Strike Up the Band

"Arise, and do not be afraid."
--Matt 17:7

Today in Portland the world famous Rose Festival Parade takes place. Sant Louis has gone downtown with Roy. I myself am content to experience the thing secondhand.

It is raining, as usual. In 55 years, I think the day of the parade has never been sunny. It's some sort of jinx. All these Oregonians standing on the sidewalks in the rain, unwittingly starving for vitamin D, growing MS in our central nervous systems like dry rot in wet kitchen corners.

Gee, that was an unpleasant sort of thought, yes?

Yesterday I happened to be sitting quite a while in a hard sort of chair, a chair with a wooden seat, reading Jojimbo, a comic book in the Indonesian language, when I noticed that my legs had by and by gone all but dead, but for a sort of thrumming feeling, if you know what I mean.

Now I don't know if this was related to MS, or to sitting in a hard chair, or to sitting in an awkward position, or to sitting too long, but whatever it was from, it afforded an opportunity to experience in a purely physical sense what it would be like to lose ones ability to walk.

Feeling (or rather not feeling) is much more complete than imagination when it comes to things like this. This loss of proper sensation and function is not paralysis, but it is the next closest thing, and I suddenly understood what it is about MS that puts people into wheelchairs.

It is not that you cannot walk at all, it is just that doing so, even from one end of the house to the other, would take hours and eventually result in multiple injuries.

Well, eventually my legs returned to normal--normal for me, that is--more of a low level, manageable sort of thrumming, and I was glad to be stumbling about at my baseline. It was almost like being perfectly healthy. It is all relative, you see.

And I had learned something, experientially, such that my appreciation in real time had deepened.

MS, after all, is all about learning, right?

Yeah right. Sure it is.

An Argument

I am having an argument with my body, and this morning my body has the upper hand (which is a polite way of saying that it's kicking my ass . . . which, of course, is it's own ass).

The reader may already be aware of my "bad box of Avonex" issue, the ensuing extremis of the flu-like symptoms I suffered from said bad box, and my growing feeling in the wake of all this that continuing to inject Avonex might be a downright stupid thing to do.

Two weeks without Avonex, and I have felt great. I haven't felt better in years. Two years and seven months, to be precise.

Until this morning.

This is the argument that my body makes, a rather pointed argument, an argument of stiff limbs and phantom pains. It is an argument forcefully made. Like a headlock. Like a fist in the face. My body does not pussy foot around. It goes straight for the solar plexus. Yes, my body has got me by the balls.

After slapping me around for awhile, all the way from the bedroom to the kitchen and back again, it pauses to state its point a bit more gently (i.e., I laid back down on the bed).

This, my friend, is why you are taking the Avonex. Remember? It could be worse, you know? Do you want me to make it worse?

Well, then again, maybe I just slept wrong, I say. It's just a matter of shaking the kinks out.

You think?

It could be.

Are you willing to take that chance? Could be, you say? What would you guess the percentage on that is? What are the odds on that horse, Dude? And what about that demyelination on your brain and spine. Just a once in a lifetime accident, you think?

Could be, yeah, I answer, unable to come up with a better response. After all, my legs are hurting, my hips are hurting, my neck is hurting, and I feel dizzy and disoriented.

Dude, you're pathetic, by body says.

Well, there's no need to get snippy.

Oh really! No need to get snippy? So here's what you're saying, right--you're saying that just because you're too much of a wimp to take a few flu-like symptoms, I'm left with running the risk of ending up crippled, rolling around in a wheelchair, depending on people to do every damn thing for me.

No, that's not what I'm saying.

Maybe it's not what you want to be saying, but it is what you're saying, it's exactly what you're saying.

But that's not what I want. All I want is for us to be in agreement on this thing.

SO SHUT THE HELL UP AND TAKE THE DAMN SHOT!

And so it goes.

Yesterday I received my two replacement doses of Avonex. Are they good ones? Are they bad ones? I don't know yet. I am supposed to take a shot this evening, yet I still just do not know. I guess I'll wobble around and think about it for awhile, stumble over to Starbucks for a coffee.

Did you hear something? A whisper just then . . .

**stumbling beats paralysis, Dude, seven days a week**

Wow!

Wow, I just read about a guy, a fellow Oregonian, with secondary progressive MS. Eight years younger than I, and all but completely crippled. No use of either leg, no use of right arm. Dude, that's messed up. I guess I take my rather benign relapsing and remitting type way too much for granted. On a positive note, I am already old, and so there is not that much time left for MS to do its thang. Good to be old, so good. It's all relative, right? Damn right.

Still, how old would I have to be for being crippled not to matter so much?

I don't think there's a good age for that. Even at 80, I'd prefer to still be walking on my own two feet.

Seriously. I mean, even when I'm 80, my wife will still only be 56. About my age now.

Gad!

Hold on. I have an idea. Maybe it's best just to live day to day. Yeah?