Thursday, June 30, 2011

The Matrix (really!)

A mind-shattering experience last night: Crispin Freeman's sci-fi/mythology lecture on film 1 of The Matrix trilogy. He tied together the film, Joseph Campbell's monomyth, Buddhism, and gnostic Christianity.

Just a taste: Keanu Reeve's character's original name was Thomas Anderson. Thomas: Doubting Thomas, the author of the Gospel of Thomas discovered in Nag Hammadi in 1948, a gnostic text. Anderson: Ander-son, son of man. At the climax of the film, he accepts his new name: Neo, a respelling of "one" (since he's The One) and "eon," a crucial term in gnosticism.

Morpheus (lord of dreams) kept telling Neo, "I can only show you the door. You have to walk through it yourself."

The easy glib jokes about my walking issues and my walker aside... I saw my own journey recapitulated. Just like Anderson before he was Neo, I'm not willing to go through the door. Sometimes even to acknowledge that the door is there--whatever that door may be.

But I feel a door calling to me, the going through of which will completely change my life in this M.S. world.

And I'm afraid to reach for the blue pill, because I don't want to let go.

Art imitates life imitates M.S.

It is indeed the hero's journey... even for one who doesn't want to walk it.

Tuesday, June 28, 2011

Deal with the choice

Had the weekly acupuncture treatment/dharma talk at the acupuncturist's today.

His conclusion: Something needs to change.

There are a lot of external things that can't be changed (such as the heat of the summer, climate and geography of places that I want to be for whatever activity, the distance I have to drive to go to the places that I want to visit and the challenge of walking/standing once I'm there, the people I want to hang out with who are unavailable due to children or careers or are on the Atlantic coast). There are physical things that can't be changed (how I respond to the heat of the summer, the difficulties I have standing and walking, the amount of energy I have at any given time).

My acupuncturist, and my other health-care providers, can do wonderful things, but there are things they can't change. They can do only what my body allows them to do.

What needs to be changed... is my consciousness.

That's one hell of a prescription, ain't it?

Or a "heaven" of a prescription...

I think I have the tools, I think I've always had the tools. But that's a "mental" thing, and using my intellect as the one and only tool is definitely not the path (believe me, I've been trying that one, for most of my life, and all of my M.S. journey).

First change of consciousness is... reach for the tools, and use them, rather than simply look at them sitting on the shelf and thinking "yes, those might be the tools, mightent they."

To choose to change. A choice the heart must make, not the head.

And you can't "think" the heart into a change. Believe me, I've tried.

I'm trying even as I type this. Even if I know that it won't work.

Interesting thing, this M.S. journey. Dealing with the elimination systems malfunctions, the loss of sensation, the loss of muscle control... those are easy, compared to this.

And yet, we deal with physical tribulations easily, because we have no other choice.

And now, a change of consciousness is called for; and again, there's no other choice.

And somehow, this one, but not the physical ones, is hard to deal with?

One friend told me, years ago, "You needed to get M.S."

I guess... he was right.

Sunday, June 26, 2011

Wind, the desert; love

Yesterday was spent in the California high desert (well, strictly speaking, at a house in a city in the California high desert). My father's 80th birthday!

I spent quite a while outside, out of the air conditioning, hanging out with my brother who was manning the grill. We had a wonderful, wonderful time.

But here's the M.S. related part of the story... all the time I was inside, I was surprisingly uncomfortable. The air conditioner wasn't set at "too cold," or anything like that, but I was certainly perceiving it as too cold. My core was comfortable, but my legs weren't at all happy. When I tried to walk anywhere, it was a-little-unpleasantly difficult.

Outside, with my brother, the thermometer on the wall read 98 degrees. In the shade. After having been out there for an hour, I had a vague feeling that I needed to go back inside, but my legs... ah, my legs. They were so very comfortable. As far as my legs were concerned, 98 degrees in the shade (8-12 percent humidity at best) was just wonderful.

At the end of the evening, we were sitting outside again, and by 9:30 it had dropped to somewhere around 80 degrees. The funny part about that was... everyone agreed: it was just a little cool.

But the wind... gentle, and very refreshing. I find a special magic in gentle, refreshing wind. Of all my cravings, some of which have become very odd on this neurological highway, that one is the one I've had from my earliest memories, and it's the one from which I have always found the greatest, most renewing, most profound blessing.

My legs want it hot. My core wants it cool. But at least they can agree on one thing: we love a gentle, refreshing, magical breeze.

The desert is a very magical place, in many ways. There's so little there, and yet... so much there. So much that's wonderful, there.

And now, it's the desert that is giving me gifts. In its harsh barrenness... it is gentle, and generous. And kind... and loving.

So, there's a calling: open your heart to the love that the life with M.S. extends you.

If there's love in the desert... might there not be love in M.S.?

Friday, June 24, 2011

A challenge ... ?

A day of triumph and defeat.

Made many phone calls, this morning. Drove myself to the oculist's for new glasses. Drove myself to grocery store #1. Drove myself to deliver a piece of equipment, get gas for a trip tomorrow, and on the way back home went by grocery store #2. While at store #2, picked up some lunch (we had never tried their vegan sandwiches. Bread was a little chewy/crusty, but the sandwiches were very flavorful.)

Submitted a piece to a publisher. Collected/processed/web-ified some recordings & got ready to put them online.

Got up out of my chair, thinking, "Well, I've got one more place I don't need to go today, but just because I seem to be doing well, let's take care of that, too."

Nope. Crash and burn. Lie down for a half hour, get up to try again; repeat. Managed to make it into the studio to do some Computer Stuff (including this); gonna slough off to the next room, do more Computer Stuff, maybe watch some tube.

I was doing so well, too. Oh well.

Gotta go to my dad's 80th birthday party, tomorrow. 'Sgonna be a Big Day. Wonder how that's gonna go? Well, at least I'll be able to find somewhere to lie down.

My doctor recommended a book for me, Stephen and Ondrea Levine's Who Dies? Not because he couldn't figure out an easy way to break it to me (not to spoil the book's ending, or anything, but the answer is "everybody," no surprise there), but because it is full of beautiful thoughts about forgiveness, and acceptance.

I'm only halfway through it so far, but one thing really sunk in: they recommend that when you come upon a fear, you walk right into it. Don't avoid it, don't run away from it, don't hide from it. Walk right up to it, and into it. This includes fear of pain, fear of loss, fear of death, fear of ... anything.

It really rings true. It's still sinking in, their thoughts on walking right into what you fear.

So when my legs quiver at night, when my head hurts, when my muscles ache, instead of lying cold and alone and desperately wishing they'd just go away... I need to walk up to them, and open my hands and my heart, and simply say, "Here I am."

So, is this my new challenge?

Or is calling it a "challenge" missing the point? Is not the challenge... to not contend?

Man, the M.S. road is a Zen trip.

Monday, June 20, 2011

Clouding the waters

A visit to the optometrist's today. Good news: Optic nerve looks great, as far as she's concerned we don't have to worry about optic neuritis (at least, coming in from the eye side). I'm going to need to move to a "two-glasses" system, one for computer work, one for dealing with the world; but that sort of thing is to be expected. Age, and all that. (And, her experience is that M.S. ages your eyes faster, so I've functionally got 61-year-old's eyes, not 51-year-old's eyes. The age thing, again, just a little more enthusiastic than customary. Well, at least something's enthusiastic.)

I'm experiencing a conundrum. I look at the calendar, and think, "Oh s&&t, it's going to be September any second now and the summer will be gone, and how am I going to do all the stuff I want to do?"

And I lie in bed until oh, ten o'clock maybe, just because it's really comfy, and I don't want to get up. I do get up, I do what absolutely needs doing (doctor's appointment, that sort of thing), today I had lunch with my wife (quite wonderful, both the experience and the food). Here it is, evening, and I don't want to do anything that requires any work. Any work. I'll like back and think, but even sketching ideas on paper, what little "work" that requires, is too much. "Well," I think, "Why don't I make that CD of the Pentecost service? All I have to do is drop in the track markers, that won't be too hard." And yet, somehow, I'd rather be doing something else. Lying down, for example. Part of it is that I really need new glasses. I have the new prescription, but I need to go to the oculist's to get it filled and then wait a week or whatever for the lenses to show up... but that's not all.

Walking is getting very close to no longer happening. I still can do it, but standing up takes quite a bit of effort. Oh let's be euphemistic, my elimination systems are extremely unenthusiastic. They work, I suppose, but they're hardly at their peak of efficiency or control (fortunately, the latter I still have enough of to keep "the worst" from happening, but that's about all it's good for).

And it's nearly the solstice. In the five element system, the season of Fire. Which I have none of. I think I have no fuel for it (that's Wood, from the spring), although the LA weather is still dipping its metaphoric toes in Wood, I can feel the Fire season rising. And it is not resonating with me, in the least. Summer has always been my "music composition" season, especially composing music for Christmas (it's been kinda funny, hearing the speakers pounding with Christmas carols in August), and I suppose if I put absolutely all my effort into it I'd be able to create something, but I don't feel the music trying to burst forth and manifest. I feel some quiet thoughts about a lecture I'm planning on giving in October, and those are nice, and I actually did a little piece of magic at a wedding reception (which was very well received)... but I'm used to summer being a time of Big Accomplishments. Big Creations.

And I feel small. And tired. And weak. Do I have something to offer? Intellectually, I think so; but emotionally, energetically...

I got nothing.

What is the gift I am supposed to receive, from this moment of the M.S. experience?

I don't know.

A martial-arts saying is "tsuki no kokoro," the spirit of the moon; a spirit totally quiet, like a pond that perfectly reflects the moon, that reflects so perfectly that aggression is simply returned to the aggressor.

There is no aggressor; M.S. is nothing, it does not exist; it is merely the label I have given to my current state. There is nothing but me, in this experience.

But I crave that quiet spirit, so that I can perfectly see whatever is shining down from the heavens upon me. Turbid. Cloudy. Not reflective.

So how do I stop stirring the waters? There's the question whose answer I cannot yet receive. On some level, I think that I must be stopping myself from receiving it; but right now, how to stop that... well, obviously, I don't know that either.

Saturday, June 18, 2011

Today, the answer would be...

An... interesting... day. "Interesting" in its variegation, if nothing else.

Spent a few hours assisting my wife, a superlative actor turning to a specialty of voice acting, to record some lines for a video game. She was superb. I loved every minute of it. I did a little bit of editing for her, taking out the empty spaces and the "let's do this one again" off-mic asides, getting it ready for her to do the hard work of compiling the final version to be sent to the producers.

She made us lunch. I enjoyed it.

Then... I tried to stand up. And nearly couldn't.

Somehow I made it to the bedroom, and hid with my face under a pillow for a few hours. Got up (almost couldn't), somehow made it to the bathroom and back (almost didn't), hid for a few more hours, then somehow made it back to the studio, and this computer. And, needless to say, almost didn't.

I seem to have acquired a new symptom; after I eat, I spend several hours feeling like "oh dear, maybe I shouldn't have eaten that." It's not indigestion, as I'm familiar with it, it's... unhappiness with having something in my stomach. Anything in my stomach. Haven't quite narrowed it down to whether it's specific foods, or any foods. I sure hope not the latter.

Over the past few days, I've had bad reactions to, of all things, tea. Green tea. Quality green tea, gently brewed. I've had more than enough "Well, looks like I can't have that any more" reactions in my day, and damn it, I don't want that to be happening with one of the only non-water-only beverages I still enjoy.

Two days ago, I think it was, I was looking at the calendar and thinking, "Oh crap--how will I be able to do all those things that I want to do this summer?" Today, I'm thinking, "Am I going to be able to go back to work in September?"

Good thing neither of those need answering today. Because, if I had to give you an answer today, to either question, it'd be "I can't."

Frequently, I'm able to get something done just for the sake of "damn it, I'm not going to be that crippled that I can't do something."

Well, I got this done, for that reason.

So I guess... today's not all that bad, is it?

(The same way that 4 degrees Kelvin is "Well, it could be colder.")

You take what you can get, in the M.S. world.

Wednesday, June 15, 2011


Change seems to be in the air. Oh, let's see, what has happened since I last shared with you...

On the neurological front, my legs are going number. Except when they aren't. Precision control is still absent. Walking is quite difficult. Except when it isn't. Had a moment the other day when a neurological malfunction might have caused me great embarrassment; except that a different, concurrent neurological malfunction, not even intending to do so, saved me from it. Even at the time, I thought it was funny.

Played timpani and sang at a Pentecost service; both went really well. A piece of mine premiered (a recording will be presented as soon as I have the chance to edit and web-ify it), which also went really well.

A church I used to write a lot of music for, to which I sent a piece just as an "for old time's sake" courtesy, thanked me for it and asked, could maybe I write some more small-ensemble stuff for them? (Of course I said yes.)

And a former student of mine (he's a college junior now) are digging through a friend's private collection of silent-movie music, and OH the stuff we're discovering, that nobody knows about. We're in hog heaven, even if we do spend way too much time in a steel storage container. I'm going to try to leverage our discoveries into an academic paper, and who knows? Maybe we'll also find some music that deserves to return to the light of day.

So, here it is, the summer that I want to spend recuperating from the year's efforts, and I want to (in some ways, I guess I need to) write two professional-level presentations for completely unrelated events, write the music I was thinking about writing for me plus write some music for other people, re-do the acoustical paneling in my studio to help my wife's burgeoning voice-over career plus from time to time (to time) help her by engineering her recordings, and make dinner more often than I have all year.

This, during my season of recovery and recuperation, are the plans. Fantasies, I suppose, is what they really are. Especially because my current pattern seems to be think big, have no energy to actually do things, feel bad. Wake up, and repeat.

I think the most prudent thing to drop in that pattern is "feel bad." Certainly, "have no energy" would also be something nice to drop, that would do a lot towards easing the releasing of "feel bad." But let's admit it, I can change my choices faster than I can change my metabolism.

Two entries on the Tiny Buddha blog seemed to speak directly to my current state; one on helping yourself, one on feeling complete.

Both of which I need to do. More than I need to write research papers or presentations, or write music; but interestingly, very interestingly, those external things are definitely helping grease the internal wheels. My biggest frustration with the M.S. road has been how my manifestation has been blocked; and now, my M.S. symptoms of leg numbness/lack of control are maybe on the increase (depending on the day you check them), there are parts of the day that I feel quite crippled by lack of energy, and yet the opportunities and the pathways to manifest my creativity are starting to flow back to me.

As I often say: comedy like this, you just can't write.

Saturday, June 11, 2011

Empty consolation

Still in darkness. (Didn't expect that to change. At least, not since I last posted.)

Walking has gone downhill, even more. This afternoon, I walked (I guess you'd call it that) from the garage to the mailbox and back. I had to use a cymbal stand as a cane (sometimes forgetting to put your equipment away has its advantages), and I think I was going at truly geriatric speeds. Let's see, it's maybe thirty-ish feet, round trip. It didn't take seconds, it took minutes.

Nothing reassuring in that, let me tell you. To console myself with "at least you're still walking" is not exactly consolation.

But, tomorrow might be different. Who knows? Stranger things have happened. For example, I got M.S. That definitely qualifies as "strange things happening," at least from my perspective. At the very least, "unexpected."

I usually try to come to some sort of spiritual understanding of things like this, but... not today.

An old saying goes, "Before enlightenment: chop wood, carry water. After enlightenment: chop wood, carry water." Well, I'm definitely not enlightened, and I definitely can't carry water. Or much of anything else... even carrying the mail back from the mailbox put me at risk, off balance and without both hands for support.

C. S. Lewis said, "What saves a man is to take a step. Then another step."

He said nothing about how fast to take those steps. Clearly, speed of walking isn't what it's about; it's persistence. And, I think, there is some consolation in that.

Friday, June 10, 2011

Throwing shoes

An interesting change, moving into "vacation mode" this week.

I have no plans. I have, at most, "maybe's." Maybe it'd be nice to do X. Or Y.

But I have no desires. Or barely any.

Next week, I want to spend some time (I think I "want" to spend this time) digging through some musical scores, on a research project that I have thought for a while would be fun to have accomplished. Or maybe even to do, for the thrill of discovery at "who knows what I'll find."

There are certainly some music projects that I think I want to do.

But as to actually wanting to do things? I'm surprisingly far away from that.

The M.S. road has been a surprisingly dark one. Especially now, as we head into the summer, I feel like I'm already in the darkness. My legs have, I think, gotten a little worse, walking is ... let's just say, "interesting." Various other things are functioning oddly or not at all. And yet, none of my darkness has to do with losing those physical things--at least, I don't think it is. I just kind of watch those things and say, "Yeah. Oh well." That may not be particularly heathy (psychologically or spiritually), but physical disability isn't driving my darkness.

It's lack of energy. Gumption. As the saying puts it, "My get-up-and-go has got up and went."

Sitting down to type this has actually been a bit of a victory over what appears to be terminal I-just-don't-care-ism.

The Tiny Buddha blog site has an article about knowing how and when to "let go." I'm sure that I'm being held in this state of dimness because I'm attached to something, but I really don't know what it is. I can guess at generalities, but specifics? I'm clueless. Now, here's something interesting: I see a pattern with certain things in my environment (having nothing to do with M.S.) that have changed, and I think for the worse, and I'm angry about that; but somehow, I'm not angry about, or with, how my life has changed due to the M.S.

I can't let go of either of these things, but at least I can feel, and cop to, the anger at the external changes. But I've never expressed, or even felt, anger at my internal changes. (Have I really, truly, never felt anger? I usually just sit there and say, "Yeah. Oh well." Acceptance, or denial? Honestly, I don't know.)

Separation from a problem will reveal its solution. (I guess "detachment" is part of "separation," isn't it?) I don't know how "caring enough to do something" could reveal a solution to "not caring enough to do anything;" but then again, "not caring" is precisely the problem. So, doing and not doing are both not the path. Which, to be honest, I've known (and experienced as expressed in different forms) for a while.

Another M.S. koan. Or the same koan I've been facing for a while.

In Zen stories, at this point, the master throws a shoe at the student, or just ups and hits him, and the story ends, "and he was enlightened."

M.S. has been throwing shoes at me for some time, now. It hasn't worked yet. I guess I'd better do whatever it is that's being asked of me, before the shoes start getting heavier. And hobnailed.

If I only knew how...

But then again, that's the point of the koan, isn't it? The facile answer is never the right one.

Tuesday, June 7, 2011

On balance...

I made it through the Commencement service. With style.

Thank heavens, I'm quite familiar with the organ, and because as a theater organ its manual stops can reach the pitch normally played by the pedals, through creative rule-breaking registration and rewriting the music on the fly, I managed to make it through the scariest part of the ceremony—the processional—just fine. And I'm the only one who knew what I did to pull it off... which is exactly how it's supposed to be.

And best of all, I know that next year, if my legs don't improve, or even deteriorate, that as long as I can get onto the console, I'll be able to perform.

And that's really important to me. To not have to "pull the plug" on being an organist. That as long as I'm working with the right organ, playing the right pieces... I'm still an organist.

That's a real relief. (very happy sigh)

Today, my legs, below the knees, are more numb than they've been in a while. I've only got one more meeting to go and the school year is officially over, I had many fantasies of spending the summer writing music, and... I've got no energy to do it. I went in to the school today to do some "sitting at my desk and typing" work, did a quick "run to the store" errand, then came home and crashed for hours, and it took a lot of doing just to type this. I even have a recording of the commencement performance to post; I don't have the gumption to get it together and do that.

But when I have the energy, the right instrument, and the right music, I'm still an organist.

I feel like I don't have a lot, right now... but that, I still have.

On balance... I'm ahead.

Saturday, June 4, 2011


Tomorrow, I play a commencement show. I'm playing the organ, and conducting from the console.

Both things I've done many times before. This particular show, I've done thirty-seven times before. I have the best brass players in L.A. backing me up. I expect that everything will be fine.

And yet, I think... I've shifted from "anticipatory adrenaline shock" to "terror." Quiet, but still terror.

Because as many times as I've played this gig, I've never played this organ, and this gig, with next to zero control of my legs.

Yesterday, I had a wonderful dinner with a wonderful fellow who had, and has recovered from, his own neurological disaster--a cerebral hemorrhage, I think it was (something quite serious). He said that it made him unable to edit video as he always had before... but he learned how to do it, all over again, and he actually felt like he was better at it from having gone through the experience.

I wonder if I'll feel that way about my M.S. tomorrow, after the gig is over. Rationally, I'm completely sure that I'll be able to do just fine.

But I'm terrified.

I'll get back to you after the show and let you know how it went.

Damn it, I know there's a gift in this, somewhere; a gift that I could only receive for living through the show, M.S. and all. If I only keep my mind, heart, and spirit open to receive it.

Just because I'm sure it's there doesn't mean I'm not terrified.

In approximately 23 hours and 30 minutes, the hardest part (the processional) will be over. The recessional, that's easy; I conduct and play the cymbals. It's the improvisatory "how long will it take them to get into the building" that I'm worried about. The sort of thing that wedding organists--which I once was--do all the time. It's not part of the job, it's part of the fun.

And I think I'm actually terrified.

I've felt (or tried to keep from feeling) many things, on my road with M.S. This terror, somehow I can't deny.

I wonder if being forced to live with the terror isn't, actually, one of the gifts that I've needed to receive... not just to receive, but to embrace.

Damn this disease. Making me confront things I never wanted to confront. Just because life is like that anyway doesn't make this any easier.

I'm gonna go hide now. A qi gong treatment tomorrow a few hours before the show, will (I really, really hope) help me through it. So, perhaps, will thirty-seven years of experience, who knows?

And no matter what happens... I always bring cookies to the tech crew at the auditorium at which we hold the commencement.

The organist, having done this show dozens of times, is THIS time, terrified. And still, he brings cookies.

If I can still see the humor in the situation... I'll definitely make it through.

I'll let you know how it went.