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Insomniaville -- All the Stuff that Keeps Me Up At Night

3/7 -- Uncertainty.

Bill and I finally went to see Dr. Hotshot, the MS specialist at Johns Hopkins in Baltimore. We went two weeks ago, but for some reason I haven't felt compelled to write about it until now.

And now that I've dealt with him I really do have to stop referring to him as Dr. Hotshot. He's a perfectly pleasant, affable, low-key guy who doesn't act at all like a doctor who makes you fax all your medical records to him so he can decide if he'll grant you an appointment. He remained cheerful even when I had to take off my shoes and socks and he had to get up close and personal with my nasty, gnarly winter feet so he could examine my lower legs.

(If I'd known he was going to do that, I would have given myself a pedicure. Really. Poor, poor man. Whatever he gets paid, it isn't enough.)

I hope you never have to undergo a neurological examination. But if you do, you should know that you're going to feel extremely silly before it's all over. You won't be sure if the doctor's testing your reflexes and balance or trying to bust you for DUI. If you're like me and favor big clunky shoes of the Skecher variety, you might want to forgo them that day for loafers or flats. You actually have to do the heel-toe balance walk that cops make you do if they catch you driving drunk, and the kind of giant Frankenstein shoes I favor don't make that test any easier.

And a couple of the tests reminded me of games I used to play with older relatives when I was a little girl. I'm talking "nursery school" little.

"Touch your nose. Then touch my finger. Now touch your nose again. Now touch my finger again. Again. Faster."

If you can do that without dissolving into giggles like a three-year-old, you're a tougher audience than I am. I could almost forget that I'm in the neurologist's office for a very unfunny reason.

Anyhow, he approved of everything my current neurologist has done. He confirmed the diagnosis. He agreed that I've got a relatively mild case of MS that hasn't done much lasting damage so far. He agreed with my doctor that my long-term prognosis is favorable (knock on wood). He thought I was doing really well with the Copaxone. He encouraged me to keep up with my exercise. And he wound up by telling me that I don't need to see him again unless something else develops and I want him to check it out.

I wanted to get my money's (well, my insurance company's money's) worth out of the appointment and asked him every half-assed question I could cook up. But of course, I couldn't ask him the one question that bugs me above all the others: Hey, doctor -- what's this stuff going to do to me?

Right now, I feel great. The numb left hand and the nightly Copaxone injections are the only ongoing physical reminders that I'm not the picture of glowing health. I've kept up with the treadmill and the strength exercises, and I'm probably in better physical condition than I've been in for most of my adult life. (I've still got a long ways to go, mind you, but the difference in my energy levels and my endurance after just a couple of months of walking on the treadmill has been remarkable.)

As much as I know that I might not feel this way forever, it's impossible for me to imagine what the disease might do to me some day. So for the most part, I don't. What the hell's the point? Nobody's got any guarantees, right?

I generally go about my life just as I did before MS entered the picture. But sometimes something will sneak up on me and trigger the worry and the wondering all over again.

After we left Johns Hopkins, Bill and I tooled around Baltimore for a few hours. I wanted to celebrate the fact that I'd "passed" a neurological exam with a bona fide specialist. We were both incredibly relieved -- almost jubilant. We ate at the restaurant where we had our wedding dinner, and I bought myself an obscenely expensive ring at Fire and Ice. (Someday I'll have to work on that "Spending too much money as a balm for frazzled nerves" habit I've got.)

When we got home, I leafed through the latest issue of "Walking" magazine. On the last page was an essay written by a woman who has MS. She used to walk all over the beautiful beach area by her home and hail her neighbors and drink in the salt air, but these days she walks in the water in a crummy, dirty public pool. The pool is the only place where she can still walk without needing any support from forearm crutches or canes.

Some well-meaning editor obviously thought the piece would be an inspiration to all those couch potatoes out there: "Surely if this Poor Pathetic Brave Person With MS does whatever she can to keep walking even as her body betrays her and the light fades, you could get off your big fat ass and walk around the block once or twice -- I mean, damn."

I didn't see it quite that way, of course. I felt like the rug had been yanked out from underneath me and that wonderful rosy glow of relief I had from the Johns Hopkins visit. "I walk in the pool because it's all I can do and I'm determined to do something -- but boy, does this ever suck compared to how life used to be." That's what the essay said to me. Realistic and honest? Undoubtedly. Inspiring? Not.

I tossed the magazine on the floor and brooded. Is that what's going to happen to me? Is that me ten years from now? That woman had problems with her legs from the start, and I've never had leg trouble -- does that make a difference? Does it even matter?

Eventually the gloom passed as it always does, and I went back to feeling happy over the outcome of our visit to Johns Hopkins. After all, we'd gotten no bad news, an affirmation that we were doing everything we should, and a cautiously optimistic long-term prognosis. It's as much as I can hope for, and I know I've got things really good compared to some of the people I saw in the waiting area at the neurology center.

Whatever happens to a stranger I read about in a magazine or see on TV has no bearing on what happens to me. I just have to remind myself of that sometimes.

The next entry.

Previously, in Insomniaville...

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March 2001