Saturday, April 30, 2011

Arboreal metaphor; resonance, reverberation

A red-leaf Japanese maple tree, in my backyard.

Last summer, it got completely fried by the heat. Its beautiful foliage completely burned away. All that was left was a skeleton, with a vaguely sort-of green trunk.

And now... it has burst into red leaves again.

It's not what it once was; you can still see the "skeleton" of what it used to be, of what used to hold quite stunningly beautiful foliage. But along the trunk, you can see that it is quite enthusiastically covered with leaves.

What is the tree doing? Making the best of what it has; shedding not a drop of its lifeblood on the old, dead branches, but pouring it all into wherever it can grow, and gather light; and its new growth starts not at the ends of dried out, broken limbs, but on its trunk, at its core.

How is this not a living parable, a living sermon, for not just MS sufferers, but for humanity?
  • Don't waste any energy on what was and what can't be. Put all your strength into what you can do.
  • Don't rebuild starting at the ends and the edges. Build from your core, from your center.
Yesterday, I caught BBC America's coverage of The Wedding. I had (and have) no interest in dresses or attendees or... well, anything—except the music. And when I heard—felt—the Westminster organ shaking the earth, I felt like it was shaking me. And I felt like I was home.

And I heard the processional, Parry's "I was glad." I've performed that piece, both in the choir and on the organ, and I've loved it every time; but that choir, and that organ, and that wonderful, wonderful room, created music that is guaranteed to touch... to transform... the soul.

And that's what I'm about. Transforming the soul. That's my kind of music, the marvel that is high-church golden-age Episcopalian cathedral music. I don't even care whether or not it's performed in a cathedral (nice though it is when it happens). I just love it.

And I sat, and I listened, and I wept.

And I was transformed. Renewed.

My legs still don't work. I'm barely able to walk, I certainly can't play the organ pedal board, I can't even stand up for very long. All sorts of things are still still malfunctioning, thanks to my neurological nonsense.

But my soul... is renewed.

My soul has been battered, for quite a while. Dark, and sad. Today... it's full of light. I spent the day writing music, even!

Don't know how long it'll last. Or even if it'll last.

Don't care. Because now... the light, the clear, radiant light... is beautiful.

Tuesday, April 26, 2011

The cruelest month

It's been a few days since I last checked in... I've spent a lot of it in the sack (or in "a" sack, of some sort). Took a couple of days off of work, may take another one off tomorrow... I hope I can make the drive out to my doctor, where--I hope--I'll get some support, or at least relief.

You know how when you're just starting to catch something, and you have this uncomfortable feeling, and you know that you're getting sick? You know that you're sick, no matter what the symptoms might be?

Well, here's the thing. I don't feel "sick," as such. Completely deflated, barely able to concentrate on anything, I try to read various screens but it doesn't work very well or feel very enjoyable, I cough my lungs out, I'm not sleeping through the night but I'm zoning out a lot by day, I had to bow out of what I hear was a simply wonderful evening with friends because I just couldn't deal with leaving the bed, I nearly fall over every time I get up, I'm emotionally unbelievably fragile--brittle. But, oddly enough, I don't feel "sick." Not "I've got a cold" or "I've got a flu" or the usual kind of "I know I'm sick" sick. Malfunctioning--that, I definitely am.

Been tromping through the darkness, too... trying to process it, not to wallow in it, and doing my best not to avoid or deny it. An interesting, unpleasant road. Been finding a disturbing track record of avoidance/denial, the very thing I'm trying to confront in my handling of the MS experience... as the saying goes, practice doesn't make perfect, it makes permanent; and trying to de-permanent-ify denial is ... quite a road.

And add to that all the physical I-have-no-idea-what's-up-but-I-ain't-enjoing-it nonsense that has been compounding the neurological nonsense that's a constant source of unpleasantness...

Well, T.S. Eliot, I'm told, said that April was the cruelest month. I dunno if it's April's fault, but... hoo boy, what a ride.

Friday, April 22, 2011

But... go.

Vacation day, today. School's out for Good Friday.

Yesterday, I had plans about spending the day working on a composition that I just started last... week. Yeah. A week ago. Haven't worked on it since 'cause I spend so much time in bed, exhausted, often recovering from whatever it is that keeps me up for hours at night.

That was yesterday. I spent today... in bed. Exhaustion and headaches.

Maybe... maybe... I'll be able to write some music this evening. Maybe.


But here's the thing... Day after day, I feel like every day, my creativity is being stolen. That my life is being stolen. Stolen. A day gone; a chance gone. Gone and gone forever.

And I feel nothing. Yeah, I'm kinda darkened by it but, basically... nothing. No rage; no grief. And I don't think that's right.

Judy shares her rage at M.S. in haiku. I've been told I should express my feelings about my own condition in music.

I would, if I only had any.

But here's the thing... I know that my feet, my legs feel things as they always did. It's just that the message isn't getting through. I have to assume that I do have feelings about the losses that I'm living. They make me sad. They make me angry. They make me something... but they're just not "getting through." I feel them, somewhere deep; but at the top of my awareness, I don't feel them.

And that's not right.

And I don't know what to do about it.

Is it possible that I'm spending a lot of energy repressing everything? Probably. Do I know how to stop doing that, either? Nope.

The road I'm clinging to isn't working. Another road needs to be taken. The words that come to my mind as I type this are "Walk into the darkness. Embrace the void." Because sometimes, the way out of the darkness is through it.

And I don't know how to do that, either. The things one practices come so easily, and what have I been practicing? Denial. Avoidance. Clothed in high-mindedness; ah, such nice clothes. So comfortable. So well-fitting, so perfectly tailored. I make sure they fit perfectly--every day.

Funny, when the road becomes clear... by leading into darkness. When it says, "Go where you do not know where it will take you. Except... it's going to be unpleasant. You're not going to like it."

"But... go."

Wednesday, April 20, 2011

Three action items

Double doctor's appointment today; acupuncture and herbs.

Acupuncturist opened a block, and needled several points named "gate," including the Gate of Life. I'm hoping its effect holds true to its name (and was worth the pain, 'cause dang, it hurt).

Had an interesting verging-on-a-dharma-talk about acceptance, and am I really accepting, or even acknowledging, the impact MS has on my life (in a word, "no") and how deferring rather than engaging takes more energy. Gee, it's not bad enough my nervous and immune systems are at odds with each other, I'm losing energy by not dealing with the pain. Go figure.

Had another, completely different, but just as interesting talk with my herbalist. He's going to try to address some of the problems specific to my leg control (and thus, inability to control the organ's pedal board). He talked about his approach, and a lot of other, very interesting things... but the upshot of the day was: Stick to your diet, keep taking your herbs, and don't give up. One of the nicest things he said (with a really quite wonderful smile) was "We never give up, here."

Now, that... that I can do.

Saturday, April 16, 2011


So I'm working on developing a new magic trick. (I am a member of the Magic Castle and the Mystery School, I really should work on magic from time to time, especially since it doesn't require use of my legs). First public showing: Spectacular success. Next two public showings: not so much. I managed to joke my way around what I regarded as a failure, but the problem was not the equipment, it was me.

As a result of said failures, I figured out what I had done wrong and how to never have it happen again. There's a certain special kind of magic all its own, in figuring out how to failure-proof something.

And I never would have come to that realization except for the failures.

Up creates down; failure creates success; ending creates beginning. The Taoists told us that millennia ago.

So, those of us on the MS road have been shown how not to live our lives. How we cannot live the way we used to live.

Are we not being shown simultaneously, the way we must live?

How "not to live" is abundantly clear. Uncomfortably... painfully clear. The message "how you must live" must also be exactly as clear.

I want to hear the "go this way" message as loudly as I hear the "don't go that way" message.

But I don't yet know how. I need to listen better; more closely; and differently.

But I don't yet know how.

The MS road is living a koan. Trying the usual, comfortable way to understand it; faking your way through it with convenient answers; "trying" at all... is not the way to meet what it puts before you.

The answer to a famous koan was "Mu" -- the character for "nothingness." Not exactly attained by "trying," is it?

Sigh. Mu.

Thursday, April 14, 2011

Very... very... different

So, tonight I sit down at the organ, thinking that I need to start practicing and getting ready for the Really Big Show that is Commencement, first weekend of June.

And that's when I discover...

I have no fine control over my feet. I can no longer play the pedals. At all. Not even a little bit. Not even aiming at and trying to just lean on the low C, the easiest note to hit on the pedal board. As far as actually playing the pedals, I can't control my feet at all. I can barely control the expression pedal, a big fat piece of wood shaped like a giant gas pedal.

My initial reaction was not grief. Was not anger.

Quite literally, I said--aloud-- "OK. I'm not going to say 'I can't play the pedals any more.' I'm going to say 'I can't play the pedals today.'"

And then I said, "Let's see what we can do without them."

And I'm happy--relieved--to say, that I did OK, pedal-less. I can't--right now--do the sorts of things that I used to, but I can be convincing. And that's all I need. Nobody but me will know what I'm doing, or what "might have been."

Is "let's see what we can do" a "good reaction"? A "healthy reaction?" Oh yeah, sure, probably is, but I've been functioning as an organist since 1973, and even before then my piano teacher said that even when I played the piano, I was playing the organ. Thirty eight years of being an organist... and now I'm not. Except I am--I can play certain things, certain ways, on certain organs.

Well, I always was a non-conformist.

Maybe that's why I'm reacting calmly. At the moment, at least.

I'm going to have to let this sit a while. Maybe I'm not really ready to face it, right now.

But am I going to put on a good show, come commencement? Hell, yes. And I'm going to have fun with a wonderful organ.

But it's going to be... different. Very, very, different.

Very... very... different.

Tuesday, April 12, 2011

Needles tomorrow (bring 'em on)

"Oft hope is born, when all is forlorn!" Thus said Aragorn in The Return of the King as their captured ships headed towards Minas Tirith. It's a lovely sentiment, certainly; I hope it works for us as well as for the fictional captain of the Dunedain.

Oh, I am so looking forward to an acupuncture treatment tomorrow. Another annoying cycle is coming back upon me: the loss of sleep.This nonsense has been hitting me, hard, for at least a month. For a few days after a treatment, I sleep quite nicely through the night. I even had a couple of nights of really good, strong dreaming last week. But beginning two nights ago, and really nastily last night, I wake up around 1:00AM and then stay awake until 3:00 or 4:00. Or, as has happened in the past, 5:00. When this sleep-cycle-shifting hits me during the weekend, I can nap during the day (for a few hours) but that isn't really available to me during the work week. Today, I've been doing my darndest not to do any napping, hoping that it'll mean that I'll sleep through the night.

We'll see.

A few days ago, I had hopes to come home tonight and work on some music. I really didn't have it in me to try and create tonight. Instead, I poked at some "needed to be done eventually" programming for work, which went pleasantly well and pleasantly quickly; that'll button up in short order later this week, but I hope the "restoration buzz" that comes from a good acupuncturing will last for at least a few days.

Lemme tell you, not being able to get any sleep really hurts when your days are spent around 14-year-olds. Many of them are very interested in trying new things and going new places. Many of them are interested in having fun and making noise instead, which gets in the way of you trying to help the other group move to new things and new places. Approaching them sleep-deprived really adds an extra hit to your ingenuity and generosity. And it's doubly disheartening when I plan on, and set aside, a chunk of time to work on some creative/musical stuff, and that time is stolen from me because I intend spend most of the daytime hours sleeping, restoring the sleep deficit that I had incurred for no good reason the night(s) before.

Oh, the headache? That won't go away? That you wake up with in the middle of the night and every morning and that you've had for hours? Forgot to mention that. That's nasty, too.

Judy Worsley, master acupuncturist, often asks her patients who are asking for treatment for a particular illness, "So, why did you give yourself this disease?"

I wonder how I'd answer that...

Saturday, April 9, 2011


Another pattern--is this a remit/relapse cycle of some kind? Not MS-symptomatic, but perhaps MS... "inspired"?

A great "energy treatment" on Wednesday. I feel, for a while, completely renewed. Positively dripping with philosophical/spiritual insights.

Here it is the end of the week, and I'm at least moderately un-renewed. I don't even want to get out of bed.

Saw my herbalist Wednesday. He said, "Energy treatments don't last. Einstein told us everything about how energy relates to matter." The five-element people have known for millennia that mind, spirit, and body are interrelated. I've been putting a lot of attention into mind and spirit, trying to get at least one (if not both) of them unstuck and liberated. Getting the body "unstuck"... we're not there yet, I guess.

I'm on a new herbal "blaster," trying to clear what's currently in my way. A dose every two hours. No side effects except lousy taste... kinda reminiscent of, at best, bong water. Jury is still out as to whether it's helping. Sometimes I think it is, sometimes I think it isn't. Ride it out for the weekend and check in on Monday, I think is the plan.

Recording my wife for some voice-over stuff this afternoon. Sing and play the organ in a concert tomorrow. Today should be easy, tomorrow's going to be... interesting. Taxing. But, with luck, possible (at the worst) and enjoyable (at best).

Well, that's life for you. Isn't that the biggest lesson of the MS road? "That's life?"

According to my doctor, one of his MS patients has said, "Whatever it is that makes us get MS in the first place... is what makes us the only kind of people that can deal with having MS." An interesting koan: whatever brought this upon you is precisely what enables you to live with it.

I've said it before, and I'll say it again... humor like that, you just can't write.

Wednesday, April 6, 2011

My, what a distance I've traveled since I last shared with you.

I had to have two acupuncture treatments this week; Monday, and today (Wednesday), after which I saw my herbalist and got a real "blammo" herbal formula, which I'm supposed to bang down every two hours for the next few days or until my legs start getting stronger.

Absolutely amazing realizations today, on many levels.

One thing my doctor told me, during my dharma talk/acupuncture treatment, is that he too is finding that the MS experience is really "shaking his tree" where it comes to attachment. This has been very much my experience, too... it keeps forcing me to come to grips with grieving for what things that I am losing, or have lost, no matter how big or small the loss.

I also realized today just how huge invitation is in my engagement of life and creativity. I've always been a "creative" rather than an "administrative" type, I tend to be drawn to create catalytic, transformative experiences. But I need to be invited to create that transformation. I'm just realizing that a lot of my jobs that have "dead-ended" badly were in places where I wanted to create a transformation, that I tried to create a transformation, but They, whoever "They" were, just didn't get it, and truth be told, did not want it; and so, I was stopped. Cold. And the story almost always ended badly... sometimes very, very painfully.

Something really hit me when I saw a recent exhibition at the Huntington Library. The second I saw this, I heard these words in my head: Create your art, even if nobody asks for it, wants it, or likes it. Create it because it's your art. And that's reason enough.

I wonder if this is the big change that the universe has been trying me to make. I realized yesterday that I was very, very angry at the universe for taking away the people who loved my art, asked for my art, celebrated my art, gave me unbelievable opportunities to create beauty, to create sublime transformation. Well, yeah, in the mundane world they retired; but I saw it as the universe taking my joy away from me.

And this may be where the MS road has been trying to take me: Just create your art. It's enough that you create it. It's hard since I tend to create such collaborative art--when you write music for people to perform, it doesn't really happen until it's performed. But I need to stop trying so hard to change people that don't want to be changed or circumstances that they don't want to let go of, even if I could make them better.

Robert Heinlein said, "Never try to teach a pig to sing. It wastes your time and annoys the pig." I need to stop trying to get the pig to sing, and start singing myself—whether anyone else wants to sing with me, or even listen to me.

Time to go get more herbs. If this formula works, there's a good chance that the leg-strength degradation that's been slugging at me could very well be reversed.

A good night of rest; kind of a heavy day tomorrow, but with luck, I'll make it. And then... time to start creating my art. Whether anyone else wants it or even cares about it... because, dammit, it's my art, and it needs creating.

Let's see if I can go down that road for a change.

Saturday, April 2, 2011

Boats and a helicopter

I so desperately need to see my acupuncturist. I feel awful. "I don't know how I'm able to live like this" sounds darker than I intend it, and I'm certainly not going to do anything THAT drastic to end it (or should I say, to End It--I'd never do that to my friends and family, no matter how glum I feel) but "I don't know how I'll be able to work like this" is certainly true.

I spent yesterday reviewing the last two years of blog posts. In the vast majority of them, I talk about being blocked (the five-element-acupuncture condition, for those of you who haven't also read the last two years of posts). No energy, no creativity, certainly no enjoyment of life. Which means that I've been stuck in this horrible place for basically two years. If not more.

My doctor/acupuncturist says that nobody ever knows what causes these things, but they indicate a need to make a change in one's life. I'm happy to stipulate that, but... as to what to change, I'm completely lost. I talk philosophical, but clearly, I ain't doin' s--t about it. 'Cause if I were, I would have put an end to this suffering long ago.

Story goes, a man's home was nearly swept away in a flood. He was standing on the roof of his house, clinging to life as best he could. A boat came by; someone called out to him to jump aboard. He said, "No--God will rescue me!"

A second boat came by; those in the boat desperately tried to get the man to come aboard, but he insisted, "No--God will save me!"

A helicopter flew by, a ladder was tossed out, the pilot tried to wave the man on the roof onto the ladder, but he waved them off: "No--God will rescue me!"

Presently, the flood waters rose and overwhelmed the house and the man. He drowned.

Crossing the pearly gates into paradise, the man confronted God: "I believed in you! I had faith in you! I thought you would save me--but you let me drown!"

God said to the man, "I sent two boats and a helicopter. Wasn't that good enough? What else did you want?"

So, I am drowning in energetic blocks. The universe has, I'm sure, already sent more than two boats and several helicopters, but I'm still drowning. There is a way out of my current situation, but I have no idea what it is.

What do I want?

Understanding of what to change. Because I definitely can't continue living like this. Neurological, I can live with. No energy, no creativity, no enjoying simply being alive--that really, really, sucks.

Friday, April 1, 2011

Fifty percent comfortable

A truly, truly beautiful day in Southern California. 82 degrees, the phone says. All the windows in the house are open, and the fresh air is truly a delight.

The picture shows a portion of the Japanese Garden in the Huntington Library. Like me, it has seen better days; it still has a special beauty, but it is not what it once was. Unlike me, it's getting renovated... it'll be closed for a year, and then reopen, even more glorious than ever.

I should be so lucky.

But to return to the weather: wonderfully warm, simply delightful. And I'm already overheated, and sitting in my skivvies as I type this.

Overheated, that is, except for my legs, which after months of being horribly cold, are finally edging towards "warm enough."

Great. I'm Schrödinger's MS patient. I'm 50% comfortable. Am I comfortable? Am I uncomfortable? Nope—I'm 50% comfortable.

Well, at least the 50% comfortable part is comfortable.

And, with any luck, I too will soon be granted an overdue renovation, and emerge even better than before. Until then...

Well, 50% is higher than it could be, I guess. You take what you can get, in this business.