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.

Sunday, November 29, 2009


This weekend, I got the same message from two completely disparate sources. They couldn't have less to do with each other, and yet, they said the same thing.

My kyudo shishou, on his Facebook page, said "Our state of mind must first be giving. We must first offer what we want, in order to receive. And then we must be open to receive."

And also this weekend, I saw on DVD, the Galactica movie The Plan. Which, if you're a BSG fan, I strongly recommend. (Quick caution: The version that airs will be significantly more family friendly, some young ones might not be ready for a few of the scenes on the DVD version.) One of the most touching themes of this film is the power of being open to things that arise within, and come from no one knows where, that will totally transform you, that will enable you to transcend yourself and become something greater than you ever imagined you could be. But part and parcel of that whole process is giving of yourself--which can catalyze transcending yourself merely through the act of giving.

In trying to be honest with myself about what I can't do, I am trying to be open and honest about what I can do. And how what I actually can do (which can vary considerably from day to day) may not be precisely what I used to be able to do... but that doesn't necessarily make it "worse." What I actually "currently can do" has nothing to do with my ego-image of "the stuff I can do." It's an interesting struggle, to detach from the ego-inflating concepts regarding those "things I can do" and instead to be fully participating in, and enjoy, the things I actually can do.

Which, when I can do them, can still be pretty cool, all things considered.

Thursday, November 26, 2009


Kai: meeting. One of the hassetsu (eight steps) of kyudo. The bow is fully drawn; kai is, according to one author, the "spiritual draw" of the bow, the moment at which we "pass the baton to God" and prepare for the mystical moment of the release, when the arrow leaves the bow and flies towards the target.

Yesterday, I got a wonderfully elegant and eloquent note from a friend who also has MS, and he described how he realized that he had realized that there was no cure, no valid treatment, no known cause, and an unpredictable course, and after a very long struggle with a lot of negative emotions he came to the realization that the only thing to do was to live fully. Now. Today. And it strengthened his resolve to live to the fullest and work on himself, without delay. Now. Today.

He had come to his moment of kai. And, then, experienced the mystery that is the release.

And now, every day, he "shoots again." (A very beautiful bit of kyudo practice and philosophy, I'm sure I've mentioned this before... Hit the target? OK. Shoot again. Missed the target? OK. Shoot again.)

In my own kyudo practice, at one point I realized that I was afraid of the bow and the arrow. I was always holding it away from myself, rather than bringing myself to it and meeting it. (Meeting? Hm...) Now I'm less afraid of it, I'm willing to actually bring the arrow up to my face where it's supposed to rest before it's released... but I have to be truthful, I think I'm still giving that moment lip service. I think I'm still not willing to bring myself fully to the bow, to give myself fully to the bow: to truly, fully, and completely, meet it.

Thus it is with me and MS. I have yet to really, truthfully come to kai. To bring myself to the arrow, to the bow, and fully give myself to the truth.

The bow and the arrow always tell you the truth about yourself.

I am so missing the target right now... Well then, OK. Shoot again.

Tuesday, November 24, 2009

Reassembled (for now)

Thank goodness for today's acupuncture. A double block... no wonder I didn't feel like doing anything. My head's still spinning a bit from a couple of the points, but given the choice between those needles and concomitant spins and the blocks, I'll take the needles.

Two prescriptions: Do a particular meditation daily, and do more kyudo. The first is to help me get out of the spiritual rut I'm in (which will help me get out of the energetic rut), and the second to get me to do some serious breathing (and oh yeah, the other things kyudo does for me, which will contribute to the getting out of the spiritual/energetic rut). I've really been craving air and light; although the bed has been very attractive over the last week or two, and I've spent much of my time there, I've really "caught a spark" those few moments I went outside. Fortunately, LA is warming up this week, so it'll be easier to open the house's windows, and to get myself outside.

One of the key points of the meditation he wants me to do is that it's offered for the benefit of all. He says (of his own process) that he sometimes gets into a state where he doesn't want to do something for himself, but when he's doing it for the benefit of all, he can find the energy. Certainly, when I need to take care of my wife when she's got a migraine, it doesn't matter how crappy I feel, I can summon whatever is required to take care of her. Even when I'm completely sucked dry of energy at school, if one of the students needs attention, I can provide it. Certainly, a central tenet of the type of kyudo I do is that what you are doing is an offering of yourself.

And this is also a central tenet in my school of kyudo: You cannot receive until you give.

I've been wanting a change. I'm tired of being empty. Looks to me like the first steps on the pathway out of emptiness are in front of me.

Let's see if I can muster the willingness to start walking it.

Saturday, November 21, 2009

Better (-ish) (sort of)

Not quite into the light yet, but out of the depths of darkness.

Qi gong today... my practitioner blames my current downturn on the season, which is very much within my own history, many years pre-Diagnosis. Winter... squashes me. Autumn is always wonderful. Winter is just plain bad, energetically (for me, at least). Thank goodness I don't have the usual spate of Christmas concerts this year, they'd just plain do me in.

Something I noticed today at the treatment, which I have noticed before but wasn't quite at the top of my consciousness... Electrical heating, radiant heating, I don't feel in my legs very well at all. I put a heating pad on my legs at night, it vaguely helps; at qi gong, he puts a heat lamp over my legs, I barely feel it.

But the warmth of his hands, I feel. Same at night, the warmth of my wife's hands or legs, I feel. The heating pad, not so much.

Don't know what it means, but it's interesting.

Feeling good enough to work on music for the winter play... I'm feeling a little (a lot) behind on this whole show, I think I can still pull it out, but I'm not really in touch with the production or its schedule, and the combination of "lost," "under-informed," and "behind my own schedule" is not at all adding to my general comfort level.

But at least I'm getting something done tonight. In the words of the farmer at the end of Babe, "That'll do." And right now, that's good enough. But then again, isn't "good enough" good enough, by definition?

I don't know if I'll have the wherewithal to deal with going back to work Monday... we'll see what Sunday offers. The week before Thanksgiving is never one where people do a lot of quality concentration, so it won't be such a bad time to be absent, but I do miss my students, and I think they'd be good for me to be around, but the hurly-burly of the school day... I may not be ready for that yet. But, I got a couple of days. We'll see what happens.

If there's one thing constant with MS... it's its variability.

Thursday, November 19, 2009

Just not interested

A very uncomfortable day, so far.

The first thing I want to make abundantly, perfectly, and completely clear, is that I have absolutely zero interest in dying. None. Zilch. Totally none. Absolutely none.

What is making this day so uncomfortable, so far, is that "zero" is pretty much the amount of interest that I currently have in living.

If my wife hadn't been so insistent upon it, I probably wouldn't have eaten anything at all today. I'm just not interested.

I'm (vaguely, sort of) handling some obligations... Writing source music for a production at the high school, and experiencing (almost said "enjoying," but that's a little more enthusiasm than I can actually muster) at least some success at that. Probably will make it to a handbell rehearsal tonight, since our first performance (a date I picked) is Sunday and one of our number is absent and I'll have to keep the rehearsal running and play her part, so that everyone doesn't get totally discombobulated by the missing player.

I really wish I could have taken a full "get out of life free" week, but I just didn't see the way to do it given what all was going on. Sure, if I had been hit by a bus (the paradigm unforseen disaster is always "hit by a bus," somehow) they'd get along fine without me, but I'm just not yet willing to play the "hit by a bus" card. Although I may play the "I need to leave rehearsal early" card tonight, we'll see how things go.

Music usually makes me feel at least a little better, it always has in the past. Even with what I found out after the fact was a mild case of measles and nearly-full-on-hallucinations, rehearsing made me feel better. We'll see where it takes me tonight.

Hope springs eternal. If I only had some... But, somehow... I'm just not interested.

Qi gong on Saturday, we'll see where that takes me.

But at the moment... I'm actually almost enjoying a really, really good cup of oolong, some sort of tea that came with the moon cakes my wife got in the Chinese part of town. Easily the best feeling I've had all day.

And y'know, given the way I've been feeling today... I'll take what enjoyment I can get.

Wednesday, November 18, 2009


Halfway through the first fully MS-related week I've taken off work. It's not working the miracles of recuperation I had hoped for. Frankly, I'm not exactly sure it's doing me any good at all, although I'm quite positive it's doing me more good than the week of work would have done me.

I had to spend a lot of today taking care of a migrainey wife; that took far more energy than I had wanted to spend on... well, pretty much anything, actually. I certainly don't begrudge her the effort I had to spend--God knows, if I needed help, I'd want my spouse to take care of me, and I'd do it again in a heartbeat if she had a relapse and needed me again. But it cost a lot.

I'm way more sensitive than I like. Little noises, little anythings, make me jump. It's pretty uncomfortable. I just took another dose of beta blocker, but those don't seem to be intercepting whatever it is that I'm reacting to.

And oh yeah, the sadness. There's something about how the MS is getting in the way of things I used to do without even thinking, and somehow, I kinda feel like it has been forcing me to face my own death, one tiny piece at a time. I've been dealing with that for a while, but there's a difference between facing the idea of your own death and the actuality of your own death, and I think all of my "good attitude" about the disease has been because I've only been facing it in the abstract. Somehow, taking the step of saying "I need to take this time off because of MS" is forcing me to deal with it in concrete terms, and I feel like I'm teetering on the threshold of a lot of sadness.

Which, in a strange way, I take as a good sign. It's probably a place I have needed to go for a while, but haven't been ready to face. And frankly, I don't know if I am (or if anyone ever really is) "ready" to face it.

The only reason I wish I could face it... is because when I get out of it what I'm supposed to get out of it, maybe it'll go away.

Hope springs eternal.

Saturday, November 14, 2009

Acceptance (see "running out of options to avoid it")

A good day, in many ways. Rough, at times. But good. At least, to start.

My wife woke up with a migraine this morning. I had more than enough energy to take care of her, to help her through the nasty part of the morning until we could get her to someone who does "medical massage" (shiatsu and the like) and best of all, the newly opened place that's less than a half-mile away took incredibly good care of her, she emerged from her session smiling and shining. I'm going there next week, they seem like wonderful people. And they have an adorable little lap dog, who will sit with you for as long as (or longer than) you want to rub her. I took her to lunch afterwards--she was feeling good enough to ask to be taken out--and we went to a vegetarian place whose owner and workers have become good friends over the years, where we got the news that they're closing for good at the end of this month. Sad for us, but we're happy for them; it's time, it really is, and if you knew the story (and it's quite a story) you'd agree.

And now, the "rough" sets in. I'm starting to notice that I'm only really good until like 1:00 or so, at least when I'm out in the world. We were out a little longer than I wanted to be, I got us home with reasonable aplomb and without incident, but I was feeling pretty crappy by the time we got home. Daily, I prove the Spoon Theory, but somehow I'm not smart enough yet to remember how to work with it rather than to be a victim of it.

I'm taking next week off of work; my MD and I decided that it was wise to take a bit of a break right now, in the hopes of fending off an otherwise impending crash-and-burn, which I kinda feel like is lurking a little too close for comfort. I'm going to maybe do some kyudo, definitely do some music writing (yeah, it's for school, but it's something that I like and it doesn't cause the same stress that other school stuff does) and I am definitely not reading my school e-mail, which I've done on all of my other "vacations," which was responsible for a concomitant lack of rest. This is a big problem, for me: pretending to rest, rather than truly resting. Why I find it so hard to stop my mental fidgeting and fully give myself over to resting when I'm allegedly "resting," I don't know, but just that small change would probably make a huge difference.

Next week will be the first big chunk of work I've taken off for MS proactively. I've lost a day or two here and there, a week once, last year; but those were all related to massive acupuncture blocks rather than out-and-out let's-be-honest-it's-about-MS-this-time incidents. This time, it's different. This time, it is about MS.

And, I think... that makes me sad.


I think that "having MS" just got ... more real.



Wednesday, November 11, 2009

Sensitivity (a little too much)

In many ways, things are going well at the moment. My students are happy. The PowerPoint presentation on "putting power and the point back into PowerPoint" went over very well, especially the South Park pictures I put in for their enjoyment. I just finished a new piece, something for Advent IV, for mezzo-soprano, handbells, and organ. More pieces, this time for theater, are in the works, and are allowing themselves to be written reasonably well (when I'm able to work on them). For the first time in several months, I made dinner from scratch, a roasted carrot/ginger soup (roasted the ginger as well as the carrot as an experiment, and that worked quite nicely).

But I'm taking next week off from work, at my doctor's orders. The first time I've had to take a longer-than-one-day MS break.

I'm not having an attack (whatever that is), but I am very dangerously over-sensitive, to pretty much any sensory input--especially abrupt noises. The only Western med I use is Inderal, a beta blocker, simply as a buffer between my under-insulated nervous system and the world. And it isn't doing its thing any more, and I'm at the maximum sensible dosage. But I get jarred/startled/derailed by the smallest things: Cat knocks over a pile of laundry, and the noise the pile of clothing makes when it hits the floor jars me. And that's not good. I'm also nastily fatigued, and that just makes things worse.

I'm going to try to get qi gong'ed next week, that always does me good. Doc says some rest--some true rest, not the "pretend" rest I usually take the few occasions that I take time off--may help me reassemble myself. I think this is a good idea, I'm going to have plenty to do very soon, and if I start it depleted, it's just going to get much, much worse.

On an unrelated note, one thing I've been noticing lately is that my walking problems get better if I'm walking "mindfully," in the Zen sense. My kyudo shisho(u) (from whom I haven't directly taken a kyudo lesson in way too long, but who continues to teach me daily both via the miracle of the Internet and by things that he said to me years ago finally coming to full realization) has started a blog on Zen walking, and that's very much what's help keeping me upright nowadays. That, and the kyudo saying, "Eye out there (target), mind down here (dan tien)." In that state, the air is beautiful, the world is joyous, my head is high and my back is straight, I am simply present in the world and my walking simply is what it is. But somehow, without me having to expend an erg of additional energy... it's better.

Not a bad result, for the small effort of getting your mind into yourself and out of yourself, and just breathing.

Tuesday, November 10, 2009

Acceptance (see "still elusive")

One of the many, many reasons I love my weekly acupuncture appointment is that I have a few minutes to spend with a very, very wise person who helps me "cut to the chase" in whatever is really behind what's up with me at the time I see him.

We talked about the music performance issues, and my issues with the issues, and again he says, "You still haven't really accepted the MS and everything that it brings with it." And that I certainly haven't accepted what it has done to music performance.

Well, I can't disagree with him. There's too much turmoil within my performance problems. But it's really, really deep. And that's much of the challenge... On the surface, it's easy to deal with. "Well, that's not good... oh well..." There's a huge "it is what it is" component in the experience of my neurologically imposed difficulties. And yet, I have to be honest, it still bothers me, and it bothers me in a way that I am having a hugely difficult time articulating. Do I feel sorry for myself? Actually, no, not at all. ("Woe is me" is one place that I have never gone. At least, I don't think I've gone there--not with the MS, at least.) Am I angry? No, not really... Am I sad? Sort of, I guess, but no, not exactly...

Maybe I need to spend a day at the organ console and just play--and suck at playing--and just let myself go into the feeling and stay there until I figure out what it is.

Just the thought of doing that, just typing that sentence... scares me.

Great. Something else to deal with. First, deal with the fear of confronting the problem, then deal with the problem.

Well, that's the most unwelcome gift of MS. It leaves you no choice but to engage fully the entire truth of whatever life presents you.

My doctor quoted Mother Theresa as we began the treatment today: "God has never asked me to do something that I was unable to deal with. I just wish he didn't trust me quite so much."

Saturday, November 7, 2009

So, now what?

I played for a colleague's memorial service today. Reasonably easy gig, technically speaking; prelude, accompany a duet, accompany a chorus, postlude. Organ blew out a lung earlier that week, so one of the divisions was missing. An expressive division, too, one I was hoping to use. Oh well... Not so big a deal, I've done more with less interesting instruments. And there was still plenty of satisfying registration to be worked with.

Prelude was basically fine. Had to cover an extra ten minutes unexpectedly (crowd kept coming in, they had to "hold the curtain"). Not a problem, I do this sort of thing all the time. I can play until the cathedral burns.

Well, not exactly "not a problem." Keeping the music going, that was no problem. Hitting the right pedal notes was a bit of an issue, not so bad because everything I was playing was simple and slow, but still, too many "almost right" notes for my comfort. Finding the swell shoes (the pedals that change the volume), that was the problem. A big problem. Far too many times I thought that I hadn't moved my foot off the pedal, but somehow it had moved, and it was in the wrong place, and when I thought I was opening the swell box, nothing happened. Too many instances of "What's going on? ... oh, that's why nothing's happening." Nobody but me noticed what had happened, I covered every problem, worked it into whatever I was playing at the time so it was, as we say in IT, "a feature, not a bug," but still... that was bad. Losing control of the instrument, especially in the middle of a performance, is bad. And not simply "bad," it's very, very uncomfortable.

Went to the piano to accompany the chorus. Right foot kept slipping off the damper pedal. Couldn't tell when my foot was on the pedal or off, or on the right place on the pedal to be able to work it properly, and often when I thought I was pushing down, nothing was happening. Had to keep looking at my right foot to see what was going on, I couldn't feel what it was doing. Nobody but me noticed the problem, and the rest of my playing was just fine, but still... as far as I was concerned, it was bad.

The postlude: Got started OK. Was planning on doing some melodic things in the pedals. I've played this piece many, many times before. Except, apparently, not today. I had to do a lot of "course corrections" because my feet wouldn't hit the pedals the way I wanted them to. Didn't help that the crowd was taking way too long to exit the building... Pasadena Civic auditorium, holds at least 2,000 people, they clear out in about ten, eleven minutes. This church, holding maybe 700 at most, took at least fifteen. When every moment you're fighting the instrument, spending most of your energy trying to keep the piece moving and keeping your lack of control completely hidden, it doesn't leave a lot of your brain available to create lovely moving music. Functional music, that you can do, but really good music--nope.

So, a success from the audience's point of view. Everyone loved the service. Nobody but I knew how much I was struggling. So, in that sense, a complete victory. But, you know, I'm not sure what I really feel about what happened today.

In one way: "Oh well." I don't think I'm exactly depressed about what happened, possibly because I kept it going so well, that's certainly a triumph, but I do have to tell you that leaving rehearsal the other day, having been unable to work the piano's damper pedal nearly at the "can't work it AT ALL" point... I did ask myself, out loud, "Do I really want to keep playing music, if this is the way it's going to be? Maybe I don't want to do music any more, if this is the way it's going to be..."

"Just giving up" is the wrong answer. "Ignoring what happened" is the wrong answer. But leaping up like the heroes of Les Miserables hoisting the flag at the barrier and singing, swearing that I'm going to hold the line or die trying... well, I definitely ain't doing that. Is that the right answer, and I'm just not willing to do it? I don't know... Am I just out of practice, will that solve my problems, is that all that's missing? I don't know...

There's an option I'm not seeing.

I think I need to let this sit for a while, and just keep my mind open.

But this was a very uncomfortable day.

Friday, November 6, 2009

Tough love

Tuesday, I get treated. Tuesday evening, Wednesday morning, I feel great.

Wednesday afternoon, at 1:30 or so, I start to feel nasty run down... Of course I stay at work, poking at the computer. Of course I don't go home and lie down. By 3:30, I can tell that I'm dangerously run down. So, maybe 4:00 or so, I finally go home, actually in pretty horrible shape.

Now, that evening, I did go out to dinner with a dear friend of mine, I was really really grateful for his company and his inspiration. And I even had some interesting ideas on something I've been background processing for a while (more about that, later... I still need to think about it a little more). But I never really left "feeling crappy."

Definitely felt crappy all day Thursday. Felt worse. Significantly worse. Called a local five-element acupuncturist, the person I call when I'm in distress and need acupuncture first aid. I can almost always get in to see her very quickly, much more quickly than I can get into my regular guy on short notice, and it's a fifteen-minute drive over nice city streets rather than an hour both ways over a clotted freeway. (And she was trained by one of his office mates and both my doc and said office mate thinks it's great for me to see her when I'm in distress, so everybody wins.)

Saw her today. Got my Three Heater adjusted, now all my officials are speaking collegially to one another and I no longer feel crappy. Another four-needle miracle. Now, I'm in great shape to play this memorial service tomorrow. (And is that ever another story...)

More important, though, was what we talked about during the treatment. One of my big big BIG problems is "not feeling good enough to get started." Fatigue is a big nasty with MS, that's known all to well to all the sufferers, and it really gets in the way of especially my creativity. Because my biggest complaint is that I feel too crappy to start doing things. (Doing anything, usually.)

She had simple advice: start anyway.

Now, "grin and bear it" and all of its synonyms ("just tough it out," "sometimes you just gotta take one for the team," you know the list) immediately cause me to push back. Hard. Violently. If you're not lucky, enraged violently. It doesn't help that knowing when to respect the fatigue and thumb your nose at the fatigue is a very tricky assessment. And one that still needs work--because sometimes, you really, really need to respect the fatigue. That was definitely one of the lessons I learned this week: when you start to feel crappy, don't just buckle down until you're feeling crappy to the point of self-immolation. Quit, lie down, get away from the goddam machine and take a real break, and start again when you feel better.

But I think I'm going to take a slightly different approach than my acupuncturist's direct approach, the "Whether you feel like starting or not, just start anyway" suggestion... Specifically this dialog:

"I feel too crappy to start."

"Yes, you feel crappy. That's very true. And that is pretty crappy, there's no two ways about that. I really do feel bad for you. I understand. Now, let's start."

First, acknowledge the truth of the feeling. Then move forward. Often, I've found that the still small whiny voice will back off once it knows that it has been heard and acknowledged. Push against it, and it pushes back. But (and I really should have learned this by now, I relearn it daily, if not hourly) againstness is not the path to success with MS.

Or life in general, for that matter.

So, start with the truth. Yes, I feel like going nowhere. Yes, I feel like I have no energy or desire or creativity or anything worth sharing. I really don't want to do this.

That's absolutely true. Every word of it.

Now, let's get started.

Tuesday, November 3, 2009


A nasty week.

Started off wonderfully, got a big chunk of music written; I got half way through a new anthem for handbells, organ, and mezzo soprano. Came to a good stopping point, decided to take a break to go out to lunch with my wife, she was driving, she had to swerve a little--just a little!--to avoid something, and I was so startled that I "shorted out," developed some really, really nasty acupuncture blocks that only got cleared this morning.

I've been in this state for a while. "Easily startled" doesn't even begin to describe it. A slight noise, a bump on the road, accidentally dropping something (even if it doesn't break)--they're all just like a body shot with a two-by-four. My doctor/neurologist/acupuncturist tells me this is quite normal; "no insulation," he reminds me. He says that one way to get out of this state is just to take a break and recover, but to remember that such "resets" take time--you can't just "push the reset button" and everything's fine.

Well, that is of course a great idea, but a lot of people are counting on me right now for a bunch of unrelated things (creative things, things that I actually enjoy doing), so this isn't a good time to take a break from life to recover. But even if I could... the basic problem, and this is something that I keep coming up against, is that I don't really know what recharges me. I know I've felt better after doing iyengar yoga, I know I've felt better after doing kyudo, but I've been in a nasty energy state where I haven't had the gumption to do the things that make me feel better. And that state is where I spend an awful lot of time; I've been living there for years, even before the diagnosis--and if there's ever a time to discover the way out of that particular death spiral, it's now.

Reserves. I don't have them... not really. I don't have them because I don't know how to rebuild them. Winter is the season of the Water element, the gifts of the Water element are to wash things clean and to rebuild inner resources. This is precisely the season to rebuild resources.

The Science of Mind Church teaches that we already know the answer to our problems; our challenge is not to "find" the answer, but to see what's already in front of us. And as much as I believe that's true...

... I have no idea what to do. But seeking "what to do" is, undoubtedly, part of my problem.

Kyudo teaches us that "doing" isn't always the right answer. Sometimes the right answer is to get out of the way... which is also what Science of Mind teaches, they say we need to get our "bloated nothingness" out of the way. And if there's one thing we learn from Science of Mind and kyudo and MS, it's that the right answer is found through contention and againstness, it's found by integration, by listening, by releasing, by being open to newness.

It's hardly a "passive" road, but it's not about "doing." So, I guess, the first thing I need to release... is "doing" something about rebuilding my resources.

... Reading this, you can't see the long silence that followed typing that last sentence, but the I-just-got-the-koan "my brain just exploded" feeling I got after coming across that last idea, suggests that it's probably precisely the road not to take (that's "doing") but to follow.

Well then... time to follow the road.

Friday, October 30, 2009

How are you feeling?

An interesting question to ask someone with a malfunctioning nervous system.

The answer I gave someone this morning was, "Well, I 'feel' oddly, but I definitely 'feel' great!"

An interesting week. Various pots are boiling in my various spheres of travel (all political BS), but I'm not taking any heat from them. They're not my problem, and I'm definitely not inviting their turmoil into my life. In the upcoming week, I have to prep for a funeral I'm playing next Saturday for a colleague at the school who just died of some sort of brain cancer. Kids are singing "For good" from Wicked (for those who don't know the lyrics, they're all about the effect someone had on your life, the lyric ends with "Because I knew you, I have been changed... for good.") They want me to shake the plaster loose on the postlude, which I'm quite happy to oblige. It's a big Gothic stone church, they tell me it's got a great organ, and I'll do my best to blow out the windows. Thank you, Virgil Fox, for showing me how to let the light of the divine shine forth from the organ. And how to play real loud, that's fun too.

I need to write some music this weekend for a performance 12/20, finishing by next Wednesday at the latest so I can get it xeroxed in time for Thursday rehearsal. Need to write some OTHER music for a play at the high school. Need to build sound effects for a yet another, different play at the high school. Need to create a PowerPoint presentation for my ninth graders, to be shown in 10 days, about putting power back into PowerPoint, using what I hope will be humorous graphics appropriated from some of their favorite TV shows. And yet, I think I can do it, all of it. Man, what a difference from this summer. I even made dinner tonight, for the first time in way, way, WAY too long. Plan is to make cheese scones tomorrow, and just maybe, bring some with me to kyudo class. I miss my kyudo friends; the class is quite formal in the Japanese bushido tradition, which I used to enjoy but now may be a little rigorous for me. I'm a little self-conscious about my walking, I'm also a more than a little concerned about my walking, my balance is, shall we say, a moving target. (The first of those I should get over, especially among friends, but the second is a different issue.) In any case, it's certainly not kosher to use the bow as a cane, and I've had to do that more than I like in my own practice sessions. But it will be Celtic new year tomorrow (Sambhain), so it's a fitting day for a little bit of a celebration.

I think I've only got at most another week of "autumnal buzz" left, we're really moving into the Water season pretty quickly here in LA, which I've never found particularly supportive, energetically speaking. The cold I feel in my legs has been getting painfully cold, I've been lying with my feet under an electric blanket in bed. But, the spirit of the Water element is restoration of your deepest resources... who knows, this winter might be different, maybe for once the season will bring me some of that innermost restoration.

And wouldn't that be nice?

Tuesday, October 27, 2009


The air outside is absolutely lovely tonight.

Southern California somehow never has a real autumn. The crispness, the refreshing "zing" in the air... we just don't get it. I spent last weekend in Las Vegas at a magician's conference, and there was better, more vibrant air in the Nevada desert than there ever is in LA.

Tonight, it's different. There was a lot of easy wind this afternoon, and the air tonight is fresh and alive. There's a wonderful wistful gentleness to it; it's too cold to spend too long outside, but I keep going out just to breathe and feel the "roundness" in the air.

Interesting conversations at my doctor's today. We talked about my driving difficulties, that maybe the "warnings" as my feet miss the pedals are starting to come a little too frequently, it's time to start thinking about changing my transportation before there's no choice in the matter. I'll probably investigate a scooter for my commute to school, it's an easy and actually very pleasant tree-lined drive, but I ain't takin' a two-wheeled vehicle for love nor money on the LA freeways, so trips to the acupuncturist or anything out of the immediate vicinity may be a problem. I'm not at the "there's no longer any choice" point yet, but I definitely need to start thinking about it, rather than just thinking about thinking about it.

He also told me about another medical colleague of his, who often likes to order up nasty tests (for example, prostate biopsies) because he likes to be, in his words, "absolutely certain." Certainty is the one thing MS doesn't allow. We don't know how long we have to ... well, to do anything, really. Whatever "it" is, "it" can be completely over, the change seeping over you or slamming into you in a heartbeat. And what is there to do about it? Well, about MS, nothing. But about how to live with it? There's only one thing to do.


Wednesday, October 21, 2009

Ten to chi

Ten to chi: Heaven and earth. (One of the moments/moves in my style of kyudo. A moment of intentional alignment both within yourself and the world; and similarly, a moment of intentional connection.)

I'm writing to you from lovely Henderson, Nevada, gateway (if you so choose) to Las Vegas. I'm here for a magician's conference.

I've stayed in the same hotel every time for this event; walked these same streets in the context of conferences with like-minded people, for years.

This year, walking is very different. My legs don't work the same way they used to. This, I knew already; but walking on these streets, these familiar-yet-always-new streets, my leg disfunction is also fully familiar, but fully new. I'm experiencing it the same way I do every day, but somehow I'm getting the whole package anew, feeling everything for the first time.

Just looking at the conference lineup makes me want to cry--with joy. Usually, conference proceedings make you want to cry for the wrong reasons, often because you spent all that money and time to see the one, and only, decent presentation. In this conference, every presentation is the one and only presentation that you came to the conference to see.

I love this conference. I love these people. I love being here, thinking these thoughts, learning these things. In the midst of this, I'm feeling particularly--fully--aware of the MS and how it has affected my daily "going about."

Alignment, and connection. Ten to chi.

Saturday, October 17, 2009

Issha zetsumei

Three thoughts, today.

Acceptance. I've talked about this before. It occurred to me that true acceptance of something renders it... unnoticeable. "Drop things and they fall," we've accepted. It's part of the fabric of the way things are. Sure, we try not to drop things when we don't want them to fall, but the whole "falling" thing is just part of the world and we don't really think about it, we just work with it. When I'm working with my legs, and not noticing the act of working with them, that's acceptance. When I'm fighting with them and noticing how different they are now and all I'm experiencing is conflict... that's not acceptance. I visit acceptance, with my legs, but I don't live there yet.

Change. Driving has been getting a little odd and uncomfortable. My right foot, especially, is starting to have some significant problems finding the pedals, and (worse) staying on the pedals. I've reached for the brake and sort of hit the accelerator. Or I've reached for the clutch and sort of hit the brake. Fortunately, we're still at the "sort of hit things" stage. I leave huge distances between me and the car in front of me just in case this sort of thing happens at the wrong time, and fortunately it hasn't. Yet.

But that's what I'm worried about. It's a little better in our auto-transmission car, because the brake pedal is wider, and I certainly don't have to deal with a clutch. But I'm starting to get worried about maybe I can't drive any more--and I'm starting to really worry about taking a little too long to decide that I can't drive any more and maybe taking one too many drives. Now, I could get myself a scooter and that'd get me to work easily enough--the route I'd need to take, I've ridden my bicycle along, so it's perfectly safe as far as that goes, and grocery stores are reasonably close. But I'm not getting on a freeway on any kind of cycle for love nor money and especially not in LA, and not being able to take freeways anywhere pretty much imprisons me. It's an uncomfortable place, being simultaneously at "I really don't want to think about this" and "I'm a fool if I don't think about this."

Archery. I've been playing hooky from my kyudo for far too long. I've been really disinterested in walking and standing (see "acceptance," above) and although kyudo has only eight steps, the zeroth step that has to happen before anything else is "walk up to, and then stand at, the shooting line," and that's where I've been hung up. This morning I did some "air kyudo" (go through the motions without the physical bow and arrow) for the first time in a long time, and it was just wonderful. Wonderful. I practice a very "internal" style of archery, of course there is a form you're supposed to execute as best you can; but the important part is the spiritual part, and it's all about offering yourself and accepting what you are given, and doing both things with absolute freedom and absolutely without restriction. One of the great sayings of kyudo is "issha zetsumei," usually translated "one arrow, one life" but what it actually means is "one shot, then your last breath." Give of yourself totally to the shot, completely invest it with your whole self, the sort of total and complete commitment that you would give to the last thing you did on earth.

We ask the bow and arrow to show us how to live. The bow and the arrow always tell us the truth about ourselves.

Acceptance. Change. Issha zetsumei.

MS certainly didn't create those three, they're the human condition. But it certainly forces me to face them. All three of them. At once. Right now.

One of the gifts of MS.

Tuesday, October 13, 2009

Relief=Therapy (for once)

Y'know, it's really wonderful to have your primary care physician also be a full-on card-carrying neurologist. It's even better when you get to see him every week because he's also your acupuncturist.

One of my ongoing symptoms is sensations of cold, especially in the right leg, and it's worst from the knee down. Both my legs are running cold, but my right leg is worse (and it's also developing some motor problems, possibly because of the sensory/temperature problem).

Sitting in hot water--bathtub, or even better jacuzzi--feels wonderful. I do have to be careful not to overheat my core, but I can stay in to-the-waist hot water for hours.

So, my doctor says, go ahead and sit in hot water. What happens (if I can remember his explanation correctly) is that the warmth provides sensory stiumlation, which provides the nervous system input... which the nervous system uses to re-educate itself, to create new pathways that go around the cold/insensitivity problem.

I said, "So... symptom relief is actually therapy?"

He says, "In this case... yes."

Some times, the good guys win. I am SO hitting the tub tonight.

Monday, October 12, 2009


OK. So, this fall, I've been able to slam out an homage-to-Vaughan-Williams anthem in ultra-short order, and just finished today writing a Viennese-esque waltz for that's going to be (presuming the director likes it, which I think he will) part of the background music for the high school's winter play, and last week I slammed out a set design for the very same play, and Wednesday I'll probably be able to finish the set model. And I'm in darned good shape for my presentation that I'll be giving at a magician's conference next week. (Next week?!? oh my...)

Now, I know I get an energy boost in the fall, and the autumnal energy has been uncharacteristically good--if not uncharacteristically present, here in LA. I get more of an autumnal energy jag in Las Vegas, the middle of the Nevada desert, than here in LA. Nothing like New England, of course, but I'm here and it's there and that's the way it goes. Anyway, I am not at all disappointed or discommoded at suddenly being able to be creative, suddenly being able just to sit up at the computer and work with it, something I haven't been able to do for the entirety of the summer.

There's got to be a reason. MS seasonality? My own Fire energy not playing nicely with the Fire of the Fire season? (energetic Fire, not the brush fire that swept through the too-nearby hills)

Of course, now we're into the "my legs are wicked cold" season. The top half of me just loves the crisper weather, especially after the summer. My legs want me to hurry up and buy some new long underwear. Now. Really... now. Maybe I should go back to the Pasadena Plunge and their lovely jacuzzi.

Now that I have energy again... maybe I just will.

Oh, it is so nice to have good news to report, for a change.

Friday, October 9, 2009

Acceptance (see "elusive")

An interesting chat with my doctor this week. I related the story of the drum-set adventure I described in my last entry, he did quite a few neurological tests, he said he'd consult with a physical therapist he knew to see if whatever this is neurologically can be worked out/around via physical therapy.

But then we talked about "acceptance:" its virtue, and especially its virtue as an integrative force. And its polar opposite--denial--which can intrude itself very subtly into your consciousness and hang on with the most tenuous, adamantine threads, and even knowing that it's there and holding you back, and you are very quick to claim that you need it no longer, you just. Don't. Want. To really and truly let it go.

My introduction to acceptance and MS came with the cane. I told my qi gong practitioner that I was having problems walking, but I didn't want to get a cane because I "didn't want to give up, and somehow, having a cane meant giving up."

He said, "It's not about not giving up. It's about not falling over."

To return to last week's conversation with my doctor... he said that with MS, this call to acceptance comes daily. This particular call is hard for me because it involves music, the physical making of which I've done as long as I can remember. So I'm telling him that "I don't know whether 'it' is over," and he tells me to define "it," and I have to cop to admitting that it's "being a performer."

And then he says, "You're 'attached' to that." (That's not attachment in the sense of "affection," it's in the Buddhist sense.) And he's right. I am attached to it.

And then something else hits me, precisely these three words: Attachment is imprisonment.

It takes my brain a couple of seconds to recover from the "kaboom" that thought generates. And then I wonder, "Do I want to be imprisoned by the idea of being something?"

Whether I play music has nothing to do with "I am a performer."

So, acceptance, and integrative thoughts... I'm not sure I'm quite at the level of directly grappling with acceptance and the integration that it brings, but I think I'm a little less caught up in some of my dis-integrative thinking.

At least, today. This one... needs to cook a while.

But, forcing me to confront, and free myself from, my own self-imprisonment is a gift of MS.

Go figure.

Sunday, October 4, 2009

Success and failure

Well, since my last entry was all about what was going to happen, I thought it only fair to tell you what actually happened.

Evening didn't start well... Quartet had a rehearsal slot an hour before the show, and just as I had feared, I it took way too much effort just keeping my right foot in contact with the bass-drum pedal. Much less actually playing worthwhile notes with it. Another compounding irritant is that my leg reacts very badly to pressure being applied to the ball of the foot. It doesn't exactly cause "pain" as such, but it's really, really, uncomfortable. Pressure on the heel is OK, but the ball of the foot is not. Of course, that's the part of my foot that's most involved when I need to play the piano (which is especially uncomfortable, because I push down on the pedal and the pedal pushes back), when I'm driving and especially when I'm stuck in traffic, and when I play the organ (I tend to play theater-organ style, with right foot on the volume pedal a lot of the time). Anyway, my foot wouldn't stay under control and attempting to use my foot on the bass-drum pedal was causing me horrible amounts of discomfort, and after the rehearsal I went into my office and had all I could do to not break down in tears.

Well, anyway, whatever annoyances my foot/leg went through in rehearsal also made it harder than usual to walk (for my convenience). Fast forward to the magic trick I was asked to do--which I'm glad to report went very well, even though walking around through the audience was made disturbingly difficult by my leg's displeasure, and everything happened that was supposed to happen and everyone seemed to like it. (And many people, including my students, told me afterwards how much they liked it, which was VERY nice to hear.)

Fast forward to the music. Very interesting experience, of course; some of it was some of the best jazz-combo set playing I've ever done, even though I spent at least half the time with three limbs on autopilot and most of my attention focused on the uncooperative right foot. If I hadn't been fighting my own limbs, I would have really enjoyed it. No, that's not correct... even with the malfunctioning foot, I enjoyed it. Even though it was also more than a little, well, horrible.

Now, obviously, if I were a set player, I know exactly how I'd have to modify the drum pedal to eliminate the "wandering foot" syndrome, and if it weren't for the massive discomfort of pressure on the ball of my foot, I could probably practice/physical therapy my way to functionality. But I'm not a set player. And the same thing that made my right foot "wander" while I was playing the set makes it "wander" when I'm playing the organ pedals, and I definitely can't apply the same engineering solution to that problem. I will confess, I'm on the edge of wondering whether that was the last time I'll ever play drum set, simply because it was a rather horrible experience, trying to make music with a barely-controllable foot.

I definitely "don't want The Disease to win," so I'm definitely not willing to say "It's over." Whatever "it" may be... playing drumset, in this case, I guess. But somehow, I'm not motivated to rebel against it and scream "It's definitely NOT!!! over!" because... well, to be truthful, I don't know why.

I may need to let this one cook a bit. But sometimes "make no decision" is the right decision. We'll see how that one works, for now.

Saturday, October 3, 2009

Leap of faith

Well, this evening they're having a Big Talent Show at the high school where I teach, and somehow I got roped into performing.

They need the faculty jazz band (they call it "band," but it's "quartet") to play while the judges deliberate on the winner of the show, and they want me to do some magic (prestidigitation magic, not metaphoric magic) while they're setting up the band, both to cover the band setup and so that the faculty have some sort of solo-performer representation.

Well, I'm nervous. When I last rehearsed with the jazzers, I was having issues with my foot slipping off the bass-drum pedal--and let's be honest, I haven't played set more than once or twice since The Diagnosis, and let me tell you: out-of-practice and neurological damage is a bad combination. Oh, I have no doubt that I'll make it through just fine, but I would rather be spending my energy on performing than fighting the drum pedal.

And oh yeah. Magic. Now, I like magic, and the tricks I know, I can do. But I don't perform as much as I'd like (I like performing, but I'm not extroverted enough to just walk up to people and do magic for them), and even a tiny bit out-of-practice (even minus the confounding neurological damage) is not a feeling I like. At all.

Standing up in front of a room full of mixed-gender 15-year-olds and talking about online adult content, and how you really don't want to formulate your ideas about sex from watching ScrewTube home movies, doesn't bother me a bit. Doing card tricks, even the ones that I do--which are very, very carefully selected to have as close to zero failure modes as possible--make me nervous. And oh yeah, I get to walk onto the stage and into the audience without my cane, because I need both hands for the cards. Which means I'm doing it with my shoes off--shoes off, I get more data from my feet and the floor and I don't need the cane (as much), it's how I do all my classes.

But y'know, just talking about it right now... I'm going to stand up in front of four hundred people with my shoes off. You gotta admit, that's pretty funny. Too funny, really, to let myself get that worked up over.

I'll go rehearse the trick a few times, write some handbell music, take it easy. Enjoy what passes for "autumn air" here in LA. Have my favorite pre-performance meal, Thai "tom ka gai" soup. Rehearse with the quartet, then kick back for something like three hours before I go on.

And if I'm nervous and wigging out even a little before I go on, I'm going to look at my stocking feet... and laugh.

Wednesday, September 30, 2009


For a few months now, I've reported on very interesting acupuncture treatments, which were (I think) attempting to address significant deficiencies, or effect significant changes.

This week, I had the sort of treatment that I used to get regularly before The Diagnosis. Coupla points just to shore up my problem Officials, one point to shore up my energy, end with points to anchor the treatment in the Fire element. Pretty much a basic booster shot/regular oil change, if you'll forgive the mixed metaphor.

My doctor was very pleased at my state when I arrived at the office, and even more so at the end of the treatment. He smiled when he asked me what I had done to get into such a good state.

Well, as far as I can tell, it was being in front of my students. I like them every year; each new crop of students has its own charms. But somehow, this year... they smile. Easily, and enthusiastically.

So, looking back at the summer and the many dark times I had over those three "vacation" months... what were the differences between then and now?

Well, I must confess, I do always get an energy boost in the autumn; it's always been autumn's special gift. I don't get it in LA as much as I got it in New England (HOO boy, what a boost), but I'll take it.

The heat this summer was oppressive. Even when I was in the air conditioning, it was oppressive. And it was humid, which I've never ever liked, even before The Diagnosis.

One could make guesses about the energy of the summer, the season of the Fire element, and my relationship to that element. (If that makes any sense, even I'm not sure it does.)

But the single, biggest difference in my life since the summer?

Smiles. The laughter of, of all things, teenagers.

Beats the hell out of injecting yourself with interferons.

And because they're smiling, they get the benefit of their happiness too. Everybody wins.

Now, this is a real MS treatment.

Saturday, September 26, 2009


Today, I hammered out a new composition: A Vaughan-Williams-esque anthem for SATB choir and organ. Nice and big, oh so Anglican, and (except for a few chords with scary accidentals like C-flats) an easy learner and an easy reader. Done in one day.

This is what my life has been like for the past few years. Music just flows. Sure, there are little speed bumps along the way, moments where things aren't ... quite... working... But by and large, I reach into the bag of tricks and stuff just comes pouring out.

Except this year. Flow? Try "the scraping of the rusty valve" followed by silence. I didn't even have the strength to untie the knot on the bag of tricks, much less open it. Much less just to sit up before unknotting the bag.

Is the drought... over?

Dunno. But right now... I think .... it just might be?

Is it the season of the year? (Autumn likes me, I like autumn.) Fifteen-year-olds that smile back at me when I smile at them? (My students are particularly engaged and engaging this year, they have a gentle kindness that is really wonderful.)

Don't care. Whatever caused the floodgates to open... I'll take it.

Whatever it was... keep it comin'.

Friday, September 25, 2009

Better. Better?

The end of the second week of school. I got the important things accomplished. I got something I didn't want to do that much taken off my plate so I could do something I wanted to do more. (Whether I'll be able to accomplish that is a different question.) I had fun with my students. We had the most boys ever at Friday afternoon's anime club, I'm clearly going to have to bring in something with way more explosions next week. (Fortunately most of my library has stuff that has all three of good story, good character, and good action. Not a lot of comedy, but a lot of good brain melters... Evangelion, Boogiepop Phantom, that sort of thing.)

And yet, heading off to the store for some ice cream and aspirin, I had another sort-of-panic attack. What is up with that?

I'm almost surprised that I'm not suffering. I wonder if I'm just expecting the sort of energetic dry spell that hung a dark cloud over my summer... but I'm not at all under a cloud right now. I don't think that I have the "no problem, I can handle it, bring it on" energy that I used to have, but things right now seem like they're ... better?

This weekend, I need to write a piece of music for chorus and organ--it'd be best if I could get it finished this weekend, and it had better be an easy learner. Not sure I have a text that I like yet, but... we'll see what comes of it. And by Thursday, I have to rewrite a couple of handbell pieces, now that I know what sort of handbell choir I'm working with. (Small but enthusiastic.)

Strange, to have spent the summer in such darkness, and now that I spend most of my day with fifteen-year-olds, things are much, much better.

I don't honestly know if I'm going to be able to do the amount of stuff that I want to do, but I'm actually enjoying living, right now.

I always get an energetic boost in the fall... let's hope I can bank some of it.

Tuesday, September 22, 2009

The usual

Another trip to the acupuncurist. Another block unblocked. Even managed to have a civil conversation with someone at my insurance company (for once, they weren't trying to rip me off, no wonder I was confused until at least half way through the conversation).

And I'm back again to "Feeling ok, but want to do nothing." Specifically, I want to do nothing. This, too often, has been The Usual. Unblocked, dug out of the doldrums, lasts maybe a day or two at most, then back to the Pit; that's how it's been for months.

Instead of indulging my craving for nothing, I will in fact try to do something: oh, let's pick something easy... write out more handbell music, try to read the play that's going up in November that I've got to design the production for (tried to read it this weekend, it wouldn't go in the brain, probably the block's doing). Those are good enough for tonight's goals. Looking down the road not too far, I've got to work on music for at least two other events, and prep for a national conference at which I'm making a presentation. I'm sharing the stage with international award winners. No pressure, or anything.

In the Good Old Days when I was an enthusiastic overachiever--even last year at this time--doing this Big Pile of Stuff was a complete non-issue. Now, I feel like I'm a non-starter.

Well, the evening after an acupuncturing is not always the best time to predict the week's energy level, so I'm going to poke at the handbell music (it's a pretty easy project) first. Then the new Daily Show, then read the play.

But a first, moment to share the year's best news: This year's crop of ninth graders is very dear, and they smile a lot. This, by me, is simply wonderful. I always like them, they're always wonderful every year; but this year, they're gentle, dear, and sweet.

Exactly what I need. Daily doses of smiles--you can't ask for better medicine.

Tuesday, September 15, 2009

(No) Problem

School started today. Only one class, a very quiet group, but they smiled easily and sweetly. We're going to get along just fine. I meet the rest of my charges over the next couple of days, but I expect nothing but fun.

Over the course of the entire day, it was interesting to see what was easy and what was hard.
  • Talking to the ninth graders: Easy. First day is always tough and a little strange, but it was, by and large, not just easy, but fun.
  • Standing while talking to the ninth graders: Not so easy, but doable. I took my shoes off, that makes it better.
  • Walking from one end of the campus to the other: Definitely not easy. Five round trips from my office to the main office is mile (I measured it a couple of years ago) and I made at least three, maybe more.
  • Working at the computer in my office at school: Easy.
  • Talking to colleagues: Easy.
  • Driving home: Harder than I wish it had been. My feet don't interact with the pedals as cleanly as I wish they would.
  • Changing direction (for example, getting a phone call and suddenly I have to stop what I'm doing and do something else): Hard. Upsettingly hard.
  • Getting up/dressed/out of the house so I could hit the store and get my wife some congratulatory flowers and supplies for quiche-making: Surprisingly hard.
  • Dealing with Trader Joe's--a nice store, a quiet store, this particular store I've been visiting something like every three days for more than ten years: Very hard; hard to drive there, hard to take emotionally once I got there. This had nothing to do with the other people, nobody was annoying/vexing/anything me, but I was having something very akin to a panic attack--except it was closer to a grief attack.
I'm sure this means something. Or means nothing. I guess not knowing what it means (or whether it means anything) is symptomatic of not really knowing how to live with MS.

I'm definitely not sure how to live with things either being a huge deal or absolutely no problem. At least the things that are central to making my living are still easy and a whole lot of fun. It's just ... at the very least, so annoying, that so many ancillary, and in many ways (at least on paper) easier, activities turn out to be so damnably difficult.

There has to be a reason, right? Or else it wouldn't happen... I don't know if knowing the reason would make any functional difference in how I experience it, but it sure would be nice just to know it.