Friday, December 31, 2010

Year in review

I spent some time today reading the past year's blog posts, to see if I saw any running themes; and, even looked back to 2009, to see what has changed from two years ago. Here's what I saw:

I don't get out any more. At all. Even to things like "the store." (Has a lot to do with "no wheels," at least, I hope that's what it has the most to do with.) I didn't lose much work, that was good. But work is pretty much all I did.

I don't have much fun. I'm not depressed, but I don't have much fun. But when I do have fun, it's transformative--both the event and the fun.

I don't walk any more. I can walk (sort of), and I can manage with the walker, for short distances. But I don't walk. I don't really move around.

Iyengar yoga makes me feel better. Why don't I do it? (See above under "don't get out" as a first reason)

I don't do as much kyudo as I'd like to... the first step, "take the stance," involves standing, which I'm not so good at any more. There's the zeroth step, walking to the shooting line... oh yeah. Walking. Which I don't do much, any more. The walker and the local archery range... yeah, that'll be an adventure.

I want to write more music. A lot more music. But I feel like my creativity has been... absent. I'd be writing more music, but I don't have the energy even to just get started. And if I had more inspiration... yeah, I'm able to write things now and again, but the "open the faucet and out it comes" magic is not really with me, right now. Not like it used to be...

How. Many. Times. Did I describe something using the phrase "SORT OF"?????

Never having any energy is the big problem. I feel like I don't have any energy. Ever. All sorts of people try to restore it to me; it never lasts. Never.

There are more things I learned, but what really comes across is... I have a lot of philosophical thoughts about how to transform my life.

And then I do nothing about it. I see what generically needs doing, and speak eloquently about it (I like to think), but I don't see the specific changes that need to be made.

This is possibly at the base of pretty much everything that I find is wrong right now. There have been times during my pre-MS life where I looked at not-so-good stuff I was doing, and I simply said, "Nope. Not any more. It's over." And it was.

I can change. I've done it before. When I've seen what I needed to change, and wanted to change.

I don't see what I need to change. That's problem 1... And problem 2 is that I feel almost no true based-in-the-heart desire for anything any more. To the question "What do you want?" the answer is "I don't 'want' any more."

Cheeze. No wonder I'm stuck. Don't know what to change, and don't really "want" as such, any more, so how can I "want" to change? How can I "want to" anything?

It would be a classic death spiral, if I were in motion anywhere. You've got to be moving to draw a spiral. "Death lump" isn't as good a metaphor, but that's closer to it. "Lump" certainly is.

It's easy to change when you want to change. No matter how big, how complex, how difficult, if you want to change, you can change.

Once you know what to change.

Once you can want.

Neither of which really describe my state right now.

And at GMT zone zero, it's already the new year. All we have to do to make it "official" in California is wait for the ball to drop.

I think Judy has a better last word than I do, so I'll let that be how I end the 2010 blog year.

Thursday, December 30, 2010

Then; now; metaphors (like we need more of 'em)

Had a wonderful chat with one of my oldest friends last night. He's not exactly "old," but I've known him for a quarter of a century (gasp), so I guess "old friend" is still appropriate.

He's working on his tenth novel -- yes, that's right, tenth -- so I figured he'd be just the person to talk to about my creativity struggles.

His advice as to approaching the creative process was surprisingly like the advice we MSers get regarding interaction with the physical world.

  • Yeah, you used to do [fill in the blank], but right now, you don't. You do something different. But even though you're used to doing things the old way, it doesn't mean that the new way has less value. That was then, this is now. This is what Eric Small said to a class of his I attended: Do the best you can with what you have. Very clearly implied was "not with what you used to have or what you wish you had."
  • Use what works, not what you think you're "supposed" to do. If, for example, sitting in front of the computer is draining, don't sit there. A notebook in the pocket enables creativity in the absence of technology, and has many, many other advantages.
  • Create something. Doesn't matter whether it's "good." It may not be good now, it may not be good for what you're hoping to do, but who knows? It may be good later. And, at worst, it keeps you "in motion," because (as Newton told us) objects at rest tend to remain at rest, but objects in motion tend to remain in motion.
  • Do your work during the time of day you work well. He said that a good hour during the time of day when he was at his best was worth a great deal "Ten hours would of course be good too," he smirked, "but one is worth it." This hearkens back to what my kyudo teacher said that his first kyudo teacher told him: "One hour of practice is one hour of practice."
  • Ask yourself "What do you want?" Then ask yourself, "What do you really want?" Then ask yourself, "No, really... what do you really, really want?" Shallow goals aren't worth fighting for (so let's take them off the table as quickly as possible) and you never want to hang your hat on the method as the goal. "I want to do X in this way"... well, if "this way" isn't available to you, it's no wonder the goal eludes you.
So, the question of course now is... now that I've been reminded of how to walk the path, am I willing to walk it--even if "walking" isn't the same sort of locomotion that I've been used to for so many years?

(No wonder that the simple act of "walking" the MS road is so challenging in so many ways... the path is littered with metaphors. Ankle-deep.)

Tuesday, December 28, 2010


Had a very interesting visit with a herbalist yesterday. His diagnostic method I can't really describe, but the essence of it can be described as "listening to what the patient's body wants to say." (Knowing what questions to ask, how to ask the questions, and how to read the answers, is of course part of the system, but at the bottom line, you'll find "listening."

I'm having a hard time finding joie de vivre, enthusiasm, and especially creativity. Actually, I'd explain the reason for not being able to find it by just plain not having any.

So, clearly, I'm hearing very clearly what I don't want. What I'm not hearing, is what I actually do want.

What do I want?

I don't know. Frankly, I feel like I don't want anything. But I wouldn't feel like I was lacking something if I didn't want something. 'Course, I don't really know what I feel like I'm lacking, either.

"What do you want?" was the question of the Shadows in Babylon 5. If you're familiar with that series, you know that most of the B5 characters had an interesting time answering that, too.

Knowing what I want will require listening in ways I'm (clearly) not currently employing.

So, I guess, the first thing I want, is... to know how to listen better. Probably, what I should want is simply to do the listening better.

In the MS biz, you take what you can get.

Saturday, December 25, 2010

Merry Christmas!

To all of us who ... let's be honest, made it through Christmas...

Merry Christmas! As Tiny Tim said, "God bless us... every one!"

This ended this year's Christmas Eve service: The premiere of my latest for organ and brass: Toccata in C "Angel's Song."

Enjoy, and a blessed Christmas and New Year to us all.

Friday, December 24, 2010

Making tea

Tuesday, I was mired in an energetic nadir.

Wednesday, I got treated, and felt better.

Thursday I was already back in the nadir. It's just a treatment reaction, I thought. Things will be better Friday.

Nope. Attitude was better, but energy was low. Very low.

So, what do I do now?

It came to me this morning, around 4:00. Something that's central to the practice of kyudo:


A lot of the mechanics of how your arms work as you draw the bow is the same as the action of spreading your arms wide (the right arm is bent only because your thumb is attached to the bow string). My teacher said, "Nobody will give you anything if your hands aren't open. You can't give anyone anything if your hands aren't open." Open and give, and only then are you able to receive.

So if I want energy, peace, creativity, and joy... I need to open my hands. Stop clutching what little I have, and instead, give what I have, no matter what it is.

First principle of the tea ceremony: Make the best cup of tea you can. Not the best cup that has ever been made, the best cup that could ever be made, but the best cup that you can make, right here, right now.

Another principle of the quieter martial arts: If you want to do a big thing well, first learn how to do a small thing well.

So that's how I get out of the energetic nadir. Embrace myself, in the state that I'm in, here and now; and offer what I have, no matter what it may be. Low energy, expectation of crappy creativity, whatever: doesn't matter.

Make the best cup of tea you can.

Wednesday, December 22, 2010

Spirit Path; Utmost Source

Another good acupuncture day.

Two interesting point names: "Utmost source" and "Spirit path."

Not even knowing precisely what they do, acupuncture-arily, they sound like what I've been looking for... because I've been feeling like I've been without them. Both of them.

I told my doctor that I feel like I've got no passion for anything, any more. I played him a recording of a recent composition, which just premiered last Sunday: an Ave Maria for mezzo, organ, and handbells. "What do you mean, no passion?" he said. "That had plenty of passion!"

Accepting him as being correct... it's not the passion that I've been used to, in the compositional process. My process in creating that was much quieter, much less "pedal to the metal" than my engagement of the work has usually been. And, I'm realizing as I type, the hugeness is different. I've always worked with things that were massive--not in size, but in power, in scope, in significance. And yet, this has hugeness, the hugeness I've always sought; but hugeness expressed quietly.

The pool of water at your feet can contain the whole moon.

But now (thanks to the MS) everything's different. I'm different. Maybe trying to work "the old way" isn't "the right way," and if that's so, it's no wonder I've been frustrating myself, trying to put new wine in old bottles, as the Good Book says.

When Seth Godin and the Bible say the same thing, best one should listen.

A significant question I'm often asked is how well I have accepted MS.

But maybe what is called for right now, is... to embrace the MS.

But, as my doctor reminds me, MS isn't a separate entity. There is no "the MS." There's nothing but me, anywhere in the picture.

So, maybe what is called for right now, is for me to embrace me. To not apply old approaches to new problems; and perhaps, first and foremost, not to call things "problems." But simply to ... embrace.

And maybe that is the first step on the Spirit Path to the Utmost Source.

Monday, December 20, 2010

Brittleness; metaphor

A new, interesting (if you can call it that) wrinkle in the MS experience.

If I am disturbed during the process of doing something... my process shatters. If I am disturbed during a creative process, I shatter.

Sunday, the walker wasn't where I expected to find it. That threw off my "getting out of the house" process and I didn't remember to take my canes to church. Which made "walking" across the chancel a very interesting (if you can call it that) experience.

When I get home, if something gets between me and the button that closes the garage door, I don't close it. Eventually, I catch the omission, but I don't like leaving it open over-long, nice though our neighborhood is.

Worst of all, if I'm finally... finally... working on music and anyone interrupts me to request that I put my attention into something other than what I'm working on, it destroys my creative moment, my creative process, eradicates whatever enjoyment I might have finally been getting from doing the work (said enjoyment being a very rare commodity nowadays), and pretty much ruins my life for days.

Kinda makes the "I'm having trouble walking" seem like not that big a deal.

I've always been a recluse by choice. I've always disliked interruptions. But now, they're a really horrible experience. And it's not about "my issues are more important that yours," it's not about "my schedule is more important than yours." Sometimes things can wait, in the big picture, some things can't. The perceived "importance" of the interruption isn't the issue. It's the interruption itself.

It seems a self-perpetuating problem. I see my acupuncturist to shore up my ability simply to deal with life. The treatment doesn't last. Which makes me less able to deal with life. Repeat.

And, to add insult to injury, my cute little wireless keyboard keeps crapping out on me as I'm typing this very entry, and my computer displays "Connection lost" at the bottom of the screen, over and over and over. And over. And over.

The pisser of it is, I think that's a metaphor for my current situation.

Of course, if I knew what was causing this disconnection, I'd stop doing it. But of course I don't see it... "connection lost," after all.

Who knew that M.S. stood for "Myriad mysterious metaphorS"?

Friday, December 17, 2010

Numbness; unattachment; Mercury

It's the last day of school of 2010. As I type this, they're having a music assembly, reprising the Big Winter Concert that showcases all the choral/instrumental performing groups.

They're doing it without me. It's the first time in a decade that I haven't been the "tech guy" manning the lights and sound for the show.

I didn't see the Wednesday night performance, I'm not seeing the Friday reprise (partly because I can't get me and the chair into a comfortable and low-chaos seating area—chaos and I, we don't get along so well any more).

And I feel ... nothing.

One might expect to feel nostalgia, for times past. Remorse, even resentment, that "they can do without me, I guess I'm not important any more." But I feel none of those. I feel nothing at all.

It's interesting, what I don't feel and about which things I don't feel. I'm looking at the precipice of "I can't walk any more," and I don't feel anything. I'm living in a state of "I can't play the organ 'right now' and maybe can't play it 'any more,'" and I don't feel anything.

But this summer, I wanted to write music. And I was sidelined by my MS experience. So I wrote nothing.

That made me sad.

It's the specificity of the desire, I think. "Walking" is kinda vague, I get around at home well enough, I have a drive-a-chair at school, my wife pushes me around in a transport chair when I need help in the world away from my drive-a-chair, so "not walking" just... is. Not playing the organ? Well, I was ready to give up weekly organ gigs a while ago, so in some ways saying farewell to that was already happening. But last summer, I wanted something very specific. I was planning on it. I was counting on it. I was looking forward to it. And I couldn't have it.

The Buddha said that attachment (as well as other things) causes suffering. Well, he was right.

I'd still like to write the piece of music that I was hoping to write over the summer—maybe that'll still happen, we'll see. I don't know if giving up wanting to write it is the correct thing to do, or that I should hold on and "tough it out" (always a questionable choice, from my point of view); I don't really own the difference between unattaching and capitulating.

Joan of Arc won by losing, maybe this is something like that.

Mercury is in retrograde, right now; a wise man told me that its lesson is that when external solutions fail, we should seek within.

Well, if anything embodies "external solutions fail," it's my journey with MS. With luck, Mercury will exit its retrograde phase with more alacrity than resolving the MS issues seems to be taking.

Sunday, December 12, 2010

Chaos is...

The MS world is an infinitely varying one. Every experience of everything, every day, is different.

Sometimes that's wonderful. I notice the microscopic changes my students are going through as they go through their fourteen-year-old growth spurts. Every bit of each of them changes. Every day. Except--they're just as nice as ever, every day. (Sometimes, the unchanging is as remarkable as the ever-changing.)

So I'm sitting right now on my front porch, waiting for the fellow who—allegedly—is coming to my house today to install my truck's hand controls, to bring an end to my non-automotively-enabled transportation-free life. An end to MS house arrest.

Except I don't know for sure if he's coming.

My driving trainer said he had talked to him, had told him to come today, sometime after noon (it's 12:45). I asked him before we parted company yesterday, "So... if I don't hear from you, it's on?" He said he'd e-mail me either way.

I haven't heard from him either.

Guys... Yeah, MS is a life of uncertainty. We should be used to it by now. I suppose I (sort of) am, it's something I have no choice but to work on every day.

But avoidable uncertainty? The uncertainty my neurology adds to my life is one thing, uncertainty that other people add to my life is another.

'Course, as far as I can tell, their lives are pretty full/over-committed/over-scheduled/beholden to things out of their control as mine has always been.

Oh well... as one of my friends who actually drives spacecraft likes to say--although he means it more mathematically, it means as much both inside and outside the mathematical context:

"Chaos is a bitch."

Wednesday, December 8, 2010


Finally got through to Hand Control Guy today. Maybe... maybe... he'll be able to do the install this Saturday. Maybe. He's trying to clear his schedule, he'll call me back when he knows.

So, maybe Saturday, if schedules can be made to work, I'll be that much closer to the end of non-automotive-based house arrest.


I had a powerful treatment at my acupuncturist's today. An attempt to rekindle the Fire that has been out for ... oh, most of this year, I think. Maybe even since The Diagnosis. The Fire that's the source of passion, of enjoyment, of creativity, of the simple love of living. The Fire that has been, for me, for the most part, simply missing.

"Great Deficiency" is the name of one of the points I got today. Yeah, having no love of living is very much a great deficiency. A pretty frakking great deficiency.

Judy's beautiful MS haiku blog had an especially lovely stanza today:

I have discovered
somewhere in my deepest self
an unforseen strength.

Strength has not been my problem. The Fire that lights the Heart... that, I need to discover. To re-discover, because that used to be the least of my problems.

Funny... the MS is simply my greatest annoyance. But it's not a problem. Not finding joy in life... that's a problem. Not even having the passion to care about not having any passion... now, that's a problem.

Monday, December 6, 2010

Cost, inescapable

This morning, I left the house full of dreams for the glories I'd accomplish this evening.

I come home completely drained.

Maybe... maybe... I'll get something I want to accomplish for me done.

Yeah, I got some work for school done... some (by my lights) pointless paperwork; a test I don't really want to give because I know everything I need to know to calculate their grades, it's not giving me new information, just a paper trail I can use to justify the grade that I, and the students, both know that they deserve. The least I can do is make it painless, both to take and to grade.

But for me? Nothing. I'm pretty much dry.

I think I'll try making lunch for tomorrow. Not fancy, but important. (I can't go to the commissary, everything they make is specifically against my non-MS-aggravating diet.)

In the MS biz, you take what you can get.

Thursday, December 2, 2010

Oh well

Quite the day, today.

I am able to kinda sorta walk, given enough walls/chairs/hand rails/helpful people to hang on, but in many ways, when I'm not walking, my legs are little more than props. Not "prop me up" props... theatrical props. When I'm not standing on them, they behave pretty much like any ventriloquist's dummy's legs. Flop 'em into a position, maybe they'll stay there.

Oh well.

I had an absolutely wonderful, wonderful afternoon with several wonderful, wonderful friends. They're very good at what they do, they're very very generous, they answered many questions; and we had many, many laughs. What a wonderful day!

If I'm lucky, I'll be able to talk to them once, maybe twice, later this week. And the next time I'll see them, will in all probability be... next October. That'll be wonderful. I'm already looking forward to it. But it's next October. And the only contact we'll have will be electronic, if anything.

Oh well.

Part of the afternoon's activities was a trip to the Museum of Jurassic Technology. In many ways, a dream come true for me: I've been trying to get some of these folks to the MJT for years, and we finally got them there, and they had the time of their lives. The museum has really come a long way since I was last there, what, twenty years ago?

But it's not really designed for wheelchair access. Just a little too tight, we can pretty much kinda sorta get around. Nearly everything is up too high for me to see it without standing up. The crowning glory was that while my eyes are not exactly "going," as the saying normally has it, and thank goodness I don't have optic neuritis, but my prescription is changing and I couldn't really read the signs that convey much of the museum's wonderfulness. So, basically, I spent the afternoon in a museum in which I couldn't see the exhibits, couldn't read the signage, and couldn't move around the building. And I couldn't make it upstairs to the tea room for the complementary afternoon tea.

Oh well.

But my friends were in hog heaven. That, at least, made me happy. In the MS biz, you take what you can get... right?

Oh well.