Tuesday, February 23, 2010


Back to the "block and blammo" treatment plan. Fortunately, only mildly "blammo;" got a powerful point, but a gentle effect.

Had a long conversation with my doctor about my relationship to the malfunction in my right leg and its effect on my organ playing. I have a couple of alternatives to try, one of which is simply "go ahead and suck, but keep practicing" (or, as the kyudo folks would say, "shoot again"), before I cross the Rubicon and declare my organ playing days over.

Complicating this is... when I think about "my organ playing days are over," I honestly don't know how I feel about that. The only thing that is clear to me is that I really, really, want to still be able to play the organ at my school's graduation ceremonies; in a few years I will have performed at more than fifty percent of the commencements that the school has held, and dammit, I want to at least make it at least that long before I call it quits.

But we talked a lot about my non-confrontation of this problem. Because I don't really feel like I am positively, intentionally engaging it: either engaging it, and deciding that no, I am not giving up, or engaging it, and deciding that yes, it's OK to move on to another phase of my life, it's OK to say goodbye to the organ. I'm just kind of... looking at it. Like dog poop you discovered on the kitchen floor. You don't clean it up, you don't shout and curse, you just ... look at it.

And that's pretty much it. Dog poop. Just sitting there. And I just look at it.

Didn't get an answer about whether what I'm doing is right --right for me to be doing, specifically, not just nebulously "doing the 'right' thing." Didn't get an answer about what I'm "supposed" to do. My attachment to "doing" (in the Zen sense) is a problem I need to, if you'll pardon the expression, do something about; but then again, "doing" something about it is just shifting, not solving, the problem.

My doctor said that his own spiritual teacher is famous for saying, as an answer to any question about spiritual difficulties, "Do the Work." I've heard this before: "Shoot again." Don't obsess over questions. Don't fuss and fume. Don't "do" anything. Shoot again. Do the Work.

But I'll be honest with you, dear reader: I say that I want to do the work, but I stop myself from doing the Work. From shooting. Sometimes, yes, clearly it's something MS-related that keeps me in the chair or in the bed. And when that's the case, recovery is important. But there's something else, some sort of energetic/emotional/psychic anchor that I'm attached to, that let's me oh-so-easily just... not... go do the Work right now. Or today. Or, as it always seems to work out... ever.

And "doing" isn't going to get it done, or lead me to the answer to the question. Separation from the problem will reveal its solution, yes... But not denial, not avoidance, not unwillingness to fully participate in experiencing the experience. Not just staring at it.

Long ago, I realized that kyudo would show me the path through the MS wilderness. Kyudo is about being open. Offering fully to receive fully. Listening. Staying out of the way of the shooting, yet participating completely in the experience of the experience of the shooting. To fully live within the MS experience requires all of those practices.

Obsessing over finding the answer is not the answer. Do the Work. Shoot again.

Well... I guess that was the answer. Not the comfortable, clear, now-that-you-have-it-everything-is-just-ducky answer I was looking for. But, that's MS (and life) for you.

So, I've told you that I need to Do the Work. I've admitted to myself, and to you, that it needs doing.

Wonder if I'll be able to bring myself to do it?

Or to pay full attention to the experience of pushing back at it?

Or will I just stare at it?

Honestly, I don't know.

Saturday, February 20, 2010

Rocks in the rapids

The weather this morning couldn't have been more perfectly metaphorical: last night, clouds and rain; this morning, sun and birdsong.

Many glorious things were accomplished today. Cleared many things off the compositional "to do" list. To wit:

  1. The choral director wanted some adjustments to the choir/orchestra piece I wrote for the high-school's musicians, and the solution I found made me happy and (I hope) will please him as well. I won't call it a "compromise" because it was just plain too good--it created extra musical strength and (I hope) will give him what he requested.
  2. Adapted a handbell part (within a brass and handbell introit for Easter), which in its original form, requires far more players than we have. Now it fits our humble, yet enthusiastic and dedicated, group.
  3. Finished two out of the three hymn arrangements for Easter Sunday. I probably could have gotten through all three, but one of them is a little idiosyncratic, every church performs it a little differently, and I need to arrange the arrangement (as it were) to fit our congregation.
  4. Laid out and printed the organ part for my composition that's premiering next Sunday. I tried to make it playable by my failing feet--fortunately, it's a significantly better instrument than the one I had to work with Ash Wednesday, so there's more hope. Even though the organ is vastly superior, the action on the pedal board is a little low, the dimensions are a little odd, and both of those cause me -- too often-- to struggle with the instrument. Tomorrow, after church, I'll give it a go and see how I do with the (mostly) better instrument.
And, I made a quiche, cole slaw, and an apple/yogurt salad. and did all the dishes. And did a load of laundry. Sunshine and birdsong, all around. Or so it should have been....

Those were the rapids... but there were also the rocks... ah, the rocks.

I've been feeling a vague panic nipping at me for a while now, it has been catalyzed by a fear that "I'm behind schedule," and that's one of the reasons I cranked at music so hard today; I hoped that I could get on or ahead of schedule, and maybe calm whatever it is that's subconsciously nattering at me.

And then, on a trip to the store to grab some supplies for the cooking adventure, I found that I wasn't feeling panic, but terror. Real, pit-of-the-stomach, terror. And I mean, come on, this is Trader Joe's that I'm in, there's nothing even vaguely terrifying about it. The store does not frighten me. And yet... I feel terror. Thank heavens, it went away once I went home.

But what's up with that? It's definitely part of the MS package, I never felt anything like that before The Diagnosis; it doesn't seem to correlate with any of my symptoms. But, even so... terror? In the midst of such an otherwise superlative day? Come and gone, both in a flash?

Hmm.... huh. Well...

The fun never stops, does it?

Friday, February 19, 2010

Laughable disaster

Wednesday was Ash Wednesday. I was asked to play a service, a friend of mine needed to find a sub quickly and I of course said yes.

My right leg control was simply awful. Driving there was more challenging than I liked, and when I played the service, my right foot would mash three (or more) notes at once. Not good. Some of the worst organ-pedal playing I've ever done. In my life.

So bad that it might have made me decide that my organ playing days were over.

Except... the organ was so horrible. In so many ways. A Hammond, an old Hammond at that; an awful old Hammond. Instead of the American standard concave radiating pedalboard, something that makes pedal playing vastly simpler for me, the Hammond's pedal board was flat. And the action was unbelievably low. And squishy. And the pedals stuck. A lot. All the time. Even when you only pressed down the one pedal you actually wanted.

If it hadn't been a church service, and one to start off the penitential season at that, I would have busted a gut laughing at the instrument. And at me, trying to coax music out of this organ-shaped turnip.

So... it was pretty darned funny. It was pretty darned horrible.

Which, I suppose, says it all about MS. In far too many ways.

Tuesday, February 16, 2010

(Over)sensitivity; changes

The usual Tuesday acupuncture treatment; fortunately, I arrive not completely depleted, just with really low Fire and a little crumpled. A gentle treatment, to lighten the load and, for lack of a simpler term, a de-crumpling.

We talked about the extremes of sensitivity that MS can bring. One of the things that has definitely changed with MS is that I startle more easily, and much more deeply. He had some explanation for his theory on what parts of the brain might be involved in that phenomenon, but he said that another of his MS patients has the same "easy startle" issue, but in both of us he notices that we perceive things differently: he says we see more subtly.

Oversensitivity is making itself overfelt in other ways, too. Some of the problems I'm having driving is that I'm getting distracting, confusing data from my feet; and the bad data is, to borrow an auditory metaphor, so loud that it's drowning out the good data.

But, I'm basically feeling pretty good. I'm cooking again, something I haven't been doing for a long time (and something I've been doing for the nearly 24 years of my married life) and something I enjoy. I'm not really going all out, right now, I don't like standing that much or that long... but at least I'm doing it.

Also today, I discovered something within the I Ching that really resonated with me. One of my friends, whose opinions in such things I value extremely highly, said that in his reading of the I Ching, he had come to realize that the it was not divinatory in that it tells you what was "going to change," or what you "should change"; rather, it's about the process of change. Your life is so complex that you can't just up and change it, although major events, something like, oh, I dunno, maybe... MS... will change it, as would a death in the family or a move to Antarctica; instead, if you want to change your life, you make a small change, and that small change causes a small change that causes a change ... and eventually, your life changes. More of a series of dominoes than a thunderbolt.

Although, having been hit by a neurological thunderbolt, I can assure you that it does change your life... but now, you're left needing to make your own changes in your life, and you need to work the process. Slowly. Diligently. One piece at a time. (Much as I'd like to just have it fixed and get it over with... alas, it doesn't work that way. Oh well.)

And so, the hexagram that caught my eye:

The Wanderer:
Success through smallness.
Perseverance brings good fortune
To the wanderer.

Courtesy http://www.cfcl.com/ching/. Try it for yourself! What's most interesting with things such as this is not what it has to say, but what you hear when it speaks.

Saturday, February 13, 2010

Rubicon (a foretaste)

Thursday, I was trying to practice some piece on the piano.

I couldn't operate the damper pedal.

Pedal up, pedal down... that was no problem.

Foot stay on pedal; foot place itself upon the pedal when I want to use the pedal, in a place that'll actually operate said pedal properly: those were problems. Big problems. As in "couldn't make it happen."

As close to I get to "pain" from the MS is discomfort on my right foot when things are pushing back, like gas pedals, brake pedals, and... of course, and worst of all... damper pedals.

Now, I don't think it quite means "my piano-playing days are over." I can probably engineer around this problem by gaff-taping a slipper to the pedal and slipping my foot into it, thus insuring that my foot won't wander. At least, I think that'll work... it's the same problem I had with a bass drum pedal a few months ago, the Wandering Foot problem. And, since the piece I was practicing was my own composition, I'm going to rewrite it (it's for organ and piano) and move myself to the organ and the organist to the piano, which he won't mind 'cause he's been playing it on the piano to rehearse the singers, and I'm going to be giving him his reduction as his piano part, so no extra work for him, no uncomfortable "I don't know if I can play this instrument any more" moments for me. Everybody wins. Sort of. (Great. "Sort of." Still, and again, and more... "sort of.")

But it was weird, and uncomfortable, to have to be confronted with this. I must admit, I don't think I've truly dealt with it yet. Not really.

Being forced to confront your own mortality, the temporary nature and evanescence of your physical being, constantly, one piece at a time: this is one of the gifts of MS that I'm having the most trouble accepting.

Walking is becoming more difficult. I'm changing my description of my experience from "legs made of lead" to "walking under higher than earth-normal gravity." Fortunately, if I fall (which, fortunately I don't--yet), I'll still fall at 1 g, but my legs feel like they're pushing through 3 or 4 g at least.

But, I'm getting music written. I finished a big piece for the high school, for both the chorus and orchestra to perform together. The idiosyncratic constitution of our orchestra and chorus does not facilitate finding off-the-shelf music that they can both play and sound good while playing... but since I know how to work with (and around) them, I can make them sound bigger and better than they are. And it's a nice tie in with the drama department, it's the very music I wrote (and realized electronically) as off-stage source music for the winter play. And it's got a nice big grand-opera-grade final moment, with the sopranos belting out a high A. It's going to be wonderful.

At least, that's the plan.

So, I can't walk very well, but I'm going to make a lot of children and their parents happy.

On balance... I've gotta admit, that's still pretty good.

I've been hearing things about Le New MS Drug Du Jour hitting the streets soon, promises to improve walking. We'll see.

But then again, that pretty much covers it, not just for MS, but for the human condition itself: "we'll see."

Funny how little difference there is. Living with or without MS... one is more usual, one is less usual, but which, really, is truly and completely "normal"?

Tuesday, February 9, 2010


Another rainy day in Sou Cal. Being a freeway-bound culture, with drivers apparently genetically wired to go 70+ MPH at the slightest opportunity, rain brings everything to an immediate, and usually crashing, halt. It rains so infrequently that oil and dust pretty much cake the roads, and the first couple of days of rain, before the roads wash clean, the roads are the slipperiest.

Put another way... within the first couple of days, everyone who's too stupid not to drive safely has gotten into an accident. By the third day, Darwin has cleared the roads, and things are calmer.

Rather a shock, at my treatment today. I was doing... well, it seemed. I was energized, and in good shape. A couple of needles specifically for MS symptoms, some slight mid-course corrections, a little tonification, and out the door. Haven't had a treatment like that in months. I do need some body work and chiropractic, but still... doing well?

Good thing, too, because I've got music to write, music to practice (for a concert at the end of this month), lights to design, costumes to design, a puppet to build (with some student help, fortunately). Let's not even talk about the stuff I want to do. That's just the "got to do" list.

I guess I'm back on the "overachiever" track. For now, at least. Heck, merely "achieving," and achieving anything beyond "I made it to work today," is a nice change.

Friday, February 5, 2010


Got nothing done in my two days off this week: nothing, that is, that I had planned/hoped to do. Creatively, that is. What I did was stay in bed until 10AM (instead of my usual 7AM), go out to lunch with my wife on one of those days, and had a badly needed chiropracting. It was wonderful. Every minute of it.

Tonight I did dishes and made dinner and did a load of laundry and baked a quiche, all things that I used to do without even thinking, but which over the last month or two have somehow become completely unachievable. And took a call from a friend, and provided a caring ear for the airing of a few troubles.

So I got "nothing" done.


I used to live in a very happy world of regular--often daily--achievement. Over-achievement, some would call it. But for me, it was normal.

Now, normal is different. It's not as sizable... but it's just as normal.

Why is "normal" so hard for me to accept? Being that "normal" is really, pretty much all we have. It is certainly what is, for lack of a better word... normal. And yet, for me, "normal" had always been a failing, somehow. But now, I'm grateful when I have it.

And yet, "normal" is all I've ever had.

Another gift of MS...

Wednesday, February 3, 2010

Ice and Fire

Cold and, surprisingly enough, wet, here in southern California. The humidity is nice because it keeps the heater from drying me out (I always get what Chinese doctors would call "Wind Heat" attacks from the hot and dry of the heater), but it makes for thick, damp cold. Which is just wreaking havok on my legs, especially my right leg. It's not cold to the touch, but when it's not under three blankets, it feels like it is radiating enough cold to be solely responsible for the chill in the environment.

Some good--mild, but good--creativity on the music front. Just finished a big processional for Palm Sunday (choir, soloists, organ, handbells), have to do some orchestrating of another piece over the next few school-free semester-break days. I don't know if I'll be able to finish what I'd like to finish, but I can at least get a good start on it.

And some very, very good news. I was at the Magic Castle the other night (I'm part of the committee that auditions applicants for magician membership), and something struck a spark. There's a big difference between "doing a trick" and "creating magic"; the first is mechanical, the second is theatrical, and when it's really good, it can actually become spiritual. I saw a lot of tricks during the night of auditions, but I didn't see a lot of magic--except from a couple of people who were just on the edge of doing something truly wonderful. And they would have, if someone would have only showed them how, as Emeril likes to say, to take it up a notch.

That was the spark. That's what I want to do. I want to show people who want to be magicians how to do magic, rather than tricks. I don't want to teach people tricks. I want to teach them how to convert the tricks they already know into something truly magical.

I haven't simply wanted to do something for way too long. I forgot how good it felt.

Now, I'm not there yet. I have some work to do, I'm going to talk to some of my professional-magician friends, I've got some "flight time" to do, performing myself; but I think I may be on to something. I'm definitely still going to stick with writing music, of course, but this... this may be what I've been looking for. We'll see how it plays out.

I already do this with my 9th-grade students; I try to show them how to let the magic within themselves shine out through their work. It's what I do when I write music--I want the performers to use what I write to let their light shine. It's what I did when I was a conductor. It's all the same thing, interestingly enough.

It's going to be an interesting ride. We'll see whether I have the energy to take it. I think I do. I hope I do.

We'll see what happens.