Monday, March 30, 2009

On the road to Damascus...?

Y'know, I was referred by some Big MS Organization (remaining nameless simply because I forgot which one it was) to some other poor sufferer's zone on blogspot, and he's clearly having a much worse time of it than I am, physically at least.

I find a lot of these sites here and there, by people who are really struggling with the physical impacts of MS. And I'm really grateful that my road isn't theirs.

And of course, I'm tussling with physical stuff, but I can still walk around my own house unassisted, I can still drive (sometimes I think it's getting shakier but it's still basically OK), I can still shop, I can still hold down my job and the students at said job are actually a big part of why I'm really very happy with my life, MS and all.

But where this thing is really kicking my tail is energetically. Part of it is simply being out of energy. All the time. Even after visiting my oriental-energy caregivers who, prior to The Disease, were able to very nicely fill me up with energy, thank you very much. And have it last a good long while. I mean, I went to one of my current acupuncturist's teachers for a treatment a few years ago, and told her my creativity wasn't what I wanted it to be, and she fixed the problem. Big time.

Now... nothing lasts. Oh yeah, they can fill me up, but in twenty-four hours, sometimes less, I'm back to "empty."

And I'm starting to get very unusual, or maybe not "unusual" but completely unexpected, waves of odd and unwelcome energy. Today, for example, I had gone out to a restaurant with my wife and two friends. Had a lovely time. It completely drained me. I stood up, getting ready simply to go to the next room, and I was washed over by a wave of not just fatigue, but darkness--this has been happening for days, but today I was finally able to give it a name.


I don't know where it's coming from. Or what it's grieving. But it's sad, and it's stuck, somewhere.

So now, I'm looking for ... whatever it is I'm supposed to find, so that the scales will fall from my eyes and move on to wherever "on" wants me to be.

This too, is a gift. I just don't know how to unwrap it. (Yet.)

Wednesday, March 25, 2009

A new prescription

Had an interesting chat with my doctor today. He asked me what I do for fun, nowadays; the answer is "nothing." And that's been the answer for a very long time, even before The Diesease. Frankly, for way too long I haven't really been able even to think of anything that would simply be fun, much less something that I do for fun. He also said that I had mentioned the same Bad Habit from my Wild Days back in college several times, did I need for some reason to revisit that dissipated state?

And then it dawned on me... what I've been missing, and missing for a long time, isn't the state of dissipation, but the fellowship with the friends I'd get dissipated with. What I miss...are friends. Not friendly acquaintences, not cronies, not amicable colleagues: real, true friends.

It's not that "people don't like me" or "I don't like people." The friends of my college days were dear friends, wonderful friends, really smart, clever, imaginative friends... and there was something, for lack of a better word, lofty, about the affection we had, and still have, for one another, even a quarter-century after we all went our separate ways. ("But time and change shall not avail/to break the friendships formed at Yale," the alma mater says, and it's quite true.) And it's not the dissipation I miss, not at all: it's the joy of getting together with friends, specifically for the purpose of gently self-indulgent fun, and having that fun, that I miss. The joyful gusto of sybaritic enthusiasm. Fellowship. Heart-to-heart talks. And laughter--loud, long, and frequent laughter.

I have been known to say (all too often, I realize as I look back at it) that all of my friends are busy with their children, located on the East coast, or both. Or dead. That's both "only 'sort of' true" and "much truer than I like to think about."

So the prescription for my new treatment is... to reconnect with friends. And, with said friends, have fun.

Beats the hell out of injecting yourself with interferons that shred your immune system, or something like Tysabri that'll maybe turn your brain to jelly and kill you. And a lot cheaper, too.

Sunday, March 22, 2009


One thing (among many) that I've been sensitive to lately has been cravings; sometimes I crave fresh vegetables, sometimes lamb (which has been recommended by every one of my health-care providers), or some other yummy treat. Nothing like the apocryphal "pickles and ice cream" cravings of pregnant women on sitcoms--something very concrete, that I associate with something specific (whatever it may be) that my body wants.

Until a week or so ago. I stopped wanting anything. Anything. I haven't felt hunger for a while (the whole "nerve malfunction" thing), but I have at least wanted to eat things. Not any more.

I was telling my wife about this, saying that "I wonder what the MS is trying to tell me, with this sudden change."

She said, "Maybe it's telling you... that you have MS."

I really have been trying to regard this as a spiritual journey, but sometimes you gotta wonder... sometimes maybe a cigar is just a cigar, y'know?

Tuesday, March 17, 2009

Rest (continued, sort of)

So I'm two days into my "week of rest." I had to fix the home's wireless access device; I spent an hour or so helping a student of mine, reviewing some work that both he and one of his other teachers are getting antsy about getting finished, and then about a half hour writing some computer-related advice about the Internet for a friend who needed it, and then went to lunch with my wife because I haven't seen her much over the past week, too much stuff happening with tech week at the school play.

It was profoundly draining. Surprisingly draining. I was out of juice before we left the restaurant, ten minutes away from home. I think I used up all the benefit I got from yesterday's day off, and I'll probably spend the rest of the night in bed, recovering from a day I was supposed to have spent "recovering."

Tomorrow, acupuncture; if something is blocked, that'll get fixed, but it often doesn't stay fixed. (That's a different problem.)

My doctor tells me that he has a mantram he uses, when he really needs time to be his time; and as nice/deserving/worthy as the people who want him to spend his time on them, he uses this to explain to them how he is, unfortunately, unable to help them out. It goes like this:


Strange that one of the gifts of MS might turn out to be simple honesty: to be truthful about your own need for self-preservation.

Jon Bruno, the Episcopal Bishop of Los Angeles, says that the Biblical story about giving your cloak to the man who asks for it is about sharing your abundance; that if you have enough to share, you should share it with those who have nothing. To give away what you need, what you must have simply to take care of yourself, seems like it's virtue (unselfishness), but it actually shows that you're a poor steward: specifically, a poor steward of what has been given to you. It's nice that you've taken care of someone else, yes, but harming people is just as wrong as helping people is right, and here, you're harming yourself.

Becoming a good steward of your own health. Another interesting gift of MS... one which, if I can get out of my own way, perhaps I will actually learn.

Saturday, March 14, 2009


Years ago, a three-treasures herbalist told me that the way to recover is to ... recover. That what we tend to call "taking it easy" isn't real rest, and it certainly isn't recovery: We don't go in to work, we work at home, but we keep working; or we do some of our work instead of all of it (possibly doing things badly and thus creating more work for later, maybe also accruing additional guilt/negativity in the process); in the modern "wired" era, we just take a "few minutes" to check our work e-mail, just to see how things are going...

It goes on, in ever so many ways. What doesn't go on is healing.

So, he told me, you want to rest? Then rest.

Seems obvious, doesn't it?

So when was the last time you really rested? Really?

I thought so. About the same time as I did, probably.

Over the last month or two, I've taken a couple of days really, really off. Did nothing. Didn't do some-but-not-all of my work and mislabeled it as "taking it easy." Actually, I barely got out of bed.

Danged if I didn't feel better the next day. Got more real work done the next day than I had over several days previously.

Strange, isn't it?

So on my doctor's orders, I'm taking next week off. Really off. Really, really off. And really, really resting.

It's been a long time since I've done that. Wonder what that'll be like.

Wednesday, March 4, 2009


An interesting wall I keep running up against, coming at it from a wide range of different angles/approaches...

Something in my life needs to change. Something deeply, profoundly, fundamental to my very consciousness needs to change.

I have no idea what.

That's why I say "profoundly fundamental;" whatever it is, it's so integrated into my current consciousness that it's at the level of basic assumption (like the way you assume that things fall if you drop them--it involve things so basic to the way you think the world works, you don't even notice that you actually assume it's going to happen before it does). And it's so fundamental to the way I think that I can't see that it's what I'm doing.

I have noticed that The Disease has already brought a lot of changes, many of which I like very much; one of which being my response to people in distress, my compassion and patience has, by and large, gone way up.

But I feel like something is waiting to change, wanting to change, needing to change. And I have absolutely no idea what it is, or what it wants to become.

I have always felt that life teaches you lessons progressively. First, it taps you on the shoulder. Then it pokes you. Then it pokes you harder. Then it slaps you in the back of the head. Then it hits you in the face with a two-by-four. You're really best advised to figure out what it's trying to teach you before it gets to the "drives over you with an eighteen wheeler" stage of the lesson-delivery escalation, because if it gets that far, things are going to be really, really Bad.

MS is a pretty serious poke, in terms of a "there's a change I want you to make" signal. I really want to figure out what that change is, before the universe decides it needs to try even harder to get my attention.

Believe me--you have my attention. It's your intention that I can't grasp.

Sunday, March 1, 2009


Now, let me begin by saying clearly, without hesitation or qualification, that I have no desire whatsoever to be disabled, laid up, or otherwise sidelined by The Disease.

What I would like, though, is either to be clearly well enough to go about my business unhindered, or clearly sick enough to say unapologetically that I need some time off.

Instead, I'm living in a puddle of uncomfortable indeterminacy, "sort of" able to function just fine, but simultaneously "sort of" not able to function well, sometimes on the edge of functioning not at all.

And for my convenience, I find myself completely incapable of explaining exactly what's wrong.

Now, yesterday I did (after a way-too-long period of writer's block) manage to finish a piece of music, but only by doing work for an hour or so, then off for ten-plus minutes, then work for an hour, then off for a while. It took a very long time, but at least I got it done.

Now, I can hear it now... it's hardly "bad" that I need to go outside and sit in the fresh air every hour or so, or a "loss" to not be able to do four hours without stopping powering through. What's "bad" is feeling that something's...wrong. Not sure what. But I need to go outside and sit in the air now, or things are going to be... bad. Not sure how.

Not sure, not clear. And not comfortable.

Not pleasant.