Saturday, October 30, 2010

New approaches

So I've been fighting "low energy+low creativity=no music gets written" for far too long.

I seem to be passed that particular issue, for the moment (just finished a draft of a commission for a church in New Jersey for Christmas, I've got to let it sit at least overnight before I come back to it tomorrow).

At last week's magician's conference, we talked a lot about creativity. Nurturing it; being a "midwife" to a work of art being born, treating it gently in its freshly-born state. And, more important for me, what to do when creativity seems to not want to hang with you.

Last year, a wise woman said that "one cannot command the Muse, but one can create an inviting place for it to alight." This year, one of the best pieces of advice I got was "If the Muse does not wish to alight... tend to her perch."

When the creative fires are raging, I feel as though (forgive the mixed metaphor, but this is how it feels) like whitewater rapids of energy coursing through me, rushing to become manifest. For quite a while, not only have I not been surging with white water, but the river has been pretty much bone dry.

Someone reminded me of the old saying, "You can't step into the same river twice." Perhaps...

But you can stay wet.

So the rapids aren't surging, the way they used to, summoned by little more than the snap of the fingers. Perhaps when that happens, rather than wait for the torrents to hurtle down from the heavens, I should just sit in the shallows and enjoy what water there is. Just write something, and don't worry whether it's good or not. And certainly, don't stop, simply because the flow isn't torrential.

It's interesting... I accept not being able to walk or drive much more easily than I accept having troubles creating.

Attachment is a slippery devil, isn't it?

Tuesday, October 26, 2010

Is it over?

Not the MS... the creative drought.

So I get this call from a church in New Jersey (I have a connection through one of my wife's college classmates), asking me if I could write them a piece for Christmas, with such-and-such an instrumentation.

I said yes... I must admit, somewhat haltingly, fearing that the creative energy just wouldn't be there, that the power simply to sit at the computer just wouldn't be there.

So I open a Christmas carol book, looking for some sort of seed/inspiration, and... I look at one of the carols, and I say, "That one!" And then I thought, no, not quite... and I keep looking, I land on another, and I say, "No--THAT one!!!"

About five minutes later, I have a tune, I have a seed for the whole composition. I just got some sketches down this evening, I'm a little low on steam and want to stop before I suck myself dry, but... I saw the answer. It hit me. The music is flowing again.

And maybe... just maybe... it'll keep flowing.

Might it have been the magician's conference that uncorked the bottle, as it were? We spent several days in a state of mental clarity and internal openness, reaching in to find our innermost selves and reaching out to share our hearts with each other, and trying to hitch our mental processes to find the techniques to channel that again, to connect our hearts through magic. A few days of very, very intense heart- and mind-opening, heart- and mind-connections. Both of which--and the simultaneity of which--I have really, really missed, for quite a while now.

Truth be told... why it started doesn't matter as much as "let's keep it going."

An acupuncture treatment tomorrow, which (I hope) will clear some of the fatigue, at least for a few more than the usual days. And clarity, for music writing.

Is the creative drought over?

Let's hope so. I've been hoping so every day for... weeks. Months. But, maybe this time...?

Hope springs eternal. Hope is something we always have; it's one of the main components out of which the universe was constructed.

If all goes well... I'll have more than just the comfort of hope. I'll have some music. And an open door for more to flow through.

Monday, October 25, 2010


I arrived at school already at about 80% exhausted.

I had a wonderful day with my students. We had a good review session, we laughed. I said some really deep things to one section; this section, I think, enjoys depth.

By the end of the day I have left 100% exhausted in the dust. I get home and I can barely walk to the bed. Two hour nap.

I get an arrangement done for this Thursday's handbell choir rehearsal. Sent an e-mail to someone in Connecticut who wants to commission me for a composition to be performed this Christmas. Will I able to do it, will I have the energy, the creativity, and get it done in time for them to rehearse enough to perform it, I wonder, but I ask him for a few more instrumentation details and tell him I'll get it done.

I had intended to attempt (at least) some more composition work, but I sit in front of the TV -- honestly, and I'm really telling you the truth here, not because I don't feel like trying to compose but because the cat has been at the vet for days and she really wanted some reassurance and "sitting in daddy's lap" time.

I manage to scratch this out, and I'm going to head for bed because my legs hurt and even my comfy chair isn't comfy. I had put some music paper in the bedroom to do some compositional musings, but I think it'd be better just to turn out the light and give up.

Was today productive?

To say "yes" denies the things I couldn't do because I started the day too tired and ended the day even worse. To say "no" denies the things, the good things, that I actually did.

Well, that's MS for you, I guess.

Sunday, October 24, 2010

A first

Earlier today on Facebook, I saw a picture of the participants of the seminar at which I participated last week.

On one end, I saw myself. In the wheelchair.

As far as I know, it's the first picture of me in a wheelchair.

I'm not sure what I think about that.

But I know how I feel.

Weird. Uncomfortable. Not depressed...

But uncomfortable.

I suppose that being forced to acknowledge your own frailty is a gift of MS.

But not one I particularly wanted, in that form, today.

Saturday, October 23, 2010

Two little words

In the MS world, we're besieged by "can'ts."

I can't walk.

I can't play the organ.

I can't control my intercostal muscles.

I can't feel anything in my (fill in the blank).

And here are the two words that need to change:

I can't do X any more

needs to become

I can't do X right now.

Factually, it's more accurate. With all things neurological, the future is unknowable (as the future is, anyway) so "I can't do this" is 100% accurate, but "any more" has 100% unknowable accuracy.

"I can't do this ... right now" is 100% true and 100% accurate.

We have enough problems as it is. We ... I ... need to remember to speak the absolute truth about my condition.

The Good Book promises that "the truth will set you free."

Time to cash in on that promise.

And, just thinking about that promise, right now... I think that it is, itself, 100% true.

Truth upon truth upon truth. How is that not a winning combination?

And... is that not itself... a gift?

Friday, October 22, 2010

Wilderness; nirvana

It was the best of times; it was the the mildly weird and pissiest of times (hardly the worst, but I don't need to go through them again).

The wilderness first... I'm at a magician's convention in Henderson NV, gateway to Las Vegas. An entirely wonderful experience. Mostly (more about the wonderfulness in a moment). One of the evening events was a gathering called Wonderground--which, if you like such things, I recommend very enthusiastically. A delightful convocation of gentle artistic oddballs, each of whom are fantastic artists in their own fields. Food was astounding and wonderfully priced. As entertainment, as a "happening," it was phenomenal.

It was, however, not designed with people in wheelchairs in mind. Wheelchairs and party crowds, no matter how benevolent, don't mix. The worst part of it was that my legs were aching rather nastily, and I had nowhere to hide/lie down/recover. I enjoyed the shows, but I didn't enjoy being in either my chair or their chairs for as long as I was stuck there. There's another similar event going on at this very moment... at which, as you can imagine from the above, I'm not present and not sorry about my absence. As much as I would have enjoyed seeing some of the performers, some of whom are quite literally world-class performers. Chaos and I don't get along any more, even benevolent chaos, and inability to get into comfy and restful-for-whatever-condition-I'm-currently-in furniture is going to put quite the kibosh on my "going out" for the foreseeable future. When being somewhere is fun, but being anywhere besides my comfy chair or in bed is most definitely not fun... well, as Sancho Panza said in Man of La Mancha, "Whether the pitcher hits the stone or the stone hits the pitcher, it's going to be bad for the pitcher."

But there's an unbelievable upside to being at this conference. As a presenter, I'm sharing the stage with people who are unbelievably clear, in thought, imagination, intention, and action. People who know not only how to "think things through" but to "take things to the end of the road." People who are powerful in mind and powerful in spirit. And I belong with them. I'm one of them. I'm home with them. This state of blissful clarity is the state in which I belong. Here... I'm home.

Except at this conference... I'm not around, and certainly never surrounded by, people who think things through, who take things all the way to the end of the road. Most of the people around me, God love them and bless them for all the good they do in the world (and they indeed do quite a bit of good in the world), are lucky to even be aware that there is a road, much less thing things along it for any amount of time and space, and never to the end.

Am I in the right place, if I'm not surrounded by like minds? Well, one thing I'll say: they allow me to go to things like this, and I bring back what I learn--quite literally bucketfuls--to share with my students, and thereby I can do a great deal of good for them and the world.

But I miss My People.

Tibetan Buddhists say, "I take refuge in the Buddha, I take refuge in the dharma, I take refuge in the sangha"-- the last being the community of pilgrims on the same road.

I have a sangha... but I'm separated from them. I can only rarely take refuge in them, and only for two or three days at a time.

My truest, best friends are busy with their children, on the other side of the country, both of the above... or dead. As far as the sangha goes... I have no home.

But those two or three days... sheer heaven, wheelchair and all.

Tuesday, October 19, 2010


Had a wonderful acupuncture treatment yesterday. Had a wonderful dharma talk. When I arrived at home, I was full of energy, full of hope.

About twenty-seven hours later, I'm completely out of energy. I've got maybe enough energy to sorta kinda go through the bag I'm taking to Nevada tomorrow, to clean it out so I'm not wasting energy carrying scrap paper and other why-carry-it detritus. I'm not exactly out of hope, but I'm certainly out of pretty much everything else.

What a difference a day makes.

I wonder what, exactly, caused that difference.

When I figure out what it is, I won't do it again. So I can have energy and hope and joy for more than... well, frankly, I think I was pretty much out of juice around 9:00 this morning, which means... the "feel good" from the treatment lasted what, sixteen hours?

'Course, if I hadn't had the treatment, I'd feel much worse now (given what the treatment addressed).

So... a net gain.

I guess.

Saturday, October 16, 2010

Vindication (?); manifestation

Just found the MS Society of the UK's site, this morning. I felt that it offered a lot of open-minded compassion, more so than the US society's site suggests (I make no statements about the organizations, just my impressions via the web sites). Most interesting was their note, on the "disease-modifying drugs" information page, that research to date shows that those drugs have no benefit for primary progressive MS, the type we now think that I may have.

So, my initial decision to stay off the drugs may very well have been precisely the right one: as a "progressive" patient, they wouldn't have helped me at all. All that expense and all those side effects would have been for nothing.

I only take a Colbertian-raised-eyebrow's worth of satisfaction at that thought. Hard to be smug about having a more inconvenient version of the disease, especially given my current motor challenges. And besides, as Aslan said in The Voyage of the Dawn Treader, "No one is ever told what might have been."

In other news... I'm having a very non-fulfilling relationship with manifestation, right now. I seem to summon the "oomph" only to do very shallow things. Necessary sometimes, so getting them done can be convenient, but the big things I used to do without thinking, they just ain't happening. I started a big piece last week, I did some hugely important "figuring out" work, solving some crucial-to-the-work's-success problems, but creativity? Not there. Resolve to bite the bullet and press through the difficulty and just do my best? Not there.

I don't "want to just sit in my chair and read." I don't "want to just sit and watch TV/Movies/YouTube/whatever." I do not even a tiny bit crave passive sensory input above constructive creative engagement. I just... don't want to do anything. Anything.

Maybe I'll make some Japanese soup for dinner, we just bought a couple of pots specifically for dobin mushi, a favorite of ours and it's the right time of year for the right kind of mushrooms, so now is the best time to do it. Maybe I'll make some herb oil. But that's about all I want to do today, even if it does entail a lot of standing during the cooking process.

I need to practice my presentation for next week's big magic convention, it's on the edge of "really good." if I can, I need to create a handout. That, at least, I can do from my comfy chair.

I've been in this same state of self-sustaining depletion ever since The Diagnosis. And I'm damned sick of it.

My doctor says, it's indicative of the need to make a fundamental change. What needs changing? Of course, we don't know that. We never do. Nobody does.

He made some suggestions of some roads to consider traveling, some avenues to investigate. Of course, that does take energy, which I don't have much of.

If I wasn't constantly tapped out, I'd have the energy to do that. Of course, if I had the energy, I wouldn't be tapped out and thus wouldn't need to do it. The very thing I need to cure keeps me from finding a cure.

As with much about MS's dark humor... you just can't write this stuff.

Saturday, October 9, 2010

Surprisingly expensive

This morning, I washed the dishes, did a load of laundry, vacuumed the floor, and took off the grating of the heater and vacuumed inside the heater, and also cleaned the area underneath the grating that you can't reach with the floor vacuum if the grating is attached (oh, if the original owners had only installed it two inches higher). The sort of morning that has always been a surprisingly pleasant, surprisingly fun "isn't it nice to make a clean house" experience.

Well, it still was all those things. But by the time I was through, I was barely able to stay standing while I took a post-cleaning shower, and barely able to walk. Anywhere.

I somehow made it to the bedroom, dove into the bed and slept, hard, for something like three hours. I'm just now finding the strength to do the things that I actually wanted to spend the day doing (even though I'm still glad that I got so much cleaned).

Intellectually, I know how much what most people would call "normal" activities cost (energetically), but I don't always remember how much they actually cost. And how much the reminder of that cost, also costs.

Still, on balance, it remains a thoroughly lovely day. Windows are open and filling the house with gentle, clean autumn air, adding to the loveliness. So I didn't get the creative work done (yet) that I was planning on doing. But the dishes, clothes, and floor are clean.

Oh well. Such is the MS road. You take what you can get.

Thursday, October 7, 2010

Different news

Oh, I so love my new herbalist.

I've been on his diet (no raw leafy greens, no dairy, plenty of plant proteins, no coffee (been doin' that one for 14 years, that was real easy), minimal sugar) for something like four months now. I just saw him yesterday. He said, based simply on his examination, "I can tell you've been following my diet to the letter. This is better, this is better, this is better..." and now that those issues are well on their way to having been cleared, we're able to address what may be one of the primary problems, and once we get that, we can start to see whether my over-enthusiastic immune system is specifically hacking at my myelin, or at something else.

And he gave me a new formula, told me that if things didn't get better in a week I should double the dosage, but call him either way.

And oh yeah, did I mention that his formulas have no side effects? NONE?

There was no promise of "cure," or "remission," or anything like that. Those terms were never mentioned, and I'm positive they never will be (certainly not "cure"). But, to hear news of improvement? And that there was at least a possibility of more improvement?

That don't come often, in the MS world.

It was a nice day.

Tuesday, October 5, 2010

Missing images

OK. I can't not at least mention this. I've been thinking about this for a while, might as well deal with it.

All of the photos on this blog are of things that I am barely able, or no longer able, to do. Last time I tried to get into the kyudo stance, I nearly fell over. My left foot, previously the better of the two organ-pedal-playing feet, is all but unusable on the instrument, and the right foot ain't doin' so good either, so I almost never play the organ any more. I suppose I could stand next to percussion equipment--briefly--but I don't think I could play in an orchestra standing, any more.

A few pictures have been taken of me, in the last year or so... Three or four at most. I think in all of them, I'm sitting at a restaurant, with my wife, smiling. The same restaurant, too, I think.

Which, you know, there's nothing really wrong with. And we really like the restaurant.

It's easy to amass pictures when you "do" things. When you're "active." Technically, I still do things (we're speaking this time in the non-Buddhist sense), but they're just not photogenic--photo-generative. They tend to involve sitting. Alone. Sometimes in front of a class, talking. Or watching them work. Nothing that really attracts photographers, or that demands photography.

Oh well. So what. Of all the things I've lost due to MS... I mean, really, I don't attract photographers any more?

All of our problems should be so easy. And silly.

Sunday, October 3, 2010

Missing connections

Gentle readers, those of you who follow me are probably not surprised when I talk about the non-standard therapies I pursue.

I visited a new qi gong person yesterday. She had a very gentle spirit, a very gentle touch; she's just starting her practice, and she's going to be very, very good at it.

I told her my main complaints about the MS experience. The walking, the issues with (let's call it) the plumbing, the vision, the control of my legs... these are inconveniences. My main complaint is the energy loss--specifically, the creative energy loss.

So she was working on that, and while I was lying on the table during the treatment (not much for you to do besides lie there, during qi gong, and check out the sensations of the energy moving around) I started to have some really good ideas, pertinent to a presentation I'm going to give later this month.

And I mean really, really, good ideas. Powerful ideas. Interesting ideas.

This is the kind of world I want to live in. Trouble walking, I can work around, but powerful ideas... those, I crave living with.

A day later, I still sort of have the connection to that place of creativity, it's still sort of flowing, but it's not gushing like it did yesterday.

Ebbs and flows are completely usual for creativity... but what I fear is that, when this ebbs, it won't flow back. That has been the MS pattern: the energy leaves, but it never returns. And so I fear that yet again, I will have been restored, only to watch everything seep away. Again.

Nothing recharges me. Nothing.

Except... the energy of autumn. The Metal energy of autumn. There's a special spark in the air during autumn; when that cool bracing breeze blows, and I feel it in my very soul, and I breathe that crisp air, and... I hear a Wagnerian horn call ringing through every fiber of my being. God, it is wonderful.

It's best in New England. It's wonderful in the high Sierras. I can feel it in the Nevada desert. I could even feel it in Hawaii.

It's pretty much completely missing in Los Angeles. There's no "metal" in the air. No crispness. No energy; no freshness, no power. And (again, looking at it from a five-element perspective) without the gifts of Metal that bring you clarity and the ability to release the no-longer necessary, you have nowhere through which the Water can flow, and renew your very substance, so that new growth can occur in the spring.

What little Metal LA has, I can feel--barely--in the air today. The "zing" of the New England autumn, that I absolutely lived for when I was in Connecticut--that, we ain't got. And dammit, that's what I really, really want.

As soon as I finish the scut work I'm trying to clear, I'm going to make myself a nice cup of tea, and go outside, and try to tune my spirit to the "Metal" energetic wavelength; breathe the air, become invigorated by the wind, and maybe, just maybe, the same way you can pick up Los Angeles AM radio in Nebraska by the way the radio waves bounce of whatever they bounce off of, I can find the Metal in Connecticut and soak it up.

And finally, recharge. Maybe for more than just a few hours, this time.