Thursday, December 31, 2009


Well, here it is. New Year's Eve. Easily, and for as long as I can remember it, the "holiday" that I have always cared least about. I never had much interest in parties and I have even less now, TV is crap for the next couple of days (although the Japanese New Year's TV can be interesting), everything is closed, during New Year's Eve itself the world seems to have a six-drink minimum so best you should keep yourself far away from the road. And, if you live in Pasadena as I do, you want to stay far away from the Parade Route tonight and the Rose Bowl tomorrow.

But that's not why I'm here tonight.

Looking at my behavior for the last few weeks, I'm really disengaging from the world, even in my own house. I used to drive a hundred miles in one day at the drop of a hat; now, it's a very big deal to get me into the car at all, I ask my wife to do the driving to my weekly doctor's appointment (when she's available). There's a New Year's Thing in Little Tokyo this Sunday, Kotohajime, easily the nicest New Year's event in all of Southern California, and I'm on the edge of seriously considering telling my wife to go ahead without me, I'll just stay in bed.

I've been staying in bed a lot recently for the past week. And really enjoying it... as much as I enjoy anything. I have been sleeping a lot during the day; I've been needing napping for a while now, but I'm doing a lot of day sleeping. It's gonna be quite the shift come time to go back to work on Monday the fourth.

I got through part of a piece they asked me to write for the high-school choir for a Lenten service, but it's been stuck at "non-starter" for the whole vacation. I tried to sit down at it the other day, but nothing came of it.

Wouldn't you know, it's one of the penetential psalms: "Out of the depths have I cried to thee, O Lord."

I suppose I should find it comforting: "I wait for the Lord, my soul doth wait, and in his word do I hope."

But, it would seem, my soul might very well be waiting for the Lord, but it's gonna do it from a horizontal position, in the bed, under the blankets... because, frankly, it doesn't have enough energy to do more than that.

Somehow, I feel that if I were in dark depression, this would be easier to fix, because at least then there'd be something to "push against." I'm not depressed--at least, I don't think I am. I'm not sad, bleak, down in the dumps, or anything like that. I'm just not interested in doing anything besides lying under the blankets. I used to like sitting in my recliner... now, I'd rather be in bed. And, frankly, asleep.

Walking is quite unsteady, that's been an ongoing increasing problem, but it has gotten a lot worse since the weather turned so cold. Somehow, I don't mind that... walking funny/badly, somehow that's really not a big deal. I haven't tried to play the organ again, for a while... that's something I'd better start doing, because I'm gonna have to do it in June and going from a "standing start" both from a place of "out of practice" and neurological damage, I know I'm not going to want to deal with.

But not today, new year's eve. I'm going to lie down in the bed. Under the blanket.

But happy new year to you, dear reader. As Tiny Tim said, God bless us: every one.

Tuesday, December 29, 2009

The beauty of the blanket

Yesterday, I had what was possibly one of my most wonderful kyudo lessons ever, a private session with Rick-shishou. Some good conversation, some good shooting, some new paths opened for exploration.

A visit to the acupuncturist today. Got unblocked and another couple of points that I've been getting weekly, plus a few others. The points all have interesting poetic names, and one of the more interesting names (especially in my current context) from this week's points is "Great Mound," so called because it's supposed to be a rise upon which you can stand and get perspective.

Which, frankly, I could certainly use. (Then again, who couldn't?)

I've been really enjoying lying in my bed under the blanket. I do it as often as I can. I used to be happy just to sit in my comfy chair; now, I want the bed and the blanket. The blanket in the chair... not good enough. Maybe it's just winter's cold, although the house is certainly heated comfortably. I can tell that it's "energetically" cold when I start craving longer hot showers. A couple of years ago, I made it through the winter by visiting the local pool (built to house the LA Olympics a few years ago, so it's a great facility) and sitting in the hot tub for an hour or so. That'd probably be good for me again, this year... if I only had the energy to do it.

Walking deteriorating (which it is), that I can tolerate. Herbs changing the way I sense the data corruption in my legs (very interesting and quite strange), that I can tolerate. This perpetual "lack of energy" that' so hard to describe... it's not fatigue, but it is a real degeneration of my joie de vivre, and although I'm not depressed, pretty much all I want to do is lie under the blanket and be warm.

In some ways, it'd be easier if the tiredness (? or whatever it actually is) were clearly intolerable, because at least I'd be somewhere on the continuum of "caring." As it is, I pretty much don't care about anything. That's not 100% true, I did get myself out of the house to buy stuff for breakfast and some of the things my wife likes to have for new year's, I did bake a couple of quiches for tomorrow's "Christmas" dinner with my folks and even did all the dishes, so I guess I do care enough to at least participate somewhat in the process of sociability and living.

Is "caring" now one of those states, like "walking" and "feeling my right leg," something that now has a new meaning that I have to learn about, a change that I have to accept? The same for "having enough energy to enjoy doing things?"

I certainly hope not. I can deal with not being able to walk, but I really don't want to not be able to care.

It'd really bum me out. At least, it would... if I cared. Which I... sort of ... do. I think.

Great. "Sort of." Here we go again. Still.

Saturday, December 26, 2009

Christmas! Over! (Whew!)

Made it through Christmas! When you're in the church-music biz, especially when you play bulky heavy things like percussion instruments, "the joy of Christmas" takes a lot of work.

A couple of hours before the service, I reconditioned the heads on my timpani, which I let the high-school kids use during most of the year. That's a trick I haven't used in a very long time, but fortunately I still remember how. So that was good--at least now my drums sound only a single pitch when you strike them, not some sort of head-out-of-tune-with-itself tone cluster.

During said reconditioning process, I managed to manhandle my drums out of playing position (so I could work on them) and then back into playing position (where they'd need to be for the service). I didn't fall over (came sorta close a couple of times), didn't drop the drums. So that was good.

Performance went wonderfully!

In the MS side of the world... I had complained to my herbalist about having cold legs. He put something into the formula to address that, and it is definitely doing something on the neurological level. My legs are numb, my right leg is nasty numb, but something is definitely different. It's not exactly less numb, but it's differently numb. Perhaps I might say, I'm feeling the numbness more acutely, in greater detail. Anything that involves getting additional data from my legs, I take as a step (as it were) in the right direction, but it's making for odd walking and it's definitely quite weird.

And a small, new, worsening: I've always been forgetful, I had "absent-minded-professor syndrome" years before I went into full-time teaching, but nowadays I'm having a hard time remembering random things, especially random words; again, this is something I've been "doing" for years, but it feels like it's getting worse. Today, I went off to the church to take some pictures before they took down all the lovely decorations (here's a sample), I got home, I got out of the car... and I could not, for the life of me, remember having closed the church door after having opened it to go inside. Well, I was terrified... Right away I got back into the car, drove back to the church, but fortunately, I had indeed closed the door, the church was locked, all was well... except my memory failure cost me a half hour in round-trip driving and a few extra terrifying moments because I'm having challenges feeling the pedals and sometimes I wind up stomping too hard/suddenly on the brake pedal.

I told my doctor once that I thought my memory was going... I asked him, "Is it... The Disease???"

He said, "No, you're just getting older."

Great. I'm not sure which one makes me feel better or worse.

And now that I tell that story, I don't remember whether I told it to you before or not...

Great. Here we go again.

Wednesday, December 23, 2009

Restored (at least, a little)

Freshly back from the acupuncturist's; yes, I was blocked, now I'm not. We'll see how long the functional state lasts...

My right leg below the knee is simply radiating cold. I'm playing timpani tomorrow for a Christmas Eve service, and I don't think I've ever been more grateful that I own crank-tuned drums (which tune by turning a hand crank), rather than the usually-more-useful/desirable pedal-tuned drums. I had to pedal-tune some drums a few years ago, and I absolutely hated the experience.

And, for my convenience, my herb-cooking pot appears to have given up. I can cook them in ordinary pots, but since I have already ruined a couple of pots by letting the herbs over-cook to concrete, the pot that does everything for you is a real blessing. That is, as long as it's working, which this one no longer seems to be. Oh well, I'll get another one soon enough. Life will go on if I have to manually cook my herbs for a couple of days.

Some interesting thoughts last night, as I was in my nightly staring-at-the-ceiling-for-hours ritual, buffeted between my usual MS-doesn't-let-me-sleep and cat-crying-for-something-but-who-knows-what... I don't think I care about anything, any more. I care about and for my students, but that's about it. My magician friends are simply driven to perform, and to perfect, their magic. My musician friends live to practice and perform. My writer friends live to write, my artist friends to create art. I don't really "live to" anything.

Pretty much everything I have felt passionate about has been external; I never do anything simply for me. The last time I wrote some music simply for my own enjoyment was over a year ago--a "soundtrack" for some Japanese comics, a series that I loved and that has now ended, so that particular "spark" has gone out. (The soundtrack might have been just for me, but the seed for it was external, and so were the people on the BBS that I shared it with, doing my best to get things out within a week so they could be heard before the next scanlation was released.) I used to write incidental music for three shows a year at Caltech, creating an hour and a half of music over the course of a year, composed and electronically realized; then, the director retired. So that flame went out. I used to write music for a Presbyterian church that had enough money to regularly mount 50-piece orchestras... boy, that was fun. Then, the conductor retired, so that flame went out. I get asked on occasion to write things by my current employers, but something about the process makes it difficult (haven't quite figured out what it is, yet), and what spark there is, when it is there, is low.

Now, you'd think, as a creative person (as which I've always liked to think of myself), that I'd want to create things, period. But somehow, I need someone to create them for, and if that's not there, I got nothing.

So, the bottom line is... I do nothing simply for myself. Somehow, I must find the pain of "not creating things" to be preferable to the pain of "get out of your chair and do something." Don't know how, certainly don't know why.

"Well, just do something for yourself." Yeah, seems straightforward enough. Somehow, I just don't want to. And if you tell me to just get up and do something, I want to push back... often, angrily.

So what's this all about? Beats me.

But getting out of this particular rut may be part of what will break my current (multi-year) cycle of self-sustaining depletion.

I'm sure, at the bottom line, the answer is simple (most are), and the answer is probably easy as well. And, it's probably right in front of me, and revoltingly easy to see--or at least, it will have been revoltingly easy to see, once I've seen it.

But I'm not seeing. Probably, I'm not looking correctly, either, but I'm definitely not seeing.

Separation from the problem will reveal its solution. Over-analyzing will not catalyze detachment, and being an over-thinker, that's the place I go first. I need to go somewhere completely different.

But where?

I don't know.


And the corker is... it'll probably be MS that somehow catalyzes finding the way.

Go figure.

Tuesday, December 22, 2009


Back we go to the herbalist. I've been on a break from his care for a few months now, a combination of "I didn't feel like I needed that kind of support, but it's time now," qi-gong practitioner recommending a hiatus, and running out of money because I was spending it on other health-care providers. Of course insurance won't pay for it; after all, it is effective, it does give me symptom relief, and it has no side effects, why would my "insurers" want to support anything like that?

Yesterday, I complained to him that my legs were cold. I started my herbs yesterday after dinner.

Last night, for the first time in months, I didn't need to put a heating pad on my legs. They were actually... a little ... warm.

Yeah. Stuff that does that is definitely not worth my insurer paying for. Tysabri, something that needs to be injected and will probably turn my brain into jelly and/or kill me, they'll probably pay at least something for. This... nope. Sorry.

Then again, I can't imagine trying to find a charge code for my herbalist's diagnosis: Too much Liver Fire, scorching the lobes of the Lungs, caused by insufficient Kidney Water to keep the Liver Fire under control. Qi gong guys says he's right, that's my problem.

Herbalist and qi gong guy, with their "funny" explanations--they give me symptom relief. My five-element acupuncturist gives me quality of life. The West... they got nothin'. Nothin' for me, at least... if you're getting help from your Western meds, dear reader, then you're one of the lucky ones.

An interesting system, no? Insurers will pay for stuff that maybe does good... but then again, maybe doesn't, there's really no way of knowing whether it did or didn't do you any good... but it will, 100% of the time, reduce your quality of life, at least part of the time. But they won't pay for stuff that definitely does good, and that 100% of the time improves my quality of life.

I'm having a hard enough time coming to true acceptance of my MS. Procedural idiocy and malignant stinginess from people that I'm already paying quite handsomely to assist with my health care... my plate was already full enough, thank you very much, without adding extra elements that require both acceptance and forgiveness.

Well, the good news is, I've got great care from great physicians, which I can still (sort of) pay for. And, except when I'm in the block-induced doldrums, I'm not really "suffering" from MS as much as I might be absent their care and friendship.

So, on balance...I'd have to say, it really is a merry Christmas, isn't it?

Monday, December 21, 2009

Dreams; emptiness

One of the most interesting of the many interesting (and "...INteresting...") changes brought by MS has been the dreams. Not "bad," not "good," although if anything they've been "good"... but what they have been has been intense. As vivid, as real, as "dense" and solid as waking life. They're so "real" that I'm sometimes not sure whether something happened in a dream or in real life. And so "real" that sometimes I wake up from them exhausted, as though I've actually lived that period of my life.

A couple of nights ago, the dream was of playing the organ. I was playing a piece I've played since I first learned how to play the organ, no better or worse than I've ever played it; except, I was playing the pedals effortlessly. None of the I'm-not-sure-I'm-in-control issues that have plagued everything my feet and legs have tried to do over the past couple of years... I was just playing. Playing, in every way, normally. Or at least, what used to be "normally."

It was wonderful.

I've got two days before I see my acupuncturist, who I hope will pull me out of this energetic pothole. I don't like walking, I don't like talking, I can't really deal with the world or make what really should be simple decisions... I'm lying in bed using a new laptop-holding position I got from Lifehacker, I've got my iPhone tuned to Pandora's Healy Willan station, a new load of herbs from my Chinese herbalist is on the boil, and I'm going to do my utmost to just stay in bed until I can get needled.

Of the many things I don't like about The Disease, the one I like the least is that it causes me to feel vaguely, diffusely, indeterminately crappy, in a very hard-to-describe way. At least when you have a headache, you can say "My head hurts." At least the problem is clear. But when the when someone asks you how you feel and the best you can come up with is "... bleh..." because what's wrong is not just making you suffer (sort of) but resisting description, as to quality, location, and intensity of discomfort... Well, that's pretty much the poster case for "adding insult to injury." Assuming, of course, that you can call what's wrong "injury"... which is, itself, already quite the story, which itself is resisting being told.

Never a dull moment, eh?

Saturday, December 19, 2009


Good thing we're into the winter break... I think I just waved "bye bye" to the end of my rope, as it fluttered quietly in the breeze while I passed it on the way... well, maybe not "down," but somewhere other than where the rope was attached.

I'm having a lot of trouble walking, this morning. It started yesterday... my legs are very wobbly. And I'm moving more slowly than usual, and I've been moving pretty slowly for quite a while now.

I'm calling my emergency local acupuncturist today; I think my problems are just a request for a re-circuiting rather than some sort of MS degradation. Most of what I've experienced that most people would call an MS "exacerbation" (whatever the @#@# that means) have always been directly traced to an acupuncture-treatable condition. Usually, it's four needles and I'm reversing course immediately from "getting worse" to "getting better."

But as a result of whatever it is, my energy today is way, way, way past "low."

So, small goals today. Finish writing some music (gonna do that first before what little energy I have evaporates). Make some asparagus quiche. Maybe bake scones... although the way things are going, that may be too much. We'll see.

First, make some music. At least, if I only have enough energy to do one thing today, let me do something that will, even in a small way, make the world just a little bit happier.

Friday, December 18, 2009


And that's not the fun "hammered" we used to get in college, either.

Usually, I'm ready to give up and collapse around 2PM.

I got to that point at around 9AM today. This is gonna be... some day, I'm thinking.

I'm definitely back to "perpetual energy block" mode. I think I was in that state Wednesday, having only been relieved of it Tuesday.

Tuesday, as my doctor detected the block, he says, "You're blocked. Time for a change."

I said, "I'd be happy to, if I knew what to change."

He said, "Nobody does. Nobody ever does."

Well. OK, then.

Fortune cookie yesterday said, "Make time for a relaxing vacation."

Well. OK, then.

I'm not getting the message that I'm trying to send myself with this "constant block" nonsense. Whatever "the message" is... I'm not getting it.

Time for a change.

Well. OK, then.

Tuesday, December 15, 2009

A pause (soon)

Oh my, it has been the week.

Opened and closed the winter play--the doing of which is the main reason I haven't checked in for a week. Which meant that we had to set up, cued, teach the tech how to run, and then strike, the show. And the show, by the way, was an overwhelming success. But getting it to that point was very, very draining.

In the same fell swoop as we struck the last show, we set up for the winter concert that'll happen this week. For which I have to rig (and run) the lights, coordinate with our contracted sound man, and oh yeah also perform with the orchestra, on three different instruments. I was just going to play percussion, but the brass players were completely toast and completely clueless about playing their parts (and their instruments), so I had to bring out the baritone and leap into the fray with that, too... fortunately, it did indeed help them, big time, and now they'll survive at least the first piece. Fun, but because everything takes so long to get going, and it's at the end of an already over-long school day, very, very draining.

OH! Yeah... just remembered... I (or someone) will have to drive to Sunland to pick up light bulbs for the boards, without which we can't run the show. More work. More draining.

Thursday is the last "real" day of teaching for 2009, for what little actual teaching will get done that day. Kids and adults both have had way more than "enough" and are very, very ready to go on break. A very long day at school--at least this time I'll get to take a little break in the afternoon--and then handbell rehearsal, for a piece that's premiering this Sunday at church, followed by choir rehearsal. More draining.

Friday we take the last of the lights back to the rental place. Only a little draining, I think. And then it's all over for a couple of weeks--at least, at the school.

Good thing I got a couple real zinger energy points this week: the Pillar, and the Great Hammer. With luck, those'll hold me for a while.

Had a chat with the boss this week (part of the yearly review). One of the things he wants in writing, kinda to help with the ADA thing, is whether I can tolerate 40-hour work weeks. Well, let's see, given that last week I ran several days in a row starting at 7:30AM and getting home by 10PM, including working through the weekend... I think a 40-hour week would be less of an challenge than my current schedule. Yes, thank you, I'll be happy to take a week with only 40 hours of work. But such is not the teacher's load, alas.

But as we remind ourselves in the theater (especially during the hell of tech week), we do this because it's fun.

And it is!

But, y'know--and oh GOD this is true of MS as well--sometimes, enough is enough, thank you very much. This stuff is hard enough without an uncooperative nervous system (and whatever else comes with the package).

Tuesday, December 8, 2009

Relief (I think)

Some good news to report. The worst seems to be past on the technical end of the windup to opening night. The myriad tiny changes I maybe wanted to make in the music, director said I didn't need to make. He didn't hear what I was hearing/worried about, he thought it sounded great. "Time to let it go," he said of the whole production. And I think he's right.

A good treatment today. No blocks (yay! finally!) and a very interesting treatment, to tap into "the sea of energy." Felt really good. And still does.

So I came to work a few minutes late one day last week, to find the plaza filled by paramedics, an ambulance, and a fire truck. Turns out one of the teachers bumped his head hard enough to cause spectacular bleeding (which is why the called the paramedics). When the shouting died down, he was fine. No worries there.

One of the kids said she was pretty creeped out by the whole thing (she was in his class when it happened). I told her, "You are eternal. The thing you're driving around in is temporary. Nobody enjoys being reminded of that second point."

I've given, and had to receive, that particular sermon a lot recently. I don't think I like being reminded of that. Which lesson was, of course, one of the first gifts of MS.

Sunday, December 6, 2009

The wall

The wall, as in "slammed up against."

A confluence of time- and energy-sucking activities, which I could not avoid, taking said time and energy away from other stuff that only I could do.

We hung lights for the show this weekend. It has been a while since the lights were hung by someone other than myself or a student (or ex-student) who really knew what they were doing. Instead, it was a fun and jolly learning experience for some of our students, provided by another one of the faculty. Who isn't as fast as I am (or at least "was," before The Disease). So, slow student being piloted by slow faculty member. It took two hours to hang four lights and gel and touch-up-focus twenty others (which started the day mostly pointed in the right positions). I could have done it in less than half the time.

The problem wasn't that they're just slower than I am... the problem was that there was a long list of other stuff that only I could do, that required energy/thought/creativity rather than simply patience, and waiting for the slow people ate the time/energy that I needed desperately for other activities (also, by the way, related to the play, and also on the critical path to "ready to rehearse Monday").

Same thing today. Had to skip lunch because I had to bolt from church to change to get to the school to set up for Open House. Then had to run sound at Open House. For hours. Then, finally, got to cue the lights for the show... which I would have done yesterday except I had been sucked dry of energy and time. Which, in turn, sucked me pretty much dry of energy and time today. Didn't get dinner until, um, 8:30 I think, because I couldn't take the time away from the work I was doing. And of course, no food means even less energy...

Being sucked dry is bad for me. Very, very bad. To add insult to injury, I'm going to the acupuncturist Tuesday (to get what I'm sure is at least one block cleared) and then I don't get to rest, I have to go back to school for a rehearsal.

What does this kvetching have to do with MS? Well, before The Diagnosis, it would have been a rough, but eminently doable, week. Sure, there's a lot of crap to do, but that stuff happens, and we get to the end of the week and the show opens and everybody has a great time and all your work pays off.

Post Diagnosis... we're gonna get to the end of the week, and the show'll open and everyone'll have a great time, just like before, but I this time, feel damaged. Really badly damaged.

I wonder how long it'll be before I feel like I've recovered. Well, we'll see. Perseverance, I thought I had already quite sufficiently learned by now, thank you very much. I guess I'm just really, really tired of having to persevere all the time.

So now, meta-perseverance is required. I have to persevere at persevering, so I can persevere at working/living/whatever I'm struggling with.

I guess I'm not completely drained. At least I still think that's funny.

Friday, December 4, 2009


A quietly rocky week; a lovely week.

Double blocks at the acupuncturist... seems that I'm back on the block-a-week plan. Currently, the multiple-simultaneous-blocks-a-week plan. This suggests that I may be "stuck" somewhere (no acupuncture puns intended) in my internal process; and a particular challenge for me, the path out of this state requires me not to look for "the solution," but simply to get out of the way of whatever it is that is trying to present itself to me but that I'm not seeing.

A bad night last night. Very cold by LA standards (low 40s), I got into my truck after church-choir rehearsal to drive home, and... I couldn't find the pedals. Imagine the "oh crap, where did I leave my keys" scramble, except involving your feet, and the pedals that operate the vehicle. And your wife is out of town, so no easy phone call to get a ride home... and then, terror. Nasty terror. Fortunately, I mastered both the terror and the pedals, once the truck heater kicked in my feet became much more cooperative, and I made it home without incident. No near misses or anything, quite an uneventful--to an external observer--ride home. But still... a lot of profound, and quiet, terror.

MS has definitely changed my "dealing with the world" process, on a far more profound level than just "I need a cane." I've never been a multitasker, if you want your best out of me you need to give me one task, clear direction, and then leave me alone. It has always been that way. But now, "dealing with all sorts of crap" is particularly difficult, and I really can't deal at all with chaos. But cutting to the core of the problem at hand and finding the simplest, most appropriate solution... I've always been good at that, but right now, that has become one of my major strengths. We faced some problems in the play we're about to open at the school, and just this week I found some low-effort low-complexity solutions that turned out to be better solutions to the ones we had originally been planning.

The "calmly cut to the chase" approach does make it hard to interface with people who are running in circles and yammering about whatever bug has currently infested their bonnet, and it's very hard to explain to people that they don't need to be as wound up about things. A very hard conversation to have is "You don't understand. Orbital mechanics presents deadlines. This is a preference." But generally speaking, I don't get as wigged out as I used to... about pretty much anything. I still backslide into dark and vindictive places from time to time (a symptom or a cause of blocks? maybe both...) But in any case,"calm" is certainly a much nicer state to live in than "outrage" or "apprehension," two of my favorite pre-diagnosis dwellings.

And that is definitely a gift of MS.