The great jihad

It came to me today, that my struggle with the M.S. symptoms/remedies/physicality... is with none of these.

I'm not on any of the nasty Western drugs. My herbal formulas taste funny at worst, and other than that have no side effects. My acupuncturist hurts when he pokes certain points; when the needles come out, the pain (both of the needles and, often, something afoul with the soul that the needles are trying to address) goes away immediately.

I've adapted (physically, at least) to the not-walking-so-good. Yeah, I can't stand up behind the stove/sink/whatever in the kitchen like I used to; I have to step in and out of the shower very carefully; I have to go out of my way, sometimes a long way, to avoid stairs, because I kinda can deal with them but my walker definitely can't. All these are inconveniences. Annoyances.

Having no energy. No creativity. No ability to play the organ; to stand up while holding (even while pretending to hold) a bow; to stand behind a xylophone or timpani. Those mess with the expression of my self... my soul. And those... really, really, suck.

But I find that the greatest struggle is not with the external effects, but with the internal effects. I'm not fully engaging with my self, especially with how I truly feel about the external "annoyances," because those are the tip of the iceberg that runs very, very deep within me.

As the saying goes, the great jihad... is the internal jihad.

A lovely blog site I just discovered, Tiny Buddha, poses a beautiful, powerful question. Which I can't answer.

And I want to. As this question asks, have I been lying to myself? About how I feel about the M.S. experience... well, I guess--I've been avoiding the question, strenuously not answering the question, because merely facing the answer (much less proclaiming it) is surprisingly, very surprisingly, difficult. And is it time to start creating happiness? [Insert favorite expletive here] YES!

But that can't happen until the avoidance, the denial, the lying, stops.

Of all the things the M.S. road demands of me... that is the hardest.

That's funny

I think I'm finally starting to get angry.

Earlier this week, I was trying to show a student how to read a drum-set score and how that translated into left-foot-high-hat and right-foot-bass-drum. And I couldn't even stomp my left foot in place. I certainly couldn't do the same controlled "waving" motion, slapping the ball of the foot down onto the floor but not using the larger leg muscles. I had to use my thigh to raise my foot off the floor, and when my foot went down, it went down nowhere near where I wanted it to go down. Or even expected it to go down.

I tried doing tote renshu, bare-handed (no bow or arrow) kyudo practice yesterday. I was standing with the backs of my legs against the bed, so I wouldn't fall over. I nearly fell over anyway. So I sat on the bed and did it seated, so I wouldn't fall over. I nearly fell over anyway.

I tried playing the organ pedalboard on Thursday. I could barely move my feet from side to side on it (almost not at all, without grabbing my leg and dragging it sideways), but I couldn't control my legs even close to accurately. Especially bad was my left foot, which used to be the better of the two; even trying to stomp with my whole leg, I couldn't make the pedals play with any accuracy. Or even at all, sometimes.

I can barely open the kitchen trash can with its foot pedal. My foot slides off every other time I try to use it. Or more frequently than "every other time."

And, I think... I'm finally starting to get angry about this stuff.

Which, honestly, maybe a step (as it were) in the right direction, if I've been so insistently denying my feelings about ... let's call it what it is, at least what it is right now: my disability.

There. I said it. Disability.

Spring has an energy of "new beginnings." I feel it in the air; I feel it in my soul. And yet, there's so much that I just can't do.

And I'm not there yet... but I think I'm starting to get angry at it.

"Never give up hope," my doctor told me. I'm holding hope at a distance, too; I haven't given it up, but I'm sure not embracing it.

There's no "doing" to be done. There's listening, and being a full participant in the experience. (Which is one of the big lessons of kyudo... something else that I'm having a horrible time doing, thanks to the M.S.) But there's nothing to be done about it. Absolutely nothing.

And that's hard. That's goddamned hard.

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At the school this weekend, some of the kids are putting on a "clown show." They're learning the art of clowning. Looking at the pictures of the cast in their noses and makeup, it's going to be a wonderful show. I'm hoping to go see it Sunday.

To show my support for "the team," I wore a clown nose while I was jaunting around in my motorized wheelchair. The kids loved it--the ones in the show really loved it.

At some point, I thought, "A clown. In a wheelchair. That's got to be funny."

And it was funny. It was goddamned funny.

What a journey, this M.S. highway. Alternating between horrible and hysterical.

Now, that's most definitely goddamned funny.

Luck

I've been extremely disconnected from pretty much everything; especially the calendar. I'm staring down several "Do I really have enough time to get x/y/z done?"... I got a lot of a new composition written but I need to put it through the "polishing" phase and I haven't had either the time or the energy to face that... I'm finding both leg strength and control, especially control, to be fading quite rapidly.

Now, the "control" thing is an interesting question: do I not have control, am I losing more control, or can it be regained if only I worked at it? OK, I'll bite. But I need to have the strength to work at it, and when I come home from work I hit my bed and sleep for two or three hours, then I lie in bed awake for three or four hours between midnight and four (or five)... It's hard to squeeze "let's work on 'control'" into a day like that, when so many other things demand the few hours—minutes—of awake and able-to-do-anything that I have.

Like I need more "interesting challenges" on this M.S. road. School will be out in a month (gasp! Lost track of time! So much to do! Crap!!!) and once I manage to make it to the second week of June, once I stop being surrounded by our five hundred adorable disease vectors and attention sappers, I'll have the strength to try to build strength. There's a conundrum for you.

Beethoven once said, "Damn counterpoint!" For me, it's "Damn conundrums!"

In other news, I found a lovely quote on Facebook this morning:

Remember that not getting what you want is sometimes a wonderful stroke of luck. —Tenzin Gyatso, the 14th Dalai Lama

Well, I know that I didn't "want" M.S. If anything, I wanted the opposite: a working nervous system.

I wonder when I'll realize that it has been a "wonderful stroke of luck," this M.S.

The strange thing is, that in some ways, I know how it already has been. And in other ways, I'm still struggling to simply accept being in the state I'm in.

Perhaps leaping that particular hurdle—acceptance—is that very stroke of luck I've been promised. Dealing with denial is a very large Life Hurdle, always has been, and—sorry, I simply can't resist the urge to use this particular expression—with my M.S., denial just "doesn't have any legs."

So... a stroke of luck?

We'll see.