Sunday, February 27, 2011

That's February for you

So I was looking at some opportunities at a composer's website, reading announcements for various composition contests, and thinking, "Yeah. Yeah. I can do this. I should do this." And I was already to give it a try. To give something a try.

That was Friday. Come Saturday and Sunday, I'm pretty much unable to do anything besides sit in the comfy chair. I spend the weekend sleeping, on and off. No energy, no fire of the soul, no ideas, no nothing. I did a little orchestration (fixing something for the musical coming up next weekend) and I suppose it used creativity--I felt like my orchestration was creative, at least--but it's not creating, and just that all-too-short time I spent in the music editor was pretty much all I could do, the whole weekend.

The low temperatures are making it harder for me to walk. I nearly fell over outside this morning, when my legs started shivering. Violently. (And yes, I know, 40s aren't cold compared to Connecticut where I lived for a few years. 40s is cold enough for me, right now. And I'm really, really grateful I'm not in Connecticut, and able to live in the "balmy" 40s.)

And, to add insult to injury, I can't seem to warm up. The house has heat and everything, but ... I lie in bed under felt sheets and a comforter folded double, and I don't warm up.

Well, MS does make you temperature-sensitive. I'm heat sensitive and cold sensitive. And right now, I'm cold in body, and cold in spirit.

That's February for you. Good thing it ends Tuesday.

Friday, February 25, 2011

Giving up (oh, really?)

A post on Lifehacker today talked about how "giving up may sometimes be the best solution to a problem." Following its link to the author's complete post, he says, "When I give up, I accept life as it is."

I cannot speak for the author or his process. But, if you're an anime fan like I am, this may bring to mind an episode of Boogiepop Phantom, where a little girl says exactly that... and a shout from beyond the grave stops her short:


Talk is cheap. There's a very, very thin line between the delusion of acceptance and denial. Actually, there isn't a line. They're the same thing. The delusion of acceptance is the lovely golden bow that denial ties around the embrace of darkness that it truly is.

And, it's possible to give up, roll over, and wait for death. Even "accepting the world as it is."

I'd rephrase this completely. Don't embrace the defective, or the destructive--especially the self-destructive. Open your hands, let it go, and embrace the alternative.

Nice idea on paper, isn't it. I know that for some people, it's quite doable.

Not for me.

And the MS road constantly brings me face to face with things that need to be released. Not "brings face to face," but "puts in my face," things that need releasing so that I can receive the alternative.

The struggle with that really puts the dis-ease into disease.

MS is a hell of a thing, ain't it?

Especially when your life with MS is trying to show you the way OUT of hell.

Tuesday, February 22, 2011


I heard today, for the first time, of a co-worker's MS adventure. She's apparently somewhere far away doing some sort of experimental procedure where they remove some stem cells, chemo the bejeesus out of her to kill pretty much everything except her, then they pump her stem cells back... all in the hopes of making the magical stem cells arrest the MS process. They of course can't cure it or undo it... they just hope to stop it from getting worse. (That was the story I heard, whether that's medically accurate or not I don't know, but that's the story.) I also heard that she's not enjoying this experience at all, and that doesn't even begin to describe what she's going through.

I pretty much stopped the rapid MS progression by cutting out dairy, 100%. Made a couple other trivial dietary changes; I take some funny tasting herbs that have no side effects--none. Ever. And while the MS Road is not always an easy one, I gotta say, quality of life? That, I still got.

So yeah, the walking has stopped degrading as quickly as it had, but I'm still pretty unsteady on my feet. One of my legs is actually starting to report its situation as "numb" rather than "dunno quite what's happening," my vision is definitely acting screwy (eye-positioning muscles not interfacing with current prescription, no optic neuritis), other things are malfunctioning in a "they used to be working a lot better" manner.

Then again, I'm also aging. Some of these things are natural consequences of that, too, and there's no going around that right now, either.

I have wonderful, profound conversations with my students, and when I'm lucky to see friends, I have marvelous moments with them. I've had moments with all those who are close to me that were more transformative and more wonderful than almost everything else I've had pre-MS. The MS Road has transformed my life in absolutely miraculous and wonderful ways.

And I walk funny, I need a walker, my eye muscles are working screwy, and some of the plumbing doesn't work so well any more. Was that the price of the miracles I so enjoy? Or the catalyst?

MS may also stand for Many mysterieS...

Friday, February 18, 2011

Releasing (why IS it so hard?)

My kyudo shishou (Japanese for "mentor," as he has chosen to be called) just posted on Facebook that "Kyudo is the art of releasing... of letting go..."

I've often written about this Japanese martial/spiritual art. I was taught, and I try to express in my practice, that kyudo is about offering yourself, and opening yourself, to the bow, and the arrow, and the target, and the universe. There's a lot about kyudo that involves doing our job correctly, as best you can--but also, about staying out of the way; about not hanging onto things that weren't yours to begin with, and never can be yours--so why are you holding onto them?

The MS Road is proving to be a spiritual journey, about integration, and listening, and especially about release. Especially releasing things that weren't mine to begin with and never will be, so why am I holding onto them?

Do the physical "issues" get in my way? Sometimes. Slow me down? Frequently. Disappoint me? Disappoint others? Well... yeah. I try to pretend that they don't, but they do. And releasing that pretense is the first step to transcending the disappointment.

"The bow and the arrow always tell you the truth about yourself." That's what my teacher said the day I met him; that's what convinced me that I had to find out more.

It would seem that the MS Road always tells you the truth about yourself. And releasing your reaction to the road, and to what it brings you, is the first step to transcending the changes the journey throws at you.

All things considered... it would seem that injecting yourself with semi-toxic "disease modifying" substances is easier than transcending yourself.

Well, I ain't about to inject myself with that stuff. No way, no how.

Guess I better start working on the "transcending" thing, huh?

Or, at least, to go practice some kyudo.

It's a start.

Thursday, February 17, 2011

That says it all, doesn't it?

So, what do I miss?

Walking? Walking with the power and freedom that I used to have? Yeah, kinda, but I'm dealing with it... Pretty well, I think. I still haven't figured out the "it takes how long to get places?"

Playing the organ? Well, opportunities had kinda dried up anyway, maybe it was time anyway to do something else... I don't know, though, and I don't know whether that still hurts and I'm just denying it, or I've just plain given up. I don't think I'm at full Zen-level "acceptance" yet.

Dietary changes imposed by my new herbalist? Well, I do like how it has lowered the degradation of the walking, but I miss salads. No dairy? Thank goodness I like Chinese and Japanese food so much, they're basically dairy-free, but I miss ice cream and such deserts... a little bit, not much. Although every once and a while I go through a "Dammit, I want a cookie!" moment. Dairy was actually the easiest thing to bid farewell to.

What I miss... is energy. Energy to care; energy to cause things to manifest; energy to be truly creative. I seem to have gotten myself into a "I don't have the energy to do things that would give me energy" loop. My doctor has pooh-pooh'ed that, and given me an energy generating exercise that requires almost no energy to perform. 'Course, I haven't done that yet... I had too much to do, and after I did the "to do" I immediately crashed.

That's what I miss about being on the MS road. Energy. Joie de vivre. And yet, so many other things have actually improved--attitude, perception, sensitivity, compassion.

Is my challenge not to see what I have as "less," but to see what I have as "different?"

I'd have to say... Yes. No. Don't know. Each of those answers, and none of those answers.

I guess that says it all, doesn't it?

Monday, February 14, 2011

Conversations; comedy

As I've often said... the MS Road presents you with comedic moments. Specifically, with "comedy like this, you just can't write" moments.

A typical, if not daily, conversation with, for example, the bladder. He has an unglamorous, but important job. Before the MS experience, he was always someone you could count on. Within the MS world, he's... opinionated. Unpredictable. Impossible to please. "Mr. B.", let's call him. Since I'm a big anime fan, let's call him B-san.

The conversations too often go like this...

Me: "So... you need something?"

B-san: "Nah. I'm good. (pause--maybe long, maybe short. Always a surprise.) OH NO OH NO OH NO OH NO"

A hasty journey to the Necessarium. Then:

Me: "OK, we're here..." (Silence.) "Something I can do for you?"
B-san: "Nah. I'm good."

Me: (long pause) "OK. We'll come back later." (stands up)


We try again. Something happens. Finally. Sort of. Probably something not very impressive.

Me: "Well, that was worth waiting for, I guess... " (Cue the laugh track) "All done?"

B-san: "Yes! Thank you very much!"

Me: "Then let's be on our way!" (stands)

B-san: "Um... excuse me... I think.. maybe... well... ah......"

Me: "Fine." (Sits. Waits. Nothing.)

B-san: "Why are we still here? Something else, you wanted?"

Me: "Never mind." (Stands)

B-san: "Don't leave! OH NO OH NO OH NO OH NO" (Cue the laugh track)

Somehow, I find my fourteen-year-old cat easier to deal with. The cat meows. Maybe it wants to be fed? No, there's food in the dish, maybe it wants different food. Maybe it wants to be rubbed? Not here, of course, over there, being rubbed here is no good... No, follow me into this room, rub me here, and then give me more food.

Making it happy? Who knows how to do that? But going to the bathroom? That, it can take care of just fine. It goes outside, and everything works perfectly, first time, every time.

But with B-san, every conversation is... trying to persuade the unpersuadable. The classic "irresistible force meets the immovable object" is a much simpler conundrum. Let's try to give him what he wants. Sounds easy... but even he doesn't know what he wants! Watch our hero as he deals with someone who can't seem to make up his mind, no matter how hard you try to please him! Hilarity ensues!

Comedy like this, you just can't write.

Friday, February 11, 2011

Curve shapes

So, as I'm led to believe, in relapsing/remitting MS, you get worse, then you get better. Then you repeat. (Basically.)

In primary progressive MS, you just get worse. In secondary progressive, you get better and worse cyclically, then you just get worse. (Basically.)

So, as for my condition, for quite a while, I got steadily worse; and then, I got... nothing. The "getting worse" seems to have stopped; I seem to have plateaued.

This, I credit to the new herbalist, his herbal prescriptions (I can recommend him, but not a specific herb, these are tailored specifically to me so it wouldn't do you any good even to try them), and his diet: No coffee, no leafy greens, no (three underlines under "no") dairy of any kind, and minimal fruit-based sugar (nothing refined).

That "no dairy" thing, there has definitely been something to that. I started with the herbalist, went on the diet, things were getting better... then I started eating at the school's kitchen, even sticking with the "no cheese" options... apparently, they used more dairy than I thought they did, I got hit pretty hard by the hidden dairy. A few months later, some really-really-really-positively no-dairy months later, the "worsening" that had been creeping over me seems to have stopped. My wife doesn't need to push me around in the "walker in wheelchair mode" nearly as much as she used to; it really feels like I'm no longer progressing, disease-style.

I wonder if (oh, let's keep the positive outlook--when) the damage will recede... when the nervous system will repair itself.

As my wife said at the beginning of the whole MS adventure, "I wonder when the 'remitting' is going to start."

Hope springs eternal.

Tuesday, February 8, 2011


Amazing, what gets me frustrated.

The "I can't walk like I used to?" Nope.

The "I can't play the instruments I used to?" Nope. I'm probably still in denial on that one, but at least I'm not frustrated.

The "[insert body part here] isn't doing what I wish it would?" Again, probably still in denial, but no frustration.

Students who just don't get it because they don't do the work? Actually, that's not frustrating. Perennial, yes; pandemic, yes; funny, in a very dark way, yes; something we deal with every day, yes. But somehow, the emotion I get from it isn't "frustration."

I'm beginning to realize that my "thing," no matter what means I use to achieve it, is catalyzing transformation through the opening, and the unification, of the mind and the heart. I try to write music that does that. I try to help my students do that, no matter what I'm teaching them. I've definitely noticed that I've been on a "self-empowerment" kick all year, showing students how when they do X and Y in such-and-such a way, they have the power. Especially in computer class--yeah, you can let your computer do a, b, c in the way it wants to, and get a sort-of OK result... or you can do it this way, have total control, and get exactly what you want. And it's amazing what wonders come from giving people the power to transform themselves and their world.

Children don't frustrate me. Adults frustrate me. As one of my colleagues said earlier this week, "I love helping children become good adults. I hate having to help adults become good adults."

At work this week, I've been going through what the Science of Mind church would call a "growth crisis." Things are changing (details aren't really important), I'm not dealing at all well with the changes, and I've been nattering to myself for several days about this, trying to get to the root of "What is really pissing you off about this?" And for the amount of fighting I've been doing with myself, I'm thinking it must be something pretty deep; something that I really need to process and release.

Funny... time after time, the MS experience brings me face to face with "I need to let this go." The Buddha preached about attachment causing suffering... and honestly, I'd have to say that right now, I'm suffering more from attachment than I am from MS. One of the first things I learned from the MS Road is that it very quickly teaches you what are real priorities; and clearly, clutching comfortable delusions--not just being attached to these delusions, fighting to stay attached to things that aren't good for you, is not a priority. Discarding those delusions, and facing those attachments, taking responsibility for them and choosing to maintain them (and suffer) or let them go--those are the "real" priorities. Aren't those also the "real" priorities of the human experience? The MS experience is, after all, nothing more or less than the human experience, simply writ so large that we can no longer pretend that it doesn't effect us.

I'm thinking... the Buddha would probably agree.

Sunday, February 6, 2011


A first, today.

I stopped by a couple of stores on the way home from church (it's so nice to have my own car). Just like I always used to do. Like I haven't done in I can't tell you how many months.

A return to "the way it used to be." A nice first.

However... to purchase a bungee cord and visit the grocery store to pick up breakfast cereal and some vegetables... it took an hour and a half.

An hour and a half.

You have to understand, these are not "out of your way" stores, these are "drive by them as I go home." A twenty-minute ride at most.

And it took me an hour and a half. Do I really move that slowly? Does it really take that long to get the walker out of the truck? To walk through the aisles? To put the walker back into the truck?

I guess it does.

Not only do I still need to really accept the existence of the MS, I need to accept its consequences... and that won't happen until I become more cognizant of those consequences.

Another first... still to come.

Thursday, February 3, 2011

Welcome proof

Like many MSers, some of my "unwelcome modifications" have been with my bladder.

I'll spare you the details. Let's just say that it has been...

Untrustworthy, in its reporting of its state and desires.



Pretty much anything you can think of that starts with "un" that brings annoyance, it has been.

Continent... that's about all I can say good about it. That's certainly good news. Even though it has come all too close, too many times, to the contrary state.

Contrary. That's what it has been.

So I got this new formula from my herbalist this week, and a lot of the herbs seem to have been aimed at the bladder, because it has only been a few days on this formula and things are already different. My bladder is becoming more predictable, and of all things...

The best way I can describe it is "enthusiastic." Which it hasn't been for I have no idea how many months.

Nice to know that some changes are for the better. Yeah, in our heads we know that, but it's nice when our bodies prove that it's true.