Monday, August 31, 2009

Uptown/Downtown. Again.

A few days ago, life was simply wonderful. Music got written, music that has refused to let itself be written all summer. Saturday I drove to the West Side for what would become one of my best ever chiropractic experiences, I got something adjusted that hasn't been adjusted in quite literally years, drove through traffic on the way home and felt fabulous.

I felt so good that I braved the heat to go out and get a haircut, and the sight of the brushfires (I'm sure you've heard about them) was so unbelievable, I parked the car, walked the better part of a mile in 100-at-least degree heat, and took pictures. And enjoyed it. The walking was rougher than I would have liked, but my legs loved the heat. And the sight was amazing, it was worth the effort to capture it:

Yesterday, life was simply wonderful. A little hard to walk at the mall when we went to see Ponyo (which film I recommend enthusiastically), but we actually had dinner and a movie just like normal people, and it was utterly delightful.

And now, today... things are bad. Things are very, very bad. Walking --oh, I can still walk, but the walk:totter ratio is what's bad. Whatever has gone wrong started going wrong last night: just couldn't sleep, tried a little sake to calm my nerves (usually works) but that chewed up my digestion so I had both insomnia and dispepsia. Nothing like a middle-of-the-night twofer...

Haven't been able to bring myself to the studio today to work on the music... I'll give it my best shot tonight, I don't have that far to go on this project and then I'm done, but still, I'm not sure it's going to happen tonight.

I read a post from a fellow MS'er about her first experiences with a new (to her) injectable medication, Copaxone. This one allegedly has no side effects (which my doctor disputes, having been on it himself for three years and then quit because of the side effects) but it does require daily injections; many of the other medications are only once a week. And of course, for your convenience, you have to shoot yourself in a different place each time. My heart goes out to her, but... I couldn't finish reading her journal, it tore me up horribly to read about what she was going through. I could feel my insides shredding themselves before I had made it a third of the way through her narrative; I'm sure I'm going to have some especially nasty needlings to get back to what passes for "normal."

I really wish I knew what was up with this "uptown/downtown" stuff. (For those of you not up on your thirty-plus-year-old drug lingo, "uptown/downtown" refers to the effect you get when you mix stimulants and depressants.) One day, I can't walk well but I don't care because I feel so good, I can write music, I still have all the MS issues but it just doesn't matter because life is so damned good. Another day, I have no energy, no stamina...I'm not depressed, not in the least, but when lying in the corner until you quietly starved to death was equally acceptable as an option as a nice quiet cup of tea and fruit in a comfy chair... well, something's just not right.

But I could have told you that already.

Ah, but those few good days... they were really, really, really good. It's been a while since I've had such good days; perhaps good days like those will return. There's always hope.

Tomorrow, dentistry (a minor cavity, should be reasonably easy to deal with) and then a visit to my local acupuncturist while my main provider is on vacation. I really like the local lady, and not just because she's a fifteen- rather than a fifty-minute drive away. She's quite wonderful, and I think she'll be just the ticket to put me back together.

For another day or two.

Thursday, August 27, 2009

Well, THERE'S your problem

A very interesting day, yesterday.

Had quite the talk with my doctor/acupuncturist about what's up with me being stuck in the "stuck" state.

He says, "I don't think you really know how to live with MS yet."

My response, pretty much verbatim: "Well, you could just put the period after the word 'live,' but... yeah. You're right."

As Mythbusters's Adam Savage so eloquently says (usually while pointing to an object that has just spectacularly exploded), "Well, there's your problem."

It's certainly easy and glib to say, "Well, that's the challenge before all of us, isn't it?" But clearly, I no longer have the luxury to sit back and luxuriate in the balm of glib answers.

I've often said that MS was the human condition, just writ so large that we couldn't ignore it. Well, it seems, I'm correct. And I can no longer sit back and luxuriate in the balm of a glib aphorism.

So, I guess, I need to learn to live.

Oh yeah, and live with MS, while I'm at it.

Well then... OK.

Not much else to say, at this point, besides "OK."

Monday, August 24, 2009

Reasonable on paper

Lumpy, droopy, or both ... those pretty well sum up the last few days. I'm sure I'm blocked again; I really, really, wish I knew what was setting this off and if I did, you can be damned sure I'd quit doing it. Immediately. My doctor said once that energy blocks weren't a problem in and of themselves, that they were symptoms of something that was generating the block condition; so, unblock your life, the blocks should go away in and of themselves.

Seems reasonable on paper, at least.

I'm having a horrible time just sitting down to work on my current composition commission... for some reason, I keep getting called away by some sort of not-that-interesting representative from "life's little housekeeping chores," and somehow whatever it is I need to do takes up the entire frakking day; and/or by the end of the chore, I have no energy/creativity/anything. I did enough of said chores today that I shouldn't have to do a single one of them tomorrow, or at least that was the plan... we'll see what happens. I still have hope that I'll get it done within the time frame that I had originally planned on, which was a little ambitious but--at least in my pre-MS days--not at all unreasonable. That's my hope, at least.

Seemed reasonable on paper...

But there is some good news. A couple of days ago, I got some really good work done on the commission piece, some really nice stuff, so at least it's moving forward... and best of all, on Sunday I played the organ at a church service, and the Hellerwork has really loosened up my legs and now, finally, there's hope that organ performance isn't a thing of the past. Yes (or should I say, "hell yes") I need to put in some serious get-back-into-practice work, but at least now I can really feel like there's hope, that I really can still play the organ. Maybe not as well, but the organ can still be in my life. And that's a great relief.

Now if we can figure out why I have zero stamina and creativity, and (even more importantly) move past that, so that composition can still be a part of my life.

Hope is part of the substance from which the universe was created. There's always hope.

At least, that's the way I've always thought it worked.

It seems reasonable on paper, at least.

Thursday, August 20, 2009


Had another session of Hellerwork today. Hellerwork is a precision deep-tissue massage; depending on where you need the work and how badly you need it, what it feels like ranges between good, "hurts real good," hurts, and really hurts (that last, usually not for too awful long). I think I'm getting away with not suffering too much because I had already sweat plenty of blood, sweat, and tears when I got Rolfed. (Now, that was an experience. But that's another story.) And I have a real gold-standard bodyworker, and that helps a lot.

This kind of massage really loosens up your body and improves how pretty much everything works. What's especially interesting in the MS context is that it confronts your nervous system with an immediate need to rejigger the way it handles the way you move--in my case, since walking was impacted, it's making me completely relearn walking. All at once. Very, very quickly.

I can almost hear my nervous system recircuiting itself. It's very strange. But it is, if nothing else... interesting.

Many martial arts encourage the practitioner to develop what they call "beginner's mind," where even a master approaches study with the open, fresh, eager innocent clarity as a rank beginner. Thanks to the Hellerwork, I'm going to have to relearn kyudo, playing the organ, and walking.

I'm not sure this what "cultivate beginner's mind" intended to get you to confront. But that's where I am, right now. And it certainly is, if nothing else... interesting.

Monday, August 17, 2009

Blocked again, I think

I've been trying for days to work on my commission, and it's just not working. Neither is anything else, interfacing-with-life-wise. I think I'm blocked again. Actually, I think I was blocked the afternoon of my last treatment. Which means I was unblocked for uh... four hours?

Back to mired face down in the dirt, it would seem.

Part of the mire was caused by dealing with electronica first thing of the day, and getting sucked into the internet. It's not exactly "theraputic," but the reason I do so much of it is that it's just about all I can deal with doing.

We'll see how long I can stay off it tomorrow. Maybe if I write music in the morning instead of e-mail, things will go a little better... we'll see.

I made a quiche tonight. Well, at least something productive got done. Breakfast for the week is ready to go!

So, blocked or not... not a total loss, eh?

Sunday, August 16, 2009

Comedy (unplanned)

Fresh air is just wonderful.

The summer's killing heat seems to have passed. We still get warm in the afternoons, but here it is noon, and we're still ventilating with open windows rather than A/C. I'm sorry I can't get a lot of fresh air moving through my composition studio; I have a skylight that opens, but the only window is (a) taken up by the A/C which is not moving, ever, it's just too important; but even if it did move, (b) the window it's in opens up into the "garage": technically a covered carport, but there's no source of fresh air except the garage door, which I don't think leaving open for ventilation for hours on end is exactly prudent, nice though our neighborhood is.

Got good work done on the commission yesterday, hope to get more done today. (Gonna get started in just a few minutes. Really. Well, maybe lunch first. But then, real soon. Really.)

MS symptoms have reduced from "massively inconvenient" to "inconvenient," which I definitely take to be an improvement. I don't think I'd call it a "remission" in the spirit of "relapsing/remitting," but I'm not into that label anyway. But physically, today, things are better.

Had a couple of unintentionally slapstick moments over the last few days... For example, I was sitting in one place in a not very good seat for too long, and nearly fell over when I tried to get up because my legs had fallen asleep--which phenomenon provides its own challenges, before we even get to the MS-induced numbness, leaden-limbness, and poor proprioception. The throw rug should have been called a "slip rug"... I think you can envision a spectacular "Homer Simpson"-grade prat fall without further description. (Fortunately, for me it was only a near prat fall. But somehow, that just increased the comedy.)

But, since my attitude towards all these "MS Moments" is usually nothing more weighty than "Well, that's inconvenient," it does make riding such moments out surprisingly easy, even considering the desperate Scooby-Doo's-flying-feet-style scrambling that they often entail.

And I've got to admit, these MSM's can be pretty funny, in an twisted-sitcom kinda way. If I ever wanted to go into stand-up comedy, you know where I'd be getting my material. But as they often say in the humor business, "You can't write stuff like that!"

Thursday, August 13, 2009

Old solutions, current problems

We in the MS community have a ... different... relationship with insurance companies than many of the people I hear expressing their opinions about the various reform plans that are in development. A lot of plans are on the table, but none of them is currently a clear favorite.

I have a suggestion: a simple solution, an old solution, from many, many years ago.

Many years ago, in China, you paid your doctor to keep you well. You paid your doctor only as long as you were well.

If you got sick, it meant that your doctor had failed his primary job (to keep you healthy). You didn't have to pay your doctor again until he brought you out of sickness back to health.

There we go. That's the solution.

Wouldn't the state of health in America be radically different, if the medical establishment put its energy into keeping people out of sickness, because when you dropped out of health into disease, you didn't have to pay your doctor anything?

Now that's free-market motivation.

Wednesday, August 12, 2009


I've gotten into the habit of talking about the MS as though it were a conscious entity. "The MS is pushing back at me" or "The MS is unhappy today."

My doctor told me not to talk about the MS as though it had a separate existence. He had an excellent, eloquent, and profound explanation for why... which, sadly, I can't reproduce for you right now. But his prohibition, at least, I remember, and I pass it along to you.

Many of our fellow MS bloggers have been kind enough to share their treatment regimen--often DMDs and steroids, none of which I'm using. In case anyone's interested, here's what's keeping me on my feet:
  1. Classical 5-element acupuncture. (You can't just go to someone whose shingle reads "acupuncture," there are a lot of different schools of treatment, and by my lights, this one's the best.)
  2. Medical qi-gong, sort of an "acupuncture without needles."
  3. Occasional visits, as needed, to a Chinese herbalist.

    The most interesting thing about these first three treatment methods is that they don't recognize MS as a disease; they think of it as a set of symptoms, that the West has lumped together and given a name. They're treating what's upstream of the MS.

  4. Bodywork, to unkink the kinks that life and neurological issues have put into the body. (This summer I'm getting Hellerwork, but I'll be replacing that with shiatsu during the school year.)
  5. Iyengar yoga, the most recent addition to the treatment regimen. I wish I could take it from Eric Small, who does teach sort of in the area, but I can't get to where he teaches and back to work in time. Oh well, the guy who's teaching the sessions I've been taking is very compassionate and quite well informed, and that's more than good enough for me.
  6. Muyoshingetsu-ryu kyudo (this latter has been allowed to fall off the list for far too long because walking and standing have been really uncomfortable, and archery practice begins with walking to the shooting line and then standing there; but with the passing of summer and the last few acupuncture treatments, that discomfort is passing so I can get back to my archery practice). For those of you following along at home, your spiritual practice of choice can be easily substituted, if Shinto archery doesn't appeal to you.
So there you go. I'm very lucky to have such Cadillac care available here in Southern California, and an employer who is willing to adjust my schedule so I can get away from work early enough to miss hellish afternoon-rush-hour traffic on my freeway commute to get my weekly acupuncture treatment (administered by my MD, who's also a board-certified neurologist--you can't beat that for MS care).

Of course, insurance pays for next to nothing. Don't talk to me about whether insurance needs reform... but that, definitely, is another story.

Monday, August 10, 2009


Probably the most notable thing in my life right now is that the "I hate walking" has subsided. I'm still unsteady, I still totter into walls on occasion, but whatever it was that made walking really unpleasant has gone away. Perhaps it is fading as the summer is fading... I don't know that it's exactly tied to the heat; southern California having the variable and usually high-temperature weather that it does, it will be interesting to see whether I get the "I hate to walkies" in hot weather, or in the Chinese-medicine Fire season only.

I did get a lot of "gotta get this crap taken care of" items handled today. I still have a few more, I have at least one longer-than-I'd-like car trip to pick up studio equipment, and some last bits of move-to-new-computer to handle, but these are getting easier too. I can't quite clear as much to-do as I'd like, or as I used to, but at least I'm clearing things.

Just got a commission to do a 50th anniversary piece for a church in Colorado, the official inaugural work for the New Studio. I got some (read "less than I'd like but at least it's a start") done yesterday, but at least I have an idea of where I want to take it. Tomorrow's dedicated to cranking on it; it'll be easier to work on it once it's really rolling. I really, really want to get it done by the end of this month. I have too many things planned for me over the next few days (at least some of them are supposed to be fun and/or good for me) but with luck, I'll start building steam.

So that's that. Just slightly over a month before school starts again, the first day of instruction is 9/15. Right now, my stamina's not quite up for it, but there's a month to go. And I usually get a good boost of energy from Autumn itself, with luck that'll keep me going.

So, right now, all signs point to... progress.

(And just to close the loop on my last posting... Spamalot was great!)

Friday, August 7, 2009

Fun, finally

Such a nice day today. Finally.

Fruit fresh from yesterday's farmer's market for breakfast, in the back yard.

Iyengar yoga next; and never let it be said that just because it lets you use things like chairs and bolsters that it isn't extremely powerful stuff (we all got our asses kicked, most gently and lovingly, namaste).

Fresh from my yoga buzz I went to a qi gong treatment, and for the first time after many months of energy basically refusing to move, today the doctor told me that it was willing to move, and that it moved very nicely. I could feel it cooperating, and walking to the parking lot afterwards, I could really feel life trying to return to my legs--especially the right one, which is the worse of the two.

I'm still pretty unsteady of course, I still careen into the wall a lot; but leg weakness and vague pain and all notwithstanding, I actually haven't minded walking this evening. I don't even remember when the last time was when I didn't mind walking. (Oops, yes I do: it was after a really good shiatsu treatment. Those work really well for me, I really should do more of them...)

Good thing that I'm feeling better, because I just got a music commission, and I need to start cranking on it very, very soon. Yesterday, really, but tomorrow will be soon enough, if I actually start putting notes on the page rather than just thinking about it. It's for a church's 50th anniversary, "Jubilee" they're calling the event. It's going to be fun, writing for that...

Fun. In a word, that's what's been missing from my life, most of all. Well, I get to write for fifty-plus voice choir, organ, handbells, and brass quintet. I get to make the floor shake and the veil between the seen and the unseen rip open.

That is definitely fun.

Oh, and also, this Sunday: Spamalot! That's definitely going to be fun (or at least, that's the idea).

Camelot... it is a silly place.

Wednesday, August 5, 2009

New Prescription

A real zinger of an acupuncturing today. Two nasty blocks (fortunately doc was especially adept on the second block when he hit III-1, "Bright Eyes," although I can still tell that I was needled there earlier today), some other powerful points.

(A small aside: I notice a lot of my MS-blogging colleagues muse about their injectables, and the rocky journey their DMDs take them on. I'm not on those, so I talk about acupuncture points. Different pokes for different folks, as it were.)

Most important, though, was our discussion about being a little more insistent when necessary about my medical needs, especially viz-a-viz requesting accommodations from work--for example, physical therapy is more important than meetings I don't really need to attend except to make other people feel like I'm participating. (Two things people don't really understand at work: sometimes what few medical accommodations I ask for need to taken a little more seriously; and I spent thirty years of my life as a technical writer whose job it was to figure out undocumented software and explain it to others, when I say I don't need to attend a canned "training" it's not snootiness, it's that I can train myself faster and more efficiently than the trainers can, thank you very much, so don't take it personally if I'd rather go to physical therapy than software training. And oh yeah, see above, "what few medical accommodations I ask for need to be taken a little more seriously.")

But what really struck a chord with me was him passing along what his teacher always said to him: "Take care of yourself, my son." Taking care of myself is something I really need to be better at. It's not just "sit down when you need to sit down," it's "Do things for yourself that heal yourself, even if it's something small and simple."

So I've taken the news applications (like Huffington Post) off my iPhone; I don't need to read endless stories about people talking s**t about each other, I've got far, far better things to spend my time on. I listened to brand new I've-never-heard-=it music the other day, for the first time in a long time, just listened; it was wonderful.

I have a lot of things I need to do, and I have things that I actually need to do. Some of them are big, but many of them are small and simple.

I need to actively, intentionally, take care of me.

I really don't know why I find that so hard...

Tuesday, August 4, 2009


Today I've been teetering between " Yeah, I definitely feel like trying x/y/z" and "Oh dear, this isn't good, better sit down" way too much. Way too much. I can also tell that my adaptation to the minor ripples in the Ocean of Reality is also not so good right now.

So, what makes me feel better?
  • Moving around or not moving around?
  • Going outside or staying in the air conditioning?
  • Actually doing something, or refraining from doing things?
I can't tell. "All of the above," "some of the above, sometimes," and "none of the above," depending.

One thing I am sure of, that the computer is definitely not high on the list of "makes me feel better." Which is inconvenient, since I accomplish an awful lot with it. It does waste a lot of my time, and that's a whole 'nuther matter, but staying out of the spray of electrons is definitely better for my health and attitude, I think. And that's completely separate from what I have to deal with in the Real World when I interface with it via e-mail; many of those things are just silly minor irritants, and frankly I could do just as well without them, but right now they're not sapping me that much.

I don't know how I'd describe my "attitude" right now. I don't think I have a "bad attitude," I'm not depressed, or feeling sorry for myself, or in terror about the future, or anything like that. I will confess to being a little concerned about how I'm going to deal with a high school full of teenagers and the sometimes-a-little-too-challenging adults that go with them, but it's not a cloud hanging over me. However, I'm not exactly suffused with "good attitude" either.

If there's such thing as a "meh" attitude, I guess that's about where I'm at right now.

I really, really want to figure out what I have to do to stir the pot and leave this all stuck-in-the-dirt behind me, and move ahead, gamey legs and all.

"Be transformed by the renewing of your mind," the Good Book says. I know that somewhere, I know what I have to do. The answer is in front of me, if I could only see it.

So that's the current project.

Sunday, August 2, 2009

What's the hurry?

I had my first experience with Hellerwork a couple of weeks ago. I'm going for another "dose" tomorrow. I hadn't really felt its impact until the day after my last acupuncturing, when suddenly it hit me. Among many things, it's re-educating my body. I was starting to have real difficulties walking, and my walking after the recent Hellerwork is... well, 'I'm not sure I'd call it "easier" as such, but it is different. I think my legs are working better, but my nervous system is still adapting to the changes. (Great. More adaptation, over and above what it's doing to recircuit around the MS damage. Oh well, if there's one thing you learn from having MS, it's that "things change.")

I used to be a very fast walker. Very fast. Even without their training, I could keep up with race walkers... but not any more. I am walking though, and certainly even "inefficient" walking is a better means of locomotion than even the most efficient wheelchair, but I'm walking very slowly, something that I'm not at all used to.

But really, what's the hurry? I have to really pay attention to the process of walking now; before, I may have been fast, but I certainly wasn't mindful. The "old me" got there sooner, but wasn't a full participant in the experience. The "current me" has to commit attention to the experience as I'm moving, without impeding it--the challenge is to "let walking occur" and be an active observer as it happens, rather than try to "make it happen," which just gets in its way.

(This is, of course, part of the practice of my style of kyudo: to be fully engaged in the experience, but not trying to be "in charge of" the experience; because if you claim ownership of the shot, you've missed the point--it's not about "you." Who'd have thunk it: A two-thousand-plus-year-old art, trying to show me the path through life with MS. Damn it, I really need to practice my kyudo more.)

Speed--or rather, slowness--is one of the biggest effects MS has had on my life. I do nearly everything much more slowly than I used to... but as I'm thinking about it now, that speed with which I was so comfortable was at the price of depth: a rock skimming the surface of a lake rather than submerging.

My legs hurt, I walk funny, recently I get "sort of" dizzy when I stand up... but in many ways, I'm living quite fully. I've always been overly sensitive, the downside of being sensitive is that you're, well, sensitive; but when my attention isn't being sucked forcibly into my physical suffering, I'm actually having a pretty good time, all things considered.

Today it's not too hot. Fresh, clean air, moving gently. Sunlight isn't too strident. Just a little more wind, and it'll be absolutely perfect. I'm going to try to be outside as much as I can today; right now I'm finding fresh, gently moving air to be the best medicine I could possibly get.

We're starting to enter the season of Earth, in the Chinese energetic calendar. The gift of Earth is "decrease." In the spring, we reach up, we reach up for the sun as we leave our winter beds; in the summer, we spread our arms and reach out, taking in as much light and warmth as we can; and now, we enter late summer: as Neil Gumenick writes so eloquently, "a time for slowing down and gathering in."

It's a nice day. I guess the last few acupuncture treatments are finally starting to do something, because finally, I can really enjoy the day.

Saturday, August 1, 2009


(Truth in blogging: I am sharing a discussion my wife and I had earlier today, so I can't claim exclusive ownership for the ideas that appear here; she had much to do with what I'm about to say.)

You'll find this aphorism many places on the web, often attributed to Buddha or merely called a "Zen saying:"

The obstacle is the path.

Well... shit.

OK, let's try something else: Who is responsible for the largest, heaviest, hardest to move obstacles in my life? Usually... me. Right? Oh yeah... indeed, right.

Which means that the path through those obstacles is therefore... me.

Which means that if I want to confront and overcome the obstacles, I need to directly confront and overcome...


Well... shit.