Sunday, November 29, 2009


This weekend, I got the same message from two completely disparate sources. They couldn't have less to do with each other, and yet, they said the same thing.

My kyudo shishou, on his Facebook page, said "Our state of mind must first be giving. We must first offer what we want, in order to receive. And then we must be open to receive."

And also this weekend, I saw on DVD, the Galactica movie The Plan. Which, if you're a BSG fan, I strongly recommend. (Quick caution: The version that airs will be significantly more family friendly, some young ones might not be ready for a few of the scenes on the DVD version.) One of the most touching themes of this film is the power of being open to things that arise within, and come from no one knows where, that will totally transform you, that will enable you to transcend yourself and become something greater than you ever imagined you could be. But part and parcel of that whole process is giving of yourself--which can catalyze transcending yourself merely through the act of giving.

In trying to be honest with myself about what I can't do, I am trying to be open and honest about what I can do. And how what I actually can do (which can vary considerably from day to day) may not be precisely what I used to be able to do... but that doesn't necessarily make it "worse." What I actually "currently can do" has nothing to do with my ego-image of "the stuff I can do." It's an interesting struggle, to detach from the ego-inflating concepts regarding those "things I can do" and instead to be fully participating in, and enjoy, the things I actually can do.

Which, when I can do them, can still be pretty cool, all things considered.

Thursday, November 26, 2009


Kai: meeting. One of the hassetsu (eight steps) of kyudo. The bow is fully drawn; kai is, according to one author, the "spiritual draw" of the bow, the moment at which we "pass the baton to God" and prepare for the mystical moment of the release, when the arrow leaves the bow and flies towards the target.

Yesterday, I got a wonderfully elegant and eloquent note from a friend who also has MS, and he described how he realized that he had realized that there was no cure, no valid treatment, no known cause, and an unpredictable course, and after a very long struggle with a lot of negative emotions he came to the realization that the only thing to do was to live fully. Now. Today. And it strengthened his resolve to live to the fullest and work on himself, without delay. Now. Today.

He had come to his moment of kai. And, then, experienced the mystery that is the release.

And now, every day, he "shoots again." (A very beautiful bit of kyudo practice and philosophy, I'm sure I've mentioned this before... Hit the target? OK. Shoot again. Missed the target? OK. Shoot again.)

In my own kyudo practice, at one point I realized that I was afraid of the bow and the arrow. I was always holding it away from myself, rather than bringing myself to it and meeting it. (Meeting? Hm...) Now I'm less afraid of it, I'm willing to actually bring the arrow up to my face where it's supposed to rest before it's released... but I have to be truthful, I think I'm still giving that moment lip service. I think I'm still not willing to bring myself fully to the bow, to give myself fully to the bow: to truly, fully, and completely, meet it.

Thus it is with me and MS. I have yet to really, truthfully come to kai. To bring myself to the arrow, to the bow, and fully give myself to the truth.

The bow and the arrow always tell you the truth about yourself.

I am so missing the target right now... Well then, OK. Shoot again.

Tuesday, November 24, 2009

Reassembled (for now)

Thank goodness for today's acupuncture. A double block... no wonder I didn't feel like doing anything. My head's still spinning a bit from a couple of the points, but given the choice between those needles and concomitant spins and the blocks, I'll take the needles.

Two prescriptions: Do a particular meditation daily, and do more kyudo. The first is to help me get out of the spiritual rut I'm in (which will help me get out of the energetic rut), and the second to get me to do some serious breathing (and oh yeah, the other things kyudo does for me, which will contribute to the getting out of the spiritual/energetic rut). I've really been craving air and light; although the bed has been very attractive over the last week or two, and I've spent much of my time there, I've really "caught a spark" those few moments I went outside. Fortunately, LA is warming up this week, so it'll be easier to open the house's windows, and to get myself outside.

One of the key points of the meditation he wants me to do is that it's offered for the benefit of all. He says (of his own process) that he sometimes gets into a state where he doesn't want to do something for himself, but when he's doing it for the benefit of all, he can find the energy. Certainly, when I need to take care of my wife when she's got a migraine, it doesn't matter how crappy I feel, I can summon whatever is required to take care of her. Even when I'm completely sucked dry of energy at school, if one of the students needs attention, I can provide it. Certainly, a central tenet of the type of kyudo I do is that what you are doing is an offering of yourself.

And this is also a central tenet in my school of kyudo: You cannot receive until you give.

I've been wanting a change. I'm tired of being empty. Looks to me like the first steps on the pathway out of emptiness are in front of me.

Let's see if I can muster the willingness to start walking it.

Saturday, November 21, 2009

Better (-ish) (sort of)

Not quite into the light yet, but out of the depths of darkness.

Qi gong today... my practitioner blames my current downturn on the season, which is very much within my own history, many years pre-Diagnosis. Winter... squashes me. Autumn is always wonderful. Winter is just plain bad, energetically (for me, at least). Thank goodness I don't have the usual spate of Christmas concerts this year, they'd just plain do me in.

Something I noticed today at the treatment, which I have noticed before but wasn't quite at the top of my consciousness... Electrical heating, radiant heating, I don't feel in my legs very well at all. I put a heating pad on my legs at night, it vaguely helps; at qi gong, he puts a heat lamp over my legs, I barely feel it.

But the warmth of his hands, I feel. Same at night, the warmth of my wife's hands or legs, I feel. The heating pad, not so much.

Don't know what it means, but it's interesting.

Feeling good enough to work on music for the winter play... I'm feeling a little (a lot) behind on this whole show, I think I can still pull it out, but I'm not really in touch with the production or its schedule, and the combination of "lost," "under-informed," and "behind my own schedule" is not at all adding to my general comfort level.

But at least I'm getting something done tonight. In the words of the farmer at the end of Babe, "That'll do." And right now, that's good enough. But then again, isn't "good enough" good enough, by definition?

I don't know if I'll have the wherewithal to deal with going back to work Monday... we'll see what Sunday offers. The week before Thanksgiving is never one where people do a lot of quality concentration, so it won't be such a bad time to be absent, but I do miss my students, and I think they'd be good for me to be around, but the hurly-burly of the school day... I may not be ready for that yet. But, I got a couple of days. We'll see what happens.

If there's one thing constant with MS... it's its variability.

Thursday, November 19, 2009

Just not interested

A very uncomfortable day, so far.

The first thing I want to make abundantly, perfectly, and completely clear, is that I have absolutely zero interest in dying. None. Zilch. Totally none. Absolutely none.

What is making this day so uncomfortable, so far, is that "zero" is pretty much the amount of interest that I currently have in living.

If my wife hadn't been so insistent upon it, I probably wouldn't have eaten anything at all today. I'm just not interested.

I'm (vaguely, sort of) handling some obligations... Writing source music for a production at the high school, and experiencing (almost said "enjoying," but that's a little more enthusiasm than I can actually muster) at least some success at that. Probably will make it to a handbell rehearsal tonight, since our first performance (a date I picked) is Sunday and one of our number is absent and I'll have to keep the rehearsal running and play her part, so that everyone doesn't get totally discombobulated by the missing player.

I really wish I could have taken a full "get out of life free" week, but I just didn't see the way to do it given what all was going on. Sure, if I had been hit by a bus (the paradigm unforseen disaster is always "hit by a bus," somehow) they'd get along fine without me, but I'm just not yet willing to play the "hit by a bus" card. Although I may play the "I need to leave rehearsal early" card tonight, we'll see how things go.

Music usually makes me feel at least a little better, it always has in the past. Even with what I found out after the fact was a mild case of measles and nearly-full-on-hallucinations, rehearsing made me feel better. We'll see where it takes me tonight.

Hope springs eternal. If I only had some... But, somehow... I'm just not interested.

Qi gong on Saturday, we'll see where that takes me.

But at the moment... I'm actually almost enjoying a really, really good cup of oolong, some sort of tea that came with the moon cakes my wife got in the Chinese part of town. Easily the best feeling I've had all day.

And y'know, given the way I've been feeling today... I'll take what enjoyment I can get.

Wednesday, November 18, 2009


Halfway through the first fully MS-related week I've taken off work. It's not working the miracles of recuperation I had hoped for. Frankly, I'm not exactly sure it's doing me any good at all, although I'm quite positive it's doing me more good than the week of work would have done me.

I had to spend a lot of today taking care of a migrainey wife; that took far more energy than I had wanted to spend on... well, pretty much anything, actually. I certainly don't begrudge her the effort I had to spend--God knows, if I needed help, I'd want my spouse to take care of me, and I'd do it again in a heartbeat if she had a relapse and needed me again. But it cost a lot.

I'm way more sensitive than I like. Little noises, little anythings, make me jump. It's pretty uncomfortable. I just took another dose of beta blocker, but those don't seem to be intercepting whatever it is that I'm reacting to.

And oh yeah, the sadness. There's something about how the MS is getting in the way of things I used to do without even thinking, and somehow, I kinda feel like it has been forcing me to face my own death, one tiny piece at a time. I've been dealing with that for a while, but there's a difference between facing the idea of your own death and the actuality of your own death, and I think all of my "good attitude" about the disease has been because I've only been facing it in the abstract. Somehow, taking the step of saying "I need to take this time off because of MS" is forcing me to deal with it in concrete terms, and I feel like I'm teetering on the threshold of a lot of sadness.

Which, in a strange way, I take as a good sign. It's probably a place I have needed to go for a while, but haven't been ready to face. And frankly, I don't know if I am (or if anyone ever really is) "ready" to face it.

The only reason I wish I could face it... is because when I get out of it what I'm supposed to get out of it, maybe it'll go away.

Hope springs eternal.

Saturday, November 14, 2009

Acceptance (see "running out of options to avoid it")

A good day, in many ways. Rough, at times. But good. At least, to start.

My wife woke up with a migraine this morning. I had more than enough energy to take care of her, to help her through the nasty part of the morning until we could get her to someone who does "medical massage" (shiatsu and the like) and best of all, the newly opened place that's less than a half-mile away took incredibly good care of her, she emerged from her session smiling and shining. I'm going there next week, they seem like wonderful people. And they have an adorable little lap dog, who will sit with you for as long as (or longer than) you want to rub her. I took her to lunch afterwards--she was feeling good enough to ask to be taken out--and we went to a vegetarian place whose owner and workers have become good friends over the years, where we got the news that they're closing for good at the end of this month. Sad for us, but we're happy for them; it's time, it really is, and if you knew the story (and it's quite a story) you'd agree.

And now, the "rough" sets in. I'm starting to notice that I'm only really good until like 1:00 or so, at least when I'm out in the world. We were out a little longer than I wanted to be, I got us home with reasonable aplomb and without incident, but I was feeling pretty crappy by the time we got home. Daily, I prove the Spoon Theory, but somehow I'm not smart enough yet to remember how to work with it rather than to be a victim of it.

I'm taking next week off of work; my MD and I decided that it was wise to take a bit of a break right now, in the hopes of fending off an otherwise impending crash-and-burn, which I kinda feel like is lurking a little too close for comfort. I'm going to maybe do some kyudo, definitely do some music writing (yeah, it's for school, but it's something that I like and it doesn't cause the same stress that other school stuff does) and I am definitely not reading my school e-mail, which I've done on all of my other "vacations," which was responsible for a concomitant lack of rest. This is a big problem, for me: pretending to rest, rather than truly resting. Why I find it so hard to stop my mental fidgeting and fully give myself over to resting when I'm allegedly "resting," I don't know, but just that small change would probably make a huge difference.

Next week will be the first big chunk of work I've taken off for MS proactively. I've lost a day or two here and there, a week once, last year; but those were all related to massive acupuncture blocks rather than out-and-out let's-be-honest-it's-about-MS-this-time incidents. This time, it's different. This time, it is about MS.

And, I think... that makes me sad.


I think that "having MS" just got ... more real.



Wednesday, November 11, 2009

Sensitivity (a little too much)

In many ways, things are going well at the moment. My students are happy. The PowerPoint presentation on "putting power and the point back into PowerPoint" went over very well, especially the South Park pictures I put in for their enjoyment. I just finished a new piece, something for Advent IV, for mezzo-soprano, handbells, and organ. More pieces, this time for theater, are in the works, and are allowing themselves to be written reasonably well (when I'm able to work on them). For the first time in several months, I made dinner from scratch, a roasted carrot/ginger soup (roasted the ginger as well as the carrot as an experiment, and that worked quite nicely).

But I'm taking next week off from work, at my doctor's orders. The first time I've had to take a longer-than-one-day MS break.

I'm not having an attack (whatever that is), but I am very dangerously over-sensitive, to pretty much any sensory input--especially abrupt noises. The only Western med I use is Inderal, a beta blocker, simply as a buffer between my under-insulated nervous system and the world. And it isn't doing its thing any more, and I'm at the maximum sensible dosage. But I get jarred/startled/derailed by the smallest things: Cat knocks over a pile of laundry, and the noise the pile of clothing makes when it hits the floor jars me. And that's not good. I'm also nastily fatigued, and that just makes things worse.

I'm going to try to get qi gong'ed next week, that always does me good. Doc says some rest--some true rest, not the "pretend" rest I usually take the few occasions that I take time off--may help me reassemble myself. I think this is a good idea, I'm going to have plenty to do very soon, and if I start it depleted, it's just going to get much, much worse.

On an unrelated note, one thing I've been noticing lately is that my walking problems get better if I'm walking "mindfully," in the Zen sense. My kyudo shisho(u) (from whom I haven't directly taken a kyudo lesson in way too long, but who continues to teach me daily both via the miracle of the Internet and by things that he said to me years ago finally coming to full realization) has started a blog on Zen walking, and that's very much what's help keeping me upright nowadays. That, and the kyudo saying, "Eye out there (target), mind down here (dan tien)." In that state, the air is beautiful, the world is joyous, my head is high and my back is straight, I am simply present in the world and my walking simply is what it is. But somehow, without me having to expend an erg of additional energy... it's better.

Not a bad result, for the small effort of getting your mind into yourself and out of yourself, and just breathing.

Tuesday, November 10, 2009

Acceptance (see "still elusive")

One of the many, many reasons I love my weekly acupuncture appointment is that I have a few minutes to spend with a very, very wise person who helps me "cut to the chase" in whatever is really behind what's up with me at the time I see him.

We talked about the music performance issues, and my issues with the issues, and again he says, "You still haven't really accepted the MS and everything that it brings with it." And that I certainly haven't accepted what it has done to music performance.

Well, I can't disagree with him. There's too much turmoil within my performance problems. But it's really, really deep. And that's much of the challenge... On the surface, it's easy to deal with. "Well, that's not good... oh well..." There's a huge "it is what it is" component in the experience of my neurologically imposed difficulties. And yet, I have to be honest, it still bothers me, and it bothers me in a way that I am having a hugely difficult time articulating. Do I feel sorry for myself? Actually, no, not at all. ("Woe is me" is one place that I have never gone. At least, I don't think I've gone there--not with the MS, at least.) Am I angry? No, not really... Am I sad? Sort of, I guess, but no, not exactly...

Maybe I need to spend a day at the organ console and just play--and suck at playing--and just let myself go into the feeling and stay there until I figure out what it is.

Just the thought of doing that, just typing that sentence... scares me.

Great. Something else to deal with. First, deal with the fear of confronting the problem, then deal with the problem.

Well, that's the most unwelcome gift of MS. It leaves you no choice but to engage fully the entire truth of whatever life presents you.

My doctor quoted Mother Theresa as we began the treatment today: "God has never asked me to do something that I was unable to deal with. I just wish he didn't trust me quite so much."

Saturday, November 7, 2009

So, now what?

I played for a colleague's memorial service today. Reasonably easy gig, technically speaking; prelude, accompany a duet, accompany a chorus, postlude. Organ blew out a lung earlier that week, so one of the divisions was missing. An expressive division, too, one I was hoping to use. Oh well... Not so big a deal, I've done more with less interesting instruments. And there was still plenty of satisfying registration to be worked with.

Prelude was basically fine. Had to cover an extra ten minutes unexpectedly (crowd kept coming in, they had to "hold the curtain"). Not a problem, I do this sort of thing all the time. I can play until the cathedral burns.

Well, not exactly "not a problem." Keeping the music going, that was no problem. Hitting the right pedal notes was a bit of an issue, not so bad because everything I was playing was simple and slow, but still, too many "almost right" notes for my comfort. Finding the swell shoes (the pedals that change the volume), that was the problem. A big problem. Far too many times I thought that I hadn't moved my foot off the pedal, but somehow it had moved, and it was in the wrong place, and when I thought I was opening the swell box, nothing happened. Too many instances of "What's going on? ... oh, that's why nothing's happening." Nobody but me noticed what had happened, I covered every problem, worked it into whatever I was playing at the time so it was, as we say in IT, "a feature, not a bug," but still... that was bad. Losing control of the instrument, especially in the middle of a performance, is bad. And not simply "bad," it's very, very uncomfortable.

Went to the piano to accompany the chorus. Right foot kept slipping off the damper pedal. Couldn't tell when my foot was on the pedal or off, or on the right place on the pedal to be able to work it properly, and often when I thought I was pushing down, nothing was happening. Had to keep looking at my right foot to see what was going on, I couldn't feel what it was doing. Nobody but me noticed the problem, and the rest of my playing was just fine, but still... as far as I was concerned, it was bad.

The postlude: Got started OK. Was planning on doing some melodic things in the pedals. I've played this piece many, many times before. Except, apparently, not today. I had to do a lot of "course corrections" because my feet wouldn't hit the pedals the way I wanted them to. Didn't help that the crowd was taking way too long to exit the building... Pasadena Civic auditorium, holds at least 2,000 people, they clear out in about ten, eleven minutes. This church, holding maybe 700 at most, took at least fifteen. When every moment you're fighting the instrument, spending most of your energy trying to keep the piece moving and keeping your lack of control completely hidden, it doesn't leave a lot of your brain available to create lovely moving music. Functional music, that you can do, but really good music--nope.

So, a success from the audience's point of view. Everyone loved the service. Nobody but I knew how much I was struggling. So, in that sense, a complete victory. But, you know, I'm not sure what I really feel about what happened today.

In one way: "Oh well." I don't think I'm exactly depressed about what happened, possibly because I kept it going so well, that's certainly a triumph, but I do have to tell you that leaving rehearsal the other day, having been unable to work the piano's damper pedal nearly at the "can't work it AT ALL" point... I did ask myself, out loud, "Do I really want to keep playing music, if this is the way it's going to be? Maybe I don't want to do music any more, if this is the way it's going to be..."

"Just giving up" is the wrong answer. "Ignoring what happened" is the wrong answer. But leaping up like the heroes of Les Miserables hoisting the flag at the barrier and singing, swearing that I'm going to hold the line or die trying... well, I definitely ain't doing that. Is that the right answer, and I'm just not willing to do it? I don't know... Am I just out of practice, will that solve my problems, is that all that's missing? I don't know...

There's an option I'm not seeing.

I think I need to let this sit for a while, and just keep my mind open.

But this was a very uncomfortable day.

Friday, November 6, 2009

Tough love

Tuesday, I get treated. Tuesday evening, Wednesday morning, I feel great.

Wednesday afternoon, at 1:30 or so, I start to feel nasty run down... Of course I stay at work, poking at the computer. Of course I don't go home and lie down. By 3:30, I can tell that I'm dangerously run down. So, maybe 4:00 or so, I finally go home, actually in pretty horrible shape.

Now, that evening, I did go out to dinner with a dear friend of mine, I was really really grateful for his company and his inspiration. And I even had some interesting ideas on something I've been background processing for a while (more about that, later... I still need to think about it a little more). But I never really left "feeling crappy."

Definitely felt crappy all day Thursday. Felt worse. Significantly worse. Called a local five-element acupuncturist, the person I call when I'm in distress and need acupuncture first aid. I can almost always get in to see her very quickly, much more quickly than I can get into my regular guy on short notice, and it's a fifteen-minute drive over nice city streets rather than an hour both ways over a clotted freeway. (And she was trained by one of his office mates and both my doc and said office mate thinks it's great for me to see her when I'm in distress, so everybody wins.)

Saw her today. Got my Three Heater adjusted, now all my officials are speaking collegially to one another and I no longer feel crappy. Another four-needle miracle. Now, I'm in great shape to play this memorial service tomorrow. (And is that ever another story...)

More important, though, was what we talked about during the treatment. One of my big big BIG problems is "not feeling good enough to get started." Fatigue is a big nasty with MS, that's known all to well to all the sufferers, and it really gets in the way of especially my creativity. Because my biggest complaint is that I feel too crappy to start doing things. (Doing anything, usually.)

She had simple advice: start anyway.

Now, "grin and bear it" and all of its synonyms ("just tough it out," "sometimes you just gotta take one for the team," you know the list) immediately cause me to push back. Hard. Violently. If you're not lucky, enraged violently. It doesn't help that knowing when to respect the fatigue and thumb your nose at the fatigue is a very tricky assessment. And one that still needs work--because sometimes, you really, really need to respect the fatigue. That was definitely one of the lessons I learned this week: when you start to feel crappy, don't just buckle down until you're feeling crappy to the point of self-immolation. Quit, lie down, get away from the goddam machine and take a real break, and start again when you feel better.

But I think I'm going to take a slightly different approach than my acupuncturist's direct approach, the "Whether you feel like starting or not, just start anyway" suggestion... Specifically this dialog:

"I feel too crappy to start."

"Yes, you feel crappy. That's very true. And that is pretty crappy, there's no two ways about that. I really do feel bad for you. I understand. Now, let's start."

First, acknowledge the truth of the feeling. Then move forward. Often, I've found that the still small whiny voice will back off once it knows that it has been heard and acknowledged. Push against it, and it pushes back. But (and I really should have learned this by now, I relearn it daily, if not hourly) againstness is not the path to success with MS.

Or life in general, for that matter.

So, start with the truth. Yes, I feel like going nowhere. Yes, I feel like I have no energy or desire or creativity or anything worth sharing. I really don't want to do this.

That's absolutely true. Every word of it.

Now, let's get started.

Tuesday, November 3, 2009


A nasty week.

Started off wonderfully, got a big chunk of music written; I got half way through a new anthem for handbells, organ, and mezzo soprano. Came to a good stopping point, decided to take a break to go out to lunch with my wife, she was driving, she had to swerve a little--just a little!--to avoid something, and I was so startled that I "shorted out," developed some really, really nasty acupuncture blocks that only got cleared this morning.

I've been in this state for a while. "Easily startled" doesn't even begin to describe it. A slight noise, a bump on the road, accidentally dropping something (even if it doesn't break)--they're all just like a body shot with a two-by-four. My doctor/neurologist/acupuncturist tells me this is quite normal; "no insulation," he reminds me. He says that one way to get out of this state is just to take a break and recover, but to remember that such "resets" take time--you can't just "push the reset button" and everything's fine.

Well, that is of course a great idea, but a lot of people are counting on me right now for a bunch of unrelated things (creative things, things that I actually enjoy doing), so this isn't a good time to take a break from life to recover. But even if I could... the basic problem, and this is something that I keep coming up against, is that I don't really know what recharges me. I know I've felt better after doing iyengar yoga, I know I've felt better after doing kyudo, but I've been in a nasty energy state where I haven't had the gumption to do the things that make me feel better. And that state is where I spend an awful lot of time; I've been living there for years, even before the diagnosis--and if there's ever a time to discover the way out of that particular death spiral, it's now.

Reserves. I don't have them... not really. I don't have them because I don't know how to rebuild them. Winter is the season of the Water element, the gifts of the Water element are to wash things clean and to rebuild inner resources. This is precisely the season to rebuild resources.

The Science of Mind Church teaches that we already know the answer to our problems; our challenge is not to "find" the answer, but to see what's already in front of us. And as much as I believe that's true...

... I have no idea what to do. But seeking "what to do" is, undoubtedly, part of my problem.

Kyudo teaches us that "doing" isn't always the right answer. Sometimes the right answer is to get out of the way... which is also what Science of Mind teaches, they say we need to get our "bloated nothingness" out of the way. And if there's one thing we learn from Science of Mind and kyudo and MS, it's that the right answer is found through contention and againstness, it's found by integration, by listening, by releasing, by being open to newness.

It's hardly a "passive" road, but it's not about "doing." So, I guess, the first thing I need to release... is "doing" something about rebuilding my resources.

... Reading this, you can't see the long silence that followed typing that last sentence, but the I-just-got-the-koan "my brain just exploded" feeling I got after coming across that last idea, suggests that it's probably precisely the road not to take (that's "doing") but to follow.

Well then... time to follow the road.