2% of the time feeling at all well--which is what I've been having before, so I can actually make myself make the comparison. But that act of perspective--that it's better than it was, that it's some small amount of progress--is really, really important. It's a huge personal momentum difference that does not appear by magic. This is not the kind of great that's like "someone is sending me on the fabulous vacation of my choice, timing my choice, expenses paid!", intuitive kind of great. It's worth working at. But yah. Work.

Having to correct somebody who is being Supportively Pleased For Me that, in fact, they need to hold off on being quite that Supportively Pleased For Me because things are not nearly that good yet really, really interferes with my ability to maintain that positive perspective. It shifts my focus from what I do have in terms of my current health and physical abilities to what I don't have. It's also very easy to read in the Supportively Pleased tone when the person who is using it thinks your situation sucks--particularly when they offer mitigating factors to try to help you be happy with the way things are--and when they've overestimated how good your situation is and are still trying to cheer you up about it, it's doubly hard to stay positive.

And...I am a big believer in taking ownership of one's own reactions. I am a big believer in not setting social traps for you people. And I'm a big believer in not punishing you for wanting me to be doing better--that's not a win for anybody. I don't want anybody to feel bad when they were trying to be happy for me. But this is the kind of error that feels like I have a broken toe and you've just tripped and stepped on it. Anybody could trip. It would take a great big jerk to be mad at somebody for tripping. But damn, that broken toe was aching already, and now it's throbbing.

Also I am quite aware of some of my friends on whom I had previously counted sort of evaporating in the course of all this. And I don't want to make people afraid to say anything at all. The person who tripped and stepped on your broken toe at least showed up. They were there for you, spending time with you, and stepping on you was incidental to the fact that they were spending the time. That hasn't been true of everybody I thought it might be true of. I'm very grateful that it's not true of everybody, or even most of you.

But what it means is that it's often a great deal easier for me not to talk about it at all. Not because I think people don't want to hear it. Because I can't always deal with their reactions. With your reactions. That's where I'm going with all of this: several of you have told me recently that I can vent to you, and I really appreciate it, and I believe you. But sometimes I can't. It's not that I feel you wouldn't hear it or couldn't be supportive. It's that I'm not always able to process the responses and still do what I need to do to keep moving forward. And sometimes it's not even that anybody responds suboptimally. It's just laying the stuff out in black and white in rows and columns that stacks it up in ways it had previously not stacked. I can't always predict that.

I asked my friend whether it was okay to post this with the identity filed off, because I didn't want it to feel like "Why Friend X Sucks By Mris Age 31." Unsurprisingly, Friend X was more interested in hearing how I was doing than in keeping the internets from hearing that someone had made a minor mistake of the type anyone could make. That's the kind of friend X is, and I appreciate it. I don't want anybody to think I don't. It's just that sometimes I'm limited in how I can respond, and I wanted to see if I could maybe make it clear why.