Friday, October 30, 2009

How are you feeling?

An interesting question to ask someone with a malfunctioning nervous system.

The answer I gave someone this morning was, "Well, I 'feel' oddly, but I definitely 'feel' great!"

An interesting week. Various pots are boiling in my various spheres of travel (all political BS), but I'm not taking any heat from them. They're not my problem, and I'm definitely not inviting their turmoil into my life. In the upcoming week, I have to prep for a funeral I'm playing next Saturday for a colleague at the school who just died of some sort of brain cancer. Kids are singing "For good" from Wicked (for those who don't know the lyrics, they're all about the effect someone had on your life, the lyric ends with "Because I knew you, I have been changed... for good.") They want me to shake the plaster loose on the postlude, which I'm quite happy to oblige. It's a big Gothic stone church, they tell me it's got a great organ, and I'll do my best to blow out the windows. Thank you, Virgil Fox, for showing me how to let the light of the divine shine forth from the organ. And how to play real loud, that's fun too.

I need to write some music this weekend for a performance 12/20, finishing by next Wednesday at the latest so I can get it xeroxed in time for Thursday rehearsal. Need to write some OTHER music for a play at the high school. Need to build sound effects for a yet another, different play at the high school. Need to create a PowerPoint presentation for my ninth graders, to be shown in 10 days, about putting power back into PowerPoint, using what I hope will be humorous graphics appropriated from some of their favorite TV shows. And yet, I think I can do it, all of it. Man, what a difference from this summer. I even made dinner tonight, for the first time in way, way, WAY too long. Plan is to make cheese scones tomorrow, and just maybe, bring some with me to kyudo class. I miss my kyudo friends; the class is quite formal in the Japanese bushido tradition, which I used to enjoy but now may be a little rigorous for me. I'm a little self-conscious about my walking, I'm also a more than a little concerned about my walking, my balance is, shall we say, a moving target. (The first of those I should get over, especially among friends, but the second is a different issue.) In any case, it's certainly not kosher to use the bow as a cane, and I've had to do that more than I like in my own practice sessions. But it will be Celtic new year tomorrow (Sambhain), so it's a fitting day for a little bit of a celebration.

I think I've only got at most another week of "autumnal buzz" left, we're really moving into the Water season pretty quickly here in LA, which I've never found particularly supportive, energetically speaking. The cold I feel in my legs has been getting painfully cold, I've been lying with my feet under an electric blanket in bed. But, the spirit of the Water element is restoration of your deepest resources... who knows, this winter might be different, maybe for once the season will bring me some of that innermost restoration.

And wouldn't that be nice?

Tuesday, October 27, 2009


The air outside is absolutely lovely tonight.

Southern California somehow never has a real autumn. The crispness, the refreshing "zing" in the air... we just don't get it. I spent last weekend in Las Vegas at a magician's conference, and there was better, more vibrant air in the Nevada desert than there ever is in LA.

Tonight, it's different. There was a lot of easy wind this afternoon, and the air tonight is fresh and alive. There's a wonderful wistful gentleness to it; it's too cold to spend too long outside, but I keep going out just to breathe and feel the "roundness" in the air.

Interesting conversations at my doctor's today. We talked about my driving difficulties, that maybe the "warnings" as my feet miss the pedals are starting to come a little too frequently, it's time to start thinking about changing my transportation before there's no choice in the matter. I'll probably investigate a scooter for my commute to school, it's an easy and actually very pleasant tree-lined drive, but I ain't takin' a two-wheeled vehicle for love nor money on the LA freeways, so trips to the acupuncturist or anything out of the immediate vicinity may be a problem. I'm not at the "there's no longer any choice" point yet, but I definitely need to start thinking about it, rather than just thinking about thinking about it.

He also told me about another medical colleague of his, who often likes to order up nasty tests (for example, prostate biopsies) because he likes to be, in his words, "absolutely certain." Certainty is the one thing MS doesn't allow. We don't know how long we have to ... well, to do anything, really. Whatever "it" is, "it" can be completely over, the change seeping over you or slamming into you in a heartbeat. And what is there to do about it? Well, about MS, nothing. But about how to live with it? There's only one thing to do.


Wednesday, October 21, 2009

Ten to chi

Ten to chi: Heaven and earth. (One of the moments/moves in my style of kyudo. A moment of intentional alignment both within yourself and the world; and similarly, a moment of intentional connection.)

I'm writing to you from lovely Henderson, Nevada, gateway (if you so choose) to Las Vegas. I'm here for a magician's conference.

I've stayed in the same hotel every time for this event; walked these same streets in the context of conferences with like-minded people, for years.

This year, walking is very different. My legs don't work the same way they used to. This, I knew already; but walking on these streets, these familiar-yet-always-new streets, my leg disfunction is also fully familiar, but fully new. I'm experiencing it the same way I do every day, but somehow I'm getting the whole package anew, feeling everything for the first time.

Just looking at the conference lineup makes me want to cry--with joy. Usually, conference proceedings make you want to cry for the wrong reasons, often because you spent all that money and time to see the one, and only, decent presentation. In this conference, every presentation is the one and only presentation that you came to the conference to see.

I love this conference. I love these people. I love being here, thinking these thoughts, learning these things. In the midst of this, I'm feeling particularly--fully--aware of the MS and how it has affected my daily "going about."

Alignment, and connection. Ten to chi.

Saturday, October 17, 2009

Issha zetsumei

Three thoughts, today.

Acceptance. I've talked about this before. It occurred to me that true acceptance of something renders it... unnoticeable. "Drop things and they fall," we've accepted. It's part of the fabric of the way things are. Sure, we try not to drop things when we don't want them to fall, but the whole "falling" thing is just part of the world and we don't really think about it, we just work with it. When I'm working with my legs, and not noticing the act of working with them, that's acceptance. When I'm fighting with them and noticing how different they are now and all I'm experiencing is conflict... that's not acceptance. I visit acceptance, with my legs, but I don't live there yet.

Change. Driving has been getting a little odd and uncomfortable. My right foot, especially, is starting to have some significant problems finding the pedals, and (worse) staying on the pedals. I've reached for the brake and sort of hit the accelerator. Or I've reached for the clutch and sort of hit the brake. Fortunately, we're still at the "sort of hit things" stage. I leave huge distances between me and the car in front of me just in case this sort of thing happens at the wrong time, and fortunately it hasn't. Yet.

But that's what I'm worried about. It's a little better in our auto-transmission car, because the brake pedal is wider, and I certainly don't have to deal with a clutch. But I'm starting to get worried about maybe I can't drive any more--and I'm starting to really worry about taking a little too long to decide that I can't drive any more and maybe taking one too many drives. Now, I could get myself a scooter and that'd get me to work easily enough--the route I'd need to take, I've ridden my bicycle along, so it's perfectly safe as far as that goes, and grocery stores are reasonably close. But I'm not getting on a freeway on any kind of cycle for love nor money and especially not in LA, and not being able to take freeways anywhere pretty much imprisons me. It's an uncomfortable place, being simultaneously at "I really don't want to think about this" and "I'm a fool if I don't think about this."

Archery. I've been playing hooky from my kyudo for far too long. I've been really disinterested in walking and standing (see "acceptance," above) and although kyudo has only eight steps, the zeroth step that has to happen before anything else is "walk up to, and then stand at, the shooting line," and that's where I've been hung up. This morning I did some "air kyudo" (go through the motions without the physical bow and arrow) for the first time in a long time, and it was just wonderful. Wonderful. I practice a very "internal" style of archery, of course there is a form you're supposed to execute as best you can; but the important part is the spiritual part, and it's all about offering yourself and accepting what you are given, and doing both things with absolute freedom and absolutely without restriction. One of the great sayings of kyudo is "issha zetsumei," usually translated "one arrow, one life" but what it actually means is "one shot, then your last breath." Give of yourself totally to the shot, completely invest it with your whole self, the sort of total and complete commitment that you would give to the last thing you did on earth.

We ask the bow and arrow to show us how to live. The bow and the arrow always tell us the truth about ourselves.

Acceptance. Change. Issha zetsumei.

MS certainly didn't create those three, they're the human condition. But it certainly forces me to face them. All three of them. At once. Right now.

One of the gifts of MS.

Tuesday, October 13, 2009

Relief=Therapy (for once)

Y'know, it's really wonderful to have your primary care physician also be a full-on card-carrying neurologist. It's even better when you get to see him every week because he's also your acupuncturist.

One of my ongoing symptoms is sensations of cold, especially in the right leg, and it's worst from the knee down. Both my legs are running cold, but my right leg is worse (and it's also developing some motor problems, possibly because of the sensory/temperature problem).

Sitting in hot water--bathtub, or even better jacuzzi--feels wonderful. I do have to be careful not to overheat my core, but I can stay in to-the-waist hot water for hours.

So, my doctor says, go ahead and sit in hot water. What happens (if I can remember his explanation correctly) is that the warmth provides sensory stiumlation, which provides the nervous system input... which the nervous system uses to re-educate itself, to create new pathways that go around the cold/insensitivity problem.

I said, "So... symptom relief is actually therapy?"

He says, "In this case... yes."

Some times, the good guys win. I am SO hitting the tub tonight.

Monday, October 12, 2009


OK. So, this fall, I've been able to slam out an homage-to-Vaughan-Williams anthem in ultra-short order, and just finished today writing a Viennese-esque waltz for that's going to be (presuming the director likes it, which I think he will) part of the background music for the high school's winter play, and last week I slammed out a set design for the very same play, and Wednesday I'll probably be able to finish the set model. And I'm in darned good shape for my presentation that I'll be giving at a magician's conference next week. (Next week?!? oh my...)

Now, I know I get an energy boost in the fall, and the autumnal energy has been uncharacteristically good--if not uncharacteristically present, here in LA. I get more of an autumnal energy jag in Las Vegas, the middle of the Nevada desert, than here in LA. Nothing like New England, of course, but I'm here and it's there and that's the way it goes. Anyway, I am not at all disappointed or discommoded at suddenly being able to be creative, suddenly being able just to sit up at the computer and work with it, something I haven't been able to do for the entirety of the summer.

There's got to be a reason. MS seasonality? My own Fire energy not playing nicely with the Fire of the Fire season? (energetic Fire, not the brush fire that swept through the too-nearby hills)

Of course, now we're into the "my legs are wicked cold" season. The top half of me just loves the crisper weather, especially after the summer. My legs want me to hurry up and buy some new long underwear. Now. Really... now. Maybe I should go back to the Pasadena Plunge and their lovely jacuzzi.

Now that I have energy again... maybe I just will.

Oh, it is so nice to have good news to report, for a change.

Friday, October 9, 2009

Acceptance (see "elusive")

An interesting chat with my doctor this week. I related the story of the drum-set adventure I described in my last entry, he did quite a few neurological tests, he said he'd consult with a physical therapist he knew to see if whatever this is neurologically can be worked out/around via physical therapy.

But then we talked about "acceptance:" its virtue, and especially its virtue as an integrative force. And its polar opposite--denial--which can intrude itself very subtly into your consciousness and hang on with the most tenuous, adamantine threads, and even knowing that it's there and holding you back, and you are very quick to claim that you need it no longer, you just. Don't. Want. To really and truly let it go.

My introduction to acceptance and MS came with the cane. I told my qi gong practitioner that I was having problems walking, but I didn't want to get a cane because I "didn't want to give up, and somehow, having a cane meant giving up."

He said, "It's not about not giving up. It's about not falling over."

To return to last week's conversation with my doctor... he said that with MS, this call to acceptance comes daily. This particular call is hard for me because it involves music, the physical making of which I've done as long as I can remember. So I'm telling him that "I don't know whether 'it' is over," and he tells me to define "it," and I have to cop to admitting that it's "being a performer."

And then he says, "You're 'attached' to that." (That's not attachment in the sense of "affection," it's in the Buddhist sense.) And he's right. I am attached to it.

And then something else hits me, precisely these three words: Attachment is imprisonment.

It takes my brain a couple of seconds to recover from the "kaboom" that thought generates. And then I wonder, "Do I want to be imprisoned by the idea of being something?"

Whether I play music has nothing to do with "I am a performer."

So, acceptance, and integrative thoughts... I'm not sure I'm quite at the level of directly grappling with acceptance and the integration that it brings, but I think I'm a little less caught up in some of my dis-integrative thinking.

At least, today. This one... needs to cook a while.

But, forcing me to confront, and free myself from, my own self-imprisonment is a gift of MS.

Go figure.

Sunday, October 4, 2009

Success and failure

Well, since my last entry was all about what was going to happen, I thought it only fair to tell you what actually happened.

Evening didn't start well... Quartet had a rehearsal slot an hour before the show, and just as I had feared, I it took way too much effort just keeping my right foot in contact with the bass-drum pedal. Much less actually playing worthwhile notes with it. Another compounding irritant is that my leg reacts very badly to pressure being applied to the ball of the foot. It doesn't exactly cause "pain" as such, but it's really, really, uncomfortable. Pressure on the heel is OK, but the ball of the foot is not. Of course, that's the part of my foot that's most involved when I need to play the piano (which is especially uncomfortable, because I push down on the pedal and the pedal pushes back), when I'm driving and especially when I'm stuck in traffic, and when I play the organ (I tend to play theater-organ style, with right foot on the volume pedal a lot of the time). Anyway, my foot wouldn't stay under control and attempting to use my foot on the bass-drum pedal was causing me horrible amounts of discomfort, and after the rehearsal I went into my office and had all I could do to not break down in tears.

Well, anyway, whatever annoyances my foot/leg went through in rehearsal also made it harder than usual to walk (for my convenience). Fast forward to the magic trick I was asked to do--which I'm glad to report went very well, even though walking around through the audience was made disturbingly difficult by my leg's displeasure, and everything happened that was supposed to happen and everyone seemed to like it. (And many people, including my students, told me afterwards how much they liked it, which was VERY nice to hear.)

Fast forward to the music. Very interesting experience, of course; some of it was some of the best jazz-combo set playing I've ever done, even though I spent at least half the time with three limbs on autopilot and most of my attention focused on the uncooperative right foot. If I hadn't been fighting my own limbs, I would have really enjoyed it. No, that's not correct... even with the malfunctioning foot, I enjoyed it. Even though it was also more than a little, well, horrible.

Now, obviously, if I were a set player, I know exactly how I'd have to modify the drum pedal to eliminate the "wandering foot" syndrome, and if it weren't for the massive discomfort of pressure on the ball of my foot, I could probably practice/physical therapy my way to functionality. But I'm not a set player. And the same thing that made my right foot "wander" while I was playing the set makes it "wander" when I'm playing the organ pedals, and I definitely can't apply the same engineering solution to that problem. I will confess, I'm on the edge of wondering whether that was the last time I'll ever play drum set, simply because it was a rather horrible experience, trying to make music with a barely-controllable foot.

I definitely "don't want The Disease to win," so I'm definitely not willing to say "It's over." Whatever "it" may be... playing drumset, in this case, I guess. But somehow, I'm not motivated to rebel against it and scream "It's definitely NOT!!! over!" because... well, to be truthful, I don't know why.

I may need to let this one cook a bit. But sometimes "make no decision" is the right decision. We'll see how that one works, for now.

Saturday, October 3, 2009

Leap of faith

Well, this evening they're having a Big Talent Show at the high school where I teach, and somehow I got roped into performing.

They need the faculty jazz band (they call it "band," but it's "quartet") to play while the judges deliberate on the winner of the show, and they want me to do some magic (prestidigitation magic, not metaphoric magic) while they're setting up the band, both to cover the band setup and so that the faculty have some sort of solo-performer representation.

Well, I'm nervous. When I last rehearsed with the jazzers, I was having issues with my foot slipping off the bass-drum pedal--and let's be honest, I haven't played set more than once or twice since The Diagnosis, and let me tell you: out-of-practice and neurological damage is a bad combination. Oh, I have no doubt that I'll make it through just fine, but I would rather be spending my energy on performing than fighting the drum pedal.

And oh yeah. Magic. Now, I like magic, and the tricks I know, I can do. But I don't perform as much as I'd like (I like performing, but I'm not extroverted enough to just walk up to people and do magic for them), and even a tiny bit out-of-practice (even minus the confounding neurological damage) is not a feeling I like. At all.

Standing up in front of a room full of mixed-gender 15-year-olds and talking about online adult content, and how you really don't want to formulate your ideas about sex from watching ScrewTube home movies, doesn't bother me a bit. Doing card tricks, even the ones that I do--which are very, very carefully selected to have as close to zero failure modes as possible--make me nervous. And oh yeah, I get to walk onto the stage and into the audience without my cane, because I need both hands for the cards. Which means I'm doing it with my shoes off--shoes off, I get more data from my feet and the floor and I don't need the cane (as much), it's how I do all my classes.

But y'know, just talking about it right now... I'm going to stand up in front of four hundred people with my shoes off. You gotta admit, that's pretty funny. Too funny, really, to let myself get that worked up over.

I'll go rehearse the trick a few times, write some handbell music, take it easy. Enjoy what passes for "autumn air" here in LA. Have my favorite pre-performance meal, Thai "tom ka gai" soup. Rehearse with the quartet, then kick back for something like three hours before I go on.

And if I'm nervous and wigging out even a little before I go on, I'm going to look at my stocking feet... and laugh.