May 2007


(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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I had prayed for everybody: my talking family, cousins far away, passerby, and all the lonesome Christians. I expected to be heard. My voice was certainly the loudest.

Grace Paley, “The Loudest Voice”

~

There have been various updates about the little girl Cecily’s situation on Dave Hinsburger’s blog Chewing the Fat, all of which are worth a read, but suffice to say she’s on the mend and doing well. We couldn’t be happier, and wish her and her family all the best.

In Sis-Update, Cecily’s mother writes a touching-if-unsettling letter detailing how she ran into some of the same prejudice with Cecily’s surgeon as she had with her daughter’s “well-wishers.” Personally, I find this chilling. So does Dave, apparently, and in What If? he writes with intense yet understated anger about what might have happened had Cecily not been able to handle the situation and win her doctor’s heart quite as much as she did.

As a mother, I cannot imagine having to wage a constant uphill battle against a presupposition that my child’s life had inherently less worth than that of another child. I really want to be an intellectual about matters of faith–I really do. I want to be one of those people about whom it’s said: Well, she’s certainly no zealot, you can’t put all religious people into the same box, look at how intelligent she is. The sort of person who makes calm, reasoned, brilliant atheists realize that there can be calm, reasoned, brilliant… theists. And yet, when I begin to stray from the theoretical into the realm of actual belief, I keep coming back to these issues on which I will admit no argument. Like Cecily. Or Katie. Or Ashley. I suppose I’m not really ready to fit them into a sane, reasoned defense of an ordered universe.

Seriously? Nevermind for a minute that I don’t understand petitionary prayer very much, nevermind my kookly interreligious issues, and nevermind that I think prayer requests are often a little bit much.

Go here, now, and read Dave Hinsburger’s request for Loud Prayers on behalf of a mother who’s been on the receiving end of some really chilling “prayers” for her ill daughter with Down’s Syndrome. Since reading the post anyway will make you want to yell at someone, might as well do something constructive with that urge.

“Putting out fires” is a phrase anyone in the restaurant business will recognize; it unfortunately also seems to sum up my school/work/health/family situation as well which is not particularly fun. I’ll try to accentuate the positive with this post, but understand that a great deal is going unsaid, and most of that is pure, unadulterated stress.

However, first bit of lovely news: I took a break from treading water at school to pretend I was an ace student again at a theology department reception, and I received a lovely lovely pin from a theology honor society. Of course, being the size of a barn (a really, really short barn) didn’t exactly add to the experience:


“Wear black, honey, it’s slimming.” Maybe not in the seventh month, right?

~

Another enjoyable thing: DJ Buddha’s marvellous response to Chris Hitchen’s “God is Not Great.” It’s so thrilling to see a Buddhist response to the spate of atheist-polemic topping the charts these days. The blog is worth a look too.

~

Finally, I can’t even begin to express the gratitude I feel to various family members for making it possible for me to buy a car. Even though I feel like a sheep and a consumerist drone, even though I now have to care about gas prices, and even though my husband and I are trying to overcompensate in every other possible way (we’ve cut out using plastic shopping bags and water bottles, we’re going to be composting, etc.), I have to say I love this car.

Suddenly, I can go places. I can register for class next semester (provided, ahem, that I get my shit together enough to do so). I can see family. I can take my kid to the Botanical Gardens. I can buy groceries.

One slight, tiny issue that I have with said wonderful family who bought me the car, as well as every other person I know since I bought the car, is their glee that I can use “handicapped parking” and the insistence that I get that placard right away. Now, for once this isn’t an ego issue–I don’t have a problem acknowledging myself as disabled and so forth. Rather, I look at the limited availability of accessible spots and ask- Why? Why do you want to me to take one just because I can? Why should I take the spot from someone who might actually find themselves unable to maneuver their chair out of a non-accessible spot? When I need the damn spot, I assure you, I’ll take it. However, if I’m still ambulatory and having a relatively good day, why on earth would I? I guess I just… well, I don’t really like the whole tone involved with the “Now you can get one of those spots!” thing–as though I’d better milk the system as much as I could because the average person is being so completely inconvenienced on behalf of the disabled that my (dear, sweet, nice) family wants to see someone they know “get something out of it.”

Meanwhile, the more I play in the shallow end of disability culture, the more trouble I have seeing it quite that way.

Still, despite that little (or not-so-little) quibble, I do love and adore having a car and feel like a princess in it. In honor of that, a photo of me as happy pregnant lady, academics in jeopardy but still able to hide the belly behind a tote bag so it’s aaaaalllll good.