The Muse

Now, I could go on for hours about MS's physical impact. The difficulties walking. The difficulties standing. The difficulties getting into a standing position. The difficulties driving--not because my control is bad, but because my proprioception and sensory perception are bad. Yesterday, I removed my foot from the gas pedal, and I felt the pedal still pushing up against my foot. Fortunately, when everything is said and done, I'm still in total control of the vehicle (I wouldn't drive at all unless that were true). But the weirdness and the uncomfortable, they really get to me.

And of course there are other difficulties that don't find their way into the blog. If you're an MS sufferer, you know what I mean. Our "special difficulties" are all different, but, they're all the same, aren't they?

But it's the sapping of energy that by far is the worst.

Marjorie Hass, in a lecture on creativity, once said, "You can't command the Muse. You can only create an attractive place for it to land."

Well, as far as Muse-landing places go... about the best I have to offer is Death Valley. And that's on a good day. Usually, and certainly right now, it's the Salton Sea.

You'd never think of my composition/recording studio as a "sacred space." More along the lines of "shit everywhere."

And I don't have the energy to resanctify it. Physically or spiritually.

About all I can do right now is sit in my chair and poke at things, from a distance, with a stick. I've got a little bit of scut work to do to close out the school year, some grades to submit, and thank goodness the only energy I need for that is the ability to sit in a chair and poke at it with a stick.

We'll see what changes, now that daily classroom teaching is over for the summer. Next week is exams, then commencement--My Big Show, I'm going to have to drag my ass over to an organ at least a few times next week just to remind myself of how to play the processional that I wrote... I'm also going to have to get music folders ready, and that I'm worried about because my grasp of detail right now is zero. Acupuncturing coming up on Tuesday, that usually makes things better for a while--maybe the "better" will last longer this time, without the daily drainage.

As my doctor constantly reminds me, it's always too early to say "never" when neurological issues are involved, because you Just Don't Know. "Now," however, although I don't worry about it, I can at least describe it. And, well, "now"... pretty much sucks. As Bart Simpson once said, it sucks and blows simultaneously.

It's a nice day outside, though. Fresh air. Happy birds. Pleasant warmth. Clear light. From that point of view, "now" is pretty wonderful.

I may not be able to change "now," but maybe I can shift worlds. Let's see how that one works.

Struggles

Today was oddly tough. On many levels.

Had the final class of the year with some of my students. And probably, my final class ever, with nearly all of them. I only teach 9th grade computer skills; the kids that are in performing arts I'll at least see/work with again, maybe a small handful of them will take programming... but today and tomorrow is very much "goodbye." It's always happy, sad, and weird.

One of said classes didn't really feel like watching the cartoon I wanted to show them. Now, c'mon, it's the last class of the year, every other teacher is ratcheting up the pressure, and I show them a cartoon so they can have at least one period to relax. And they don't like the cartoon. And it's our goodbye. Oddly tough, that.

On the MS front, walking was very odd today. My right leg feels like an overfilled water balloon, except filled with mercury. It's odd, and uncomfortable.

The end of the school day was tough... I went to a meeting about this project... details aren't really important, except that it's something regarding which I have a terrifying amount of both expertise and experience. Like, more than thirty years of experience in said field. And the impression that I get is that The Enterprise (the disembodied consciousness that is the "institutionality" of the institution) really, really, doesn't want my help. Very clearly doesn't want my help. On some level, it's fine; it's not my problem, clearly it's not my problem, so why should I worry about it? But feeling that your help is so unwanted... it's weird. It's tough.

Physical therapy was tough. We spent some time doing things that just didn't want to happen, we did some tests to see how my leg and ankle proprioception was doing (in a word, "sucks," and really, I could have told them that, but hey, they wanted to quantify it, and there's no check box for "suck" on the assessment form.).

So, I think I'm gonna tear up the "maybe I'll do that tonight" list and pack it in. I made some turmeric/ginger tea tonight (you can get actual turmeric roots from the right stores, and although you can make it from powder, it's better out of the root), I think I'm just gonna lie back in my chair, drink my tea, and watch the new Mythbusters.

At least one thing needs to not be tough today.

A nice acupuncturing today. I seem to be back on the block-a-week plan, but at least the blocks I've been getting recently aren't as painful to clear as some that have visited me on the block-a-week route.

Some good news: the fit of wacko walking that hit me in Connecticut last week wasn't neurological (and thus not an attack/exacerbation/whatever they call such things--in short, it wasn't the MS going nuts), it was entirely muscular. A little psoas stretching, a little zero balancing, chiropractic tomorrow... things should be better. Or, at least, something that passes for better... I tend to interpret/perceive things as "not as bad" rather than "better," but to be fair, those two conditions are identical.

Had to call for a wheelchair at the airport. Walking down the skyway, that's OK. Walking the length of the terminal, with luggage in hand (which significantly unbalanced me), that wasn't OK. I didn't really take any emotional effect from it, fortunately. It did make things easier, but not so much easier that I thought "Well, this 'chair' thing is definitely for me!" I'm definitely not in a rush to use those things more often. And, I think, let's not say "not yet" because I don't want to commit to its use yet, even theoretically.

One thing that has been plaguing me for months (let's be honest, more like years; basically, around when the MS started) is gumption to get going; or, as some might put it, "motivation;" although I wouldn't describe the problem as not being motivated, but more about having "activation energy." This morning, I read an interesting article on Slate magazine about how to motivate seemingly unmotivated children. It said, among other things, that motivation is "a result of an interaction between environment and an individual's temperament ... and personality."

I spend so much time puzzling over chi, changing my ways of thinking, or biochemistry, I forgot about simple things like "environment." This is a problem I've had since before the MS... the Tibetan Buddhists say, "I take refuge in the Buddha, I take refuge in the dharma (teaching), I take refuge in the sangha (community of fellow spiritual journeyers)." I don't really have a sangha, any more. I had one at Yale... and my sangha has always been very small, at most a few people, usually somewhere between one and four. But I had one. Now, I don't. The people who I can take refuge in, and being with whom renews my spirit, aren't accessible. Facebook or e-mail doesn't cut it. I need to be with them, and I can't. They're all (a) on the other side of the country or otherwise at some huge geographic distance; (b) local but unavailable 'cause they're busy raising their children, or imprisoned by their careers; or (c) dead.

First thing that comes to mind is, "Well, then, I guess I'd better get out into the world." Second thing that immediately comes to mind is, "I don't have the energy to do that, so I guess I can't." Third thing that immediately comes to mind is "The people I do want to hang with, I can't. They're not available." So, I stay at home. And thus... I don't change my environment.

That's pretty much a paradigm death spiral, isn't it? And, I'm starting to wonder, how much of that is imposed upon me by circumstance, and how much is limitation that I'm trying consistently, diligently, and earnestly, to impose upon myself. An unthinking, knee-jerk, death spiral. The Buddhists say that attachment causes suffering; and here I am, with attachment to my own suffering... Now, that's a hell of a death spiral. Spiraling straight down into hell.

School's over in a couple of weeks; the big Commencement show is on the 13th. I will have stuff to do for the school over the summer (programming, among other things) but there's no reason I can't do that from my chair, or do that after I do things for myself, like some composition projects that I'm really looking forward to starting. And I can do it on my back porch, where I can get some fresh air.

Now there's an easy environment change. New air. New, fresh air is something that I've been craving for a while... time to pay attention to what my body is asking for.

Let's see if at least that can't be accomplished this week.