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.

Tuesday, November 30, 2010

Accommodation (another)

Another "should" to remember... I should go directly to bed when I get home from work, and take a nap, and recover from the depletion of the day, before I talk about anything with anyone.

Because, I think, I'm so tired at the end of the day that I don't think well, and I don't relate well; and MS being full of "againstness" on the internal side, I don't need to add to that on the external side.

We spend a lot of time seeking and working with accommodative devices--canes and walkers for pedestrian locomotion, hand controls for automotive--we (read as "I") forget that we need to accommodate our emotional/communication "locomotion" through the world.

Another completely correct and necessary, but not always welcome when it arrives, gift of MS.

Not as poetic a realization as some have been, but just as true.

Saturday, November 27, 2010


Second hand-control driving lesson today; I thought I did good, and (fortunately) so did my teacher. An hour and a half of incident-free driving, including a few freeway jaunts. Very, very tiring, mostly in mental paying-attention-to-the-world effort; but even accounting for that, very successful.

He thinks I should do at least one more lesson, but that even before that, I'm ready to call Control Installer Guy and start lining him up to finish The Great Conversion.

And then... freedom. Small freedom, but still freedom. I'll be able to drive myself to, and then home from work... which is, at the bottom line, more effort than I'm expending now (a colleague is driving me, right now); but at least I'll be able to do things like deposit checks and buy frozen pizza on the way home.

And y'know, in the MS biz, you take what you can get.

Friday, November 26, 2010

Change without progress

An interesting combination of symptoms (I guess you can call them that).

Things are better. The "numbness"/data corruption, that was the tip-off that something might be neurologically Not Right in my legs, seems like its fading away. I'm feeling parts of my legs that I haven't felt in years.

Other things are worse. I also have raging coldness in one of my feet, my motor control is degenerating, and I wonder if I'm knocking on the door of "too weak to walk."

Things are better. I actually have the feeling that I might be able to write music again.

Things are worse. I feel too tired to sit at the computer and write music; I'd rather be in bed, under the comforter, listening to Babylon 5 or Mighty Boosh or something else comforting. (I don't want to watch them, my eyes are changing prescriptions or something so much that I can still see things but focussing on screens is unpleasant, and/or not always productive.)

I often find solace in the tale of the Taoist farmer. It's hard to look at what's going on and shrug philosophically, "Who can say what's good or bad?"

This one's easy. It's both, at the same time.

One step forward, one step backwards. I am not "going nowhere," I'm progressing and retreating, simultaneously; very clearly improving, very clearly degrading. Hard to find a suitable metaphor; my wheels are spinning, but the road moves underneath me in the opposite direction. Lots of motion, but zero change in position.

Great. I'm on a treadmill; lots of effort, no forward motion. But, at least the theory goes, it makes your heart stronger. And after all, Nietzsche said that what does not destroy you makes you stronger.

Mother Theresa is credited with saying, "God never asks me to do anything I can't do. Sometimes I wish He did not have so much faith in me."


Wednesday, November 24, 2010

New prescription

Saw my neurologist/acupuncturist today. I was able to report that I'm getting some sensations back into my legs. What was the initial clue that eventually led to The Diagnosis was a weird sort-of numbness/non-information in my legs. But now, sensation is actually returning.

Control is still questionable to bad. My legs, especially my right one below the knee, are nasty, nasty cold, all the time. My right foot in particular has areas of screaming icy numbness. But I'm actually feeling my legs. Sensation is coming back!

The prescription:

Rub the legs.

The goal: Feed the legs sensation data. Give the nervous system some sensation data to deal with, to help it retrain itself and form new pathways.

Secondarily: Warm them up. Sit in hot water, for example. Do whatever warms them up and makes them feel good.

Of all the things we MSers get thrown at us... in a world of medications whose side effects hit 100% of the time but whose benefits are unknowable... in dealing with the organ system whose workings are the most elusive to any medical science, Western or Eastern...

"Rub your legs and warm them up" is one hell of a prescription.

Tuesday, November 23, 2010

Back to normal (through completely new means)

Yesterday, I had my first encounter with hand-control driving.

Weird, yes. Easy, yes (in many ways). Life-changing, by the time the "road" of instruction and machine-modification has been completely traveled... oh my, yes.

Although my first thought was, "I really should have played more video games."

There are a bunch of different styles of control devices. My trainer introduced me to one of the newer models (which he also said he liked the best, for a number of reasons). I liked it too.

It's (of course) going to take practice, as much unlearning the old habits as learning some new ones, and more instruction; but those were definitely the first steps (tire-prints? the automotive metaphor doesn't resonate as well as the pedestrian) towards returning to the sort of independence that I had enjoyed before The Disease imposed itself so sternly upon my legs.

Something as simple as "I want to go to the bank, then to the store, on the way home" is pretty small, but significant all the same. Especially when it's something you just can't do, given the current State of Things.

Next lesson is Saturday. Perhaps it'll be less exhausting doing it during the day; the first adventure at night was nice (no traffic) but scary (training-car's headlights weren't quite up to the task). But it will definitely be fun.

At least, that's the plan.

Saturday, November 20, 2010

Unexpected metaphors; new (old) therapies

Got into a bit of a snit with a friend of mine the other day. The basis of the snit was, in essence, "I said X" (friend) "Well, I heard Y" (me). I haven't quite figured out how to tell him that others in attendance corroborate my take on the discussion, not his... but the reason I bring it up is that it really does illustrate the MS experience. Something sends signal X, something receives signal Y; and if there's a "fault" to be assigned within the process, it's data corruption, not sender-not-articulating-properly or listener-not-listening properly.

Of course, I don't know if my friend will see it that way, but that's the story I'm sticking to. "Let's blame it on the noisy room" rather than "You didn't explain yourself properly, even if you think you did." Also has the advantage of perhaps being accurate; which also fits the MS metaphor, doesn't it? The Vorlons (in Babylon 5) said that "Understanding is a three-edged sword;" there's your side, my side, and the truth.

On the treatment front, I got a new formula from my new herbalist. He explained it as having three functions: clear out viral/bacterial-infection nonsense that's making my immune system go into overdrive and chew on my nervous system, directly calm my immune system, and rebuild the nervous system. Every ingredient in the mix isn't a single chemical, it's a plant. Interstingly enough, this Andrew Weil in his regular Huffington Post column lauded the superiority of complex-of-chemicals plants over single-chemical pharmaceuticals.

This kind of approach is impossible to mass-market. My formula was created for me, not for the generic MS patient. (Like such people even exist.) This kind of approach requires the healer to pay attention to my specific expression of the MS experience, and even though he has been working with people with similar disease processes for thirty years, none of his other patients have my needs, my challenges, my requirements. You can't just say "try one of these four drugs, statistics suggest that many people similar to you (we think) get some symptom reduction, sometimes. We think." My current formula is for me, to address what's happening to me right now.

How does he know it'll work? Experience, training, and the collected knowledge of five thousand years of Chinese herbal medicine. Does it always work? No, but if it misfires he adjusts the formula and, usually, it starts working.

How do you know whether [insert Big MS Chemical here] will work? Statistics tell you that it works for the aggregate, but for you? You don't know. You can't know. No one can know, it's mathematically provable to be unknowable.

And I don't get side effects. Any. Ever.

In the meantime, because I'm surrounded by medical care givers who are giving me custom care, I notice that I'm changing my approach to my students. I really, really personalize their care. I know where to start answering their questions, but I go immediately to a completely custom answer. For the person who's asking me their question, today.

And, really, the way my caregivers approach me, and the way I approach my students: a completely, 100% custom approach.

And the downside this approach, for my own care and the care of my students, rather than using the "everyone is the same, one remedy answers all problems according to this bell curve" is... ... ... ?


Monday, November 15, 2010


So, we have a "teacher's institute" day today, kids get the day off so that teachers can have those ever-so-vital meetings. Can't get enough meetings, can we?

I'm now at home. I had planned to spend the day writing music.

All I want to do is lie down and maybe sleep.

So, what's the "right" decision? Work on the music I've been wanting to work on since, oh, June, is it? That has only been barely worked on because the MS robbed me of energy and creativity?

Well, energy and creativity, right now I ain't got.

My wife said, "Do what your body wants." Honestly, starting tomorrow better rested has a certain appeal. Not working on music when I'm too tired to sit up also has a certain appeal. Leaving music unworked-on for a fifth month doesn't have that much appeal.

And I'd do something about it. If I weren't so tired.

Saturday, November 13, 2010

Hidden costs of "convenience"

So I've been on this diet for several months... no dairy (that's "no" with three underlines); no uncooked leafy greens; minimal (at most) sugar, at best two large handfuls of fruit a day.

I think that what my healer is trying to do is to lower the number of balls my immune system is trying to keep in the air, to quit throwing things at it that it wants to/has to deal with, so that it will stop fighting All Sorts Of Stuff and clear out the immunological noise, so he can figure out what's making it gnaw away at my myelin (or whatever other part of my nervous system it's gnawing at).

I was doing great until I started this school year. The school has truly wonderful food service; what they create is healthy, nutritious, and really quite good. You'd be surprised at all the vegetables they get the kids to eat.

Unfortunately for me, one of their tricks apparently is... butter.

Now, I had been trying to be good, if what they had on offer was clearly dairy laden, I said no. They'd even make me "naked burritos" with just the meat mixture, no lettuce/cheese. They were very accommodating, and generous.

But, I'm afraid, it seems they use a lot more butter than I thought they did. Which, it seems, has trashed my system.

I'm now on a "herbs every two hours until something improves" regimen. Which means, alas, no tea, since I need to keep tea clear of the herbs (they don't get along well). The upside, happily, is "no side effects" to my medication regimen. None. Never.

But this means that I'm pretty much never going to eat a most Western restaurants ever again, because they're Butter Crazy. Not really much of a loss, since I prefer Japanese to pretty much every other style; Thai and Chinese I like too, and it's very easy to be non-dairy with those. But it means that when my department at work wants to go to a restaurant, I probably can't (they like "normal" food, not the "weird" stuff I like), and when for whatever reason I have to go to a particular restaurant, finding options is going to be ... interesting.

But then again, what about the MS experience doesn't involve creative accommodation around what most people consider "normal"?

Which makes accommodation, for us... "normal."

So, in being different, we are actually... all the same.

We're all "normal."

How different would our world be if everyone realized that? Not that I'd wish MS on the world, but... its side-effects do have their advantages, do they not?

Tuesday, November 9, 2010

Hidden blessings

A few years ago, I came very close to a chance to take a Very Impressive Job in New England.

I didn't take it.

On paper, it was the job of my dreams. But for various reasons, I didn't take it.

That was before The Diagnosis.

Here I am, after The Diagnosis... I receive Cadillac care from (from the Official Western Medical Perspective) odd and questionable care givers who in fact are the best thing that could have possibly happened to me.

Temperatures are tending to the high 50's. Unlike your textbook MSer (like those even exist), I am both heat and cold sensitive. Summer makes me suffer above the waist, my legs absolutely love 100-degree heat. The approaching winter, my above-the-waist core is enjoying, and my legs are cold cold cold. They're barely working at all. I lie in the bed under a down comforter folded double, and I'm cold.

And that's with the temperature in the house at 68. I can't imagine how I could bear even to exist in New England temperatures.

And suffer though I do, I'm in Los Angeles, where "cold" is 50. Receiving some of the best medical care one could receive from anyone, anywhere.

And to get this, all I had to do was not take an on-paper Job Of My Dreams.

Amazing, how not getting what you always dreamed of can get you things that are better than you could have dreamed of.

Interesting thing, this MS.

Sunday, November 7, 2010

New realizations

A couple of things I have noticed, this week.

I think I'm going to have to ask for some additional accommodation at church. Today, I spent most of my mental effort into figuring out how not to fall over while singing the anthem, rather than executing the music. Fortunately, my ear is good enough that even on "autopilot" I can sing something in an appropriate chord, but I was missing notes (with luck, only I noticed, but still, I noticed). I'm going to need a stool; I can't use both hands on canes and hold the music and turn the pages, even with a music stand I can't hold two canes and turn the pages. The folks at church are very reasonable and more importantly, very kind, so I may be a little embarrassed by needing to ask, but it's going to be an easy fix. They'd rather have me on a stool than out of the choir.

I noticed something this week about how my teaching style has changed this year, how it has evolved within my "MS world"... I don't approach things on the physical level, "You need to color within the lines," I come to things on a "what's upstream of the problem" level ("You aren't getting this operation right because you don't know why you're picking this operation in the first place, or why the operation works. Clear those two up, and you'll get this correct.")

Self-empowerment through not through "discipline" (by that name), but by clarity and integrity of effort. Fix the problem that's upstream of what is expressing itself as "the problem," and "the problem" will go away.

Which, interestingly enough, is how my oriental-medicine practitioners are approaching MS. From the Chinese point of view, MS isn't a disease, it's just the name you westerners have given the symptoms; we're looking at what's upstream of what you call MS.

Which approach is not why I seem to be taking the "solve the problem upstream" approach. Although I think the MS itself is what's leading me down that road.

But my students are finding this road also very interesting. They're used to teachers saying "work harder" or "do it THIS way and I'll give you the A." They're not used to hearing teachers say "change the way you're thinking about this, and the problem will go away."

Do not be conformed to this world, but be transformed by the renewing of your mind.

I think I've heard that somewhere before...

Friday, November 5, 2010

Some wisdom from Thornton Wilder

From his play The Angel That Troubled the Waters. An angel who kneels by the side of a pool, which will provide healing when the waters are stirred by the angel, addresses a physician, who is himself in need of healing.

Angel says, "Draw back, physician, this moment is not for you."

The physician asks him, "Must I drag my shame... all my days more bowed than my neighbor?"

The angel replies, "Without your wound, where would your power be? It is your very remorse that makes your low voice tremble into the hearts of men. The very angels themselves cannot persuade the wretched and blundering children on earth as can one human being broken on the wheels of living. In love's service only the wounded soldiers may serve. Draw back."

This MS, that bows us more than our neighbors... is it not then a gift not just to us, but to others?

It just might be...

Wednesday, November 3, 2010

Taking time

Most of my students are away this week, on some sort of community-building outdoor-education thing. As a result, I have a lot of time free during the day.

And I am getting so much work done. Getting prepped for the rest of the semester, fixing all sorts of problems, even getting some very nice creative work done.

What a strange idea... to give someone enough room, enough time, to do work of real quality.

Well, we just can't afford to do that (I hear the voices say). We need all this stuff done. We can't just sit here and wait until you do the "quality" stuff you want to do.

So... let me get this straight. You (the Establishment) would rather have more than better. You'd rather have a lot of stuff done not very well, than have less stuff done but done really well.

And you get upset when things aren't done "properly."

Why? That's what you asked for.

Monday, November 1, 2010

Gifts that I do NOT need

MS brings many gifts. All of them you need, but many you don't want (at least at the time that they're first delivered); some of them surprise you in their wonderfulness; many of them surprise you in very quiet ways.

One "gift" that I wish I could not have anything to do with... is dealing with the insurance company.

I have lost a lot, because of MS. My ability to play the organ. My ability to play the drumset. My ability to play the piano comfortably (inability to deal with the damper pedal, another leg/foot malfunction problem). My ability to drive. A few other abilities you would really prefer that I didn't share, and I won't; but merely let it be said that those abilities--I don't have them anymore.

And losing all of those is easier to deal with than the insurance company.

"We can't process this, you didn't supply the right alphabet-soup-acronym codes. But then again, you can't supply them, your doctor has to." But this thing I'm requesting reimbursement for, I didn't get from my doctor. He has nothing to do with it. "Oh. Well, you'll need your doctor to send us the codes." Repeat the previous two sentences for about a half an hour. Finally, "Oh! Then you'll want these other people to send us a form with the right codes." Great. Success. I call said other people, and ask them about said form. They know nothing about it. "We don't send those in," they say. "And that thing you bought? There's no code for it, so we can't submit it anyway."

And the insurers probably don't cover it anyway. And, since they don't feel like paying for it, they're also not going to apply it to my deductible. Why skip up a chance to screw you TWICE over the same claim?

So, anyway you look at it... I'm hosed, it would seem. You get nowhere if the forms aren't filled out (because, it would seem, they're incapable of reading English, only numbers), if the forms can't be filled out because the charge codes don't exist, you're completely out of luck. They don't know you, but they know that you shouldn't receive that treatment; or it's OK for you to receive that treatment but not from that person... whom they also don't know.

I am suddenly reminded of Matthew 25, 42-46:

“I was hungry and you gave me no food, I was thirsty and you gave me nothing to drink, I was a stranger and you did not welcome me, naked and you did not give me clothing, sick and in prison and you did not visit me.” Then they also will answer, “Lord, when was it that we saw you hungry or thirsty or a stranger or naked or sick or in prison, and did not take care of you?” Then he will answer them, “Truly I tell you, just as you did not do it to one of the least of these, you did not do it to me.” And these will go away into eternal punishment, but the righteous into eternal life.

The Good Book also says, "Vengeance is mine, saith the Lord." Well, as satisfying as it might be, watching them wracked with divine vengeance won't make me feel better; I would trade their stint in everlasting perdition, gladly and in less than a second, for some compassion and decent, intelligent service.

Which, y'know, in this day and age, really shouldn't be that hard to get.

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.

Thursday, September 30, 2010


A too-too-long day. Concluded by a not-that-necessary and, in my overfilled schedule, intrusive meeting, at which some work was dumped in my lap that there was really no reason that I be the one tasked to do it, except that the dump-er didn't feel like doing it.

And then I was told that I had to be the one who had to send the e-mail saying that (even though he was the one who had promised my delivering on a deadline without checking my schedule to see if I was even available) we'd miss the deadline, we'd submit The Thing later. And oh yeah, we expect that the recipient wouldn't be looking at it until at least the day after the promised-but-unattainable deadline, if not later.

Greeting me when I finally got home (and sent said e-mail) was this lovely haiku in Judy's blog:

It may seem a stretch
to give when one feels used up.
It replenishes.

I'm really, really trying to embody the truth in that. I'm not doing so well... what I really want to do is tell The Guy who wants me to do work that is his, that isn't mine, that Thursday and Friday are my most taxing days of the week and maybe the guy with MS who "doesn't feel like dealing with this" has a slightly different reason for not wanting to deal with it than you do, and maybe you can do your own damned work, especially considering that (on this particular project) I've already done vastly greater amounts of work than you have?

But fortunately, I'm not so exhausted as to think that'd do any good. Perhaps tomorrow, I can contemplate other options, to give and thus be replenished. Momentarily satisfying that venting my spleen might be.

But, as Professor Farnsworth of Futurama said, "A man can dream."

Saturday, September 25, 2010

Liberation paradox

My repaired, transformed truck is finally ready for me to use. Well, almost ready, they didn't quite fix everything, something not related to the repairs got un-repaired (easy to fix, once you get at the connector that clearly has been mis=connected; something else needs to be looked into... but it's very easy to drive, now that it's automatic rather than manual.

So I'm so pleased to have my truck and my vehicular independence, and I think, Finally... now, if I want to go to the store and get some chips or a snack or dinner or anything... finally, I can.

And then I think, But then I'll have to walk around the store.

And walking... that's not good. It's certainly not fun. Or easy. Or pleasant.

So, I can get there, but I don't want to do what needs doing (walking around the store) once I get there.

So, being free to go anywhere, any time I want... is freedom to suffer.

Oh well.

I am, though, still going to get hand controls. Truck is much easier to drive now, and I can still operate it safely and successfully, but the nerves in my legs are sending so much "static" that it's only a matter of time before foot-operated controls won't be accessible.

And some stores have those cute little electric goodies you can drive around the store in... I've used them twice now, and they're a godsend.

Blessings come in very interesting flavors.

Wednesday, September 22, 2010

Illusions of wellness

After sharing my last blog post with you, some very nice people have shared with me some similar experiences.

Judy, who blogs in haiku, expresses it beautifully:

I surface for air
and pretend I am okay.
Others believe me.

I talked to another MSer today, who said, "People tell me that I 'look so healthy!' I just got a new MRI. I've got spots everywhere! I am NOT healthy!"

Daily, I have to interact with a lot of people, who are of a wide range of age levels, and who are of a wide range of ability to... let's be honest, to deal with weird shit. I try to keep my spirits up and positive for them. For me also, yes, of course; but also for them. Why should they suffer if I'm suffering? And really, my suffering is so specific, they couldn't help me if they tried. And frankly, I enjoy smiling and laughing. Especially laughing right in the face of The Disease. That's fun. And satisfying.

But, it was just as I suspected: it's only now that I'm in the wheelchair that people really understand that no, they need to cut me some slack when I ask for it. I don't ask for it much, I barely ask for it at all; but when I do, it's because I need it. And I have to say, the tension level has dropped somewhat, in my dealings with my workplace. I will admit, I'm a lot calmer now than I used to be (a lot of causes, but I must admit that The Disease is one of them), and of course (dare I say, DUH) the calmness really helps. But the wheelchair has made people take me and my predicament more seriously.

I'm sorry that's what it took to get my friends (air quotes? "Friends?" At least, my co-workers) to be more respectful of my needs.

I'm sorry that's what it takes for ANYONE to be more respectful of someone else's needs. That to be respected, people need to be VISIBLY, physically impaired. That simply being emotionally impaired, being spiritually in need, somehow isn't enough. You can have a broken heart or a broken spirit, but you won't get any slack unless they see a broken leg.

Another interesting gift of MS... this particular lesson.

Monday, September 20, 2010

Interesting consequences

Details are deleted to protect the... well, for now, let's call them innocent. And they don't really matter, you'll get the idea pretty quickly.

I got an e-mail today from [family member] expressing disappointment and, actually, rage, that I had neglected to do [something] for [another family member], and approximating the words of the e-mail, if I was as assiduous in expressing generosity towards my family as I was towards my students, well, maybe then I'd deserve to live.

Or something like that.

So, I sent back actually quite a calm reply. I said that I understood the sentiment, but let me tell you what's been going on on my end.

And then I described The Current Situation, in detail. I can barely walk. I now use a motorized wheelchair at school and a walker (when I can walk) that converts to a wheelchair (when I can't). I don't have a car 'cause it's in the shop, replacing the manual transmission that I can no longer control because I can no longer control my left foot. And even then, the way the other foot is "working," I may not be able to drive it until I get some hand controls installed. Our other car has been in the shop for quite some time too, we only get it out on furlough for a drive to the doctor on Wednesday. Did I mention that I had to get new glasses to use computers, because my eyes don't like to focus on the same spot at the same time, without optical assistance? And quite a few more points, as to why I'm basically trapped either at work or at home, and just "popping out to do x, y, or z" simply isn't possible.

I wonder what [family member] will think, when that note arrives. I wasn't cruel or vindictive, but I pulled no punches; because, after all, neither did [family member].

I haven't made a practice of contacting family to tell them about how things no longer work particularly well. Why depress them? Of course, since they thought everything was fine, it's understandable how they might ascribe "not doing things" to lassitude, which (I gotta admit) I've got down to a science.

But by not dowsing them in depression, I'm now dowsed in depression, having to deal with [family member's] anger that's based, at least in part, upon misinterpretation of current situation, caused simply by ignorance.

So, in being nice to them, I somehow enabled them to misunderstand and lash out at me.

Great. So... instead, I should make them suffer so I don't have to suffer?

I refuse to believe that's how it works.

But, like all things MS, it is kinda funny. Darkly funny, as ever.. but still, kinda funny.

Saturday, September 18, 2010


Hmm, let's see... quick status update: Attitude, great. Energy, varies. Walking, awful.

I had to use one of those little motorized carts at the supermarket the other day. It was fun, the most fun I've had in a market in weeks (months?) because there was no suffering, struggling on my feet from aisle to aisle. Getting the goods into the car, and then from the car to the house... thank God for my wife. It'd probably have taken me at least an hour to do it myself.

I did the dishes this morning, and had to sit down to rest twice during the process; the first time I had to take a break, I was quite literally bent double as I hobbled to the chair to sit down and rest.

As I'm watching my locomotor (and other motor) abilities drizzling away, I'm thinking... now, which of us will this not happen to? We're all on the same road, on which we watch things we used to do float away on the river of memory... we just walk it (or hobble it, or wheel it) on our own schedule.

In one particularly tenderly-told story, Neil Gaiman's character Death comes to "collect" some obscure sort-of-superhuman character who had been given an unusually long life: several hundred year's worth. He protests when she comes to get him, saying that it wasn't fair, he was supposed to have more time.

"It is fair," she told him. "You got precisely what everyone else gets."

"A lifetime."

So, my walking time may be ending (for now, at least; MS being what MS is, it might--or might not--come back, who knows?), but I certainly don't feel cheated, or anything like that. After all, I get what everyone gets. You get to use it... for a while. And then it goes, when it goes.

And boy, I really did enjoy it.

But frankly, I got enough to do right now, keeping myself upright when I do walk. I have not the time, energy, or interest in bemoaning my loss.

And that is a very interesting gift of MS.

Wednesday, September 15, 2010

Report card

I saw my MD / neurologist / acupuncturist today; the usual weekly appointment.

We had a nice talk, as always; much of the appointment is usually dedicated to what some people would call a "dharma talk;" sometimes I give him orchestration advice (we have a wonderful mutual-support relationship).

He was very pleased. He said that everything about me was just wonderful. Attitude, approach to The Disease and what it's putting me through, acceptance of The Disease and the life I'm leading with it... everything was good.

Except my legs. Which are doing very, very poorly.

Oh well. Quality of life, that's all anyone can have (MS or not) and having that, I'm happy.

We talked about my weight loss (I'm down to under 160, if I can trust the bathroom scale), that it was OK if I was OK with it; talked about proper hydration (I need to drink a lot more water, even if it does mean more bathroom trips... oh well, just another thing to get used to, and people who are properly hydrated, MS or not, need to make plenty of bathroom trips).

I asked him, "So, about my legs? What can I do for them beyond... 'do what you can'?"

He said "That's pretty much it."

Well, if I do that... I'm doing fine.

And really, in the greater scheme of things, if you do what you can... MS or not, by definition, you're doing what you can.

And if you really are doing what you can... you're doing fine.

Tuesday, September 14, 2010

Denial has MANY flavors

The common image of denial is a brute-force collision with the easily observable: "That didn't just happen!" "That's not true!"

Unwillingness to confront is another well-understood version of denial: "I don't want to deal with that!" "Maybe if I ignore it, it'll go away."

Currently, I'm dealing with a much quieter, seemingly noble version: "Dammit, I don't want to use the wheelchair, I want to walk there myself."... Even when evidence suggests that "walking there myself" isn't doing me any good; that it might be a bad idea, not a strength- or (God forbid) character-building one.

And the question I'm starting to feel tugging at my sleeve is, "Why are you fighting like this?"

So I drive the wheelchair into the bathroom instead of parking it outside and walking in. So I have my friend pick me up and drop me off in front of the school instead of parking across the street and then struggling across, almost making it across before the signal changes. Which, in that neighborhood, might not be that good an idea, the drivers in that part of the world aren't at all pedestrian-friendly (or even pedestrian-aware).

Another friend told me today, "You're not crossing the street any more. When you get your car out of the shop, park it near the driveway, and I'll park it for you."

He can tell how much trouble I'm having crossing the street... why can't I--who's actually the one living through said problems?

Denial is an interesting beast. Subtle denial is the most invidious.

Why am I fighting?

Honestly, I don't know.

Saturday, September 11, 2010

Cost; pride; listening

I went to LA's Chinatown today, to have lunch with some college friends. After lunch, we went to one of the big markets to get some tea.

Except it was three blocks away from the lunch restaurant.

I don't know why, but when the conversation drifted to "Shall we go?" I said, "Yes... if you push me."

And I was glad that I did. I was wheeled three blocks, by the unbelievably generous (in both spirit and strength) husband of one of our college friends. And it was a good thing that I had asked for help, because I never would have made it that far, walking.

Later that afternoon, my wife and I went to a local market that we had never visited before... and should have, because it was wonderful. (And we'll be doing as much shopping there as we can, in the future.) I didn't ask her to push me around, I walked around it (using my walker).

And that cost me more than being pushed three blocks through Chinatown in the midday sun.

At the market, I was chatting with the lady in front of us in line, about wanting to use the rollator as a walker rather than a wheelchair, and she said, "Pride never helps. Pride only hurts."

And yeah, I don't want to ask my wife to push me around because I don't want to impose upon her any more than I (and The Disease) already do, and I hadn't thought of my "dammit, I want to walk" sentiments as pride, exactly, but...

When words with that directness and clarity simply arrive in your lap... the Universe is speaking to you.

When the Universe speaks to you... best you should listen.

So... best I should listen.

Wednesday, September 8, 2010

First day

First day of school, today. Taught one class, said hello to some of my student friends, though not as many as I'd have liked to, spent most of the day in my cave, fighting with technology.

Didn't really "reconnect" to the institution. I teach lots of classes tomorrow, with barely any time available to farkel around with the machinery, so... it should be more fun.

Kids asked what happened, why I had the wheelchair. "I've got bad wiring," I told them. "Neurological bullshit." Which, y'know, really is 100% true.

They took it really well. (Helped that I smiled and joked a lot when I told them.) It's an electric wheelchair, controlled by a joystick; I called it "Playing a video game, except with real consequences." Everybody laughed at that.

Walking is a lot of trouble. My first thoughts were that I could drive the chair to the restroom and then walk in... only took a couple of times to show me that no, I'm driving in, and probably driving in to the handicapped stall. A tiny bit weird, this particular change, but it doesn't hurt. (As much as falling would, at least.) We'll see how well the walking goes tomorrow when I have to do it in front of the class.

The whole "we're back to school" really hasn't hit me, yet. We'll see how I feel after six periods of instructing 9th graders, tomorrow.

Which, I hope, I can make it through.

Monday, September 6, 2010

So... tomorrow...

The summer is over. A summer of self-sustaining depletion, disappointment, wishes not fulfilled, hopes and goals not achieved; a summer of "peak experience," of blissful, blessed clarity, of liberation... summer is over.

Tomorrow is not exactly the "first" day of school, it's sort of a "day Zero," where the kids return to get their books, new kids get shown around campus and figure out how to open their lockers, new friends start to be made, there's a party. A fun day. At least, that's the idea.

My walking is going south, fast. One of my knees likes to hyperextend backwards and lock, and that makes me (almost) fall... to come too close to "actually fall." So, I'll be spending most of the day, if not seated in my classroom, seated in a motorized wheelchair. One of my projects tomorrow is to figure out how to get into and out of my classroom, and how much time it'll take to make a bathroom "run" (not exactly the most apropos term, but you know what I mean).

This is the high school I went to. I was there from 1970 to 1978, teaching from '85 to '90, teaching again from 2000 to this year, 2010. And that's not even counting the stuff I did with them when I wasn't there full time. Twenty three years... and I'm fifty, this year. Nearly half my life, I've been there. And now I'm there in a wheelchair.

And I don't feel weird, or strange, or anything, because of the chair. Logistically, I wonder how I'm going to do certain things, but emotionally... it's not even on the radar. Frankly, I'm grateful for the device, because walking is such an unpleasant task, nowadays. The last time I was trundling around in the chair, it made me ... happy.

As my doctor said one day, in an homage to the Grateful Dead, "What a long, strange trip it is."

Saturday, September 4, 2010

Wishes (be careful)

One of the things I used to say to myself--no: to others--shortly after The Diagnosis, to reassure me (them) about the world of possibilities that still stretch before me, was

"As a composer, as a writer: as long as I can still use the computer or a pencil and paper, I'm completely unaffected. But a conductor, in a wheelchair? That, I can exploit."

I still think that's true. Very true. All of it.

But, today... today, now I own a wheelchair. A rollator that doubles as a transport chair, not a big-wheel-pilot-yourself wheelchair, but... I own a wheelchair.

And really, I didn't really "wish" for it. Really, I didn't.

But still... be careful, formal wish or no, what you say to The Universe.

You never know when it may be listening.

Or, as one of my Science of Mind friend's T-shirts said:

Thoughts become things. Make them good ones.