Monday, June 28, 2010


... both forwards and backwards.

Forward: I'm having musical ideas again. They're not crystallizing yet, but they're cool. I gotta start writing them down (I'll probably start on one project as soon as I'm off "blogging duty").

And they're cool. At least, I think they're cool.

I drove my wife around town today. In the truck. Which I haven't done in months. She does most of the driving nowadays, she liked just riding for a change. Just like she did in The Good Old Days. Before... The Disease. (rumble, discordant rumble...)

Backward: I had some "miscues" with the clutch pedal while driving my wife. Nothing serious or problem-causing, but my wife hadn't experienced one of those before, and I'm sure it was even less fun for her than it was for me. And it was certainly no fun at all for me.

Nasty leg pains, because of the amount of driving and the time of day; early morning driving is easier, late afternoon (such as today), post much walking/standing/physical therapy/life in general, is not at all pleasant, and things hurt and cramp. Among other things too numerous to mention, but all of which are, as a simultaneous experience, quite unwelcome. Among other unpleasantnesses too numerous to mention.

Talked with physical therapist today about the yoga instructor's suggestion to get a second cane, if for nothing else, better symmetry. She handed me a second walking stick today and watched me walk with two, and she said I was much more balanced, and I felt like I was using energy more effectively, and thus using less energy, on locomotion. So, another "prop," is that a step forward (providing myself more efficient and better assistance) or backwards (needing more walking assistance)? Probably, on balance (forgive the turn of phrase), in truth it's a step forwards...

And there are a few at my workplace upon whom it hasn't quite yet dawned that "Robert isn't like everybody else" in more senses than twisted sense of humor, abnormally large vocabulary and wide skillsets, and penchant to spout Zen-like assessments, and maybe when he says he needs to have a little slack cut for him... he does. It's hard to spout things like "we need everybody to pull his own weight" when you're looking at someone who needs two canes to walk.

So, forward or backward, today? Net forward, I think... which is, if you're starting to wonder whether you have "slow decline" MS rather than "up and down" MS, motion forward, indeed.

Saturday, June 26, 2010

The right fit

My wife and I attended a yoga session this afternoon.

We had never met this teacher before, but (as I found out after the session) we both had the same reaction upon hearing the teacher's first words:

This is the guy.

It was a wonderful session. We spent about the first half hour on standing positions; for the first time, my legs got worked. And worked wonderfully. After all that work, I could still walk--the last yoga session, with a different teacher, screwed up my legs so badly I could barely walk for two days.

We talked with him after the class, for a bit. He agreed that the right teacher, plus the right style, equals the right results. And, after working with me for only one session, he detailed a couple of styles that were definitely not for me; and he was right, I had tried those styles, and they were a very poor fit. An "anti-fit," really.

So we're going to try to work with this fellow again. And maybe, again and again.

So, dear reader, if you've tried yoga and it has left you unimpressed/annoyed/unmoved, keep trying, but try something and someone that's completely different.

When you find the right style, and the right teacher: it's miraculous.

Friday, June 25, 2010

Victories are victories matter how small. They're victories. And I'll take 'em.

Drove to school today. In my truck. I haven't driven my truck for over a month.

It was fine. Everything was just fine, odd leg sensations notwithstanding. Driving--no problem.

Didn't get kakloads of work done at school, but I got something done (more importantly, I accomplished the thing that I specifically went to school to do). I was there much longer than I thought I'd be, I have no idea why it took so long. But it was fine. Stuff got done.

Went to a store looking into possible new shoes; didn't find what I wanted. But I made it to the store, into the store, out of the store, and drove to my next destination. No problem.

Went to the grocery store. Got some cool stuff to make for my wife's dinner.

Spent the afternoon working on said dinner. I was on my feet so long that my right foot and leg went nasty, nasty numb, much worse than they've ever been before. Scary, nasty numb.

I didn't care. I made my wife's dinner. I haven't made her a dinner like this in months. For 25+ years, I've made dinner, pretty much every day. Except, not this year; this year, my ability to do anything, and especially making dinner, has been bad. Very bad; and on the worst days, when standing at the kitchen counter was too much to ask of myself (and it too often was), I started to worry that my days in the kitchen were going to be at an end.

But today, I made my wife dinner. It hurt. I didn't care. I made my wife dinner.

Victories are victories. No matter how small.

Thursday, June 24, 2010


I spent much of today getting some new herbal treatment to try. I spend a lot of time at different herbalists, I've been seeing one particular Chinese herbalist for at least five years now, and he's a miracle worker with most "normal" ailments, but the MS is eluding even him. We'll see how this one goes... I'm going to be trying another one, recommended by my Qi Gong practitioner, in October--it takes that long to get an appointment with him, he's definitely a Big Cheese in this field.

So, the herbalism is definitely not on the "legitimate" radar, as far as Western medicine goes.

But I received kinder treatment, and more personal, more caring care, than I get from most--nay from almost any--Western practitioners.

Yeah, it's an odd treatment method. Many people don't approve. But the practitioners were kind. They spoke to me, the person, rather than simply facilitating me transporting my organ systems and orifices into the room where the machine was going to poke and prod, yeah it's gonna hurt, can't do anything about that and we don't really care that much anyway, thank you very much, pick up your parking validation and prescription from the girl on the way out.

Even the receptionists were nicer than receptionists at Big Medical Centers.

Yeah, the West has got double-blind statistics down to a finely honed science. Imagine if they had honed kindness and "treating the patient, not the disease" to the same level.

Your milage may vary, as the saying goes. I won't deny, gentle reader, that perhaps your experience has been different from mine.

But kindness can heal too. Perhaps we should all try a little more of that.

Wednesday, June 23, 2010

Ease; difficulty

What a difference a day makes. The solstice was two days ago, and on that day, I felt my universe click from "nothing is possible" to "possibilities waiting to happen."

The solstice marked the transition to the Fire season, and the season is fanning my own internal Fire. Last week, I wondered whether I would ever be able to handle doing anything, ever again; especially in the creative realm. And then, on the solstice, I began to hear music again, music that wants to be written.

And damn it, I better start writing it, while it's still trying to get out.

And yet, just making it through today sapped a lot of energy. I'm finding myself especially "spoon-poor" nowadays, and very much so, today. I spent a few too many seconds in a half-crouch picking papers off the floor, and darned nearly couldn't straighten up to standing; just trying to do so nearly zapped my energy so much that I wasn't sure I could make it to physical therapy.

Just functioning in the world is using a lot of energy, and that's energy I'd rather spend writing music while I can. Because, Lord knows, I spent too many months early this year with no music in my soul at all, much less wanting to get out and get written down.

Walking around the farmer's market this evening was so difficult that I nearly gave up and walked back to the car and let my wife do the shopping herself. Except I wasn't sure that I even had enough energy to make it back to the car... I came as close as I've ever come to full-on giving up. And it was sheer cussedness that kept me going. I wasn't even pretending to use "the power of positive thinking," I was muttering "No chair. No chair. I'm not giving up and going for the chair." (Wheelchair, that is, of course.) Frankly, I was as maneuverable on foot as I would have been in the chair, and probably moved no faster than I would have, had I been in the chair. But damn it, I wasn't going to give up.

Once I got home and took my shoes off, navigating around the house was much easier (although standing remains no fun at all). I've heard rumors of some sort of semi-sock semi-slipper, maybe that'll be a good compromise between going shoeless and suffering.

I'm seeing some new medical types this summer, one of them tomorrow; we'll be trying some completely different paths. Nothing "normal," at least as far as the Western canon is concerned; but then again, I've always had really good results going the route less traveled.

One of the joys of being an out-lier; the road is always interesting.

And this MS road so far has been, if nothing else... interesting.

Monday, June 21, 2010

Clarity; fog

Both clarity and ... well, certainly the opposite of clarity; but not confusion. English is very poor in vocabulary covering things that aren't concrete. There are many (far too many) words for different kinds of pain, but none besides "numb" to describe unclear or missing sensation. In describing unambiguity, English excels; for things that don't exist as measurable and discrete entities, it fails--or at least, comes up lacking, missing the mark. Or, to use the Greek word that eventually was tortured into the concept of "sin," hamartia -- a word that means "missing the mark," but of course doesn't exist as a single term in English; QED.

Perhaps I should spend the next 50 years learning Japanese, which is probably the only language that has the vocabulary I'm looking for. After all, from the English point of view, nothingness isn't, but from the Japanese spiritual point of view, nothingness is.

But to make the most of English's clarity, and to return to the topic at hand: some (mostly) good health news today. Had my yearly eye exam, the doc said that my eyes were fine, my optic nerve was in excellent shape, what visual oddities I reported that I've gone through recently were not in the eyes. Last year, she did some sort of disco test using a very Star Trek device, to get a baseline of my optic nerve responses (for someone who saw the first generation of Laserium at the Griffith Observatory, it was quite enjoyable simply to look at), and this year she said that I was clearly doing so well that there was no need to do it.

She also said that MS tends to age the eyes rapidly, so that at the ripe old age of 49, I had the eyes of a 59 year old, and she showed me what sort of prescription she would give me were I actually 59, and boy did that look great, so there we are. Another of the gifts of MS... would we call this "seeing the future"? I already know what 59 will look like... or perhaps I should say, what it'll see like.

But when things aren't clear, oh boy, they aren't clear. I have developed a very odd relationship with driving... being that I'm in car-crazy LA, it's drive or be imprisoned in your own home. Yes there is public transportation, but what is useful requires driving to get to, and the busses... well, let's just say, a 20-minute car trip can be a three-hour bus trip, only an hour and a half if you're lucky. I still am able to drive with no problems at all, I have full cognitive and visual functioning, I'm always in complete control of the car, but because of the odd sensations that my feet send me all the time, it's just deucedly uncomfortable, and often an entirely unpleasant experience.

This morning, I drove to school. Open freeway, no traffic, no problem. Got to school, had to parallel park, had to do a lot of brake use--unpleasant. Driving home--even more unpleasant. So, here's my conundrum: Could I drive to the store a block away? Of course I could. Would I endanger myself and others? Of course not. Would it hurt? Of course it would. Would walking around the store be unpleasant? Of course it would; walking around the house is unpleasant, a little less so because I can do it in bare feet, but once I have to go to shoes, it's no fun. Would the trip there and the walking around there make the trip back even more unpleasant? Probably.

So... how much do I want that ice cream, for dessert? Or those apples, for tomorrow's breakfast? Or those supplies to make quiche that'll be several days' breakfasts? Or could I wait and get them tomorrow (maybe things'll be better tomorrow, although honestly, it's doubtful) or make that "supplies" trip the next time we're out doing something else (not always practical).

Could I do it? Probably, but it's gonna be bad; I think that, at least, is clear. Should I do it? That's where the clarity disappears. Does it cost too much to do it? Does it cost too much to not do it? Does it matter if I do it? Does it matter if I don't do it?

"Acceptance" is something that I know is on my spiritual plate, with the whole MS thing. But right now, what am I supposed to accept? Not knowing whether I need to accept disability, not knowing whether I am actually "disabled" enough to accept being disabled, not knowing whether I'm missing the mark and actually am not disabled at all and need to just suck it up and suffer but that the price of that suffering is mobility? Somehow, "suffering" being the price of being able to get my own damned ice cream from the store is odd... is ice cream worth the price of suffering? OK, so I don't get ice cream tonight... does that have any meaning? Or am I supposed to simply not care about "not being able to just hop in the car and go do anything I want, any time I want" because in the final analysis, how important is that, really?

Or is this another lesson about unattachment... unattachment to my former way of life? Because one thing is clear... my former way of life is precisely that: former. (At least one thing is clear. Whether it matters that it's former, and exactly what part of it is permanently "former" and what part of it is simply on hold, for the moment... that's the opposite of "clear.")

Hey MS, just tell me what you want me to learn, and I'll learn it faster. Really. Let's give that a try, for a change.

Friday, June 18, 2010

The right match

Yoga is an amazing practice.

I know many non-MS people whose lives have been utterly changed by yoga.

I know many MS people whose lives have been utterly changed by yoga. Yoga is not a cure, but it is clearly an amazing source of support, and the leading proponent of the use of yoga within MS (Eric Small) is right here in southern California. I've met him, my doctor studies from him.

My own experience with yoga has always been one of three immediate, and sometimes vehement, reactions:
  1. Enthusiastic and positive: Where has this been all my life? More to the point, why have I not spent my life doing it? When can I do this again?
  2. Completely unmoved: I see no reason why people find this so life-changing.
  3. Angry: Get this away from me. Now.
It's not the teacher... it's the style. I went to a "yoga for special needs" session last night (often, "special needs" includes "pregnant," but there were other MS-ers there). It left me completely unmoved, it might have done something beneficial somewhere, but it actually made it harder for me to walk for several hours, because of the position my legs had to get into to do some of the work.

I did some ansara (another style) a few months back. It made me furious. Immediately. Even when I was in what they called "rest" positions.

I did Iyengar a few months back, and some more at the teacher-traning last weekend. It was simply transcendent. That, I have to do more of.

Maybe it's just my hypersensitivity to everything (which is exacerbated by the MS), but what works for me really works, and what doesn't work doesn't work at all, and I know immediately which way it's going to go. It has nothing to do with where it fits on easy/difficult, or pleasant/unpleasant scales. It's more about "this works with me" versus "this misses the mark, when it attempts to meet me or I attempt to meet it," or worse, "this works against me."

The way I perceive things, there's a big difference between "This is right for me, even though I suck at it at the moment, but it's the right thing to keep working at it and who cares about the 'suck,' I certainly don't" and "This is wrong. I can't deal with this. Get it away from me." Has nothing to do with the inherent worth or rectitude of the pursuit, or whether "everybody goes through this" or things like that.

But really... MS being what it is, life is hard enough doing things at which I suck but that I enjoy. I don't have the energy to do things that I love doing; why should I spend what little energy that I have doing things that piss me off? When I can spend that same energy doing something that is just as good for me, just as hard for me, but that I enjoy?

I'm going to Iyengar this Saturday. With luck, it'll be as wonderful as I hope that it will. The experience of Iyengar yoga has always been for me the experience of yoga that explains why people think so highly of the discipline.

And my doctor's orders for me, right now, is to enjoy myself.

And even doing a little of that (enjoying myself) would be a very, very nice--and long overdue--change.

Thursday, June 17, 2010


The Buddha said, "The foot feels the foot when it feels the ground."

The Buddha clearly didn't have MS. My foot barely feels the ground, barely feels itself, and what I feel it feeling, it actually isn't feeling.

Or is it?

Well... no. My foot feels cold, but when I feel it with something other than my foot, it isn't cold.

I'm sure there's some sort of lesson in that, but... I couldn't even begin to tell you what it is. Maybe when I'm enlightened, I'll understand it. But today... no.

I'm getting new sensations, in my feet and legs. They've been building for a few weeks now. Not accurate sensations, mind you. Just "new." They feel swollen, but aren't. Sometimes hot, sometimes cold, but unfortunately, often painful. Imagine overfilled water balloons, except filled with mercury. Vapor. And subject to higher-than-normal gravitational force, so the earth's pull on them is higher than 1g. My right leg has more discomfort and more odd/nonsensical sensations, my left leg has the worse motor control. It didn't used to be that way, I think... It's all a blur, really. It's hard enough to remember accurate information, much less to track how your nervous system is misinforming you.

Are these new sensations and new malfunctions indication that things have gotten worse? Or the "side effects" of a nervous system trying to adapt and rewire itself to become better?

Unknowable. Not simply unknown... unknowable.

Confirmed by my neurologist, by the way. Who said that this even extends to the cellular level. A nerve impulse jumps "sideways" from one cell to the next, in the biological equivalent to what in wiring we'd call "induction." Is that a system failure, or an adaptation trying to find a way to manifest? It could easily be explained as either, but in truth... You don't know. You can't know.

I'm living in a very unknowable state, right now. I feel very strangely odd, in all sorts of new ways (I'll spare you the list). That's true; at least the truth of my sensations, I can be sure of. But... does it matter? Do I feel so odd that I shouldn't be driving/be taken out into the world/go to or do work remotely, at home... or do I feel odd but I can do all those things perfectly well? Do I need to pack everything in and do nothing but rest, or disregard the oddities as being merely static, sensory noise, irritating but unimportant, and do whatever activities I have energy for, even if I don't have energy for much?

I don't know. And I think, I can't know.

Which is really, really inconvenient. Truth be told, I don't think I'm mustering the gumption to be annoyed at it. But it is wearing on me. As I've said before, I don't "want to be disabled," but I'd really love some clarity. I can't, or I can, and I just want to know for sure which is true.

We've all heard "you don't know what tomorrow will bring" too many times for any of us to take it seriously any more. It is true that we don't know for sure whether we'll be alive tomorrow; whether the sun will rise or not, whether some gamma-ray burst from some distant star will (or won't) in a flash eradicate all life on earth, whether there'll be an earthquake... the list of possible life-destroying disasters goes on, as it were, forever. And yet, prudence still counsels us to assume that certain things, like "tomorrow," are probable enough that it's reasonable, if not wise, to behave as though they'll come, and to plan accordingly.

I'm having a very hard time treating anything as probable, even in the short term. Will I have enough energy to go to yoga tonight? Right now... I don't know. I'm starting to get odd vision issues, I know they're not optic neuritis because (thank heavens) none of the symptoms match that, but are they cognitive? Organic? Sensory, but I'm misinterpreting them as vision issues? Sensory in the head but unrelated to vision, but they're mucking with my perception? Just need new glasses? Just need my current glasses adjusted? Is this particular weirdness unrelated to The Disease or caused by it? Don't know. (At least I can control for the mechanical glasses-related issues; thank heavens for small favors.)

Living on the razor's edge of "don't know" is getting very tiring. A friend of mine, twenty-five years ago had a favorite phrase: "A terminal state of inexactitude."

Neither of us knew how prophetic that was.

Sunday, June 13, 2010

Parallel passings

Another Commencement. The thirty-sixth commencement I've played for the same school.

I was not in control of the pedal board. As far as the pedals went, I managed. Sort of.

The performance was fine. The pedal division on that organ is muddy anyway (it's designed not to be clear and contrapuntal), and I was able to adjust as the performance went along, and we had a tuba carrying the bass line anyway, so at the end of the day, everything worked just fine.

Except my feet.

Now, my neurologist says repeatedly, it's always too soon to say "it's over," because with neurologicals, you just never know. And could I do this gig without using much of the pedal board? With the tuba player in the brass quintet covering the bass part, most of the time? Probably.

But it feels like the "organ" part of my life, that used to be... isn't, any more.

The funniest thing about the evening... the organ was not at its fullest, either. The solo division had been deactivated; a note from the tuner said that it needed too much work, so it was unusable, they left me only one stop (and it was a nice stop, better than nothing, certainly). So I had less than half the organ to work with.

This was--is--a truly great organ. A famous organ (I'll tell you about its history another time, but it has amazing history), an organ that made a lot of wonderful music.

And it's just ... falling apart. We're the only people who use it, and I'm sure there's no budget to renovate it, so I think it's probably on its way to slowly fading away to becoming forever unusable, and thus forever unused. And if not "forever," certainly "until something radical changes for the better."

Strange, to see your life paralleled in a theater organ.

Well, for both of us, I suppose it's too soon to say "never," and certainly some of my friends in the band told me that I did just fine and I shouldn't give up, but... on one level, I completely agree with them, and on another... I just don't know.

Saturday, June 12, 2010


Before about 3:00PM today, I was in quite unbelievable darkness. I had no interest in doing anything. At all. Ever again. Gordon Ramsay, in his "Kitchen Nightmares" series, often asks the wayward chefs he has come to help, "Where's your passion?"

If Gordon had asked me that question earlier today, I simply would have said, "Gone."

Today at 3:00, I participated in a "teacher training" for Iyengar-yoga teachers wishing to learn how to teach yoga to MS sufferers.

Training those teachers was the "o-sensei" of MS-appropriate Iyengar yoga, Eric Small himself.

Anyway, I did about what, three? maybe four? poses, something like that, ending with a shavasana across six chairs, so I didn't have to fight with getting down and up from the floor.

And at the end of the sessions, I felt better than I have in months. Years, maybe.

My legs are still screwy, today's yoga did nothing for my legs. But as for my heart, my spirit... I felt like my heart was simply shining... with brilliant, beautiful Light.

I haven't felt filled with light for a long, long time. It was unbelievably wonderful.

And Eric gave me other gifts, too, that had nothing to do with asanas. He really is a quite wonderful man, and an amazing teacher... and one thing he told the teachers as we began the session really connected with me on a very profound level.

Each model (I was a model) was assigned two or three teachers. The first thing he asked each teacher to do was to shake hands with the model, and hold the handshake for a few extra seconds. Then, he asked them, "What did you feel? Cold? Hot? Shaking? Steady? Weak? Firm?" He told them that as teachers, they had to connect with the student; and more than that, to connect their heart to the student's heart, so that there is trust; because with no trust, there can be no teaching.

The teacher and the students must connect their hearts one to another. If hearts aren't connected, there will be no teaching.

I've always felt that teaching worked that way, but I never distilled it to that clarity.

This is going to change the way I teach high-school students how to use computers. It's going to teach the way I teach anything. Everything.

And if I feel even close to this good every time I do this style of yoga... well, I know how I'm spending Thursday and Saturday evenings for the rest of the summer.

Wednesday, June 9, 2010

Better (1/2 a ?)

Well, Tuesday's treatment is settling a little more, today. It was pretty rocky last night, but things are a little smoother now.

The MS-ery is kinda nasty today. My feet are "flaming cold," if you'll forgive the mixed metaphor; they feel like they're soaking in forty-degree water, and walking is varying between "not good" and "eh... pretty much as mediocre as usual."

My physical therapist today said that the "ouch" in my left side that I get when I twist is probably just a pulled muscle. "No nasty hard massage that goes digging," she said. "Be gentle. Do what makes it feel good."

I had started to pound on a programming project, but... I think I'm going to follow her advice. Be gentle. Take it easy. Luckily, today (so far) promises to indulge me.

So, I'm off to rest. Take it easy. Be gentle.

A nice change, that.

Tuesday, June 8, 2010

Better (?)

Well, the acupuncture issue wasn't precisely as I had self-diagnosed it, but it was a whopper anyway. But now it's fixed.

My doc & I are starting to wonder whether my MS is progressive, rather than relapsing/remitting. Especially since I seem neither to relapse nor remit. I'm not sure that means anything, really; I have what I have, I experience what I experience, changing its name changes nothing. Doc also gave me an article on some new oral MS drug, something to look at and talk about. If it's the one I think it might be, it's another one of those "helps kinda sorta some of the people, can't tell whether you'll be one of them, and yeah, it's $70 per pill, take two a day, for the rest of your life. Maybe." I don't know if I'm really at the "crapshoot" level of desperation yet...

I know I need to make some sort of major life change. But I don't know if side-effect-laden we're-not-really-sure-whether-this-will-help-you is the way to go, yet.

Let's try yoga first, I'm thinking.

I had my third nightmare about some sort of disaster occurring during my performance at commencement. This one was completely ridiculous (large floor-standing curtain-screens having been placed between the audience and the stage), but I keep getting these dreams. I'm sure they don't really "mean" anything, but more "weird" in my life, I don't need.

I'm still not wanting to drive; I didn't want to leave the house tonight even to go to a grocery store. I made it to work OK today, made it to a store OK today, even in my pre-acupuntured state; why I was so not into driving tonight, I don't know. I do know that I want a little more rest, after my needling today. I do know I need to play the organ tomorrow, and if possible both Thursday and Friday, to try to get the instrument under my fingers and get myself ready for Sunday.

But honestly, right now... I'm not looking forward to performing. Even though I love the instrument, I've always enjoyed playing it, and I've been doing this gig for ... oh wow. Thirty six years. And yet, somehow, I'm really dark about doing it, on some level I really just don't care any more. And yet I do care, very much... but on the surface... I don't care at all. And I know that's not right, and it's not me. At least, it's not the me that I've always known... is it time to fight? Is it time to give up?

We'll see what tomorrow brings.

Monday, June 7, 2010

Nadir (again)

Counting the hours, the minutes, until my acupuncture treatment tomorrow.

I'm 100% positive that I have a particularly nasty energetic entry/exit block, something five-element acupuncture cures pretty much instantly with four needles. It may sound vaguely "boogah-boogah" and unscientific, but believe me, if you've ever had one (and you probably have, whether you know it or not) and then had it cured, you'd never doubt their existence again. Ever.

If I have the block that I suspect I have... hoo boy, is it gonna hurt, to get it cleared. But trust me, if you've had this as many times as I have, and felt the difference between having it and having it removed, you'd beg to have those nasty points needled, pain or no.

A particularly nasty side effect of these blocks is that the MS symptoms go wild. The unsteadiness of gait, the fatigue (especially the fatigue), the insensitivity/odd sensitivity, they all go completely through the roof. If I hadn't had it happened many times before, I'd be sure that the torrent of MS-symptom intensity promised that the end of independent living, or at the very best, the end of non-wheelchair-assisted living, was coming at me within days, if not hours. And even knowing that it was probably going to be at least a little better within a couple of days, I felt the fear gnawing at me today... "Am I really going to make it to commencement, this weekend? How am I going to be able to perform at all, like this?"

I dropped a cup, yesterday. I had it in my lap, I was really out of it, and I stood up without remembering that it was there, and it fell on the floor and broke. That's the second time that has happened (in the same chair, and I was in the same drained state), and yes it's just a cup and all that, but it was one that my wife and I had received as a wedding present and we'd had it for twenty-four years and now it's gone, and that made me really sad... but also I had been planning on at least trying to drive to the store that afternoon, and I scrapped all those plans because I was afraid--afraid that I'd simply forget something again, or simply not notice something, and Something Bad (who knows what) would happen because of it.

I've always been a homebody, a very stick-at-home homebody... but nowadays, except to go to work, I don't leave home much. At all. Time was when I'd hop in the car and pop down to the Japanese store or some other specialty shop for something fun to make for dinner... not any more. It's a big thing, nowadays, when I even have the energy to make dinner. A lot of time, it's because of fatigue, often it's discomfort (my right, "driving" leg, is the worse of the two), sometimes it's both, sometimes it's fear, that Something Bad will happen. But if there's one thing that the MS has worsened the most, it's my choice to just stay at home and not go on any sort of adventure. Am I honestly too tired to go out? Yeah, very much so, sometimes. Am I in too much discomfort to go out? Also definitely, very much so, sometimes. Is it wise, when I'm not mentally with it, to not put myself in a position of getting even more tired and then driving home? Yeah, definitely, sometimes...

But I still go back and forth on "Should I push myself, or just give up and stay home?" I did get a good answer a few weeks ago ("If you have reserves, it's OK to use them, but if you don't, don't push," my physical therapist suggested), but for so many years I've been able to get myself through anything no matter how bad things were, physically, emotionally, energetically, intellectually, spiritually... and when I don't use the ability to "make it through, no matter what," I feel guilty that I gave up.

And that doesn't help. At all.

Four needles, tomorrow, and things will change. At least, they always have before...

Hope; one of the constituent elements of the universe. Even in this very nasty state... I can still hope.

The gifts of MS, this week, are... an ... interesting ... combination.

Saturday, June 5, 2010

The Muse

Now, I could go on for hours about MS's physical impact. The difficulties walking. The difficulties standing. The difficulties getting into a standing position. The difficulties driving--not because my control is bad, but because my proprioception and sensory perception are bad. Yesterday, I removed my foot from the gas pedal, and I felt the pedal still pushing up against my foot. Fortunately, when everything is said and done, I'm still in total control of the vehicle (I wouldn't drive at all unless that were true). But the weirdness and the uncomfortable, they really get to me.

And of course there are other difficulties that don't find their way into the blog. If you're an MS sufferer, you know what I mean. Our "special difficulties" are all different, but, they're all the same, aren't they?

But it's the sapping of energy that by far is the worst.

Marjorie Hass, in a lecture on creativity, once said, "You can't command the Muse. You can only create an attractive place for it to land."

Well, as far as Muse-landing places go... about the best I have to offer is Death Valley. And that's on a good day. Usually, and certainly right now, it's the Salton Sea.

You'd never think of my composition/recording studio as a "sacred space." More along the lines of "shit everywhere."

And I don't have the energy to resanctify it. Physically or spiritually.

About all I can do right now is sit in my chair and poke at things, from a distance, with a stick. I've got a little bit of scut work to do to close out the school year, some grades to submit, and thank goodness the only energy I need for that is the ability to sit in a chair and poke at it with a stick.

We'll see what changes, now that daily classroom teaching is over for the summer. Next week is exams, then commencement--My Big Show, I'm going to have to drag my ass over to an organ at least a few times next week just to remind myself of how to play the processional that I wrote... I'm also going to have to get music folders ready, and that I'm worried about because my grasp of detail right now is zero. Acupuncturing coming up on Tuesday, that usually makes things better for a while--maybe the "better" will last longer this time, without the daily drainage.

As my doctor constantly reminds me, it's always too early to say "never" when neurological issues are involved, because you Just Don't Know. "Now," however, although I don't worry about it, I can at least describe it. And, well, "now"... pretty much sucks. As Bart Simpson once said, it sucks and blows simultaneously.

It's a nice day outside, though. Fresh air. Happy birds. Pleasant warmth. Clear light. From that point of view, "now" is pretty wonderful.

I may not be able to change "now," but maybe I can shift worlds. Let's see how that one works.

Wednesday, June 2, 2010


Today was oddly tough. On many levels.

Had the final class of the year with some of my students. And probably, my final class ever, with nearly all of them. I only teach 9th grade computer skills; the kids that are in performing arts I'll at least see/work with again, maybe a small handful of them will take programming... but today and tomorrow is very much "goodbye." It's always happy, sad, and weird.

One of said classes didn't really feel like watching the cartoon I wanted to show them. Now, c'mon, it's the last class of the year, every other teacher is ratcheting up the pressure, and I show them a cartoon so they can have at least one period to relax. And they don't like the cartoon. And it's our goodbye. Oddly tough, that.

On the MS front, walking was very odd today. My right leg feels like an overfilled water balloon, except filled with mercury. It's odd, and uncomfortable.

The end of the school day was tough... I went to a meeting about this project... details aren't really important, except that it's something regarding which I have a terrifying amount of both expertise and experience. Like, more than thirty years of experience in said field. And the impression that I get is that The Enterprise (the disembodied consciousness that is the "institutionality" of the institution) really, really, doesn't want my help. Very clearly doesn't want my help. On some level, it's fine; it's not my problem, clearly it's not my problem, so why should I worry about it? But feeling that your help is so unwanted... it's weird. It's tough.

Physical therapy was tough. We spent some time doing things that just didn't want to happen, we did some tests to see how my leg and ankle proprioception was doing (in a word, "sucks," and really, I could have told them that, but hey, they wanted to quantify it, and there's no check box for "suck" on the assessment form.).

So, I think I'm gonna tear up the "maybe I'll do that tonight" list and pack it in. I made some turmeric/ginger tea tonight (you can get actual turmeric roots from the right stores, and although you can make it from powder, it's better out of the root), I think I'm just gonna lie back in my chair, drink my tea, and watch the new Mythbusters.

At least one thing needs to not be tough today.

Tuesday, June 1, 2010

A nice acupuncturing today. I seem to be back on the block-a-week plan, but at least the blocks I've been getting recently aren't as painful to clear as some that have visited me on the block-a-week route.

Some good news: the fit of wacko walking that hit me in Connecticut last week wasn't neurological (and thus not an attack/exacerbation/whatever they call such things--in short, it wasn't the MS going nuts), it was entirely muscular. A little psoas stretching, a little zero balancing, chiropractic tomorrow... things should be better. Or, at least, something that passes for better... I tend to interpret/perceive things as "not as bad" rather than "better," but to be fair, those two conditions are identical.

Had to call for a wheelchair at the airport. Walking down the skyway, that's OK. Walking the length of the terminal, with luggage in hand (which significantly unbalanced me), that wasn't OK. I didn't really take any emotional effect from it, fortunately. It did make things easier, but not so much easier that I thought "Well, this 'chair' thing is definitely for me!" I'm definitely not in a rush to use those things more often. And, I think, let's not say "not yet" because I don't want to commit to its use yet, even theoretically.

One thing that has been plaguing me for months (let's be honest, more like years; basically, around when the MS started) is gumption to get going; or, as some might put it, "motivation;" although I wouldn't describe the problem as not being motivated, but more about having "activation energy." This morning, I read an interesting article on Slate magazine about how to motivate seemingly unmotivated children. It said, among other things, that motivation is "a result of an interaction between environment and an individual's temperament ... and personality."

I spend so much time puzzling over chi, changing my ways of thinking, or biochemistry, I forgot about simple things like "environment." This is a problem I've had since before the MS... the Tibetan Buddhists say, "I take refuge in the Buddha, I take refuge in the dharma (teaching), I take refuge in the sangha (community of fellow spiritual journeyers)." I don't really have a sangha, any more. I had one at Yale... and my sangha has always been very small, at most a few people, usually somewhere between one and four. But I had one. Now, I don't. The people who I can take refuge in, and being with whom renews my spirit, aren't accessible. Facebook or e-mail doesn't cut it. I need to be with them, and I can't. They're all (a) on the other side of the country or otherwise at some huge geographic distance; (b) local but unavailable 'cause they're busy raising their children, or imprisoned by their careers; or (c) dead.

First thing that comes to mind is, "Well, then, I guess I'd better get out into the world." Second thing that immediately comes to mind is, "I don't have the energy to do that, so I guess I can't." Third thing that immediately comes to mind is "The people I do want to hang with, I can't. They're not available." So, I stay at home. And thus... I don't change my environment.

That's pretty much a paradigm death spiral, isn't it? And, I'm starting to wonder, how much of that is imposed upon me by circumstance, and how much is limitation that I'm trying consistently, diligently, and earnestly, to impose upon myself. An unthinking, knee-jerk, death spiral. The Buddhists say that attachment causes suffering; and here I am, with attachment to my own suffering... Now, that's a hell of a death spiral. Spiraling straight down into hell.

School's over in a couple of weeks; the big Commencement show is on the 13th. I will have stuff to do for the school over the summer (programming, among other things) but there's no reason I can't do that from my chair, or do that after I do things for myself, like some composition projects that I'm really looking forward to starting. And I can do it on my back porch, where I can get some fresh air.

Now there's an easy environment change. New air. New, fresh air is something that I've been craving for a while... time to pay attention to what my body is asking for.

Let's see if at least that can't be accomplished this week.