Friday, July 31, 2009

Better (or at least, different)

BIG acupuncture treatment yesterday; treating two of my Fire officials, during the Fire season of the year, during a specific time of day during which these two officials have a little extra "oomph." Plus I got unblocked and got a couple of other I-don't-know-what-they-were-for points as a bonus.

On the drive home, all the colors of the city lights were brighter. Pretty cool.

Anyway, I was much better this morning. Walking is still pretty darn strange right now, and I'm still more than a little low on energy, but at least life is worth living. And, at least the non-spinning spins are better.

Doc said that vertigo, like I've been suffering from the last couple of weeks, is just one of the many typical bonuses we get, free with our MS. I asked him if I was having "an attack" or "an exacerbation" or whatever they call it... and he said something about how he didn't really think much of the official MS terminology was accurate, useful, or helpful; but he didn't go into much detail, we had other things to talk about. Given how vague most of the effects of this disease have been (I "sort of" have trouble doing x, y, z, things "sort of" hurt, sometimes), using terminology that implies some sort of discrete values--now you're having an attack, now you aren't--creates an illusion of certainty and clarity, in a situation where the truth is foggy and ambiguous. It's trying to put a quantitative overlay on something that is essentially qualitative; so in one motion, it misses the point and encourages you to think that you actually understand something, when in fact you don't; and now you're even more ignorant because you don't know that you're ignorant.

But he did give me one piece of very clear advice. What do you do when something like this hits you? Ride it out. Because really, that's about all you can do. "Some people would give you drugs," he said, "but they'd make you feel worse." And as much as I'm not enjoying a lot of this ride, at least I'm not having what little pleasure I have extinguished by "helpful" medications. (Let me again emphasize, dear reader, if you need them, then you need them, and I don't have anything to say about that. But I don't, and my doctor doesn't think I do either, so I don't have anything to do with them.)

So, with any luck, I'll have turned the corner out of this particular dark alley.

With luck.

We'll see.

Tuesday, July 28, 2009


A friend of mine in New York City (quite literally a world-class author, I recommend his work highly) is a student of a particularly "hard" style of tai chi. He was going through a rough period, and wondering if he should just pack it in, when one of his fellow students, a diabetic fireman, asked him bluntly:

"You just gonna give up?"

When a diabetic New York City fireman asks whether you are going to "just give up"... there's just no way to say "yes."

My friend shared this story with me years ago, and it has kept me going through all sorts of dark times... but right now, I'm wondering whether I have, in fact, given up.

I have nothing even remotely resembling "gumption;"if you ask me any question that includes the four words "what do you want," I can't answer them except at best in the broadest, most general terms; I don't have either the energy or the interest to do anything that would make me feel more energetic (a problem I've had for years before the MS diagnosis); and I'd be hard pressed even to tell you what would make me feel "better." Or even "good," for that matter.

The energetic treatments that for years have been able to pull me out of whatever funk I was in (acupuncture, qi gong) make me feel better for oh, a few hours at most. I went to yoga the other day, felt great afterwards for an hour or two.

I'm not feeling sorry for myself in the least. I'm just floating face down in a pile of dirt at the bottom of a hole. I'm not what I'd call "depressed." I've been "depressed," I know all too well what that feels like. I really don't think I'm depressed. I'm just... dirtbound. And the random perpetual "sort of" dizziness/fatigue/etc. that has been plaguing me for more than the past month is not helping. At all.

"Well," the voice says, "If you don't like the dirt, dig yourself out."

If I had the energy to dig myself out, I'd have done it already. I mean... duh.

I don't have the energy to get up enough "want" to start digging myself out, much less to do the digging.

"Do not be conformed to this world, but be transformed by the renewing of your mind." So the Good Book says. And it's at the "renewing of my mind" point that I'm really blocked.

Now... how to unstick that? It's easy, just takes work.

Oh yeah. Work. As we remember from our high-school physics, work requires energy.

Requires energy. Great.

Thursday, July 23, 2009


In a response to my recent posting on the non-pseudo-ness of "pseudoexacerbations," Lisa Emrich very thoughtfully referred me to some of her excellent articles at on that subject, and on the subject of heat sensitivity in MS.

I certainly won't dispute how the MS Society has defined "pseudoexacerbation." I would assert, however, that there is a certain denigration of the reality of an MS patient's experience in calling something that is very real to the patient, "pseudo." Just because it doesn't last as long as some of the other inconveniences this disease thrusts upon me doesn't make it any less real, or any less significant in its impact upon my daily living. For a language that conveys a lot of temporal information in the conjugation of its verbs, English may be lacking in adjectives that describe something as being small without connoting unimportance, or to describe something that is of short duration but feels as though it was of long duration.

(Reminds me of an old joke: the definition of "relativity" as being "the difference between a minute sitting with the love of your life and a minute sitting on a hot stove.")

But to the "hot water" test and schizothermia: One of my most puzzling/entertaining/annoying silly symptoms of the MS is different perceived temperatures in different zones of my body. The soles of my feet are too hot. The tops of my feet are too cold, and that cold runs up to my knees. The front and outside of my right thigh is pretty cold, my left is cold too, but not quite as bad. My core tends to run hot (always has).

So, in the 90-100-degree temperatures typical to southern California, my upper body is horribly uncomfortable, and my legs are very, very happy. In the winter when the temperature "drops" to the 50s or lower (yes, my non-LA friends, I hear you laughing at a winter that "drops" to the 50s, but bear with me), my core is comfortable and my legs suffer. Last year, my legs were so cold in the summer that I had to go to the local pool and sit in the hot tub--but I could only do that at night, it would have been too much for my core to do that during the day. A "cool" 85-degree pool, the temperature they recommend for MS people, I can deal with in the summer, but much cooler than that I can't deal with at all. So, in the Goode Olde Days, would they have been able to diagnose me using the "hot water" test? Quite possibly not...

This drives my Chinese herbalist crazy. Too hot? He can cool me down. Too cold? He can warm me up. But this part warm, that part cold? "Very difficult case," he says.

Last night, I got up to feed the cat around 4AM. I was simultaneously hot, sticky, and cold. I wanted to kick on the air conditioner and put the heating pad on my right thigh (I didn't; I was afraid I'd blow a circuit breaker.) Oh well... as Roseanne Roseannadanna used to say, "If it's not one thing, it's another."

Later today: Heller bodywork, a new approach to working some of the kinks out of my legs. I don't know anything about it; but having been Rolfed, I can only imagine that it involves elbows. Tomorrow, Iyengar yoga, which thank goodness will be elbow-free.

You take what you can get, in these troubled times.

Wednesday, July 22, 2009


I follow Seth Godin's blog from time to time, because I find his enthusiasm for tireless, creative problem solving to be interesting, and sometimes surprisingly inspirational. The entrepreneurial "business head" is one that I probably should be able to put on more easily, since I'm at least ostensibly in business for myself as a composer; I find it uncomfortable and unnatural, but strangely fascinating nonetheless.

A recent entry sings the praises of bicycling uphill, "because that's where the work is, the fun is, the improvement is."

Well, just walking nowadays, I feel like I'm walking uphill. Or through mud. Or through mercury. (Depending on the day.) And yet, I don't see it as an opportunity for fun and improvement. Though I do see it as "work."

Well, one out of three's a start.

Of course, on some level, I actually do think that I'm on a road of improvement--not for the disease, or just coping with the disease, but for--as the Hitchhiker's Guide to the Galaxy put it--"life, the universe, and everything." Still haven't gotten to "fun" yet, although again on some level, it's waiting to be found, I'm sure.

Well, truth be told, right now I'm still at "I hope" rather than "I'm sure."

Time will tell.

Monday, July 20, 2009


So I'm finally connecting the dots between my puzzling new difficulties and the heat.

I've known for quite a while that people say MS doesn't like heat. I've finally figured out how that manifests itself in my case. It was one web author's description of "feeling like walking through mud" that finally made the connection. I was in downtown LA the other day, having a horrible time just making my legs move. Today, in the A/C at home, I don't have any of those problems. calls such things "pseudoexacerbations." Pseudo, I think, because they don't fit into the official "definition" (if you can call it that) of an exacerbation. But let me tell you, there's nothing pseudo about it. And its onset and "offset" are better defined than anything I've had that maybe was a "real" exacerbation.

Western medicine excels in areas that can be quantified. Sure, MS lesions can be identified and counted using an MRI, but its impact on your life is qualitative, not quantitative. It's no less real than something with a numerical titer, but because you can't meter it, the West can't even understand it, much less help you. The pharmaceuticals that are thrust at all of us don't even begin to address your quality of life; their manufacturers themselves are the first to tell you that. "Quality of life" is where I'm getting the biggest hit.

Western pharmaceuticals are driven by profits and probabilities; all the research relies on the "law of large numbers," they gauge results based on the average of the group, not the impact on the individual. MS doesn't work that way; every sufferer's experience is different. There is no middle of the curve because there's no curve. The West is, basically, completely lost; the questions they are so good at asking (variations on "What's the number") are the wrong questions. They can't help you. Giving things names like "exacerbation" makes them feel better, but that's all they got; they can't really tell you what an exacerbation is, or whether what just may or may not have happened to you was an "exacerbation." Of course, just ask any MS patient, and they'll tell you right away--but their answers will all be different.

Now if the DMDs help you, they help you. If steroids or other first-aid medications help you, they help you. As a friend of mine from Hong Kong once said, "If I have a hole in my side, I don't go to a Chinese doctor." But if these magic bullets can't help you, they won't. If there's one thing I've learned in my experience with the best of what Western and Eastern medicine have to offer, it's this: The thing that will help you, will help you, and that's all there is to it. Don't waste your time with the other stuff, because it won't help you.

Heavens, how did I get onto that rant? Oh yeah. "Pseudoexacerbation."

"Pseudo," my ass. Or should I say more accurately, "My legs."

Saturday, July 18, 2009

Softly spinning (minus the spins)

Well, I'm pleased to report that the nasty spins-without-the-spinning was indeed a treatment reaction. It was better two days after the treatment than it was the day after, and it has been getting steadily better.

'Course, it hasn't gone away, really. It's still there. But at least today, it's managable.

I was encouraged this morning, reading another MS sufferer's blog about some of her current dark days, to be reminded that these intermittent bouts of "things are going very badly" is just part of the opportunity cost of having MS.

Now, here's a thought: We all know that, from time to time, we have fallen prey to various bugs--flu, colds, what have you. We can surmise that probably, we will again. And that part of the process of those diseases includes "bad days." Days when we're suffering. Days when we can't do insert-favorite-activity-here because we feel so crappy. And you are 100% sure that this is something you'll have to deal with again, life being what it is. But there's no cloud hanging over us, either from the experiences we've had or from the experience that we expect we might eventually have. It's just part of life. No big deal. You get over it, hang on as best you can through the "suffering" part of the experience, then move on when it's over. Like I said, no big deal.

Scene change: Now you're an MS sufferer. It's not an itinerant "bug" you've fallen afoul of, it's a permanent, uninvited guest. Now, part of this disease process involves occasional (if you're lucky, only occasional, often more frequent than you'd like) bad days. Days when you're suffering. Days when you can't do insert-favorite-activity-here because you feel so crappy. And you are 100% sure that this is something you'll have to deal with again, life being what it is. But somehow... this experience comes with a cloud.

Is it because this is something we'll never be free of? We'll never be free of cold and flu bugs, somehow that doesn't bother us... but this is different. OK, so it's different: different how? Is it because we can't really connect to others when we tell them what's going on? Everybody understands "I have a cold." But "my nervous system is at constant war with itself" isn't really resonant, the same way. (I've certainly experienced this; say "I can't do xyz, I have a cold" and you get immediate understanding, say "I can't do xyz, the MS is acting up" and somehow you're not trying hard enough, "Sorry you're feeling bad but we need you to do it anyway," or something else equally unsympathetic...)

Is it because the symptoms are both the same every time, and different every time? A cold is pretty much a cold, but an MS attack/flare-up/exacerbation/whatever you want to call it... everybody experiences it differently, everyone defines it differently. Whatever's happening may be hard to describe, but you know that it's The Disease, making its presence known.

My doctor says that he has a mantram that he uses, when people don't seem to understand that despite what they want, you need your space/rest/recovery, and you're going to take care of yourself rather than them:


Such a small word. I understand why it's hard to hear; why is it so hard to say?

Thursday, July 16, 2009

Spins (minus the spinning)

Not a good day.

Do you remember childhood city-park mini-merry-go-rounds? You know, those little things about six-ish feet across, and you'd get on them, and spin and spin and spin and spin, and then you'd get off, and the whole world was still spinning underneath you?

That's very much where I am today. The silent high pitched scream, the somehow-unbound-to-the-world-ness, all the concomitant "side effects" of the over-spinning, minus (thank God) the actual spinning sensation.

I had intended--planned--on going to go to yoga class today, a "challenging conditions" class. My wife and I have been talking about starting yoga for months--OK, years--and today was going to be the day. I spent ten minutes outside doing something around 9AM this morning, and I knew something was terribly wrong as I was walking back into the house.

Called my doctor, who very kindly returned my call very quickly after I called him; once he understood exactly what my symptoms were, he said that yes, this is a very typical MS experience. It ends when it ends, sometimes it lasts for minutes, sometimes for days; just hang on for the ride. He said it also might be a treatment reaction, the technical term for a bumpy ride post-acupuncturing while your energy/body/everything processes the changes the treatment is putting you through. (It's not exactly a "side effect" as such, but it's an expected part of the treatment process. When you're cleaning the kitchen and you suddenly discover something that hasn't been cleaned in far too long, and it looks or smells like long years of neglect and decay? That's the basic idea.) I suspected as much, I've been going through a bit of an emotional roller coaster as well.

His prescription: Lay low (his exact words). Stay cool, try doing the "legs up along the wall" yoga inversion (sorry, at the moment I've forgotten the name for that position). Eric Small, famed Iyengar-for-MS-yoga instructor, recommends this last item for all of us "neurologicals" as he calls them; according to my doctor, he says we should do it first thing in the morning every day, just like brushing our teeth. I did in fact do that, and while I was in the position the non-spinning spins did indeed go away. Of course, they came back when I stood up, but it wasn't as bad. I'm going to dig out Small's yoga book, which has the directions for the props you're supposed to use, and go back into that position.

I believe it was Robert Heinlein who said that the way to ride a tiger was, "Hang on to its ears and try not to fall off." Well, I guess that's the plan for the immediate future.

I was going to end with something profound and philosophical, something about patience and acceptance being gifts of MS, which I suppose they are, but I'm not really in the mood for profundity, philosophy, patience, or acceptance; so, then I might have attempted some comedy by juxtaposing that with something like "Well, SCREW patience, just gimme my freakin' REMISSION and leave me alone;" I might then have turned to some wry musings on the differences between true transcendant acceptance and dead-end defeatism.

About all I can muster right now is...

Well. Here we are.

... It's a start.

Wednesday, July 15, 2009


Back from the acupuncturists; one of the usual, but fortunately least-painful-to-clear, blocks, probably brought on by The Incident last week, and which may have had something to do with the driving problems I was experiencing yesterday; and best of all, one of the inner-forearm points I have to get all too often (Inner Frontier Gate) that always hurts and is emotionally racking, this time was neither.

Next week, I think he's going to start an especially powerful treatment sequence ("trippy" is the way he described it), from which I'll be need to be driven home. Having had his lysergic-esque treatments before... it's going to be everything he says it is, and more, and driving myself home from that will definitely be a Bad Idea.

I just encountered MS, a Life of Learning, a very eloquent blog by a very eloquent lady. She writes frequently about how all of us MS-ers have to learn about the disease differently because it affects all of us differently, and that's also why we all have to meet it differently. Her latest entry talks about things that she's had to overcome to be a full participant in her daughter's life. It especially resonated with me, because my MS experience has certainly involved confronting how, and whether, things have been "within reach." Too many questions...
  • Are you capable of doing something?
  • If you are in fact capable of doing it, "can" and "should" are completely different questions... and we have different levels of "should." Morally or emotionally should you do it? Physically should you do it?
So many things that I used to do without even thinking about, I now find just out of reach. So... let it lie where Jesus flang it, as an old colleague of mine used to say? Or stretch, and reach for it? And if I decide to stretch, what will it really gain me? What will it really cost me?

Ah, another of the gifts of MS. Honesty. Because self-protection is one thing, but hiding from the truth because you don't want to look at it... well, that's just a waste of energy and time, the two things MS immediately reminds you that you do not have in unlimited quantities.

Tuesday, July 14, 2009


In Robert Heinlein's Stranger in a Strange Land, one of the characters knows some sort of Martian (literally, he's from Mars) technique to twist things at a 90-degree angle to normal 3D space, along some fourth dimension, which makes them slide out of normal space and disappear. Forever.

I feel like I'm slowly sliding along that mysterious out-of-normal-space line, gradually becoming further removed from everything.

Driving is becoming a little too challenging... I feel like I'm not present enough to pay proper attention to the world, much less the road. I've stopped listening to the radio, to music, to anything, because I feel like I'm barely paying enough attention as it is. I don't think I'm so disconnected that I'm a danger to myself or others, but it's feeling like it's getting mighty close...

It is, of course, also painful, the constant pressure on the sole of my right foot, the constant tension required to keep the right pressure on the pedal. And oh yeah, every once and a while I lose track of where precisely the brake pedal is. Trust me, nowadays I leave a lot of room between me and the next car. It hasn't been an issue... yet... but I'm doing my best to make sure that if it becomes an issue, it doesn't become an issue, if you get my drift.

I'm not depressed--I've been clinically depressed, I know what it feels like. But I don't have any real interest in anything. I'd feel bad about it, if I cared about anything. Which I don't. It's gotta be annoyingly challenging for my wife... "Dear, what do you want for dinner?" "I don't know... " "What about Thai?" "I'm not sure I'm really hungry for anything... " Of course, it doesn't help that the MS has kinda put the kibosh on hunger pains in general, but I used to like eating, even when I wasn't hungry. Now... I don't really care.

Now, I just checked out the studio, it was just repainted today, it's a lovely yellow; and just standing in the room, I felt better. The sparkly light I talked about in an earlier post made me feel better. I'm hoping that once everything is completed in the studio, maybe I'll find some enjoyment in life again.

The magical new studio light.

Acupuncturing tomorrow. Maybe that'll help too... I am totally, 100% convinced that long-term, that's the only way to go, and that long-term, it's making a tremendous difference. Short term, at least as far as "enjoying being alive," it hasn't quite hit the mark yet (at least, not that I can tell). Usually, it does; usually, it works like a charm. Nothing seems to work, recently. Nothing. But, as my Qi Gong doctor calls me, I'm trying to be a "patient patient."

As my wife said once, "Well, you've had the relapse... I'm waiting for the remitting part."

So am I.

Simple joys

This summer, the studio is getting rebuilt. I had been promising myself for at least four years that this summer, I'll fix up my studio. It's finally happening, thanks to the extraordinarily generous help of my wife and one of my former students.

Today, our neighbor, an absolute craftsman (oh, you should see the Rolls he rebuilt, inside and out, stellar bodywork) will be over to start painting it. The Feng Shui for Dummies book recommended, due to its position in the house, that we should go with yellow; one of my friends who does really scary energy-manipulating kung fu said I should have red, white, and yellow in my environment; and those colors correspond to the colors of my five-element "causative factor." Too many votes from too many unconnected sources not to listen to them; so, yellow it was. Besides, a lot of my acoustical treatment is black and dark gray, so I needed it to be a little brighter. And it has been white for ten years, it's time for a change.

But on to the simple joys: My wife and I went to the lamp store to pick out something new to put on the ceiling. (I didn't want to trust my own judgement; sets, I can decorate, homes I need her help on.) I was looking at the various options, and then I was drawn to one in particular: bright, full of light, with crystal ribbons, rather than crystal spheres. "That one," I thought.

My wife came over to where I was standing, looked at the various crystal/sparkly lights, and then pointed to the very light I had chosen, and said "That one."

Things haven't been particularly enjoyable recently, the MS is discontented with something and is making its annoyance known, quite annoyingly; but when my wife and I point at exactly the same thing and say "That one," it's a wonderful, wonderful feeling.

I haven't had a lot of wonderful feelings for the last... well, too long. "Wonderful," when it finally comes for a visit, however small or brief, is ... simply wonderful.

Saturday, July 11, 2009


I visited my kyudo group for the first time in over a year. They're all gearing up for a seminar in South Carolina; seminars are where the Big Kahunas from Japan give lectures, demonstrations, and workshops, and then the whole thing culminates with a mass test where everyone shoots two arrows and then either does or doesn't get a promotion in rank. Kyudo doesn't have visible "belts," but they use the same terminology as other Japanese martial arts for black-belt levels ("shodan" is first level, "nidan" second, and so on, the teacher/adjudicators are usually "hatchidan" or eighth level). The further along you go, the harder it is to get promoted. The group kinda wigs out a little as they gear up for these things, and they're packing their bows tomorrow to ship ahead to South Carolina, so I came out of "retirement" and brought them fresh-blueberry scones as a good-luck present. I used to bake scones for class every week, I know I miss doing that and from the smiles on their faces, I think they miss them too.

Kyudo is a very gentle, quiet, subtle art. The "Federation" style (so called because it is overseen by the International Kyudo Federation) is very particular about the precise way that every step is executed, it's an "external" style; the style I practice is more "internal," we use the externals as diagnostics to help show us whether we've done the internals correctly.

I really think that kyudo exemplifies the road we have to take to live with MS. It's about listening; it's about getting and staying out of your own way, and out of the way of what you're trying to accomplish; it's about truth. One of the first things I ever heard my teacher say, and what specifically showed me that I needed to study with him, was that "The bow and the arrow always tell you the truth about yourself."

The lesson that I took from tonight's experience was, "You don't have to do it (whatever 'it' is) 'big.' You don't have to be hung up on anything. An hour's worth of practice is an hour's worth of practice. If that's what you can do, that'll do. You wonder where to start? Tell the truth."

I definitely need to let tonight's lessons percolate for a while.

And I need to get back to the bow.

And I don't even need the bow; teacher spent a while talking about the virtues of "air kyudo," which is the way I first started learning the art. And bare-hand zero-equipment kyudo, even in my recent "sort of" states of indeterminate crapulence, I can do.

As always... we'll see.

Friday, July 10, 2009

Let me make myself perfectly clear...

A very frustrating day, dealing with work. It's summer, I'm "sort of" on vacation, but "sort of" on call as needed (damn, I'm getting tired of "sort of" as a qualifier) because as the Guy With All The Answers, Technically Speaking, sometimes they need me.

Well, I don't mind being called in to do stuff that only I can do. I don't mind being summoned with a "Help me, Obi-wan Kenobi, you're my only hope" call, when I'm the only one who can pull the enterprise out of its predicament, or pull the thorn from its paw, Androcles-and-the-lion-style. I don't (that much) mind stuff that I can do from my chair at home, via the web, e-mail, or remote login. But none of that is what's going on.

A couple of things happened today... they were tugging at my sleeves to do this Thing, and really, it wasn't my job to do what they were asking me to do. Not only did it not fit into my function within the enterprise, but I don't have the data to do what they wanted done. But they wanted me to be the one to do the legwork and wander around and collect all the little data bits that other people already have, but didn't feel like putting on a list (which is all they needed to do).

(I finally decided to help out because I felt bad for the person who would have been eventually stuck with the Flaming Bag of Poo, and I also thought that telling people that "Look, it may be my job to execute this list, but it's your job to WRITE the list, why do you want me to WRITE the list for you?" wouldn't make anybody happy.)

And then I heard that maybe there's a little grumbling that I haven't been around to help with the legwork that needs doing over the summer, the general scutwork of "now's our chance to get things ready for next year" that always goes on over the summer. And maybe there's a little grumbling that I don't want to go to a two-day training session for this fancy software package that, frankly, I'm never going to use; that although I recommended, I didn't select; that in all probability nobody's going to ask me how to use because nobody ever asks me anything; that I'm not going to be using, that the people who ARE going to be using will be taking at least a year to figure out how they want to make use of it, much less how to simply use the software.

And so, I'm wondering how to get a few points across...
  1. I've done major business-process-changing rollouts at this very institution before. I know how they go. The first year is spent re-engineering the product because the users won't want to use it as intended. I'm not going to be able to do that, and you probably wouldn't ask me to do it anyway, you'd be asking the developer who's handing all the nasty coding stuff. Being at the training won't enable me to do anything when re-engineering's necessary, because this is an end-user training, not a developer training. It won't tell me what I need to know: why do I need to go?
  2. I spent thirty years as a technical writer. For products that Fortune-500 companies use. That satellite factories use. If there's one thing I've learned from all of that, it's how to figure out how to use software. Very, very quickly. Just give me the goddamn manual--at least there's a manual, that's more than I usually get--and I can come up with the answer faster than most of the people here. If I was actually going to use this stuff, I wouldn't mind, but I have nothing to do with either its use or its implementation, and my suggestions towards either would be unwelcome (they usually are, people never like being told they can't do what they want to, even if doing it that way will set something on fire)... why do I have to waste my time just to make you feel like "Robert's participating?" Robert's a quick study. If you ever do call him, it'll be because something's gone south that wasn't in the training, and I'm the only one who has a prayer to figure out what to do. If I have to go to the training, I'm going to spend a lot of the time lying on the floor with my legs on a chair or up the wall. Nothing personal, I just can't sit for hours any more. What part of "I have MS" don't you understand?
  3. You're not happy that I'm not interested in doing "legwork." Do you think I'm walking with this stick just as a fashion statement? Do you think I totter into things and have to grab on to stuff to keep from falling over as performance art? If there's one thing I can't do for you, it's schlepping stuff. My legs don't work properly, that makes "legwork" the wrong assignment for me. What part of "I have MS" don't you understand? Am I going to have to get a wheelchair before you'll believe that maybe I'm the wrong person to ask to carry shit all over the place and stand up behind things for hours?
  4. My doctor told me I shouldn't even be taking your calls. I came in here today anyway, because I didn't want the enterprise to crash and burn and you don't seem to be interested in doing the simple stuff that I told you was all that was required to avert said crashing and burning. "But I need you to do this for me," you say. Your doctor told you to stay home? Well, you were sort of sympathetic, I'll grant you that. (Great. Now I get "sort of" from other people.) What part of "My MS is acting up and my doctor wants me to stay at home" don't you understand?
I try to never play the MS card unless I really have to. I'm playing it now before I really really really have to, which is where I'm going to be if I push myself too hard in July's heat. I got nastily overheated one day just sitting for too long in an office with no A/C, and very nearly couldn't drive myself home.

I mean, I try to use simple sentences. "My MS is acting up. My doctor says I should stay home, and not do anything work related." I don't think there are too many interpretations possible. And yet, they're disappointed that I'm not willing to "pull my weight."

Well, I could "pull my weight" better if I walking was possible without a stick, don't you think?

Wednesday, July 8, 2009


A good, strong acupuncturing today. My doctor told me that he "reconnected my heart," which believe me, made a very big difference.

He also said that the "suddenly a lot of things are just plain over" effect is common among MS patients especially, and also with other diseases. I'm having much less trouble with "I can't walk as well" and "I can't crawl around the rigging and do all the theater tech stuff I used to" because that was just stuff that I would do. It was gonna happen eventually, anyway, and thank heavens I've got help so all I have to do is point and say "Hang it there" instead of doing it myself--which really, when you think about it, ain't all that bad. Now, playing the organ, something that's also on the "maybe you can't do it anymore" list, that's different... the organ has always been tied up with what I feel that I am.

Which, of course, it both is and isn't.

I'm going to seek the path of "relearn how to play the instrument" before I take the "give up playing the instrument" path. Do some other gentle work on my legs, maybe. (My wife would chime in here, "MAYBE???" OK, dear, "Definitely.")

So, in the meantime, I'm going to take a little time and work on "accepting 'doing less,' at least for now." I'm going to do some stuff that's both symbolic and practical: get a haircut, take apart and rebuild my composition studio, something that I've been promising myself as a "summer project" for at least three years: something that I couldn't do in earlier years because I had "too much to do," and it was too big for one person anyway and I had no help. But amazingly enough, this year, I have time and mental space to do it, and miraculously, I also have a friend who felt like he needed something to do and is very kindly helping me out.

Funny how that, at least, worked out perfectly. They say that the Lord giveth, and the Lord taketh away. Sometimes, it's the other way around: the Lord taketh away, and then turneth right around and giveth.

So, the score so far for our hero: Life, as you know it, over? Yeah, probably. Is that bad? Quite possibly not, but I'm still processing. Hope? Yes. Resolution of all those "sort of" issues? Not yet. Better? At the moment. And at the moment, that's good enough.

Tuesday, July 7, 2009

Thanks; doing and not doing

A very great and sincere thank-you to the kind people whose supportive comments responded to my recent post.

One of my big struggles with kyudo (Japanese archery, and my style is an "internal," contemplative style) has involved "doing." I'm a big "doer," it's got its advantages and disadvantages, but as a "doer," "not doing" directly confronts one of the very things you need to work on the most. My style of kyudo is more about offering and then receiving with open arms than taking ownership; the more you take ownership of your shot, the more you miss the point of the whole process. I'm currently at a bit of an impasse with the practice (a very interesting position, to be at an impasse with a practice centered around "openness") specifically because I'm not bringing myself to the bow, I'm still holding the bow away from me--I know I'm afraid of the bow, of something, and "doing" isn't going to show me the solution. Listening will--at least, I'm pretty sure it will at least get the journey started; but currently I can't hear what the bow is trying to tell me.

And that's where I'm at with the MS. The way through this disease's process is found by being open to what it's saying to you, not by contending against it. For a "doer," hearing "It's over" is very uncomfortable.

And yet, I'm absolutely nowhere near "giving up." My qi gong practitioner was very kind to me at my last treatment; he said, "You're a very patient patient--most people would have given up by now." But here's where being a "doer" has its advantages--let's say that I give up, I throw in the towel, and just run out the clock. I give up everything because "it's over."

But then, there's just one question: "Now what do I ... do?"

One of my dear friends from my college days told a panel at our 25th reunion that he had had some very dark times in his life, some crises within the family that by all rights could have simply put an end to the family; and yet, horrible as those experiences were, what he learned was this:

"No matter what happens, you go on; because 'on' is the only direction you can go."

So yes, "it," whatever "it" might be, might very well be over; and yet, we go on, because on is the only direction we can go. And no matter how weird and unsettling "it" being over may be--and it is both weird and unsettling, I haven't quite processed it enough to tell whether it's tragic or not yet--despite all that, I always come to the same question:

"Now what do I do?"

Sometimes, there are advantages to being a "doer."

Thanks again for your kindness and support.

A dream

Last night, I dreamt that I was in a great struggle against a mighty wind. There was something supernatural, movie/comic-booky about it, it was clearly no ordinary wind and no ordinary struggle. The battle involved every square inch of my body, both within and without; every last bit of my soul; absolutely everything that I was.

"Victory" was not an option; the wind was too strong. To survive was the only victory possible.

Yet somehow, survive I did. And the wind subsided, and I looked about me, and I recognized nothing; all I recognized was that nothing was the same.

And then, two words, and only two words, came to me:

"Now what?"

Monday, July 6, 2009


Some things in this entry are going to sound very dark. Don't worry. Really. Anyway, on to it...

Strange stuff, this weekend. I played a church service, had an unbelievably hard time of it. I've been doing these things for something like 36 years. Challenging? Sometimes, yes. But difficult? Never. But last Sunday was.

I nearly slid off the organ bench while playing one of the hymns, pedaling the last note of a verse. Low E-flat, very easy to reach. Or so I thought.... That has never happened before. Ever. And yes, this organ console is very oddly proportioned, but still... Trying to play the organ has never caused me to slide off the bench.

The "Am I stoned? Am I not?" continues. Recently, I've been having near panic attacks in grocery stores. I'm not afraid of anything specific, there's just... some sort of terror welling up, as I walk around the aisles. I keep reminding myself, "You've done much more difficult, much weirder things than this. This is not a problem." And it's not a problem, really. But still, there's the terror. Sort of.

"Sort of" is getting very old.

There was a very large and significant incident the other day, I had spent too long in a hot room in a not even vaguely comfortable chair, and the MS went nuts and I had a huge upswing in the lower-body numbness, and driving to the bank got very weird, and I was afraid for a few minutes that I was going to have to call someone to pick me up and take me home. Fortunately, sitting in the air-conditioned truck, I think things cooled down enough, I got things under control, and I made it home without incident. But that was a well-past "sort of" panic.

But the problems that I have dealing with playing the organ, playing the service, problems simply dealing with the complexity of the world everything was much harder, and the meeting of everything was much more fruitless, than it as ever been before. I was quite concerned that maybe, "This was it." The end of a career, of a way of life. And as that thought hit me, I thought, I'm not at all willing to go there, yet...

Also quite frequently nowadays, I get up, and immediately get hit with a wave of "Bad idea." Not really vertigo, not dizziness, not light-headedness... damn, it's hard to describe. And I don't know if it really is a bad idea to be walking around, or it isn't and it just feels like it's a bad idea. I sit down, and shortly, I'm fine. But when I get up, it starts again.

"Sort of" clear, what's going on...

Which brings me to the dark stuff. (No, grim as the above was, that wasn't the dark stuff.)

A few nights ago, a thought hit me...

My life is over.

It's not about "adapting to MS." The life I had, the one I was used to, the one where I thought I was in control and "had it down," where I was comfortable and happy with what I could do and what I had always done, and would just keep puttering along with business as usual... is over.

This quote from Meister Eckhart was brought to me, courtesy of a friend's Facebook page; not that night, but very soon thereafter: "To be what you must, you must give up what you are."

And so it is: The life that was, is over. I have another life, now. Perhaps it is the life that was always meant to be, and I just couldn't see it, until the MS brought me to face it.

I don't know how to live it.


I don't know how to even begin to live it.


So, this is the new challenge: How to live this new life. Simple, no?

It is as I've often said: MS is no more than the human condition... except writ large, so large that we can no longer pretend to live in ignorance.

We'll see what happens next...

Friday, July 3, 2009


One of the things you learn very quickly when you have MS is that you only have so much energy; best you should spend it on things that matter.

I used to write music. A lot of it. And, if I do say so myself, pretty good stuff.

I still can. But somehow, I don't.

I was at an orchestration conference earlier this year, and I was struck by a very clear rushing realization that this was where I belonged: making music.

I like to think that I still can. But somehow, I don't.

A quote from Babylon 5: "Working. Yes, I can see... the geometries that circumscribe your waking life, drawn narrower and narrower until nothing fits inside them anymore."

There are certain things we have to do to provide what the Buddhists call the Four Necessities: Food, clothing, shelter, medicine. But there are also things we have to do to be fully alive.

And I seem to be spending an awful lot of time and energy, neither of which I can ever get back again, on what my herbalist calls "Send the monkey up the tree."

Just what the hell to I have to do in order to do the things that I have to do? Not just to function, to exist, but to truly live?

Thursday, July 2, 2009


I was just nosing about at the Carnival of MS Bloggers. A wonderful collection of all sorts of musings by all sorts of MS sufferers.

I am left with one very clear impression:

They don't know what the f--k to do with their MS, either.

Which is exactly where I am, right now.

I find this incredibly reassuring.

Wednesday, July 1, 2009


An interesting concept... "harari" is a specific acupuncture treatment that ties the time of year, or even of day, to the treatment.

I got my Fire element treated with a seasonal harari today (summer is the Fire season). I'll be scheduling a time-of-day harari later this month; each meridian has a two-hour window in which it has a greater share of the system's energy, and you can add "oomph" to your meridian harari by treating it during the correct time of day.

The metaphor for the Fire harari is that it "sweeps the ashes out of the fire."

I think that's been a great deal of my current problem... ashes that keep the fire from burning.

Even before I got off the table, I could tell that something... important... was going on.

We'll see where it takes me. Early indications are that it's going to be quite the ride...