Friday, May 29, 2009

Depletion (pointless), avoiding

A quiet treatment this week, at the acupuncturist's. Many points with lovely poetic names, like "Spirit Burial Ground" and "Utmost Source." I also got "Great Mound," on first blush not so poetic, but it's about high ground upon which to stand and thus gain greater vision.

"Utmost Source," I get a lot. One of its uses is to reconnect you with the divine, with the "utmost source." Apparently, I get disconnected from the divine a lot, because I get this point a lot. Which is something I've been feeling myself, a lot, and something I tell the acupuncturist a lot (which may be why I get that point a lot).

But something else interesting I've observed recently: Time was when I needed the TV as an anodyne. For some reason, in particular I found Mythbusters especially comforting. But now, I'm noticing that watching the TV doesn't make me feel better, it makes me feel worse. Not the subject matter, simply the activity of watching the TV makes me feel worse. Same for the Internet; time was I enjoyed browsing and surfing and wandering around the information superhighway, but now I'm finding that when I reach for the "heroin vibes" that I used to get out of the Internet, it doesn't take long but I start feeling depleted: intellectually, spiritually, and energetically.

So I think I need to embark on an electronic fast. "Looking things up" on the Internet, yes; "surfing," no. "Watching something good on TV that makes me feel good:" yes; "watching not-very-good TV to feel less bad," especially fifth-time-repeated reruns: no. And in particular, no surfing news sites. The dueling "arguments" in today's political "dialog" are neither argumentative (in the legal/logical sense) nor "dialog" (in any sense), and given that MS is all about "againstness," I really need to be immersing myself in imagery of reconciliation, not shouting matches and ego-puffery. I've never been much interested in watching that happen live, but I need to even avoid reading the reporting of such. (An aside: Japanese will call people like that a pufferfish: big and spiky and scary looking on the outside, but inside... empty.)

If I'm too tired to [fill in the blank], I need to lie down and rest, not sort-of-engage my brain and pizzle out what little energy remains. If I don't feel like doing anything but sitting, I need to sit outside in fresh air (temperature permitting), or at least sit facing the sunlight rather than facing the interior of the house.

A great idea, on paper. Let's see how well I can execute it. I've already started to ease my way out of my electronic-addiction habits, and I think it's already working. We'll see how far I can take it.

Tuesday, May 26, 2009


A real roller-coaster ride, these last few days. Yesterday was glorious: I didn't have the gumption to go to a party that I had really wanted to go to, but I did get a nice chunk of music written. Very pleased with that.

Had a wave of "determination," regarding a project that desperately wants both to be shelved and acted upon; a moment of "Yes, I have to do this, it's worth doing, it's worth me doing."

Today... nothing. I had a really wonderful talk with one of the students after school (the high point of the day) but shopping for dinner was difficult, and shortly after dinner I sacked out in my chair, and I've spent the rest of the evening doing nothing and not feeling particularly bad about doing nothing.

I think it's the "there are good days and there are bad days" that I really haven't come to peace with, or found the right way to approach either the functioning during said bad days, or to the acceptance that I need to honor those bad days at least in some way.

Acupuncturist tomorrow; he always has interesting things to say. And we'll see what the state of my internal fire is, both before and after the treatment.

Friday, May 22, 2009


A very wise friend of mine once read the I Ching, sometimes called "The Book of Changes," and said that it was not a divination tool about the changes you should make, but an insight into the process of change.

And then he said, "You can't change your life. Your life is too big, too complex. Yes, if you pick up and move to sub-Saharan Africa, that'll change your life, but unless you do something that big, you can't 'change your life.' You change something small, something within your life. And that change will cause changes, which will cause changes, which will cause changes...and eventually, your life will indeed have changed."

I have stumbled across a lot of prescriptions for "changing your life," recently, how to "add time" or "make time," that sort of thing. And indeed I have come across many interesting ideas, but as Sam Anderson discusses (among many interesting topics) in this article, "life hacking," such as prescribed by and other such sites, also has a time cost. One can spend an awful lot of time trying to optimize things in order to recover time. "Sharpening the saw," Steven-Covey-style, certainly has its merits, but lifehacking can easily become a time sink in its own right.

And then, I came across a Zen story: The master, when asked to explain the essence of Zen, says "When hungry, eat. When tired, sleep."

How many "energy recovery strategies" that are offered to the world essentially boil down simply to that simple formula?

It has been dawning on me, slowly but surely, that maybe instead of "resting" by picking up the computer or the iPhone or the TV and running my brain in second gear until I've expended all sorts of energy to "rest" and in so doing sucked the "energy tank" dry, that I should instead just lie down, put my feet up in a yoga inversion, turn the light off, shut my eyes, and actually rest.

So I've got a few minutes before I've got to go off to the next class, so that's what I'm going to do. And with luck, when I get home tonight and I'm tired, I'll do that then, too.

Make a small change, and that will make the big change. Don't try to push over ten thousand dominoes at once... just push over the first one.

Monday, May 18, 2009

Brighter (for the moment)

Well, yesterday and today were much better than Saturday. Sunday did have one dark moment where a colleague of mine told me about something that had happened at work and I cannot believe how angry it made me, when I heard about it. You know how desert horned toads are supposed to be able to shoot blood out of their eyes? I was that mad. I spent a lot of time in that state, the two years before my MS diagnosis, and I had thought I was past all that, whatever it was. So... I guess I'm not.

Great. Something else to work on.

New shoes, yesterday. Very interesting, the shoes have been over the last couple of years. It takes a while for your shoes to get used to you. But as time keeps going by, you keep changing, but your shoes don't... which means that at some point, your shoes will start trying to force you into a shape/way of holding yourself that is now outdated. I had a single pair of shoes that I wore pretty much non-stop during the years I spent angry all the time (as I mentioned above), and when I stopped wearing them, my attitude very suddenly improved. My anger attack was Sunday morning; I got new shoes Sunday afternoon. The anger has mostly passed.

Except when I think about it, it comes back. Not as acutely as it was when I first experienced it, but it's still there.

Great. Something else to work on.

Saturday, May 16, 2009


The MS road so far has been significantly more of a spiritual journey than a physical struggle. The physical stuff tends to start out weird, but I settle down reasonably quickly to a state of "oh well," for most of it. I don't tend to drag around emotional baggage (about the physical stuff, at least).

Yes things don't work the way they used to, but I'm not really taking any emotional/psychic "hit" from it--at least, that I can tell. Maybe I'm just better than ever at denial, but since none of my malfunctions have irrevocably shut a door on a chapter in my life--I can still drive, I can still walk, I can still play the organ well enough for the things that I play or work around the difficulties to "sell" the music anyway--I don't really walk around in either "Oh woe is me" or "Oh dear, when will [fill in the blank] finally [fill in the blank] and my life as I know it will be over? Is this my last time to [fill in the blank]?"

Except one. I've always been a "I can do a lot of all sorts of things" person, and I really can do a lot of all sorts of things. As one of my graduate school teachers said once, my breadth is really, really broad. Even now I've got at least oh...six major projects on my "to do" list that I'd really like to launch and pursue with gusto. And before the MS, I could probably have done at least three or four of them with no problem, and if I had really dug in, I could have done at least five of them.

Now I accomplish three small things in a day, usually things that only take a small amount of creativity or none whatsoever--for example, today it was "mop part of the kitchen floor"-- and that was a good day. I'm used to being able to summon a huge head of steam, and now I get a few little puffs and then it's time to sit down. Really. Really, best you should sit down. Or lie down. Now.

I mean, Friday at school I had lunch, I was watching some video or other at my computer, and about ten minutes after I finished my sandwich, I fell asleep in my chair. I don't remember what it was I did Friday morning, but I know it wasn't much more than walk across campus a couple of times, talk to some kids, and sit at the machine and type. Hardly what you'd call "exertion." I had even had a decent night's sleep, for once. And yet, here it was 12:15 and I was completely zonked out.

Part of this is a "level of consciousness" thing, I'm sure, one of those easier-said-than-done "change your mind and you change the world" inner liberations/transformations. Part of it, though, is physical, and I'm having a hard time figuring out which limitation is getting to me at any moment. Spiritual evolution is damned tricky to catalyze on your own terms; of course, in the words of one of my spiritual advisors, "You don't need to go looking for your attachment: when it's time for you to deal with it, it'll bite you in the ass." Physical fatigue is another matter. Is it a blood sugar thing? (Probably, in part.) Would some gentle stimulants to help you over the rough parts help? (Maybe and occasionally, although given that I need Inderal to help buffer my nervous system against the world, twitchiness-inducing stimulants plus beta blockers seems to be a losing combination on both ends.) And there's the whole "Weekly acupuncture does wonders for two or three days and then poof! Whatever fire he lit under you is gone. Nice while it lasted. (Well, at least a little...)"

And it doesn't help that I have days like today: got up this morning, and WHOO something's wrong here, it's not exactly "dizziness" or "light-headedness" but I'm not exactly hooked well into gravity or locomotion... A little blood-sugar-boosting watermelon and things quickly got a little better; and I even managed to get out to lunch at our favorite vegetarian Indian bistro (nonstop Bollywood on the big screen!) but I was ready to go home long before it was time to go home. I definitely have been living in "out of steam" all day. Got some music written, but I was hoping to shoot my bow today and I just could not get over the "can't get started" energy hump to go outside, stand there, shoot, and walk to the target and yank out the arrow--and really, physically, I didn't want to have anything to do with locomotion, or standing, or even just sitting up.

There is a path through this. My creative life is not over. I am not doomed to have all sorts of ideas and not be able to realize them. I know this. I am not mired in despair over those possibilities. My creative life, however, is mired at a standstill because I have all sorts of ideas and I just don't have the gumption to start the work it takes to realize them. I'm willing to do the work it takes, I'm used to doing work, once it's going it's not hard, it's fun (even when it is hard)... but I'm missing the catalyst that starts the alchemical reaction that turns thought into action.

Remember cheerleaders at football games? Their cheers always start with "Ready? ... o-KAY!" and off they go.

For me, it always goes "REA... oh dear. Not good. Something's wrong. I'd better sit down a few minutes... nope, better lie on the floor with my feet on the chair, sitting's not so comfortable..."

When it's a mental problem, it's better to suck up the pain and just push through it (usually, once you get rolling, you're fine). When it's a physical problem, sometimes it might be better to listen and take the rest the body wants.

I think... I think... a good portion of it is physical. But it's probably both. And so, that means I should push through... or ... not?

Wednesday, May 13, 2009

The diving board

One of my students is currently going through the usual about-to-graduate grief and introspection as he ends one phase of his life and moves on to another.

When I told one of my colleagues about this (also a former teacher of this entirely wonderful young man), he said something that also resonated with me: "He's got to step off the diving board."

In an e-mail conversation with my kyudo teacher the other day, he said "You have to bring yourself to the bow." A teaching I've heard him give many others. Like all kyudo teachings, it's both philosophical and physical... an aside: everything in kyudo has three facets, physical, spiritual, and aesthetic. How wonderful would our lives be if everything we did was consciously invested with those three elements? But I digress..

In all the time I've been practicing kyudo, I've never "brought myself to the bow." Part of the reason that I don't understand how, I realized this morning, is that I'm afraid to bring myself to the bow. It's lack of commitment, caused by fear. Fear of what, I don't know yet. But that's always been one of my major stumbling points in my kyudo practice: fear.

Although MS certainly wasn't a "graduation excercise" in any sense of the word, it is pushing me to a point of "commencement:" That part of your life is over, a new part begins. And I'm speaking least of the physical aspects.

To return to my colleague's metaphor, I'm on a diving board; and I'm not even standing on the edge looking over, I'm on my knees with my face pressed to it, clinging to it desparately. And because my face is pressed against it, I can't even see what it is I'm supposed to be letting go.

I'm stuck, but to what I don't know. I do know that I need to let it go; I can feel the change pushing at me... to step off into the abyss and just let it happen.

This too is going to be a gift of MS... but to receive it, I need to open my arms, let go, and step off the diving board.

Even just writing about this, right now, I'm terrified.


Tuesday, May 12, 2009


A magazine-ette for MS sufferers, published by one of the big MS societies, came in the mail today. Something in one of the articles caught my eye, and unfortunately also raised my ire. I know that the people in these societies have nothing but generosity of spirit towards MS sufferers, and are committed to finding a cure. But what got my knickers in a twist was an article on "disease modifying" drugs. Points they raised were
  1. They don't cure the disease.
  2. They don't relieve disease symptoms.
  3. Quite the contrary: Their side effects are often worse than the disease.
They then went on to ask, "How can we convince people who aren't taking these drugs that they should take them?" And to state that the most important factor contributing to patient's decisions not to take the drugs was lack of contact with a neurologist, and that people who see neurologists more often are more likely to be on the drugs. Therefore, don't just go to your GP, see your neurologist, and he'll put your feet on the Right Path, because we want everybody to take these drugs.

Now, I refuse to speak for other patients, whose paths, resources, and needs are not mine. However, since my paths, resources, and needs are very much non-standard, let's review:
  • I see a neurologist every week. My acupuncturist/MD is a board-certified neurologist. He also has MS. He used to be on the only injectable he thought had no side effects (Copaxone). At some point he realized it in fact did have side effects, went off the drug, immediately felt better, and said he hadn't felt that good in the three years he had been on the drug.
  • The MS symptom that most negatively impacts my life is fatigue and energy drain--it's a "quality of life" problem. The MS drug manufacturers tell you up front that they won't improve quality of life. Quite the contrary: Inject yourself with interferon, you have a 100% chance of getting sick. One of my friends who's on interferon reports that he gets a shot once a week, feels like complete crap half the week, then feels good half the week. I already feel crappy at least 25% of the week, what's my motivation to feel more crappy?
  • My acupuncturist improves my quality of life. Significantly. My qi gong practitioners often give me symptom relief, as well as quality of life improvements. None of which the MS drugs will do--their manufacturers tell you that, right off the bat. As I told the person taking my information during an MS survey when she asked me whether anything could convince me to go on the injectables, "I go to the qi gong master and tell him my legs are cold. He waves his hand over my legs, pokes me in a couple of places, and walks out of the room: and my legs warm up. Or I can shoot myself with Tysabri, turn my brain to mush, and die. What exactly is my motivation to go on the injectables?" Her response: "You got that right."
The current MS treatments are a stick in the wind. They basically throw a shoe into the mechanism of your immune system, hoping to cause a failure somewhere near where they think MS is chewing away at your nerves' myelin sheathes, but not completely squash the entire immune system. The medical establishment pushes them, I think, because they're the only treatment they have.

But they're not the only treatment. Or the only way to approach this disease.

I'm developing a very interesting relationship with this disease. It has made many, many life choices for me. And aside from the annoying physical issues, I can tell that this is a road I need to travel. But shooting myself with things that won't help me and will make my life worse--not a chance. And thank you very much for caring about my health, but as far as this particular treatment path is concerned: stay out of my face.

Wednesday, May 6, 2009

The anchor

Another good acupuncturing today. Another visit with the point "The Intermediary." I don't like getting it because it lies all-too-"conveniently" close to a nerve, and getting a needle stuck into a nerve isn't anyone's idea of fun, but I like getting it because of what it does for me.

It's very interesting to get the "zap" of the point, and a flash that says "That isn't what I wanted, but OH is it ever what I needed."

Good news on the purely physical side: the leg numbness is slowly starting to abate, I'm starting to get better touch sensation all along the legs and the soles of the feet. 'Course, the numbness is getting worse in the torso (imagine an elastic band, about a foot wide, wrapped around your torso just below the rib cage, pressing ever so slightly like a girdle, and numb) but changing is better than not changing, and numbness moving, as my neurologist/acupuncturist agrees, is better than numbness not moving.

We also talked about stimulants; the other day, I found that I was having a very bad attack of I Don't Want To Leave My Chair, and a strong cup of black tea (although it chewed at my stomach a bit, I'm a green-tea drinker) raised the anchor and I was able to get up and do things and enjoy doing the things, and I didn't mind so much not being in the nice comfy chair, I enjoyed getting things done for a change.

Now, given when I went to high school and college, you'll understand, gentle reader, that I'm a bit of a psychopharmaceutical connoisseur, and caffeine is not my stimulant of choice by any stretch of the imagination. It's rough, it's jangly, and when you're living a life without insulation, doing something that makes you twitch more is just plain wrong. But I felt, and my MD agreed, that stimulants are not the right road. They're not really a solution, and they're certainly not "the" solution (although judicious application of the correct dosage of the correct quality of beverage, at the correct time--even of high-grade OTC powdered green tea--would be OK, in moderation).

His most interesting comment was, "You talk about being 'anchored' to your chair. You don't want to 'lift' the anchor. You want to 'let go of' the anchor--just leave it there." I got an immediate internal flash of "Yes, that's the right answer." But I don't know where the knot is on the rope... I'm not sure how to untie the anchor. Or how to cut the rope.

But week by week, we're getting flashes of The Right Answer, whatever that may be.

Another Insight Flash, perhaps thanks to this week's needling: I need to get away from the electronica (computer, TV, iPhone, whatever) and do something physical: work with something plastic, somewhere there is fresh and moving air. Much of the way I actualize my creativity is through the computer, but I still enjoy brainstorming, and writing (at least in the early stages) on paper.

To borrow a five-element metaphor, I need to throw some Wood on the Fire. And Wood, being organic, does not come out of a screen.

And maybe get back to reading things on paper, rather than on a screen, cute though the screens may be. Now there's a thought...

Monday, May 4, 2009


I went through some bizarre energy "stuff" (for lack of a better word) last night... I couldn't tell if said energy was fear or anger, but it definitely had its knickers in a twist somehow. But most interestingly, it had no desire to interact with my consciousness and tell me what it was unhappy about or what it wanted. It was quite petulant, actually.

I've had similar experiences at my acupuncturist's office: a couple of treatments ago, I told him that the treatment was working, I guess, but my energy clearly had no interest in anything he had to contribute to the party. (It was at that point he whipped out CV5, and things changed immediately.) This energetic non-cooperation was also experienced by my Qi Gong doctor: at my last treatment, he said that in previous treatments, the energy "wouldn't move."

The acupuncturist I visit when my regular person isn't available said that I have passive-agressive pulses. When she takes my pulses, she asks them, "How are you?" And then, a moment later, she asks them, "How are you really?" (At which point she gets the "real" reading.)

MS is all about conflict. It chews away at your neural insulation. Your nervous system responds by rerouting itself (or trying to, at least). The MS chews back. The nervous system reroutes. The patient feels this impact in whatever way it manifests. The patient fights against himself to push through the debilitation/inconvenience/whatever to get back to "normal" life. The MS pushes back. The patient pushes back at the MS harder. The end result of the patient and MS pushing at each other in opposite directions is that, when everything is said and done, nobody has moved much, if at all. But the patient, at least, is exhausted. Gee, no wonder we're all tired all the time, we spend most of our energy pushing back at ourselves and going nowhere.

One day, my doctor said that "Cancer patients need to fight back. MS patients need to stop fighting." An MS sufferer himself, he certainly didn't mean that we need to give up, roll over, and die quietly; but that "fighting" is part of the problem.

Certainly, we must persevere... but before we push back, we need to listen.

Curiously, this is also one of the lessons of my style of kyudo: Bow already knows how to shoot, arrow already knows how to fly. Don't try to teach the bow how to shoot; let it teach you. Which means that you should stop pushing back at the bow, and instead... listen.

Speaking of "persevere..." As I write this, I realize more than ever... I really, really, really need to shoot my bow more. (We'll see how long my resolve stands up to my uncooperative and moody legs.)