(Did I mention that the awesome images from this and the last post are from the Multiple Sclerosis Postcard Project, linked to in my blogroll? Worth a look.)

So it happened today, as I was walking along downtown Manhattan clutching my husband’s arm, that I suddenly had to stop, look at him, and say “You know, I really don’t walk very well anymore.” Which he kind of brushed off, because, well, duh–but then I sort of clarified, “no, this isn’t like a ‘gee, when I was tired on tuesday I wasn’t really walking very well’ sort of intermittent comes-and-goes MS thing. I mean this is it. This is the way I walk now. Not that well.” Those of you with some MS experience probably know what I’m talking about–the umbrella cheerfully designated “gait problems” that covers a drunken-looking lack of balance, a draggy fatigue thing, and in my case a distinct list to the left as my right side just doesn’t want to move that well. It’s not so bad… mostly just looks like I’m having a really rough time being pregnant, I think.

I had a great conversation with someone about wheelchairs recently–I pointed out that having a chair would significantly broaden my shoe options. More specifically, I could break out the two-thirds of my shoes that are high heels again… the ones I can’t wear now, because it’s hard enough shuffling around like the town drunk as it is.

Then my friend asked, “but won’t people think it’s weird?

“What do you mean?”

“Well, you know, you can walk sometimes, so if you got up and down at all then people might think that if you weren’t wearing the heels, then you wouldn’t need to use the chair.”

“????” (I was a bit taken aback at this)

“You know, someone might think that you could walk just fine if you were in more sensible shoes. They might say something.”

There was a touch of pre-emptive, hypothetical irritation that always comes along with the idea that random, invasive public judgements are something that, you know, I should care about. Then I saw the humor in the whole situation for what it was.

“That would be awesome. I can’t wait for someone to say something like that to me–I’d have to be all ‘Wow, check out Dr. House! Makin’ the controversial diagnosis! Sure, some of the best doctors in New York think it’s MS, but this guy doesn’t follow what the herd says! He’s gonna have me out of this chair! He knows the truth! It’s gotta be the shoes!’

Still, though, I think all of this emphasis on how sick I do or don’t look at any given time has really taken up way too much of my brain for too long, to the extent that it’s actually overshadowed how sick I actually am at a given time. In other words, I tend to base my “good days” and ” bad days” on how well I’ve managed to convince other people that I am. Now that I’m eight months pregnant, it’s kind of awesome. I can huff and puff, I can wall-walk, I can demand chairs, I can sit right down on the floor, I can refuse to walk up a flight of stairs–and it doesn’t neccessarily mean that I have a chronic illness, just that I’m a big ball of gestating entitlement. Which, of course, I am.

The danger here, as always, is in letting myself go along with the joke too much. As in, today I actually found myself thinking about all things I’d do when I’d had the baby and, you know, felt better. Because I wasn’t pregnant anymore. You know… when I got my energy back. After I disembarked from the fantasy train to self-deluding wish-fulfillment land, I did wonder exactly how long I’d be thinking in Milestones. You know the Milestones–if you’ve been seriously-sick but not forever-sick, you’ve played the Milestone Game.

Once I get out of this hospital and am settled in at home, I’ll feel better and things will get back to normal.

Once the semester starts and I can figure out a good routine for getting around, I’ll feel better and things will get back to normal.

Once the semester ends and I can get some sleep I’ll feel better and things will get back to normal.

Once I get pregnant and those hormones kick in I’ll feel better and things will get back to normal (OK, this one was asinine, but I was grasping at straws).

Once this pregnancy is over and I have a chance to settle in with the new baby I’ll feel better and things will get back to normal.

And so on.

Nah, probably not. As I said today… I don’t really walk all that well. Anymore.

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