Saturday, May 29, 2010


I'm currently at my wife's college reunion. It's also my college, I knew a lot of people in her class, and although it's not strictly my own reunion, it's a reunion experience. A "coming home" experience.

But things are different. Or, should I say, very, very "different" things happened.

At the airport coming in, we called for a wheelchair for me. It was, I must admit, a good idea. But I haven't even sat in a wheelchair since I took the traditional wheelchair trip out of the hospital after a tonsillectomy at age 14. Now, every time I walk, I wonder whether whatever problems are upon me that day are a sign that walking is coming to an end and soon it'll be time for The Chair. And when we landed in Hartford... we actually asked for a chair. I wouldn't call my experience of that weird, or even disturbing... but it was very, very... different.

Yesterday, walking across campus... if you can call it that, "walking," and you probably wouldn't have, had you seen it... I was barely able to walk. I mean, really quite literally "barely able." Fortunately, lying down for an hour restored what currently passes for "normal" functionality, and I'm back up to "pretty much walking well enough, I guess."

The last time I was here, for my own reunion, there was an energy in the air, and excitement, a thrill; something about the air said to me, "This is your 'place of power.' This is where you truly belong. This is what you're really all about." Today... it's just a place. Maybe what I was feeling was the presence of my own classmates, rather than the place... but today, it's just a place. Still, I really enjoyed the softness in the air, a gentle wind; those were really magical. But there was not the electric, transformational thrill that I got the last time I was here.

Which, I suppose, is good, because coming back here is both not possible and a bad idea (for many reasons, only some of which are related to The Disease) and having my home where it is, is the Right Thing, right now.

But still, it has been a very... different... couple of days, so far.

Monday, May 24, 2010

Whispers; possibilities

I think I may be hearing whispers... suggestions of the road I should be taking.

The presenter at this weekend's orchestration seminar offered some thoughts about why we create music. Now, truth be told, his thoughts did have a bit of "stoner profundity" about them... (in other words, they were the sort of thing one would come up with after a long smoking session, and the more stoned you were, the more profound they'd seem) but that didn't mean they weren't true.

Looking over some of the orchestrational techniques, I had ideas about how to approach a piece I've wanted to write for a long time; some possibilities which, if they offer what they promise, will clear some long-held writer's blocks.

Right now, they're still just ideas...

But I haven't had these kinds of ideas... real ideas, powerful ideas... for quite a while.

Having the gumption to actually sit down and do music writing... that has been a problem, recently. No ideas+no gumption=nothing gets created. But a big energy drain, daily teaching/slogging to and through school, will be clear soon. The summer tech team is going to want me to help them, but I won't have to do eight-hour days, and I can work on my own schedule.


At least... finally... I can feel that there are possibilities. Some roads that I had considered taking, over the past few days... I can tell now, are closed. But now... maybe, finally, I may be sensing one that is opening. Perhaps a path and a doorway that has always been open... but now, I think I may be feeling a gentle breeze wafting through that open door, beckoning me to walk through it.

Saturday, May 22, 2010

Wrong shouts; right whispers

I've been trying to listen to the voice of the universe, in whatever way it wishes to speak to me, to hear what new path I should take. A change... some sort of change... is necessary. The way I have been... well, being... needs to be left behind. It's time for a change.

All the messages so far have been "Not that road." I was thinking about picking up some training in ... well, it doesn't really matter. But it was something new; but I didn't really feel the wind gusting through the open door, the gusts that blow enthusiastically through a door that wants me to walk through it. Then I read the explanation of "benefits" from my insurance company... the only health-care providers that I use that they recommended. That they sent me to. And the explanation said that the amount they billed exceeded the cost agreed to by contract with said provider. So they would neither pay the full amount nor apply the amount they didn't want to pay to my deductible.

If there is a hell, it awaits health insurers who make their living making sure that mine is taken away from me, in bills that they just don't feel like paying.

So anyway, I took that as a sign: no new training.

I went to an orchestration class today. A fascinating class, taught by a Very Famous Hollywood Orchestrator. I met all sorts of composers, film composers mostly; some of them write commercials, write jingles, soundtracks for documentaries, all sorts of things.

They're nice people. But they're not "my people." I don't really fit in with them. I always knew that this wasn't a good path for me, but hoo boy, am I ever sure now.

So... many wonderfully clear indications of "that's wrong." And I'm taking those signs as a blessing; I don't regret any of them not being "my path."

But the right path... is not announcing itself nearly so clearly.

"Wrong" shouts. There's no doubt when something is the wrong choice. Ah, but "right"... "right" whispers.

The message so far: keep listening.

Friday, May 21, 2010

Getting better

I had my first "periodic review" at physical therapy today.

I did tell my therapist that probably, the MS hadn't gone away, and that considering the number of times I had grabbed for the wall to steady myself, I probably still needed physical therapy, if that'd save her the time of doing the assessment. Fortunately, she thought that was funny.

The results: Some things have stayed the same, but some things have improved.

Well, in the MS business, "not getting worse" is about as close to "getting better," as we get.

And "actually getting better" is even... well, for lack of a better word... even "better."

And, y'know, in the MS business... you take what you can get.

Sunday, May 16, 2010

Kai, in many forms

Kai: the sixth step of the hassetsu, the "eight steps" of kyudo. In English: Meeting. In kyudo, kai creates the seventh step, hanare, "release," the moment when the arrow leaves the string. But the release is one of the greatest mysteries in kyudo; the more you intrude upon the release, the more you intrude upon the very miracle of that release. Speaking from my own experience, the most magical release is the release that happens to you, not the release that you take.

I'm beginning to see the "magic of true meeting" everywhere. Both now, and in my own past.

The magic that the P/T therapist creates by meeting my needs.

The magic that I create in doing the P/T activities, meeting both my own strengths and weaknesses.

The magic in answering a student's question, and the question behind the question, not by repeating answers you've already given, but by approaching them via their own, unique, idiosyncratic understanding, at the moment at which the question was asked.

The magic of truly great teachers in your own life, who told you what you need to do to become more fully you, in this moment, in whatever pursuit they were coaching you.

The magic of the sound you get when you play a percussion instrument in the way that it wants you to play it. (Percussion--the way I was taught it--and kyudo are basically identical. But that's another story.) My best notes are ones the ones that weren't really "mine;" yes, I was holding the stick or the handles, but those notes came from somewhere else, because I was in kai with the instrument and the moment, and the release--the note--happened to me. I didn't play it.

So, I'm beginning to see a pattern... of meeting, of listening, of cooperation.

And here's a question: I don't want to say that the challenge before me is to "meet MS," because that makes MS a separate entity. It isn't. I don't want to say that the challenge is to "meet the MS experience," because it makes that a separate entity. And the challenge isn't to "meet myself," because then me and myself are separate entities. And they're not.

But meeting, listening, cooperation... are all integrative. They are all expressions of unity.

So, the world.. the whole world... is pointing me towards unity.

What then, should I do?


Saturday, May 15, 2010

A man can dream...

I'm really enjoying my new venture into physical therapy (P/T, I think, is the commonly used abbreviation). I'm finding it a wonderful expression of the concept of "meeting you at your point of need." Your therapist helps you today do what you need to do today to work on a weakness that you have today. And the goals are always wonderful: control first, power later; control first, speed later. Power and speed are useless without control; and really, even more than that, what good are power or speed if you have no means of controlling what you're trying to do?

In some recent electronic correspondence between college classmates, one (who is currently in P/T because he had some cardiac issues and was completely bedridden for a few weeks) described P/T as being "for people who or old or sick," and longs for the return of the day when he will be able to ditch this "therapy" stuff and go back to the good old days in the weight room.

Now, just think for a moment, how the world might be different if every person who wanted to go to the gym, or enter any fitness program, had someone with the same "meet you at point of need" guidance as I have been given in my own physical therapy. They might be told that flexibility is more important than bulk; that endurance is more important than short-lived force; and--here's an idea--that control is more important than raw speed or raw power, because after all, what good is speed or power if you have no control over it?

"Gentleness," after all, happens when someone has strength, but chooses not to use it. Given the choice between a world where people are so bulked up that they can't move, glistening with sweat, and grunting as they engage weight-lifting machines, and a world where people are powerful enough, flexible enough, strong enough--"enough" meaning "enough to meet their real needs"-- and have strength but, in choosing not to use it, are gentle...

Well... as Professor Farnsworth in Futurama once said, "A man can dream."

Wednesday, May 12, 2010

Drinking; "good" fatigue; now, that's comedy

Let's get the "drinking" business over with first, shall we?

New regimen from my doctor: Sufficient hydration. Divide your weight by two: drink that many ounces.

Well, I'm down to 175-ish (down from 205 or so, beginning of the century, before I went back to work at the high school; about, or maybe a little less than, my high-school-senior-year weight). Oh, let's make it 176, to make the math easy... divided by two, that's 88. Eleven eight-ounce glasses of water, per day. Or, a little less than three 7/11 "big gulp" cups.

And actually, that's easy. I can, and have, done more (I was up to four or more big-gulps per day, couple of summers ago). Doing the drinking is simple. Remembering to do the drinking, that's hard. But I just chugged down ounce number 88 and I'm still kinda cotton-mouthed, so I guess I do need to hydrate better.

I've been enjoying my P/T. It's making me a different kind of tired, "physical" tired rather than just "out of energy for no reason" tired. I do feel like I'm on the edge of pushing too hard, but there's a different quality to it... it's actually in my body, rather than just a fog that perfuses my mind and my soul.

I've never been a "I like getting exhausted by exercise" kinda guy. But this exercise is so gentle, and so thorough, and it's restorative, rather than just bulking me up. Or at least, trying to be restorative, as best it can.

If I had run into this kind of exercise earlier in my life, I might have done more of it. Who knows?

It's funny, the gentle, subtle things that MS introduces us to. It's funnier when we realize that without the MS, we might never have found them.

Reminds me of an exchange we had with one of my favorite teachers in my doctoral program. "The only reason we give you tests is so you'll review."

"Oh, we'll review," we said. "We'll review, you can save your time and skip the test."

She smiled. "Doesn't work that way," she said.

And thus it is with MS, it seems.

You've gotta admit... that's comedy.

Monday, May 10, 2010

Goals vs. methods

An interesting session at physical therapy today.

Before I say anything else, I have to say that the person I worked with today is astounding, wonderful, and absolutely perfect for my needs. We enjoy working with each other, and the rest of the staff all point to her as the person to work with neurological issues like MS.

All that having been said... I'm sure that today was as interesting for her as it was for me.

She was trying to help me build my abdominal "core" strength. So, she begins by telling me to "sit up straight," and then she's going to gently push my shoulders in various directions and I'm supposed to resist (and this resistance is going to build the muscle strength).

So I give her my best kyudo/Japanese meditation/Alexander Technique "sit up straight," which is very "tall," very upright, all the weight of the upper body over the dan tien, and thus the pelvis. We do the push-and-resist bit, and then she says, "You're not engaging your legs."

"Of course not," I tell her, "I don't need to. I have no weight over my legs." Well, she says that she wants my weight to be not over the pelvis but about halfway between my feet (I'm sitting in a chair, basically) and my pelvis. I adjust my posture, she's happy.

"You may feel like you're leaning forward," she says.

"I am leaning forward," I say, "... now. You told me to sit up straight. This" (I readjust) "is straight. The weight's over my center. I can put my weight where you want it, or I can sit up straight." Well... we tried something else.

Unfortunately, that didn't work, either... it wasn't that I wasn't trying to do what she wanted--quite the contrary--it's just that when she asked me to accomplish a goal, I was able to do just that. Accomplish the goal. But not in the way she expected (which, in my own defense, I must say that she never specified), so it didn't achieve the result she was looking for.

For example, she wanted me to exercise my deep abdominal muscles; she tries to do that by getting me to exhale fully. Which, after doing lots of kyudo (during which complete exhalation is called for) and all the singing I've done for most of my life, is no problem. Unfortunately, I can do that without using the muscles she wanted me to use. "Just suck your stomach in," she says. I do. "Good," she says.

"Yeah, but I can do that without exhaling," I said, with a lungful of air.

Eventually she found a position that enabled me to work only the muscles she wanted worked--and it worked really well, and I got a wonderful workout, and it's really easy to do, and I can do it by myself between P/T sessions.

The lesson: if you know exactly what you want, it never hurts to ask for that thing specifically, rather than something seemingly unrelated whose side effects are--usually--what you really want. In other words, don't expect "normal" responses from outliers. And... keep smiling, because then even if it doesn't work, at least we can laugh.

Saturday, May 8, 2010

Long-awaited answers; bliss and terror

At physical therapy this week (which I'm really enjoying), I got an answer to an "MS question" I've had for a long time.

I have always had difficulty knowing whether, at moments of trial, to push myself because it was "good for me" to do so, or to honor the desire not to push myself. My physical therapist finally provided the answer: If you have reserves, push yourself. If you have no reserves, don't push yourself. Pushing yourself when you have no reserves--that's when you'll get hurt.

OK. Finally an answer. I may not always be sure about whether I want or need to push myself, but I can pretty much always be sure whether I'm running on empty. When empty, don't push. Nice and easy.

Bliss: today I was at work, doing something to one of the computers, and while it was downloading something or other from Microsoft, I decided to do some tote renshu kyudo practice. In my school of kyudo, we have a moment called ten to chi, heaven and earth, which is not part of the "official" Federation kyudo form. It has always been my favorite moment in the form, and for some reason, today when I stood in that position, it felt just wonderful. I felt connected to the world, to the art of kyudo, to myself. For one lovely moment: bliss.

And yet, later this afternoon, I was contemplating a trip to the grocery store to pick up a couple of things, and I found myself fighting some vague terror about driving. I had been in the car earlier, I had had no problems at all--in fact, it was a better day than most, driving. But I kept hearing the noise in my head, "No, don't go to that fancy market, it's too far. Just go to the market two blocks away."

Well, I decided that damn it, I was going to the fancy market, if for no other reason than because the voices in my head needed to be shut up. And enjoyed the drive, and had no problem, and everything was fine.

But the frightened head voice... something's up with that. I don't know what, yet. But there's definitely something up.

Another gift of MS... ? Not the voice, I've had that for years. Who doesn't? But the terror... unearthing its cause, now that's going to be... interesting.

Among other things, I'm sure.

Friday, May 7, 2010

Gentle joys

We're winding down to (basically) the final month of school. Last day of instruction, June 4. On which very little instruction will be given, but we like to pretend.

I only teach ninth graders. I do interact with students at all levels, but in the classroom, the way things are currently set up, I only teach ninth graders... so at the end of this year, I'll never have these kids in class again. Ever.

And this past week, I've really, really enjoyed being with them. Even the screwballs. I've had many, many wonderful moments, simply explaining "computer stuff" to them. Really enjoyed seeing them smile when they saw how to solve a problem, especially when we solved it in a really cool way.

They'll stay friends; some of them will stay good friends. We'll do theater tech together, we'll play in the orchestra, a few of them will stay in anime club, probably until they graduate. I stay on good terms with all my former students, long after they've left school.

But our time together is ending. And it's beautiful, our time together.

I have never felt its beauty as much as I have this year.

A gift of MS.

Tuesday, May 4, 2010

Completely different

Got completely bowled over by today's acupuncturing. I'm still pretty loopy, I'm ducking into bed very very soon.

Got some good news on the MS front. I was worried that because my symptoms were worsening, it might be a foretaste of "you have progressive MS, not the 'good' kind, relapsing/remitting," but he said that it might be as simple as my recent cold (or whatever it was) simply aggravating things, colds are known to do that. So, we'll give it a few days, and see whether to start or stop worrying.

We had quite the discussion about "next steps." It is clear to me, and he agrees, that a Big Change in my life is called for. Unfortunately, neither of us has had any idea what to change.

I have begun to realize that I don't do anything for me. I don't write music for me. I don't write stories for me. I don't do magic for me. And when I don't have people to write music for, to write stories for, to do anything for... I'm stuck.

An art teacher told me once that he had no interest in looking at art that had been commissioned. He was only interested in art that someone had done simply for themselves; in that art, you see what they're really about.

It has been years since I created any kind of art (written or musical) for me.

My doctor's beloved teacher's final words to my doctor, spoken quite literally from his own deathbed, were, "Take care of yourself, my son."

Maybe it's time for me to follow that advice.

What form will that take? I don't know. I don't know anything, really, about what I need to do.

Except... it needs to be completely--completely--different from what I'm doing now.

Completely different.

Time to listen. The road I need to follow exists, it's already before me, and it's waiting for me to talk it. But I won't hear its call until, and unless, I listen.

Knowing that I have to do that, is a gift of MS. The rest... is up to me.

Monday, May 3, 2010

You just can't predict

A few years ago, one of my former students got stuck in some horrible bulk-digital-media sweatshop, doing cold-call sales. I visited the office at one point, to buy something from him just to help his sales numbers even in a small way; the workplace was so horrible that to this day I'm surprised that there wasn't an exchange of gunfire inside the office on a daily basis. In addition to being in a workplace that radiated "incompatible with life itself," he was completely unsuited to cold-call sales. He hated working there. It was living hell.

One day, the company needed a package for one of their products designed. Somehow, the job fell to him. And for some reason... he loved it. He took to graphic design like a duck to water.

He went to a college where they didn't teach design. It didn't stop him, he kept it up on his own... and today, years later, because of his self-taught design abilities, he is the recipient of multiple grants (one of them a Fulbright) which have paid for, among other things, education and repeated international travel. One of his recent projects (in the UK) has been targeted towards increasing the health and happiness of senior citizens, and people working in HIV/AIDS-care (in this country) are noticing his work, and his ideas are changing the way they think about reaching out to their own community. His star is rising so fast, it's hard to keep your eyes on it.

And none of that would have happened, had he not gone through hell. He lived with something that was, on a good day, unbearably nasty; and yet, hiding within the "nasty" was something that created something wonderful--someting that is quite literally changing the world.

Well, something very nasty has happened to me, courtesy of whatever set off the MS. But something hiding within the nasty may very well be something wonderful, something that can change the world.

As my doctor tells me nearly every week: With neurological conditions, you just can't predict what will happen. Still...

A butterfly flaps its wings, and on the other side of the world, a mountain trembles.

But which mountain? You just can't predict...

Sunday, May 2, 2010

A new dis-ease

I lost a few days of work this week, thanks to some sort of nasty ... I don't know what to call it. A cold? Usually, what I get (and get well before this time of year), the Chinese medical community would call "heat" (one of the Six Pernicious External Influences). All I know is, it involved coughing, kleenex-box-emptying nose blowing, watery eyes, headaches aplenty, and some really nasty-smelling herbs to chase it away--which I think said herbs are well on their way to doing. My acupuncturist excels at healing the spirit, but for things like coughs and other mechanical issues, my herbalist is without peer.

Now, as one of my Chinese (from "Red China," as he laughingly described it) friends would say, "I don't go to a Chinese doctor when I've got a hole in my side." But what they can cure, they can cure better and faster than anybody else. And, I hasten to add: nearly 100% of the time, completely without side effects.

At least it wasn't neurological. I can easily accept that it was facilitated in its attack on me by the MS, but the malfunction (thank God) wasn't in the nervous system. It did cost me three days of work, though, and it may cost me a trip to a local premiere of one of my compositions this evening. I want to go, but... probably best to let it go, alas.

One of the worst things I've been going through lately is disengagement from the outside world ("outside" being "outside of my house," at least, although "outside of my head" is a problem too). I'm living in a state of "sort of" dizzy. (I am so frakking sick of being in "sort of" states. On some level, I want to be broken, or not broken. "Sort of" broken, I've had it with.)

Walking is physically and mentally pretty strange, right now. Driving? Haven't done it since Wednesday. I don't know whether my current disinterest in driving is perceptive of hidden limitations and prudent caution, or some sort of irrational floating vague terror. Whenever I have gotten behind the wheel in the last week, I was certainly competent to drive... but as I sit here, and think "I'll just go to the store for x y z," I immediately think "But I'll have to drive there," and then decide not to go.

I did the dishes today. I made rice, I made ochazuke, tonight I'll probably make rice porridge with daikon and ginger broth--a great easy meal for people not feeling so good. Things that don't require dealing with a barrage of sensory input, I have no problem with. And y'know, truth be told, if the MS really went south and I couldn't continue working but I could still be a househusband, that'd be just fine. In the "dealing with MS" biz, you take the gifts you're given. But fortunately, we're not there yet, and as my neurologist constantly reminds me, with all things neurological, you never know what's going to happen, so there's no point in using words like yet, yet.

Gotta go back to school, Monday. Gotta drive there. The good part is, I absolutely adore my students and they're worth whatever I have to go through to be with them. We need to start the final project of the year, and my primary objective is for them to have fun (and simultaneously learn something without even noticing that they're doing it).

MS or not, bad walking or not, fear of driving or not, "sort of" dizziness or not--if there's one thing I can do, it's come up with, and have a ball doing, fun-generating stealth-learning projects.

And in the "dealing with MS" biz, you take the gifts you're given.