Thursday, April 30, 2009


Energy is moving, finally, between my upper and lower halves. I'm not sure what it's doing or where it's going to take me, but at least it's moving.

It has been stuck for a while, and "stuck" inevitably leads to "stagnation," which any energy worker will tell you is not desirable (to say the least).

Had a very interesting moment during this Wednesday acupuncture treatment. I got a Heart Protector point, "Inner Frontier Gate," and a most interesting flash of energy: it was powerful, it was full of fire, and it was far from pleasant or reassuring, but it was what I needed. And that was the most interesting part of the experience, an energetic reaction that said instantly, "I really needed that."

Throughout these last few months of darkness, I have always felt like I was going through an experience that I somehow needed to have. It, whatever It is, wants me to learn something, and somehow to change. I really wish I'd get whatever benefit I'm supposed to get from It so that It, whatever It is, would just please quit pestering me.

But I suppose that wishing to go back to my old comfortable life is part of the problem, that "the old comfortable life" is something I've outgrown and just don't know it yet.

I'm stuck at a moment of transition, between the old and the new; how that wants to manifest itself, I don't know. Maybe "things are finally moving" will help unstick that, as well.

Saturday, April 25, 2009


I'm not sure there's a clear method for the kind of "coping" that my life with MS is calling upon me to do.

For major events--deaths, amputations, anything that is a traumatic single moment--the path is at least somewhat clear for both the sufferers and the caregivers. The Kubler-Ross model of grief, for example; the time and the path the sufferer takes on each stage is specific to them, but there is at least some definition to the stages. There is the shock of the event, the process of grief, then the return to a new normality.

Ongoing conditions that involve some sort of (at least at first) significant struggle, such as an unexpected diagnosis of diabetes or a heart attack, can invoke some sort of noble courage as the sufferer deals with the change in life, which is replaced over time by gentle acceptance. "Ah, you get used to it," my fourteen-year-old diabetic student said of her blood tests and injections. "It's really not so bad, after a while. I'm used to it."

My walk with MS is like walking through a light aerosol of oily urine. It's not bad. It is, in the words of the neurologist who gave me the diagnosis, "not even close to tragic." But everything about it is vague. I'm vaguely numb in certain areas. I "sort of" have trouble standing. I don't enjoy using my right leg (especially) but I sort of can, if I have to... usually. Sometimes I don't want to get out of my chair in a very whiny sort of way. But I can, if I have to. Sort of.

It's like having not a sharp pebble, but a gummy bear, stuck in your shoe. How bad is it, really? Well... "sort of" bad. Not "really bad." "Sort of" bad. And it's constantly, and vaguely, changing slightly... every day. Sometimes every half day.

So there's no grieving process that leaves you transformed and liberated at the end. There's no noble struggle against a significant challenge, the rising to meet which leaves you liberated by the process of transcending your own limitations.

It's not at all clear how to "rise to meet the challenge" of an oily aerosol of urine. Even if you manage to hose yourself off somehow, in a few minutes you're wet again. I suppose, that compared to some of my fellow MS sufferers, I should be grateful that so little is wrong with me.

I am. But I'm still "sort of" suffering.

Thursday, April 23, 2009


First day after The Big Treatment.

Last night, I had a dream in which my legs worked perfectly. Normally. They quite clearly felt... wonderful.

'Course, the waking day was different.

But so were my legs. They're not quite the same as they were yesterday. I can't really peg the difference, but they were, at least in the morning. (Now as I write this, they're not so good, but for a while, they just might have been a tiny bit better.)

So, "things" are happening. I can feel that the quality of my internal energy has changed.

Again... we'll see.

Wednesday, April 22, 2009


Had an unbelievably intense acupuncturing today; I think we may have started to break through to the level that the constant depletion that's been dogging me for months is coming from.

The pattern so far has been "two days after treatment good, not so good for the next five," but nothing was so incredibly intense as today.

I'm not sure I think I have more to say right now, it's too soon. After one needle in particular, I had a very clear impression: This is going to be a large and bumpy ride.

We'll see what happens. I'll keep you posted.

Sunday, April 19, 2009


Both an up and down week so far. For two days after my last treatment, I had motivation, good ideas, and stuff got done. Yesterday, half a good day, then collapse. Today, everything's a struggle. I've lost the "oomph" for generating ideas and I'm thinking that the ideas I'm sort-of having just aren't very good. I suppose I should write them down anyway and let the fur fall where it may, but I've never been a fan of work-anyway-even-if-you-know-it'll-suck.

Tomorrow and Wednesday I have to tech the spring music concert, which is definitely gonna be an energy sink (even if I enjoy it, which I expect to do; they're very good, they did a great job today at a concert at a local church).

And oh yeah, we got hit by a heat wave today, three digits in some areas. My legs are very happy it's that hot, but my core is definitely not happy.

Great. I'm Schroedinger's MS patient. I'm 50% happy with the temperature, no matter what it is.

Wednesday, April 15, 2009


A truly wonderful day. A powerful acupuncturing, a little kyudo, a little rest, and an evening with a friend from Mystery School.

Possibly one of the most spirit-lifting days I've had in months.

My doctor gave me a prescription last week: do something with intense breathing (not cardio intense, but pranayama intense), undertake spiritual practice, and introduce something "lofty" into as much of my daily life as possible.

Kyudo covers the first two, and talking to an Oxford-educated anthropologist about what I'll be presenting at next October's "TED talks of magic" definitely falls into the category of "lofty," at least as far as intellectual content goes; a wonderful conversation, both rarified and productive. My wife told me as we headed to the car and home after dinner, "You're positively glowing. You have to have dinner with him more often."

That's a trifecta, as far as I'm concerned. Now let's see how often I can include these components into my life on a regular basis.

Tuesday, April 14, 2009


Such a better day.

Yesterday, I felt like things were slowly coming unraveled. Today, yeah I've still got the "leg thing" going, and it is number than it has been (and that's still a moving target/problem) but today I felt much closer to my normal self.

Still not back to my usual level of productivity/creativity, but at least now I feel like there's hope.

Somebody told me when I was about to move to New Haven CT, "If you don't like the weather... wait five minutes."

Maybe I should remind myself of that the next time I go through another downturn. The weather's bad? Well ... just wait.

And as someone who's hung up on "doing"... that presents its own set of challenges.

Monday, April 13, 2009


It's a rough patch, as the reader may have guessed from the darkness of the last few posts. Today, I had a bizarre attack of "floating numbness"--I thought that I had suddenly and significantly lost feeling in my right leg, a limb that's already trouble enough. Couple of hours later, the numbness had left my leg, but I was feeling it in a band across my midriff. Couple that with the especially nasty fatigue of the last couple of weeks and... well, I've had enough, thank you very much; let's leave it at that.

Cut to earlier today: I find myself talking to students about their college choices. One of them is afraid to go "all the way" to Louisiana to a school our counseling staff thinks is absolutely perfect for her, clinging desperately to something closer to home but (for those who know her and the school she's tempted by) clearly the poorer choice. Another really wants to be a doctor, and she's going to be, there's no question about that, she's already doing graduate-level research at a local institution; and we're trying to convince her that even though the top-tier Ivy-League school we think is correct for her has "only" a 95% acceptance rate for its seniors applying to medical school, she is clinging tenaciously to a less lofty mid-tier school that is associated with a medical school and will guarantee her, today, acceptance to medical school in four years.

It's a challenge to explain to a seventeen-year-old how the difference between "possible" and "likely" is huge; how not to let unthinking fear force you to abandon an opportunity that only comes once in a lifetime; that not every "risk" is a real risk but even so, some "real" risks are worth taking... when you've learned those lessons yourself courtesy of a neurological disorder that simultaneously enriches and screws up your life. I certainly don't want to tell this dear little child-trying-to-become-an-adult that I know she should take this "risk" because some chances once missed don't come back, and I know all about how you need to make the most of opportunities because every time I sit down to play a pipe organ I can tell my legs don't work as well as they used to, there are pieces I can't play any more, and I'm never sure whether any given time is going to be my last because it'll be clear that whether I want to or not, it'll be time to pack it in.

So there's my paradox. I'm in a constant state of vague crappy depletion. Sometimes, I just don't want to do anything. And yet this very experience drives home to me that some chances don't stick around forever, and if you want to live fully, you have to get out of your chair and live. Which is the one thing that currently, I'm having the most trouble doing.

An "interesting" time, no?

Sunday, April 12, 2009


The season is very clearly changing, here in Southern California. We're clearly moving out of the "Water" energy of winter, moving into the "Wood" energy of spring. I generally find winter to be an energetically "squashing" season, I'm always glad when we move through that, and I'm starting to feel like yeah, finally maybe I can actually accomplish things.

Of course, this newfound resolve is complicated by a new constantly moving target, insomnia. I either can't get to sleep, or wake up in the middle of the night, or... well, you name it, and I'm not sleeping during it. Which means that during the day, I spend a lot of time craving, or taking, naps. Actually, it's more like the naps have been taking me.

I'm quite sure there isn't really anything to "do" besides go along for the ride. But I gotta tell ya, it's getting really tiresome to have my "get up and go" constantly sapped in an endless stream of ever-changing new and different depletions.

I've been having enough problems with fatigue, and now I'm beleaguered by sleep disruptions. If the question that's been hanging over me for months, "how/when to know when/how push through the fatigue," would just hurry up and resolve itself, that would be really, really nice.

Any time... I'm waiting...

Thursday, April 9, 2009


Had an interesting chat with my doctor yesterday, about the "fatigue" thing, and how I never really knew whether I should push forward despite the fatigue, or whether I should honor it and do nothing.

He said, "I have no answer for you." That all of his MS patients have this same question, and it's never clear for any of them, and that it's complicated by my own psyche, which in some ways has a two-position switch: "Can't be stopped" and "can't be started."

And this, I found particularly reassuring: that I'm not finding the answer not because I'm not open to the answer, but because the question is really, really hard to answer.

I am, though, starting to get a better handle on the quality of fatigue: that sometimes I'm too tired to do anything and shouldn't try; other times, I'm too tired to do certain things but there is something I can do so I should do at least that; or yes I'm tired, but maybe it's OK to push a little; or yes I'm tired, but I need to do it anyway.

And with a disease that is, and that creates, constantly moving targets, even a little clarity... I'll take. Happily.

Monday, April 6, 2009

Disregarding, not ignoring

I've been having more difficulties than I like recently, in walking. I'm still nowhere near needing to move to The Chair, but walking is just... well, it's getting really [bleep]ing wierd, and I'm not enjoying using my legs. At all.

This concept tends to come and go (possibly coming and going with the degree of difficulty and discomfort as that waxes and wanes over time), but it came back to me the other day: that there's actually nothing wrong with my legs, really. They're just misreporting their state. It's not that my legs are lying to me, that presumes a willful misrepresentation--just that what I'm feeling is not really, well, accurate.

Which, I'm guessing, is neurologically what is happening: the "electrical system" isn't relaying accurate data.

I can't just "ignore" what I'm feeling. Somehow, "just ignore it" always translates to "lie to yourself about how much it really bothers you," and now you've compounded the problem because whatever it was still bothers you, and you're also now fighting with yourself to deny the truth of both the experience and your relationship to it.

The word that came to me the other day was "disregard." Acknowledge what I'm feeling, but set it aside. It's quite "true" that I'm having the feelings, and the feelings "feel true," but they're not "accurate."

It's an interesting idea, and when I try to "expand my consciousness" to this new thinking, the mental process certainly feels very interesting, and I do notice that it does improve my walking.

But dang, it's weird. And difficult. And I haven't quite figured out how I feel about it, whether ("interesting" idea or not) it's a "good" idea.

Or, frankly, whether I have the strength to keep it up.

Or the choice not to keep it up.

Or whether I'm mired in another "doing/not doing" trap and the real answer still eludes me.

And when you're fighting fatigue as I am right now, such conundra are not at all welcome.

Saturday, April 4, 2009


Earlier this week, I was reassured to find several other MS bloggers who, like me, find fatigue to be one of the most debilitating -- and annoying -- things about The Disease (as I've taken to calling it, when I want to talk about it in polite company).

There's something so ... special ... about MS fatigue. It saps the "kindling" fire, the small spark that ignites the real fire; it saps the "sustaining" fire, the "heat" of the fire triangle that (in the "real world") keeps a flame going. Or perhaps in my case, since (in the five-element system) I have issues with the "Metal within the Fire," it's sapping the Air, the medieval "element" that corresponds to Metal in the five-element system. (Sorry to get so esoteric, but I spend a lot of time in "esoteric" nowadays.)

Just visited the blog of a friend of mine in the magic world, who also spends a lot of his time in esoterica (in his case, the yogic world) and who is another member of the Mystery School. Just reading about him is sparking something... I've been kept awake the last few nights with ideas about scripts for magic effects, and have done nothing with them, not even writing them down, and they're in the dangerous place between "causing a blockage because they want to be let out" and "getting reabsorbed." I haven't had any fire to put my magic into practice... but at least I'm feeling a spark to do something.

So I'm feeling a spark... and I'm craving air. I've been craving air a lot, recently, and last week I got the Metal within the Fire directly treated, and I've been trying to continue nurturing the "Metal within," in my own way, all week. That's two of the three legs of the fire triangle; and spring is, in the five-element system, the season of Wood. (Perhaps... the fuel? You think?)

Wood. Air. A spark. Maybe I can strike some fire today.

Wednesday, April 1, 2009

The Intermediary

Had a great acupuncturing today. I got some points just to address some leg issues, but best of all, I got something to directly address this "feelings of grief" thing I find myself trying to find my way through, a point called "the intermediary."

I feel like whatever was trying to get my attention has now received the attention it needed, and I feel a lot lighter now (on the way home I went shopping, and actually had fun doing so, for the first time in quite a while). But the question remains: grief is a response to a loss, for something that used to be but is now gone, or for something much desired but that cannot be brought to pass. The obvious motivator is simply the physical effects of MS, the loss of the things I used to do without thinking but now are creeping steadily towards "out of reach." But that doesn't resonate, that seems obvious but somehow doesn't seem right.

But an intermediary is just what I need; on Paul's journey to Damascus, the scales didn't fall from his eyes until he met just such an intermediary.

I feel supported, and my load lightened; we'll see where the road takes me next.