Monday, May 30, 2011

Today's question

I picked up a rose for my wife the other day. A plant, not just a cut flower, in a cute little tin.

After a more than a "few" days inside, it was looking quite worn. It had definitely passed its prime, as a "lovely houseplant."

I didn't toss it in the "plant recycling" bin; I put it outside, on the back porch.

In two hours (if that long) it was looking much better. Clearly, being outside, had made it very happy. Immediately.

"Outside" was what it needed. Being as it was just a plant, it's not really possible to say that being outside was what it "wanted"-- but needed? Oh yeah. Instantly obvious, how it sprang back to life, when it got what it truly needed.

So, that's the question for today... what do I need? My neurological impairments are acting up; I feel like I'm on the edge of needing a cane inside the house, there are other issues I don't think you want to hear about but oh, do I get to hear about them, it's at least 72 degrees and my legs feel, more often than not, nasty cold... And that's just body; my mind and spirit definitely feel like they've been mistreated, like they want some TLC, like they want something as crucial to them as sunlight was to that poor little plant.

So... what do I need? I don't know... it's not like "what do I want" is that much easier of a question. But if I could only answer one of them, I'd answer the first.

Well, at least one thing's clear: answering that very question is very clearly... one of the things that I need.

Sunday, May 29, 2011


A truly, truly lovely day outside, here in southern California. Various thermometers report between 68 and 72 degrees, and I'd be just pleased as punch to have it a little warmer, but there's a wonderful wind; and there's little in weather that I crave more than gently moving, very fresh air.

I took a break from working on some music to sit outside in the back yard, and just sat and looked and listened. I didn't "do" anything, I just sat there, and enjoyed the air.

I looked around at all the things I "could" tidy up, all the things I "could" put right, all the improvements/modifications I "could" make, and I thought, "I've done nothing out here, for years. I used to do all sorts of things. Starting a project used to be no effort at all--sometimes, even finishing it was no effort. I wonder... could I still do things out here? Could I tidy up, even a little? Could I do... something? Anything?"

One of the plants, a four-foot high ginkgo tree in a pot, had been blown over. I thought, "I'll do 'something.' I'll pick that up." Which I did. But it was not easy. I stood up (eventually), I walked the fifteen feet from my chair to the tree (eventually, one very halting step at a time, quite concerned that I was going to fall over at any minute, with each step), and I returned the tree to the upright position (easy). And then walked back inside (eventually).

I guess that explains why I've done so little out there since my nervous system got ravaged... Well, if it doesn't explain it, it certainly demonstrates the reason for my backyard-adventure lassitude.

But I did enjoy the wind.

What can I do? What should I do? Of the things I should do, which can I do? Of the things I can do, which should I do?

And the hardest question of all: what do I want to do?

Of all the questions, that's the one I can't even begin to answer.

But the wind... I enjoy the wind. And, on days like today, I can sit in the yard, and enjoy the wind. And so, maybe I should.

On the M.S. road, so few things are clear. When they are clear... perhaps that's the gift that we need most to reach for, and to embrace.

Friday, May 27, 2011

Oh my...

What a week.

Oh my...

A real "blammo" treatment at the acupuncturists. A new formula from the herbalist. Neither of them have fully settled yet—that's normal, to be expected even, but still... Oh my.

Said goodbye to all of my this-year students; the last classes of the year. I'll see them around the school, many of them in various extracurriculars, and many of them will always be friends, but in all probability, they'll never be "officially" my students, in a class, again.

On the last day of school, I used the walker rather than the wheelchair. Mostly for symbolic purposes, frankly, but dang it, I wanted to see the last day of the year from my actual height. Looks completely different than from the chair... And discovered that walking is challenging for many reasons; walking does something to my trick bladder... and I can only walk so fast to the restroom anyway, and if I did walk faster, it would exacerbate what walking it was doing to my trick bladder, and make matters worse. The intrusion of an too-easily-excitable bladder into the events of the day was (fortunately) only on the emotional level, but my it was ... enthusiastic, shall we say? Far too many close calls. They never came too close, if you get my meaning, but... Oh my.

Had a fascinating conversation with some friends at lunch. One of them was talking about some workplace-management decisions, which had allegedly alleviated such-and-such-group's work load, but had actually caused his team, and others, to do a lot of extra work; and that the "net work lost" to the organization was probably higher in the current way of things, than if such-and-such-group had actually bitten the bullet and did the small amount of additional work.

And it dawned on me how people can think that things can exist completely without cost. That somehow things "just happen" or "someone will take care of it" or whatever. But we in the M.S. community... we know. Everything has a cost. Everything. This has nothing to do with value, moral, intellectual, economical, or otherwise. Whether the cost is worth paying, regardless of the reward, is immaterial. The fact is... everything costs. Getting ready to do something costs. Relocating one's self to do something costs. Simply being at the event costs. And it was so nice to be ignorant of that, to think that whatever would simply come into being via the very act of asking, and could be had in any quantity.

But it's not. And it can't be.

And the root cause of these managerial mis-calls is ignorance of the costs. It's one thing to hear that there's a known cost but that it is worth paying—you may not like it, but you can respect it, even support it—but it's another thing to know that the choice was made not only in ignorance of the cost, but the chooser is ignorant of his own ignorance, and (all too often) enthusiastically perpetuate it.

And proclaiming "there is no cost" actually devalues the effort being expended. And the time that is being quite literally being wasted, futilely squandered by trying to do too much at once, getting a very poor return on "moments of a life" expended to achieve the incompletely- or not-properly-achievable.

I know that I must have seen symptoms of this in many a workplace, but never has my understanding of the situation been so clear.

And I never would have seen it this clearly unless I wasn't on the M.S. roller coaster; every day I am challenged to face what it truly means to have a "limited budget" of energy, enthusiasm, joie de vivre even; and what the meaning of "cost" truly is.

What a gift of M.S.

Oh my...

Tuesday, May 24, 2011

Riding the tiger

Two interesting quotes, that speak to me as I travel the M.S. highway; one of them from a human, one from an animated character.First, the human: Rabbi Andrea Myers, in her blog on the Huffington Post said, "the phrase 'It Gets Better,' essential as it is, leaves me wanting more. It shouldn't just get better. Colds get better. Life should get beautiful -- and I hope, sometimes, hilarious."

I see that a life filled with "Comedy like this, you can't write" isn't a gift that only I receive. Or crave.

And the animated character: Major Motoko Kusanagi, as voiced in English by the amazing Mary Elizabeth McGlynn, opens the series Ghost in the Shell: Stand Alone Complex by saying "If you don't like the world... change yourself."

That is the challenge I'm facing. Not the neurological nonsense, that's an irritant, that's the carrier for the lessons I'm being taught (more often, that I'm resisting being taught); the hard part is changing myself. Occasionally, I think I catch glimpses of what the change needs to be "about." But what to change? How to change?

Robert Heinlein said, "The way to ride the tiger is to hold onto its ears and try not to fall off." But I wonder... am I trying to steer the tiger? (It probably doesn't like that at all.) Am I supposed to hang on, yes, but rough ride or not, should I be enjoying the scenery more, enjoying the ride more?

Or is it that I'm supposed to stop trying to ride the tiger at all... to let its ears go, and slip off into... what, exactly?

Now, there's the real mystery.

Saturday, May 21, 2011

Simple questions

The blog site Tiny Buddha offered an interesting post about control freaks/perfectionists.

I've gotta confess, I've got a perfectionist fixation. Perfectionism does have its occasional advantages, but not always. And certainly, the M.S. road shows you that "doing it Right" (capital-R right, whatever "it" may be and whatever "Right" may happen to mean) isn't always an option--or even a possibility--so why are you spending so much effort obsessing about it, anyway?

But I'm all-too-often called upon by the world (and by specific people in it) first to witness, then to transcend, my perfectionism, and I find two patterns.

First... an awful lot of the time, when I say "this is the better way to do (whatever)"... I'm right. Whatever "it" is, the way I want to do "it" actually is the simplest. Or the most efficient. Or will be the most beneficial, will have the least consequences. I'm just... right.

But here's what I don't see: Someone else is also right. A different way to do X is also simple. Efficient. Beneficial. And will have the fewest consequences; a different set of them, but still few. But it's a simplicity/efficiency/benevolence/not-all-that-bad set of consequences, that I just don't see.

It's not about "it's gotta be my way," classic control-freak "my way or the highway." It's not about "if I'm not the one responsible for success, it doesn't count." It's that once I see a method and an outcome, I attach to it. Boy, do I attach to it. And as a result, I not only don't see the alternatives, I don't even see the rest of the world. (Now, that's attachment.)

And the other way my perfectionism expresses itself is... "I see a solution, and because I can fix it," (or so I think) "simply seeing the problem and the solution makes it become my problem to fix." A director I used to work with used to get migraines because she'd go to other people's shows, and see problems, and have all sorts of pains because she could fix those problems, if only they'd let her.

She stopped having those migraines when she realized, "It's not my show. It doesn't matter whether it needs fixing or not... it's not my show."

And what, exactly does this have to do with the living-with-M.S. experience?

It suggests some very simple questions: Don't you have enough things to deal with? ... Not just the mechanics of the physical issues, but the "dealing with" of the physical issues--speaking of which, you're not dealing with them properly? (We've talked about "denial" before, haven't we?) And you're expending energy on attaching to solutions that aren't the only solutions, to problems that aren't even your problems? And yet, "because of the M.S." (as you say), you don't have the energy to do the dishes or write the music you keep saying you want to write?

When you're attached to "doing" (in the Buddhist sense), it's surprisingly tricky to shift gears from "doing" to "witnessing," and then to "transcending." Funny, given how many things that being in an M.S. state has stopped me from "doing," the "doing" of this is remarkably... persistent.

Funnier still, when the first thing that having M.S. teaches you is that permanence is an illusion... that you find yourself called upon to grapple with your own efforts to make something completely non-existent--an attachment--remain permanent.

Jokes like this, you just can't write (even if you do live them).

Wednesday, May 18, 2011

A new koan

A very interesting entry today on the Tiny Buddha blog, about attachment. It opens with the words of the Buddha:
You only lose what you cling to.
Some interesting implications/conundrums/or-is-it-that-I'm-just-missing-the-point semi-understandings follow that idea.

I'm definitely clinging to my departing-every-day, non-MS life. Oh, I'm definitely losing that. But the MS road is the human road: Things change; nothing is permanent. Things you loved, depart. We just can't hide from it as well as we used to be able to.

And now, to be completely honest, I'm clinging to... Avoidance. Denial.

How is clinging to that going to make it depart?

Perhaps I'd only see that truth... if I weren't in denial.

Now, there's a koan for you. It's certainly a koan for me.

Sunday, May 15, 2011

On paper

What a weekend.

Saturday, I went to a conference that I've attended before. It always recharged me, in the past. This time, it didn't. Many reasons (almost all of them completely external to me, for once), but "recharging" is what I hoped for, and sadness and grieving were what I received.

It was a two-day conference; I was so bummed out by the Saturday session that I bailed on the Sunday session (I foresaw a repeat of Saturday's non-recharging, I saw no reason to drive that distance, and sit in the really really hard-to-deal-with chairs, merely to get disappointed for several hours, again). Instead, I stayed home and spent the time writing some workhorse music for Pentecost (hymn arrangements for brass quartet), stuff that fit into the "for various reasons, that needs to be done first" category. I'm taking a break to type this, then I'm going to go back to saw away at another work, A Big Piece that, @$@#$ it, I promised myself quite literally years ago that I'd have done for this June's graduation, and not having it done is really pissing me off. Hardly a "muse-attracting" emotion, but there you are.

At some point, I'm going to need to connect with the gift of yesterday's disappointment. I'm so "out of energy," so "having no fun," so "finding no enjoyment in anything," I'm looking desperately for anything outside of me that I can hug and get some reassurance from.

And I'm not finding it. Anywhere.

In my head, I know that the lesson is to look within for joy, not without. Yeah, on paper, that's a great lesson.

But in my heart, I'm not connecting with that particular lesson. I just don't care enough.

The longer-every-day litany of body-used-to-function-better-but-doesn't-seem-to-want-to-anymore is most definitely NOT facilitating the finding of joy in anything.

If anything, it's reinforcing "I just don't care about anything anymore."

In my head, I think that I probably still do care. Yeah, on paper, I suppose I still care.

On paper. But my heart? My spirit? Those are seriously disconnected from really caring.

In my head, I know that this is an MS hurdle that needs to be overleaped.

Yup. Grapple with it, and overcome it. That's what needs to be done!

On paper, that's a great idea, isn't it.

Wednesday, May 11, 2011

Bring on the thing

Eight needles, instead of the usual four, to reconnect me with ... me. But things are better now. Much better now.

Music is rattling through my head, wanting to be written. What I despaired of so much yesterday was as I (mentally) suspected: right idea, wrong implementation. It's going to take a bit of effort to rewrite what's there, but at least the idea's there, and that's actually the hard part.

At least, that's always been the hard part; it's certainly the hard part to getting the whole thing started. Nowadays, though, the "hard part" includes having enough energy to sit behind the computer and peck at the score.

I'm not feeling exactly full of vim and vigor tonight, but maybe I'll do a little of the pedestrian pecking, that doesn't require so much flame-of-creativity energy. I know what needs to be adjusted, it'll just take a little bit of time to adjust it.

This "vague fatigue" thing is the worst part of the MS experience. I used to do an amazing amount of amazingly varied things, all of them with a fervent dedication to quality. Nowadays, I just come home, and lie down.

If I could choose only one thing to eradicate from my MS experience... it would be that soul sucking, creativity sucking, manifestation sucking, joy sucking, fatigue. I'd love to get my joie de vivre back. My enthusiasm. Any enthusiasm, for that matter.

"Thoughts become things," the Science of Mind church teaches. Well, there's my thought. A return to enthusiasm, to manifestation, to joy.

Bring on the thing.

Tuesday, May 10, 2011


A challenging day, at work. Kids were fine, there were many smiles and delightful laughs.

Adults... well, there were challenges, let's just say. Frayed tempers and exhaustion (theirs) didn't help matters; "it'll grow back" as my college band director used to say in such situations. But it was one of those conditions where "fault." where it existed--and I'm not sure a lot of it does--was distributed in a rather diffuse cloud. W. Edwards Deming would have called it a "system failure." But people who don't deal in a system or system-analysis world don't relate to the idea of "it's nobody's 'fault'--in those terms." (Note to skeptics: Yeah, sometimes booboos are "somebody's fault," but when the system itself has flaws, it's hardly surprising that the system doesn't produce things error-free; it's not the gears "fault" if they produce no power when their cogs are intact and correctly machined, but they are not engaged correctly.)

The point of which is, I arrived home demoralized and exhausted, I lay down on the bed for an hour or two, even by my "I'm never hungry any more" standards I didn't feel like eating anything, pretended to eat something, then sat down to work on a musical composition.

I'm not... that... happy with it, right now. Yeah, I know, you can't command the muse to serve you, sometimes you just gotta hack at things for a while until they start to flow, but...

My herbalist said, "Here, we never give up hope."

And looking at my composition, I'm pretty much ready to give up hope. And it. That's not good; neither of those are good.

I'm going to press "pause" for tonight. Not "eject." Intellectually, I know that some things need to be written, then thrown away, and then written again (the second time, the right way), that's sometimes the natural order of things. That's not a cause to give up, certainly... at least, I know that. Intellectually.

Intellectually, I know that I'm not supposed to give up hope. I can certainly pretend to be keeping hope alive--if there's anything I'm good at, it's denial.

But, to be honest with you, I think I have given up hope. Not just on this piece. Hope for a lot of things, many of which have to do with music, both composition and performance.

Let's hope (that word's inescapable, isn't it?) that my acupuncturing tomorrow will reconnect my soul to itself and to the universe. Again, to be honest with you, even though it has done so before... I don't have much hope for that, either.

Not a good day, for hope.

Saturday, May 7, 2011

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.

Friday, May 6, 2011

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.


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.

Wednesday, May 4, 2011


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.