The Gifts of MS

The Cave

2012-01-28T11:03:00.000-08:00

This came across Facebook this morning, and I immediately thought of you, my gentle readers:

‎"It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure."
—Joseph Campbell

Well, if it's one thing we M.S.ers do all too readily, it's stumble. So, by Campbell's assessment... is it here, in the life with M.S., that lies our treasure?

Mayyyybeee... to strictly follow Campbell's thought, this would be our treasure only if we were in the abyss.

Are we?

My (recent) journeys into my own personal abyss may have been occasioned by M.S., but they weren't caused by it. If anything, the M.S. journey has been the fire casting shadows on the wall of Plato's cave, and the first shadow I see... is my own.

Because in the Cave, it is only because of the light that we can see our own shadows, and those shadows clarify the reality of the walls that surround us.

So we M.S.ers may not all resonate with a call to "stand up" and walk out of the cave, but we can turn around, and pull a piece of wood out of the fire, and use it as a torch; and use its light to reveal... what?

That's the mystery, isn't it? We'll see, won't we? Only by the light of the fire, will we see; only by using the fire, will we see the truth of the Cave. Light is the gift of the fire...

And for us, the gift of M.S.

Laugh

2012-01-27T19:29:00.000-08:00

Just so's you know, gentle readers, that I spend my M.S. Moments in something other than poetic Zen musings and omphaloskepsis... I had another one of those Humor You Can't Write events this afternoon.

Let's see how I can phrase this in a genteel manor... So many of us M.S.ers have moments that we can categorize under ... Whizz-o-mania. For me, these moments often involve cups provided by That Major Coffee Chain; and I'm sure that some of my gentle readers might feel that said cups have been put to no more noble use than these.

The first of these moments was a couple of years ago, on a trip to Vegas. I had been on the freeway Much Too Long, and what had been promised to be a wonderful route was slogging nastily, L.A. style. And I'm praying that My Exit will arrive soon, oh God, please, soon... and eventually I come to the exit, and I pull off, thinking that I'll stop immediately at a gas station, and all will be well.

There are no gas stations.

Alright, I think, desperation increasing with every passing second... I'll just pull over.

Nope. Nowhere to pull over. "No stopping," as far as the eye can see.

Finally, I find somewhere to pull off the road, and I grab the magical cup, and do what I'd been hoping to do for ever so long. Ahh... life is wonderful. But "wonderful" is short-lived...

The cup is getting fuller, and fuller, and soon it's going to overflow... and I can't stop filling the cup. No matter what I do. I try the muscular-control method. Nope. I try mechanical methods. Nope.

Fortunately, some sort of control (I forget exactly what finally worked) returns before disaster strikes. Finally... all is well. No harm done to anything, besides the whole "having to live through the experience" thing.

But even at the time, I thought it was funny.

So anyway, back to today... I'm seeing a reprise of those unforgettable moments. I'm at the market, and I start walking into the market, and I know that (since walking "hastens" matters) I can't walk all the way in to the store without spectacularly "hastening" something both pleasant and unpleasant. Back into the car, desperately grab for the emergency cup, and ...

Nothing. I'm expecting exuberant torrents, and... nothing.

You were so insistent, I think. Desperate. Panicking. Threatening imminent disaster. And this... this is all you got.

Eventually... something happens. I think something happened, at least. After a while.

And this too, at the time, I thought was funny.

Y'know, we're not afforded control of our basic physical functions, and we're handed all sorts of unwelcome surprises...

But nothing says we can't laugh.

Some "disease," huh?

2012-01-27T10:26:00.000-08:00

A brief intermission:

Art imitates life... I sit down to type this, my Ever So Convenient wireless Apple keyboard doesn't want to connect to the computer. Then it connects. Then it doesn't. Then it does, but it does so poorly. And in a few moments, or eventually, depending on how you want to look at it, everything is working just as it's supposed to be. For now.

It's not like I don't live this way, 24/7. A life of intermittent, variable, puzzlingly misbehaving connections, thanks my ever-present Neurological Nonsense. I don't need to have this chunk of hardware exhibiting my problems, too.

Sorry for the extended aside, but... it seemed to fit the situation, y'know?

Anyway, on to the man topic of the day...

All of us M.S.ers know that The Disease brings us "sensitivity" in odd ways. Some physical sensitivity, the simple sensations of "touch" in my case, significantly degraded; many sensations, especially temperature, completely confused. But in other ways, sensitivity (of many kinds) has gone way, way, way up.

Something that I have become very sensitive to, in the last week or so... is speaking from the heart. Five-element acupuncturists would call what I'm feeling not just "the heart," but the capital-H "Heart," the "Heart official." It is the Emperor, the Supreme Commander, and directly connected to the Divine; the first point on the Heart meridian is named "Utmost Source."

But especially in speaking to my students, I can very distinctly feel when my Heart is fully engaged. It's not simply (and only) about "being passionate" or "speaking my bliss," as Joseph Campbell might say... it's something that underlies both of those. It is very powerful, and very patient, and profoundly compassionate.

And I can also feel when I'm not connecting to my Heart. Speaking peevishly. Speaking angrily--anger is definitely not patient or compassionate (shudder). Getting stuff off my chest... Sometimes those things are necessary to process and release stuff you don't need; sometimes those things are just massaging to the ego, or habituated massage to the ego.

But I can really feel the difference between speaking from the Heart and... not. And when I back off my bloviation enough to witness my process, "not connecting to the Heart" feels very empty.

I've felt this sort of thing before, especially playing percussion in orchestras, sometimes while I'm writing music. But ... man, the sensations right now of being "in the Heart," when I'm there, are vibrantly clear. Ragingly vibrantly clear. And when I'm in that State... it's glorious.

But sensitivity... being this sensitive... is a gift of M.S. And the process of living with The Disease, and all that this journey entails, has brought me to precisely the point when it's time to start feeling these things. Because... I think the State would really much rather I spent my time with it, rather than habituatedly massaging my selfish petulance. I know I would.

So a disease that's all about "bad connections," within the nervous system, and reduced perceptions, even numbness... is bringing me to a place of increased perceptions, improved connections, marvelous clear sensations. Oh, I'd be ever so happy to bid farewell to the Neurological Nonsense, and simply to walk free and unassisted, anywhere I wanted to... like over the rough terrain at the archery range so I can practice with my bow; to be able to kneel and rise and perform this particular kyudo ceremony that I've always really loved; to play my beloved organ again! But clarity and compassion, and connection to the Utmost Source... there, I wanna stay.

Some "disease," huh?

Bicycle metaphors

2012-01-24T16:46:00.000-08:00

An interesting blog-u-lacious synchronicity, this morning.

Seth Godin, marketing maven, shares a beautifully to-the-point comment on personal responsibility. It can be tempting to "blame the M.S." for fill-in-the-blank on whatever's torquing you off at the moment, but one of the most unescapable gifts of M.S. is the reminder that M.S. doesn't exist; there is no separate entity "M.S." that's doing things to you. Only you exist. "M.S." is just a convenient cataloging of some components of your current condition; but there is nothing other than you. There is no separate enemy; there's only you.

And on Tiny Buddha, Melissa Moore muses on facing fear, using the metaphor of letting go of the handlebars while riding your bicycle.

It's an interesting metaphor in the context of the difficulties walking that some of us M.S.ers face (myself included). We long to take our hands off the wall, the cane(s), the walker, and proudly walk, even run, completely unassisted. We don't, because we're afraid of falling—because we have fallen, and we know we very well may fall again...that we will fall again. It's neurological nonsense, bad wiring, not fear, that we're up against. Because we're willing to let go, we're so willing to let go... but prudence counsels us to hang on. Right now, at least.

And the one thing nobody tells you while you're learning to ride the bike, is that if you're going fast enough, you can't fall over. Sure, you can hit a pothole or skid or any of the usual vehicular irritations, but barring those, if you're going fast enough—you can't fall over. Thank the glorious physics of the bicycle and the world we live in; once you hit the magical speed and keep going straight (enough) ahead, you'll stay up. There's no way you can fall over, as long as you're moving forward with a certain velocity.

But even for us who have balance and locomotion issues, the bicycle metaphor still has meaning. We need to move forward. To let go of the fear of falling—of failing, because we're not sure how to ride this neurological life-cycle—and move forward. However we can, however we're able. To start pedaling, because when we're going fast enough, we will be able to let go of the handlebars and keep moving.

Seth says, "If you think you have no choice but to do what you do now, you've already made a serious error." And he's right; if you try to go forward too slowly, or not move forward at all... there's no way the bicycle can stay upright. You will fall.

Another gift of M.S.: Our very own bicycle. It may be a recumbent bike, it may enable you to use your hands rather than feet on its pedals... but one thing it does not have, is training wheels.

Go forward, and keep going forward, steadily and without fear;

and you can't fall.

Endings create... ...

2012-01-22T16:08:00.000-08:00

So, for whatever reason, I've been finding myself running through mental lists of Things I've Parted With.

High school. High time to get outta there. Had no problem saying goodbye to that. Ever read Lord of the Flies? But that's another story... Anyway, it was definitely time to end that particular story. No problems saying farewell there.

College. It was a near thing... I nearly bailed out of that particular plane earlier than planned (not necessarily wearing a parachute), but I made it through to Actual Graduation and everything. It was Time to go, but somehow it was OK. I did postpone the "going" for a few years (picked up a master's degree in the process) but eventually, really-and-truly Go all the way out, I did. And when I finally said goodbye to that school and that city, it was Time. And it was OK.

The jobs that let me go, and those that I left because I had to. And all of those were definitely OK; some, more OK than others. But each of those endings created a new beginning. And both the endings and the beginnings were definitely OK. One of the endings was spectacularly horrible, but it created a wonderful beginning.

There were girls that I loved, and said farewell to. Sometimes it was my idea; sometimes it was her idea. As one of them said (when she delivered to me the most horrible breakup I ever suffered through), "It, whatever 'it' was, is over." Every ending of those particular stories were very, very painful. But horrible as the break-up experiences were, all of them were necessary. Even the nastiest of them. And it was that very "most horrible experience" that created the most beautiful experience that has ever happened to me... and 25 years later, I'm still married to her. And damned glad of it.

It certainly puts the M.S.-"inspired" changes to our lives into an interesting perspective. The elimination-system challenges that many of us face... Really? That was necessary? It was only that, that was the one thing that was required to create some beautiful new future, that could only have been made possible because we had malfunctioning elimination systems?

This one... I haven't figured out yet.

Others, though, are clearer. Now, I'll admit, I actually enjoy the hand controls in my truck. I enjoy driving the truck now far more than I ever did when it was a manual-transmission vehicle. I enjoy driving the hand controls more than I enjoyed driving the semi-luxurious auto-transmission vehicles that I've owned. And that never would have happened, had I not lost fine motor control in my legs. And when they replaced the manual transmission with an automatic, which is necessary for hand controls, they also replaced the engine with one that had 120,000 fewer miles than the original engine... so I basically got a new (used) car with the new controls.

Connecting me with a completely-worth-the-price replacement vehicle, and enabling me to drive it. A very surprising gift of M.S.

Then again... I'm sure I'll hear someone say (perhaps it'd be me), "But it also means you can't walk unassisted, and can't go up ladders to work on theater lights like you used to, and can't play the organ like you used to, and you've been too scared to even try your bicycle, even on level ground... are the loss of those worth the 'fun' of the hand controls in your car?" Oh, hell no. I wish I still had all those things. But... I don't. (At least, I don't have them right now... one never knows, in the M.S. world, whether things that depart will come back, or whether things that haven't left yet will leave as well.)

But it doesn't mean I can't enjoy my hand controls. A trade? Not in the least. But a benefit? Something that I ... enjoy?

(Grudgingly, he nods.)

Some things that I don't do any more... it was OK for it to be time to set those aside. Except when it isn't. The organ is something I can, and can't, say goodbye to. Some organs are built in a way that enables me to still get away with playing them; I can still deliver a perfectly good, within the context of the event, performance. Even a powerful and enjoyable one! But I can tell the difference, and I remember what I used to be able to do, and I don't like not being able to do what I used to be able to do. I'm still not sure how to handle the "goodbye" to this, yet... To what I can't do (at least, right now), I have to say goodbye... but to the instrument, the organ? That instrument, and what (in the correct context, with the correct instrument) I can still do with it... and all that I have done with it, and what it has always meant to me? To that, I can't bid farewell... not yet.

And yet, with every "ending," especially the most soul-wrenching ones, I've never seen the Great Machine of the Universe fail me... An ending, even horrible, horrible endings, creates a beautiful, beautiful beginning. The Taoists told us this several thousand years ago; up creates down, dark creates light, ending creates beginning. It's the way the universe works.

So, I'm looking at some pretty scary "endings," that M.S. has gifted me with. And I have to be honest with you... scared as I am at what these endings may mean, I know that these endings are gifts.

And those endings are going to gift me new beginnings. M.S. and all. New beginnings that I would have never seen had I not found myself on the M.S. Highway.

And the only way to receive a gift is to accept it with open hands and an open heart.

I'm terrified at what is going to happen. And thrilled for what is to come.

Ah... the gifts of M.S. ...

"Sick" (in quotes)

2012-01-21T20:07:00.000-08:00

By some assessments, because I have M.S., a disease, some would say that I am perpetually "sick."

Right now, I actually feel sick, but it's not an M.S. exacerbation (whatever that is) or anything neurological. It's best described by Traditional Chinese Medicine (T.C.M.) as Wind Heat, something that comes upon me pretty much every winter. Wind and Heat, of course, being two of T.C.M's "Pernicious External Influences." That terminology isn't unique to T.C.M.; in Japan, you don't catch colds, you catch kaze, Wind.

It usually starts as nasty hot, burning, back-of-the-soft-palate dryness, and then some sort of Gunk settles deep in my chest. I skipped the usual dry burning and went right to the Deep In The Chest Gunk.

So, I've got an immune system that's wacked out by I'm not sure what and attacking my myelin. Or, according to one of my Chinese herbalists, I've got some sort of Heat scorching the lobes of my Lung, because Kidney isn't creating enough water to cool the fire.

However you want to look at it, I'm sick.

And somehow, sick-plus-M.S. feels especially sick.

Now this is definitely humor you can't write. Feeling sick is irreproachable proof that you're alive; you feel yukky, yeah, but you feel fully present in your body.

Not like the M.S. doesn't bring us extra sensitivity. Sensitivity on top of sensitivity, and feeling yukky through that "lens" of increased sensitivity...

Yeah I feel like crap. But I'm definitely alive!

And, you know, given all the things that have been lost by our walk on the M.S. Highway...

That's gotta be worth something.

Terminology

2012-01-20T17:57:00.001-08:00

My fellow travelers on the M.S. Highway, I say to you: we are not alone. We are not alone in our anguish about It (whatever It is) being interrupted, being over too soon... too soon.

I ran into a friend of mine today who, for a variety of health reasons, is having to take retirement earlier than he thought he would. Now, I must say, his own life highway has been a spectacularly rough one, and he has lived through all sorts of things that would easily fit into Nietsche's "That which does not destroy me makes me stronger" category.

And he all of a sudden ... "has to," shall we say... take retirement.

And he is not going gentle into that good night.

And the Great Machine of the Universe is presenting him, just as it has presented to us, very unwelcome lessons in detachment.

And he doesn't like it any more than we do.

Does the fact that other people suffer make me feel "better?" Does their pain reduce mine? Of course not; if we were in a room full of grand pianos each of which was resting on one of our hands, saying "Well, everybody else has a grand piano on their hand" wouldn't make me feel any less pain from the piano's weight on my hand.

But it certainly does remind us that, no matter why we face the challenges of "it's time to change the way I live, whether I'm ready or not," we all react in sadly similar ways. And there's a technical term for people like my friend, and like me, and like all of us, who find unwelcome confrontation with our situations to be particularly painful, particularly wrenching; reaching deep within us and grabbing us by our very soul. Yes, there's a technical term for people like us:

"Normal."

Books

2012-01-18T15:57:00.001-08:00

Another interesting entry on the Tiny Buddha blog. Someone is sharing an overview of his book, Aging as a Spiritual Practice.

Well, I've been living the life on the M.S. Highway as a spiritual practice. What he describes as what he's had to deal with in his aging... I've hit the same marks, just a little sooner than he did. (Or would have liked to.)

I wonder if there's a book about my road, waiting to be written?

Something else to think about... wouldn't that be an unusual gift of M.S.?

House hunting

2012-01-17T20:07:00.000-08:00

The last thing I would have expected after The Diagnosis was engaging in so many body/mind/spirit heart/head battles, especially given that my head has been trying to take command from and/or (usually "and") squash my heart. In the Five Element system, the Heart is the Supreme Commander; the Emperor. Trying to take command from the Emperor? That story always ends badly, for everyone involved. (Especially me.)

And then having no choice but to confront mis-spending the life of the spirit, as inescapably and (oh let's call it this, I can't find a better word at the moment) "enthusiastically" as I have. Forced confrontation with a need to completely change my life: this has definitely been one of the most unusual gifts of M.S.

And here's this week's surprise coincidence: The Universe has been sending me not just brute-force-mallet-to-the-head messages (e.g., M.S.) but light-tap-with-the-mallet-to-the-head coincidences.

My doctor today and a couple of wonderful friends last week—unbelievably caring and creative friends they are, when they can tell you the truth with love, a large amount of truth with an even larger amount of love—both gave me exactly the same message, in those two different times and places.

Why are you fighting so hard to justify what you know is the correct decision to turn away from the wrong path? Stop talking about why it's OK to not want what you don't want... what is it that you do want? Let's talk about that, instead!

And perhaps... actually identifying and seeking the right path might be a ... better use of that energy?

I mean, really... Would Superman spend any time fighting with someone about why he shouldn't live in a house made of kryptonite? Justifying his desire to not live in a house that would kill him? Spend all that time and energy having that argument, justifying his desire not to die, instead of leaping tall buildings with a single bound?

Hell, no. He'd just go house-hunting.

The Tiny Buddha blog discussed something similar to this issue in today's entry. It's related to one of the limbs of the Eightfold Path: Right Livelihood. There's no avoiding that one must somehow acquire the Four Necessities: food, clothing, shelter, and medicine. (Especially for us M.S.ers; "medicine," even if it's not Official M.S. Medicine, the cost of which can frequently exceed the cost of the other three Necessities.) But where is it mandated that the way we make provision for the Four Necessities should be a poor—or worse, a bad— use of the most precious thing that we have: moments of our lives?

I got enough problems with a crotchety nervous system. Why am I working at having problems outside my nervous system? Man, just "talking" about this with you, about how I've foamed at the mouth over why it's really, really a bad idea not to live in a house made of kryptonite, and here's why, and here are some more reasons, and here are even more reasons, don't you get it yet? Here are a few more reasons...

Man, I feel silly. Well, as I say all too often, the M.S. Highway is full of humor that you just can't write (except you do, you write your own jokes more often than the highway supplies them to you).

And I gotta laugh. I am silly.

Time to hero up and go non-kryptonite-house hunting.

A single-story non-kryptonite house. With doors wide enough for my wheelchair/walker, should I need it inside. And a big enough bathtub that I can really enjoy a soak in.

I mean, if what the Good Book says about "ask and ye shall receive" is true in the Real World, shouldn't it be true for a metaphorical search?

Because the Universe does have an amazing sense of humor... doesn't it?

Dancing

2012-01-16T20:09:00.000-08:00

I saw an absolutely amazing film this weekend. I never go to movies, and even more than that, I have no interest in 3D and have specifically been not chasing this phenomenon. And yet, I went to this one. PINA, a film for Pina Bausch.

And it was worth it.

And I strongly recommend you go see it.

Lots of powerful stuff, on many, so many, different levels.

Dancing, of course, lots of very unique dancing; but what really stuck with me was the performers' commitment. Not a single move was ever made that didn't have the performer's entire heart, soul, and guts, completely invested. 100%. 1,000%.

A bit of dark humor; one of the performer's dances was done seated on the floor. To describe it briefly, roughly, he was "rearranging" his legs, using his hands and arms alone; he never used his leg muscles to move his legs. You'd think the dancer had precisely the amount of "control" that I have over my legs... Straighten one leg; bend one; flop the bent leg down so the knee hits the floor, but keep the leg bent; move the other leg; spin 90 degrees; repeat. One of the most agile, athletic, artistic performers I had ever seen, doing that artistic performance with about the same amount of "agility" that I have. And yet, what "little" he was doing, he was doing with 100% commitment. 1,000% commitment.

But what really got me, and what made me cry, were the final words of the film. Pina's words, spoken with Pina's voice...

Tanz; tanz, oder wir sind verloren.

Dance; dance, or we're lost.

Fewer words could be directed more appropriately, more directly, more perfectly, to us M.S.ers. They're not about dancing as dancing. They're about living; living the way that Pina approached dancing.

Dance your dance. Not the dance you're "supposed to do"... when you know damned well that it's not your dance. Especially when doing that dance would keep you from doing your dance. Dance the dance that only you can do. The dance that you have to do. As Miles Davis said of the way he played the trumpet, "It's my 'thing.' It's the reason I was born." Your dance is the reason that you were born.

And commit. Commit 100%. Commit 1,000%. Commit and engage with your mind, your heart, your soul, and your guts. With everything you have. Everything.

And remember what one of her dancers said that Pina had told her: "You have to scare me."

So, my friends...

Dance.

Dance, or we're lost.

Metaphor

2012-01-14T18:39:00.000-08:00

I'm sure there's a metaphor in this, somewhere.

I've decided to polish and re-release a booklet I wrote in 1985. I don't have it in electronic format, but (thank goodness) at least I have a printed copy. My wife suggests that rather than retype it, I should OCR it. Now, I remember when Home OCR first arrived on the market. It was shaky and dubious at best, didn't really work well unless you were scanning things like old-style IBM-Selectric Orator type, and its output was always comically, and tragically, rife with errors. But I figured, it can't take as long as retyping, so why not go for it?

So I go to the scanner, which I (thought I had) carefully reconnected to the desktop computer weeks, if not months, ago. The scanner is not exactly in a convenient place, since I use it to photocopy and scan so infrequently (plus it was the only place I could install the bloody thing anyway, in a studio not that well equipped with "desk space"), and even before The Disease it'd have hardly been easy to get at. Over the course of several minutes I fight my way over to it, amazingly enough not knocking things over or hitting the ground. I push the "on" button.

Nothing happens.

I gently yank on the power cord, just to see where it runs. Oh dear, I think, it's going through the tangle of cords that connect to the ... oh crap... Sigh. Well, even before The Disease, that'd have been a flaming pain in the (fill in the blank) to trace and debug, so I figure, maybe it'd be better to move the scanner to another room and plug it into the laptop. I had done that successfully the last time I had a big pile of things to scan, it worked just fine, so... what the heck! Let's go for it!

More almost-disaster/would-have-been-funny-had-it-happened-to-the-Three-Stooges wrangling of The Device through the various cluttered-office-minefields surrounding the desk, and eventually I get it to the Other Room. I plug in the power supply—and its "power" light comes on. Good. (Whew!) I turn on the laptop, and sit surprisingly comfortably on the floor in front of the laptop, in the half-lotus position. That position has never felt this good before, I think happily. I push the scanner's "on" button.

Nothing.

Oh crap, I think. And then, suddenly it dawns on me... I've been pushing the wrong button. The "scan" button and the "on" button look a little too alike, and the "scan" button is far easier to see. And push.

Great.

So I push the right button, and power comes up just as I expected it would. I do the scans, everything works perfectly. And I'm actually enjoying sitting on the floor in the half-lotus position—whaddaya know, all this weight loss in my legs has actually increased some comfort, for once. Actually, it's really comfortable! I like it.

And then... I try to get up.

Repeat the near-disaster/near-Three-Stooges-esque part of the adventure. Eventually get up. Somehow manage to pick up the laptop, and somehow make it to another room, which has my favorite comfortable chair, where I sit to finish the job.

The OCRing worked perfectly. Fifteen minutes later, I have an electronic version of my booklet. I'm ready to do some editing/rewriting/re-desktop-publishing, and prep it for release—that'll be easily the work of several days, but it'll be (I expect) fun. I always have enjoyed writing.

OK. So here's where I'm looking for the metaphor...

I kept pushing the wrong button. Again and again. That's why the machine "didn't work." (Technically, it was working perfectly, since it's not supposed to turn on when you press the wrong button, but that's another story.) After I pushed the right button, suddenly everything was beautiful.

If I hadn't been pushing the wrong button, I never would have had so much enjoyment in the simple activity of sitting in the half-lotus position. (I've always preferred this of all the various "sits," but it's never felt as good as it did today.) If I had been in the original room, using the scanner in its original position, I would have had to do all sorts of "Am I gonna fall over this time?" picking my way around the edge of the desk over to where the printer was installed. And never would have experienced the simple joy of the half-lotus position.

So... the "mistake" created the blessing. Having not made the "mistake" would have prevented me from discovering something that was enjoyable—and in the process made the doing of my task significantly simpler—and being stuck in the original room would actually have caused me quite a bit of inconvenience. Discomfort. And maybe even danger.

Is this a M.S.-esque "blessing metaphor" or what?

Physician...

2012-01-13T22:09:00.000-08:00

It is interesting that recently both I, and Judy of the Peace Be With You blog, have recently been dealing with the idea of "fighting."

I think I've been doing far too much of the wrong kind of fighting. Fighting battles that simply cannot be won; fighting battles that even were I to "win"—and that's dubious and large air quotes around "win"— would do no good for anyone, myself foremost; fighting battles that I can't even explain what or why I'm fighting.

A couple of days ago, I had an unbelievably, indescribably wonderful evening with two indescribably, unbelievably wonderful friends. Scots poet Robert Burns wrote, "O wad some power the giftie gie us/To see oursel's as others see us." And with generosity and love, they held up some very powerful mirrors to my own processes.

Some of the things we talked about, that were among the most important things anyone has said to me ever, were about wrong fighting. The "Why are you wasting your time and energy railing against that?" variety of "wrong fighting."

One of the most incisive comments was "Why are you working so hard at justifying your 'that's wrong for me' decision? It's wrong for you. You know it, you're not going to chance your mind, and you don't need to justify it. Good. Done. Now spend that energy looking for what's right for you." And my friend was very, very right. I had looked down one road of possibilities. At the moment, it looks wrong. And I was fighting very, very hard to justify that 'it's wrong' decision... But, really... why? I don't know. I had my back against the wall, facing down a completely non-existent opponent.

And that was an interesting life lesson... suggesting a deep question: How much time do we spend fighting things that we have created entirely in our own imaginations? Traveling the M.S. highway, we've had our "sensitivity" ratcheted up, our immune systems are strangling themselves on our own nervous systems, every day we wade through "it didn't used to be this way" and "it didn't have to be this way" and "I don't know how long it's going to stay this way." And in the midst of all that, I'm picking a fight with something that exists only in my imagination, and it's so nebulous I can't really correctly use the word "exists."

But I really do spend way, way too much time fighting myself. Even in simple things like "I can't walk that far." Is it that I actually can't? Or just can't deal with being in complete participation with the experience of "walking" the way I "walk" nowadays? Because, sometimes... dammit, It's just no fun. And when it's just no fun, I just don't want to. Am I "playing the M.S. card" on myself?

That's not always a question I want to face answering.

Today at school, some kids were selling some churros as a fundraiser for some people in a foreign country. They were having a hard time selling the last two or three... I tossed a dollar their way, and told them, "That's for someone who wants one but doesn't have a dollar. If somebody comes by and wants one, but they don't have the buck to pay for it, I just paid for it."

One of the girls said, "That's really generous!"

I said, "Generosity is always repaid. But when, and where..." And then I smiled, and said, "That's a mystery."

And then I remembered my conversation with those wonderful friends, who were encouraging me to pursue a path of open-handed joyful generosity, rather than desperate, insistent, close-minded, repetitive and pointlessly defensive justification, and I thought...

"Physician, heal thyself."

My turn now

2012-01-10T21:59:00.000-08:00

A good treatment today. Some points that almost always hurt really bad, didn't hurt so bad. Quite a relief... I asked my doctor once, "These aren't nerve endings, right?" He agrees—and trust me, having been hit accidentally in nerves before, there's a huge difference between a needle connecting with a point and connecting with a nerve. The best we could figure out between the two of us was... well, "pain" is the only "vocabulary" the body has to explain the needle contacting the acupuncture point, so that's how it "explains" the sensation it's feeling. Well, now that I know that, things don't hurt any less when they hurt, but ... well, it's at least a little satisfying to know what's going on.

His prescription for this week:

1. Exercise. Actually, it was more in the spirit of "Dude! Exercise!!!" Doesn't matter how. Doesn't matter what I do, but something has to be done, every day. Kosaka-sensei, my own kyudo teacher's master, says that kyudo is the only exercise you need to do (although he did admit he was taking the occasional walk around the neighborhood), and my doctor said that was fine, but (growl) I have to do it. Every day. Well, I used to enjoy doing it at night outside, no matter what the temperature was, and that's not going to happen right now but I guess now that I've 'fessed up to you, gentle reader, I'll have to do it tonight as soon as I'm done here.

2. Eat more! Will you eat something that you enjoy? Why aren't you indulging yourself more? He prescribed crème brulée and apple tarte tatin, something my brother was always really good at making. 'Course those things are all not just dairy heavy, they're dairy massive. I can just imagine my zero-dairy-prescribing herbalist shaking his head and muttering, "He wants you to take really good-tasting poison, so you can enjoy poisoning yourself..." Well, I'm not going down that road, but I really do need to put some more intention into finding things I enjoy eating. And eat them. My weight is way down, much too low for someone who's six-foot one when he stands up straight. And really, how often does your doctor yell at you for not eating enough things that you enjoy?

The M.S. Highway is, as I've often said, full of comedy that writes itself.

Two interesting bits of reading on the web today; one, provided by Tiny Buddha, lists a number of lessons that the author was taught by her own un-wellness, that anyone on the M.S. Highway will recognize from all-too-personal experience. It's tragi-comic that so many of us have to be taught our lessons by getting hit by some sort of corporeal dysfunction; we apes with oversized brains, our sense is drowned out by our egos, and sometimes the only way we can be forced to listen is by our own mortality screaming at us in pain.

And the always-beautifully-expressive Judy at Peace Be With You writes about fighting and not giving up. For me, against-ness is something that I specifically need to avoid, but just because I'm not in a place of against-ness with M.S. doesn't mean I need to indulge in against-ness with my own spirit. Most of my own struggles with "giving up" and "not giving up" have actually not been involving M.S. They've not been struggles with the M.S. Highway, as one might expect, but with the Highway Of Life. With life-changes that maybe the M.S. has accelerated my confrontation with, or increased my sensitivity to (it does jack up your sensitivity, to everything); or simply removed my ability to hide from.

I was talking to my doctor about it today; he said "It's not an 'acupuncture' problem; I don't know if I can help you." Well, I gotta admit, if a few needles could fix everything, I'd sure take them, no matter where he had to stick them... but we talked at little more, and the situation suddenly clarified.

I told him, "I'm a key without a lock. If I can get into the lock, I can open it, and change the world; but I have no lock to turn. There's not even a keyhole."

He got it. He smiled. He said, "There's a long and very grand Sufi story there, waiting to be written."

It feels more like a Zen koan, right now. And koans can only be solved by completely transcending yourself. By perceiving, and manifesting, a truly transformational transcendence.

Or perhaps,it really is a Sufi story; as Rumi writes, it's simply my turn now.

Attention getters

2012-01-09T20:12:00.000-08:00

For me and my wife, the New Year really starts not with the Tournament of Roses parade (whose famously-televised turn is not at all that far away from where we live), but with the Kotohajime festival, in Los Angeles's Little Tokyo. All sorts of performers share their own special gifts... dancers, musicians, always from many cultures, and always from differing cultures. But the most beautiful moment is the shooting of the First Arrow by Kosaka-sensei, the grand master of kyudo in the LA area.

I miss kyudo. I haven't used the bow in a while, because the bow kinda "pushes back" at you when you draw it, and I'm already way too easy to knock over right now. You know, by doing such things as ... standing up.

But both Kosaka-sensei and my own teacher, Rick-shishou (who is Kosaka-sensei's student), each said that they knew of people in Japan who are practicing kyudo from wheelchairs. This is very interesting, even to a fully ambulatory kyudo student, because one of the ways you know that your draw is being done correctly is that you can feel the force traveling from the bones in your bow-hand to the bones in your opposite foot—which I have felt myself, not as often as I'd like but still I've felt it; and it's quite glorious, and somehow quite spooky at the same time. And not having the infrastructure that proper stance provides has been one of the things that has kept me away from the bow.

But Rick-shishou said that he would look into the "chair form" for me, encouraged me to keep up the tote-renshu (barehanded practice), and invited me to come to class again, walker-bound though I be. What I can do, he'll help me with, and however I can execute the form, I should; and whatever state I'm in, he'll teach me.

This, for me, is big. Very big. A very large, and very clear, message from the Universe: that limitations, even ones I can't escape, limit specific things. But they don't limit me. They limit specific things that I try to do, or used to do, or want to do, but now they limit me so I can't do them. But the things they don't limit... they don't limit.

So... why should I help these limitations to limit more than their own nature enables them to limit?

Japanese culture has an interesting concept of "firsts;" the "first" anything has special importance. And every year, Kotohajime celebrates a different "first." The theme of Kotohajime this year was Hatsu Kaze.

First wind.

And later this month, it's Chinese New Year; the year of the Dragon. This year, it's the year of the Water Dragon; and Water is an Element that is infinitely accommodating, yet also irresistibly powerful. Water easily flows around any obstacle; and yet, it was gently flowing water that patiently yet inexorably cut its way through the desert to create the Grand Canyon. Water is fog; water is mist; water is steam; water is a crushing wave; and yet, no mater how it expresses itself, its substance never changes.

The Universe is definitely trying to get my attention.

Like M.S. wasn't enough... I'd better start listening, eh? Who knows what it'll try next, if I don't get the hint this time...

SNL

2012-01-07T15:52:00.001-08:00

Things are still rocky. Lovely warm weather turned into gently cool (read as "not warm enough"); walking and standing are especially shaky today. It's never encouraging when you're standing at the cutting board, or the stove, and suddenly you realize Oh oh... I think I've been standing up too long... and trying to drive that narrow line between perseverance and whether-you-like-it-or-not collapse.

Just saw a friend of mine's TEDx talk. A stellar presentation; but all through hearing it and thinking about it, I'm oscillating between self-empowerment and unprocessed karma/resentment about how Things Didn't Have To Turn Out This Way; and in trying to process that, I'm oscillating between "well, this was their fault" and "well, that was my fault." And every once and a while, a bounce over to a completely different point: "Well, it's not really about fault, now is it?"

Not like I don't have an interesting enough journey as it is, navigating the nasty bits of the Neurological Highway. It's hard enough just living life, without having to ... live life.

Ah... yeah. Right...

Anyway... I'm trying to reset my sleep cycle back to work-a-day diurnal. Weirdest damn thing that's happened with the M.S. stuff... A few days ago, everything flipped--I'd stay up until 3 or 4AM, finally manage to sack out, then sleep until 11AM or noon. Then fall asleep sitting up in a chair, during the afternoon... then stay up until 3 or 4AM. Then repeat. Got a recommendation for some OTC stuff from my doctor, it seems to be at least sort-of working (more with the "sort-of"... I really gotta find a better word for that). We'll see if I'm able to get up early enough and make it to sing at church on Sunday and, more importantly, to Teach The Youth Of America on Monday.

In the Five Element school of Chinese medicine, we're in the season of Water. But before we're ready to accept the gifts of Water, we need to make the most of the gifts of Metal, the element that enables us (among other things) to let go of what is no longer necessary. And I'm definitely not through with the whole "letting go" thing, yet.

And my M.S. symptoms are really pissing me off. Often, I can work around them, sometimes even with them, but right now... they're just getting in my way. They're really getting in my way.

As Rosanne Rosanadanna of the Golden Age of Saturday Night Live used to say, "If it's not one thing, it's another." Well, that's the M.S. journey, in a nutshell, isn't it?

Commencements

2012-01-04T21:16:00.001-08:00

I went outside this afternoon, to enjoy the finally warm Southern California weather. And I'm enjoying the air, and the sunlight, and the smell of the trees... and I look at the bits of Backyard Project that are undone thanks to not my usual lassitude, but to the ravages of The Disease. A workbench I used to use a lot... but don't any more. Potted plants that I used to care for more assiduously, but don't any more. Sometimes because even walking up to them is difficult, sometimes because standing and dealing with them is difficult, sometimes because both are too difficult; sometimes because standing and dealing with them is (maybe) dangerous or (usually) just plain non-doable.

For all of us, there are Things that were once part of our lives, but are no longer. Things whose time has come and gone. Some of those Things, we left behind because we had no choice—we would have hung with them longer, if we could, but that possibility simply didn't exist (for example, the college we left because we at long last graduated from it, and once you do that, you're outta there). Some Things we left behind because their time had come, and we knew it; and depending on our relationship with them, letting them go was bitter yet sweet, or Not! Soon! Enough!!!

And there are the Things that we would have loved to keep a relationship with. But the Things themselves decided that the time was up. Or, in our case, the whatever-it-was that brought The Disease to us decided that it was time for us to travel a different road; a road without those Things.

Now, what is it exactly, that makes the letting go of some of those Things easy, and some difficult? The Buddhists would call it "attachment," but even if that term explains it correctly, it doesn't really speak to the way those Things are hooked into the depths of our being.

I hated my college for the first two years, I loved it with an amazing love the final two years. I hung around for three years after I graduated from the college (two of those years in the master's program). But eventually, even I had to agree that the time had come for Something New. That it was time to let those Things go, beloved as they had been. And really, many of them, the part and parcel of the Undergraduate Experience, were already gone. They had departed when my diploma was signed, and delivered to me on the day of Commencement. And interesting choice of words, that... not an ending, but a beginning.

And here I am, surrounded by Things whose time—for the moment, at least—has come. And I am facing a barrage of "Commencements." In so many ways... even in the once simple tasks of standing up in the backyard, walking across the back yard. The ways I used to do those little Things... those trivial, quotidian, almost unnoticeable because of their simplicity, Things... for now, at least, they're gone.

Somehow, "commencements" were easier to take when you knew they were coming for years. When you worked your ass off to achieve them. I'm sure there are some who might say that I actually did work my ass off to position myself to travel the M.S. Highway (and I don't mean with regard to the huge amount of weight I've lost) in some sort of mystical, non-immunological/neurological way; that I chose these "commencements" for myself; as Marley's ghost told Scrooge, that I forged this chain link by link and girded it on of my own choosing.

So these are among the gifts of M.S.: Commencements. Delivered daily. Sometimes even hourly.

The past is over. Time to begin the new. The past created precisely what is necessary to deal with the present. We couldn't deal with the present if we hadn't lived through the past.

Which means that the greatest gift that M.S. gives us is the ability to deal with the M.S. Highway.

But oh, the past... the wonderful, wonderful past. Was it really that wonderful? I certainly like to think so...

But as a very wise friend once said, there are many paths to enlightenment; but nostalgia is not one of them.

First prescription of the new year

2012-01-03T17:34:00.000-08:00

My doctor saw, and agreed with, the TEDx talk that encourages M.S.ers (if not everybody) to follow the "hunter-gathererer diet." I pretty much already do, although if I really were to be following it slavishly, I could stand to eat way more kale and seaweed. And organ meats.

He did tell me that right away, I should have more fish oil--cod liver oil, even, if I could deal with the flavor. (Given the flavors of the Chinese herbal brews I've had by the gallon, this'll be easy.)

And eat. I've lost way, way too much weight. He told me to chase down the foods I enjoy, and eat them. And enjoy them. Three underlines under "enjoy."

He even wrote it on a prescription pad.

Not a bad prescription to start the year with, eh? Although I can just imagine the to-do with the insurance company... "Sushi?!? What do you mean, he 'prescribed' this?"

Ending; beginning

2011-12-31T19:49:00.000-08:00

It's the last day of 2011. Seems mandatory, almost, to make a year-closing blog entry.

OK. So where are we?

I still have M.S., and it still seems to be getting worse.

I have no idea what the "income" side of the future holds. That, not the M.S., terrifies me.

Hardly seems like a "closing moment."

And here's this: tomorrow is the only January 1 of the year. The next day is the only January 2. Every day marks the beginning of a year.

So, each and every day marks, year-wise, an end: and a beginning.

So then, each and every day: happy new year!

Why not?

Sensible vs. honest

2011-12-29T20:09:00.000-08:00

Today was a "I just want to lie here" day.

I didn't want to read, I didn't really want to watch anything, I just wanted to lie down, in the bed, under several sets of blankets in a vain attempt to warm my legs, and sleep.

Usually, I've only had these "I need to stay right here, in bed" days when I was acutely ill. Usually, this time of year, by an invasion of what the Chinese medical system would call two of the External Pernicious Influences. Usually, an attack of Wind and Heat.

I've been completely Wind/Heat-attack free this year, for the first time in a long time (might be the new herbal formula). And, since I've got "progressive" rather than "relapse/remit," I can't really call this an "M.S. attack." Especially because it's nothing like what I've read (and been told) "M.S. attacks" are like. I just... want to stay in bed. Under the blankets. And sleep.

'Course that doesn't last all night. Last few nights, I've been very awake between 2 and 4 AM. Twitching. In terror, in fear for how I'm going to make it next year, income-wise. That has been a very interesting confrontation of lack of faith; to lie there shaking, and the "sensible mind" says "The proper road already exists. It always has. You just need to find it." and the "honest mind" says "I know that. But I don't believe it. If I did, I wouldn't be so scared."

The M.S. Journey has brought me into very sharp confrontation with my inner flaws/demons/choices. As the Islamic saying goes, the inner jihad is the great jihad. And I know from kyudo that one of the first things you gotta do is to get out of your own way. And offer yourself. And open your hands.

But I'm still scared. Terrified.

A very interesting gift of M.S.... A disease that's neurologically all about "againstness," as the immune system is chewing pointlessly, and harm-creatingly, on your own nervous system; that is bringing me into direct confrontation of my own self- and ego-imposed againstness. Againstness that I'm fighting so hard to maintain.

Ah, for a funny herbal formula that'd help address that againstness. Can't imagine how it would taste, though... Good? Foul? Both?

Looking into the wind

2011-12-27T16:12:00.001-08:00

I don't often feel "disabled."

Has my life been changed, by this disease? Or as the Science of Mind church used to call them, "Dis- Ease?" Heavens, yes. Scratch that—[string of expletives] yes. Are there things that I just can't do any more? At least at the moment? Repeat string of expletives, twice—yes.

But I don't often feel "disabled." With that specific label.

But I do... today. Right now, I feel disabled.

Walking at all... Getting out of a chair—Everything minor and "normal" is much harder than usual.

I performed at a Christmas Eve service last Saturday night, and nearly fell over every time I tried to get up. And nearly fell out of my drum stool every time I sat on it.

At left, a picture of me, behind the timpani, at Oneonta. Before the Christmas Eve service.

And before a long series of "almost falling over" moments. And moments, during the service, that I avoided falling over and having all sorts of loud equipment joining me on the floor.

Well, I thought as I narrowly avoided disaster during one hymn, That'd sure put a new meaning to the singing of "Silent Night," now wouldn't it?

I don't really want to get out of bed. I'm trying to start a "I can do most of the work this project will require from a comfy chair" web-based project, that when I started working on it, I thought would be fun and fulfilling. Well, there's no reason that it won't be either of those things, but all I want to do is lie in bed under the blanket.

I feel like I can't do anything, any more. Being terrified about my future, having decided that there's just no choice and I have to leave the employment that I'd always told myself (and anyone who asked) that "I never have to look for another job," that (except for the parts that were killing me) I'd always truly loved—and parts of which I still truly love—plus the "squashing" effect Winter always has on me, plus the squashing effect that the current battery of M.S. Malfunctions are having on me...

I'm feeling disabled. And you've read my blog, I know I go dark every once and a while, but I do spend most of my time in the spiritual world, and I always think that the M.S. Highway is a spiritual one. And I still do.

In the book of Matthew, Jesus was walking on the water; he calls to Peter and tells him to walk on the water. Which he does! ... Until he looks into the wind (in some translations, he looks down at the water, but he always looks away from the face of Christ); and he is afraid, and he begins to sink.

I know just how he felt. I have, many a time, been commanded to walk on the water. I truly feel that now, I have just received that very call.

And I'm looking into the wind. And I'm afraid. And I'm beginning to sink.

M.S. is a disease that is full of the most surprising gifts. And as much as it has pissed me off, it hasn't failed me yet, in that regard.

If I'm brave enough to open my hands, and reach out...

I wonder what gift is trying to find its way into my hands, right now?

Lying down

2011-12-23T21:37:00.001-08:00

I am SO tired.

Tomorrow, I have to play timpani/percussion, and sing, at a Christmas Eve service. The chairs I will have to sit in are not going to be comfortable or easy to spend an hour in.

But since I'll be stationed behind the choir... I actually could get away with lying down; nobody would see me, not even the organist. On the floor. It'll be cold, nasty cold, 'cause the floor is stone, but... lying down. That might be nice. Or necessary.

Hope it doesn't come to that.

I've been working at (poking at, sometimes) Possibilities For The Future. It's been interesting going in new directions, going to new places (mentally). But exhausting. And although a lot of the ground I've been traveling has needed traveling, right now I ain't really going anywhere besides the Land Of Learning About Things, rather than the Land Of Accomplishing Things. And I suppose learning things is accomplishing things, even knowing the maxim that "all writing is rewriting" doesn't mean that when you're metaphorically rewriting, and rewriting, and rewriting, and not visibly heading towards the finish line... it's hard.

Especially when you're tired and vacation time is the time that, theoretically at least, you're supposed to spend your energy on recovery.

Sigh.

Well, all I feel like I want to do is lie in bed, and I keep coming to the "I gotta lie down" place both physically and emotionally, so whaddaya think? Maybe tomorrow I'll stay in bed until it's time to put on the tux and head down to perform for Christmas Eve. They're playing a lot of my music, both arrangements and compositions, so it should be at least a little fun. I hope. I should be getting recordings (oops--gotta not forget to take the recorder!) and I'll post them here, if they come out OK.

And I make it through the service OK.

Well, that is one of the gifts of M.S. If it teaches you nothing else... it's how to make it through the hard spots.

And really, looking back at all I've lost, and given up, and the rough road I've walked (and continue to walk) and the physiological failures/miscues/unwelcome surprises...

Making it through one Christmas Eve service?

Yeah. I can do that.

And as I do my best to make the seating comfortable enough—and certainly, if I do have to make use of the "this is my chance to lie down" opportunity... you know, I'm going to smile. Because, as I say very, very often... comedy like that, you can't write.

And smiling at yourself while you're lying on the floor... that is definitely a gift of M.S.

Lying down

2011-12-22T23:24:00.000-08:00

Interesting days, these last few days.

I'm on vacation, thank goodness. So I don't have to have the alarm get me out of bed at 7:00AM for a while. Not that the cat doesn't have enough ideas about when it's appropriate to talk to me and ask for rubbing, but at least I don't have to get up.

And I'm very grateful for that. Because I'm having an awful time simply being out of bed, not to mention getting up and walking around. Today, I had so many wonderful ideas about "I really should work on project X," something that wouldn't take any physical labor, it'd just be typing into a machine or (now here's an idea) actually writing something on a piece of paper with a pencil.

But no. When I was finally able to get up, I made a Japanese tamago-yaki omelette, fried up some mushrooms, grated some daikon and added it to some natto. A lovely Japanese breakfast. Except before I was done, I was afraid I wouldn't be able to keep standing through the whole cooking process. I wasn't able to make the tea. I had to get off my feet, before I hit the floor. And that was getting way too close for comfort.

Several times today, I had to retreat to the bed. Because merely "sitting down" wasn't enough. I tried sitting down. It didn't work. I had to lie down.

I've been doing a great deal of thinking about "Well, I'm leaving my job in a half year or so, what am I going to do instead?"

When those thoughts are interrupted by "Crap... I gotta lie down. NOW. Before I fall down," it does give some poignance to the planning process.

Well, the very good news is... I don't have to answer the question today. Today... I can just lie down.

And y'know, on the M.S. Highway... Even a small kindness like that one, is a kindness. And I'll take it. Gratefully.

And now... (You knew this was coming...)

Please excuse me. I gotta lie down.

Five minutes

2011-12-17T20:17:00.001-08:00

Y'know, I've been doing the "Chinese herbal medicine" thing for... decades. It'd take a while to figure out how many. But decades. Many schools; Eight Principle, Three Treasure, and the unique but wonderful system of my current herbalist.

Herbalism isn't really designed to turn corners fast and hard, except when it's applied to acute and desperate conditions. It's more of a "slow banking turn" approach to changing your state from sickness to health. And I've always found it to be effective, trustworthy, and (aside from occasional "tummy music") side-effect free. Its effects have even amazed Western MDs, who were shocked that something with no side effects could work as well, and as fast (or faster), than their pharmacopoeia.

But with M.S., it's a different task. My current herbalist is trying to clear up all sorts of junk that's karking out my immune system, and try to get it to quit cross-reacting to a dishearteningly long list of things that are all-too-common in today's world. It's going to take a while to get to the "repair" phase. And, alas, we're not there yet.

He's been quite successful in slowing down the "getting worse," but getting better? Not yet.

Although last night, for about five minutes, I was walking around the house not clutching walls. Walking not briskly, but not tentatively... very nearly... normally.

Did it last? Nope. Did I need some help this afternoon, my wife very sweetly and kindly pushing me about in my transport chair. Oh yes. Is it going to happen again? Well, it's possible, but... who knows? Certainly not me.

But those five minutes... ah, those five minutes. They were... wonderful.

And in for we who travel the M.S. highway—even for all of our brothers and sisters in this world who aren't traveling on our neurological highway—wonderful is... wonderful.

And there's nothing wrong with wonderful. Even for five minutes.

Cold cold COLD

2011-12-15T16:57:00.000-08:00

I love my herbalist.

He spent nearly an hour coming up with this month's formula. This month's set includes cordyceps (finally, something with a side-effect: it's a performance enhancer, it's banned by the Olympic committee because it increases oxygen uptake in muscles, among other things) and licorice, something I've gotten in many a formula before, which adds quite an odd flavor to the formula. I gotta tell you, though, it beats the taste of gall bladder and turtle-shell-wax that my old Eight-Principle herbalist used to give me. He diagnosed some autoimmune oddities this month (and they're very odd) and he summed up his experience with M.S. patients this way: "This thing is damned complicated. All you can do is keep peeling the onion, and eventually wear it away."

And he suggested a specific herb to take nightly, because it actually helps your nervous system. (At least, he says it'll help my nervous system, and that's good enough for me.)

He hopes this formula will do something reasonably soon (and it may be doing something already), but he gave me directions on doubling (and tripling) the dose if certain changes don't arise in a week.

And I'm hoping that one of those changes will be in cold-sensitivity. I live in Southern Freaking California, where winters have always been deliciously, unseasonably warm. Now, it's New Haven CT that's unseasonably warm. When I was in college, I left LA at 80 degrees, and landed in New York City where it was 8. Today, New Haven is warmer than LA. And... I have enough trouble walking, even with my walker. The temperature is making it harder.

My.

Legs.

Are.

So.

Insert your favorite expletives, shouted angrily at the heavens

Cold.

The "hot-water test," the old stand-by for diagnosing M.S.? Bring it on.

Squashed

2011-12-12T19:18:00.001-08:00

Winter is definitely not my season. Never has been. I do love Christmas music, and making Christmas music, but winter... I do not love.

Now, if I were able to take winter completely off... to do less, to spend more time in bed, maybe more time in warm baths (having a bathtub that I could fit into would, of course, help), to do the sort of thing that nature intended us to do in the winter—that being, of course, less—I might like it more.

But "less" doesn't seem to be an option. Right now, at least. So, I take what "less" I can. I didn't go to the store on the way home, as I usually like to do, because the cold (and today the wet, quite rare here in L.A., even in the winter) is making walking, even in a heated house, more than usually difficult. Make that very difficult.

Winter... squashes me. Makes it very difficult to start new projects. That's more of a ... season-of-spring kinda thing.

But I can't wait that long to start some new projects. Again, "less" doesn't seem to be an option. Well, at least a little less, it's gonna have to be, but it's gonna be as little "less" as I can make it.

Well, we do what we can. When we can. As we're able. Again, the human condition.

And the M.S. Highway.

Music; voices; the Question

2011-12-10T20:12:00.000-08:00

A very clear indication that crossing my employment Rubicon was the right decision...

I can just sit down, any time I want to, and start writing music. And music... just flows. Easily. And beautifully. I've been living in Creative Drought Hell, for at least three years—maybe more—only extracting a few drops here and there, when it used to come in a Ten-Commandments-Parting-The-Red-Sea-grade flood.

But now, if I want to create music, I just sit and write. And write. And write.

'Course, with the decision to change your income source comes the closer-every-day deadline to find a new source. And, sad to say, with the M.S. has come very, very clear indications of roads that can no longer be taken. But, I must say, some of those roads, I've spent way too much time already, and M.S. or not, I'm done with them, so being unable to re-travel them because of The Disease... well, that is a gift of M.S., isn't it?

We M.S.ers, we confront so much sorrow in the face of the long list of "what you can't do any more." But each time that this very firm (and, we think, uncaring in its firmness) voice tells us "You can't go that way anymore!" there is also a sweet and gentle voice—one that is hard to hear, given the shouting of the first voice—that is softly telling us "No... go this way, instead."

So, that is my new mission. Yes, I'm going to be doing some homework, calling the M.S. Society with some logistical questions; talking to my creative/supportive team about some ideas we're kicking around; and whenever possible, definitely writing some music. But my real mission is to listen. Now that I've stopped the internal noise of struggling in a fight I never should have been having in the first place, I can listen for the voice of the Universe; listening for the answer to the question that all of us M.S.ers whisper quietly, and often shout angrily, all the time:

"OK... What now?"

There is an answer, for each of us, for all of us; and for me. And to hear it, all I have to do...

is listen.

Big difference

2011-12-09T19:17:00.000-08:00

Wednesday, I crossed the Rubicon; I told my employer that this would be my last year with them. I'll always be a member of the community, we both want that, very much; but after this year's over, I can't work there any more.

It was very hard to come to—and even more so, to act on—that decision. But now that it's done... I haven't felt this good in a very, very long time.

I still can't walk without a walker. Even with the walker, every once and a while I come way too close to falling down. I've got a lot of let's-not-talk-about-them below-the-waist dysfunctions. Oh, I can go on and on with the "what's not working" list...

And of course, there's gonna come a time, I'm gonna have to come up with a way to replace that income, and exactly how that's gonna happen has not yet revealed itself to me...

But I feel better. M.S. and all, it's a very, very, VERY big difference. To feel ... better. Who cares if the physical isn't better... I feel better.

And, y'know...

I'll take that.

Three moments

2011-12-08T21:38:00.001-08:00

Three interesting moments, today.

The first: I was talking with a psychologist, and was asked, "When you got The Diagnosis [capitalization mine]... did you ever ask 'Why me? Why did this have to happen to me?' "

"Actually," I said... "No."

"NO?!?" she asked, quite surprised.

No. Not on the day of The Diagnosis, and actually, never since. Have I been pissed off at it? Yeah... Grieved because of it? Not enough, but yeah... but asked, "Why?" Honestly, I really don't think so. The question's just never come up. I told her, I'm an organist—I've never asked myself, why do I play the organ? Why would I? I just do.

"Well, I guess it's just not in your psychology," she said; and, I guess, that was that. I suppose it didn't mean as much as she thought it might. Well, M.S. is full of surprises, but I hadn't thought they would extend to other people.

Thing two: I was telling one of my students what I frequently tell seniors who are applying to college. There's nothing you can do to make them want you. You can make them not want you; but you can't make them want you. And if they reject you, just remember... if they don't want you, you don't want them. I have never in my life ever been proven wrong on that. And I've often found out after the fact just what a blessing it was to not have been sucked up into whatever it was, because the situation I avoided turned out worse than I ever imagined. So don't worry: If they don't want you, you don't want them.

Hours later, I realized... no wonder I've been suffering for so long. I forgot my own advice. It was clear that they didn't want me... why was I trying so hard to buck the tide? They didn't want me... and clearly, given how much I suffered, I actually didn't really want them, either. I was right, and didn't even know it; and also, didn't listen to my own words of comfort. Physician, heal thyself, as the saying goes. This made me feel even better about my decision to cross the Rubicon yesterday.

And the third thing: I'm at a gas station on the way home after the day's adventures, filling up the truck, and as I'm standing at the gas pump, my bladder starts yelling at me, "I gotta go! I gotta go! I gotta go! Now now now now NOW!!!"

Great, I think. Ambulation triggers micturition—or at least, it claims to. But doesn't really. Or does it? Bladder clearly doesn't know, but I'd sure like to. Hell of a system. What will it think of next?

And then, I think... A day of realization, of moments during which important changes of consciousness "click" into place, and we end the day... with a pee joke. Well, I don't ask "why," but sometimes I want to ask, "A pee joke. Really—that's the best you can do? Create the starry heavens and all life, and ... you go for the pee joke."

That's funny. Chalk up another one in the "humor you can't write" column. But, after all that I've gone through in the last couple of days, I end by laughing at myself... Even on the M.S. Highway, that's a good way to end the day.

Againstness; openness; and gifts

2011-12-07T20:37:00.000-08:00

A major removal of "againstness" from my life, happened today. "Againstness" being what we on the M.S. Highway are mired in, neuro/immunologically speaking (definitely on those levels, among many others), and reducing againstness is devoutly to be sought, whether you're sharing the road with us or not.

This is my herbalist's first tool: stop throwing things at the immune system that make it go "wacko." Before you can start fixing things, you've got to stop messing them up.

So, I took a big step today. I told my employer that this chapter, my full-time employment in this particular role, is at an end. Not on-the-spot quitting, but that this is going to be my last year in this role, and when this school year comes to an end, so does this chapter in our journey together. I want to remain a part of the community—and I think the community very much wants me to remain a part of it—but "the enterprise," the faceless, nameless, non-human entity that keeps the organization qua organization alive, doesn't want me; and truthfully, I don't think it ever has. So, it's better for it, and certainly for me, to remove this dissonance between its hopes and mine, its expectations and mine, its desires and mine. Time for this chapter to end; if for no other reason... because only this way, can another one begin.

I feel better than I have in months. Years, even. Do I do good there? Yes, I do. And always have. But for the humans, for the young people... not for "the enterprise."

I'm not saying "goodbye forever." But I'm changing our relationship. And, I think that both I and "the enterprise" are happier.

So, what's next? Actually... I think that's the fun part. Never... never... has the Great Machine of the Universe failed me. Something big has happened... and that very "bigness" had precisely the right power, direction, and timing, to create a new chapter in the Great Adventure. And, that particular chapter was exactly what I needed. And, I think, exactly what the Great Machine needed for me to do, for it.

I've actually seen some evidence of my encounter with M.S. being of this nature. But, even after The Diagnosis, I was still hanging on to My Same Old Life. When that Same Old Life was trying to leave me. Much of it had, but I was doing my best to not let all of it go. Because... I was afraid.

I've been living a "Gethsemane moment" for years. Christ's plea in the garden, "Take this cup away from me." But even Christ eventually realized that it was time to stop fighting; finally, he was willing to say, "Not my will, but Thy will be done."

And it only took him one evening. Me, I've been making that prayer for years... not about M.S., but about not being willing to face the choice that I knew I needed to face, and that I haven't been able to face until today.

And face it, I did. With calmness; and honesty; and sincerity; and open-heartedness. And kindness. And even forgiveness. It was a beautiful hour, an hour of telling the truth... with love.

And facing this thing that I've been so afraid to face, I faced... with precisely the things that living with M.S. has strengthened. I never would have been able to face the truth of this moment, and the truth of having to face this moment, and to face both of those with open hands and open heart, had I not been "afflicted" with M.S. And spent the time I have on the Neurological Highway, and being changed by not by the neurological malfunctions, but by the journey.

They were truly... gifts of M.S.

Amazing thing, this "disease," isn't it?

2011-12-06T21:18:00.000-08:00

Tomorrow, I will be taking the first step of a Big Change. A Very big, Big Change. And, only the first step. But it's a Big Change. One that has been overdue for far too long.

More details tomorrow. I'm sharing what I am, right now, to bolster my courage. Because I have to do it. I've known that I was going to have to do it for a long time, and I haven't been willing to cop to the truth that my heart, and the entire Universe for that matter, has been trying to tell me.

My kyudo teacher once told the class, "Nobody will give you anything if your hands are clenched. Before you can receive, you have to open your hands."

I need to open my hands.

One of the gifts of M.S. is sensitivity—given that I was already too sensitive for my own good before The Disease hit, you can believe I'm really sensitive now. Which means that when I take the leap... the fear before the moment of the leap itself is going to hurt even more.

But, as Eustace said in The Voyage of the Dawn Treader, of the way Aslan pulled off his dragon's skin, "It hurts like billy-oh when it's coming off, but it feels so good once it's gone."

The change is upon you—that's the first thing we have to deal with, as M.S.ers. The change has already happened.

So, what do I do now?

Oh, I dunno... how about...

Live.

Easy to say, ain't it. OK, then... with you, my friends, as witnesses:

It's time to do it.

So... here we go, then.

Warmth, in the middle of devastating winter

2011-12-04T16:40:00.001-08:00

I commemorated the Storm That Trashed Pasadena another way, this morning: I composed a new anthem for Oneonta Congregational Church, an arrangement of Gustav Holst's carol, In the Bleak Midwinter.

You can guess from the title why I was immediately drawn to this text, given that the church (as so many still are) is without power, which means no organ, no light, and no heat. And yet, even if we can't warm the body, we can warm hearts, and warm the hearts of one another.

Some of my dear readers may not follow the Christian path; but this music is for you too. Not because I want to convert you, but no matter your spirit path, the last phrase speaks of what you can give, no matter what other roads your life takes you down.

And it's something that all of us M.S.ers can give, because for all the malfunctions that beset us, this is the one thing that no disease can ever touch; because it is beyond the limitations of the world.

Here is a recording of the performance. Enjoy!

Perspective

2011-12-02T21:53:00.000-08:00

For days... weeks... I have been going back and forth on "where I'm supposed to go," career/employment wise. Many doors have been closed by the M.S.-related physical changes; some have been closed simply by age (even though there's a "come on, you're only 51, what's this 'age' crap?" factor, but it's there anyway); some have been closed by choice, brought on by experience and, as I occasionally like to think of it, wisdom provided by suffering and not wanting to suffer again. Some roads I've traveled, and have been glad to have traveled them, and am even more enthusiastic about not going down them again. You know what I'm talking about... we all have invisible "combat medals" that we won by surviving the battles that made us who we are today, and that we So. Don't. Need. to win more of.

Earlier this week, Pasadena was devastated by higher-than-gale-force winds. People went without power (myself included), streets were littered with broken branches, sometimes entire trees were felled by the wind and left strewn about the roads. Or, sadly, crushed entire houses. One thing was very, very clear; the planet is bigger than you are. Compared to the planet, and the forces in play on the planetary level, you ain't nothing. Planet doesn't even know you're there. And when you see just how small you really are, it's hard to get your own knickers in a twist about "You don't understand, this is really important" when whatever it is has nothing to do with life, or health, or home, or simple survival.

Really... I just saw a tree that's older than both of us uprooted and hurled onto the ground, dozens of yards from where it has been growing for decades, maybe centuries. There are people not all that far from us who no longer have homes or food. And you're telling me that making sure that this form is filled out properly, or justifying this argument you're making about some mental model of yours being superior to someone else's, is "important?" Really? Really?

And the evening after Pasadena was hammered by the wind, I performed at a concert celebrating the lives of AIDS/HIV victims, in support of the Pasadena Pride Center. They spoke of loss, and courage; and what really connected with me was what they said about the Pride Center. They spoke of young people who wondered whether they were "normal," whether it was "normal" to feel the way they felt—who were unclear about even what it was that they were feeling. And they spoke of how important it was to have a place for people to talk, and to be reassured that they weren't "broken," but that their orientation, their feelings, their questions, didn't have anything to do with their worth as people; whatever state they were in, for them, it's normal. And they're normal. And they're worthwhile, they're beautiful, just because they're people. And what's really important... is to be true to yourself. To be true about yourself, to yourself. Because you are who you are.

Don't we M.S.ers need to be true to ourselves about ourselves? That for us, where we are right here, right now, is now "normal?" That whether all the equipment works the way it used to or not, we're normal, and our malfunctioning equipment has no bearing on our worth as people; and that we have things to offer, we have things that we were born to offer, regardless of the state of our nervous systems. That we're normal, and we're beautiful, just because we're people. I'm beautiful, and worthwhile, because I am me. And the way my nervous system works has nothing to do with that... and it never will.

Lemme tell you... watching the wind rip the city apart, with a power that absolutely dwarfed anything that I've seen, that I am, and that I'll ever be; and then hearing people talk about life and death struggles with diseases, and with the life or death struggle simply to accept oneself, because it's definitely no life if you can't live a life that loves yourself as you are, as you were born to be... well, that puts wrestling with "how am I going to deal with this 'job' thing" in a different light. Do I need to deal with it? And with how M.S. affects my career choices, my employment future? Of course. Not to deal with those questions is the height of foolishness. But... are they that "big"? On the scale of the forces the planet itself wields? Really? Really?

Have my questions been made easier to answer? Also no... but they have been made a lot smaller. And maybe that alone will make them easier to answer... We'll see.

A win, in my book

2011-11-28T17:26:00.000-08:00

So I'm at school; I drive my motorized wheelchair to the elevator and push the button. Nothing happens. I ask a student to go upstairs and push the button there. Nothing happens there, too.

And I have a class waiting to be let in, outside the locked second-floor classroom door. It's cold, and I don't want the kids to suffer in the cold.

So I somehow drag myself up the stairs and wall-walk to the door, and let them in.

The comedy hasn't even started. I go for my cell phone, to call the facilities director to get him to see if he knows anything about/can fix the elevator. The call won't go through.

I have to wall-walk my way to the door. Then totter out to the wall of the second-floor balcony that extends around the building, and place my call from there. Fortunately, it does go through. He says he'll come and look at the elevator. Repeat the process, backwards, stumbling across the balcony back to the door, wall-walk back to my chair.

One of the students looks a little concerned. I tell her, "It's comedy that you just can't write. I mean, if I wrote this in a sit-com, people would say, 'That would never happen!'" She smiles. I also say, "Y'know, when a two-year-old totters across the room and careens into the wall, everybody laughs. A fifty-year-old does it, it's not so funny." She smiles. The concern of the kids assuaged, I wait for facilities guy to look into the elevator.

It was an easy fix, he went into the machine room, cycled the power or flipped a switch or something, and everything is working fine. He gives me the good news, and heads out... of course, leaving me sans wheelchair, stuck on the second floor. I let the kids out a couple of minutes early so I can deal with the struggle down the stairs not during the rush between classes, struggle down the stairs, and pop back into my wheelchair.

And that was only the first hour of the day, of the first day of the week.

"Uninteresting" is a view that the M.S. Highway never provides. Actually, I considered it a victory—I kept the kids from worrying.

I was massively inconvenienced. They were concerned. I laughed at the inconvenience. They laughed with me. As far as I'm concerned, that's a "win" in my book.

Smiles, tightropes

2011-11-26T19:06:00.000-08:00

Today, I have come across some interesting commentaries on "approaches;" on "paths."

Judy, M.S.-haikuist extraordinaire, today writes about "smiling it away." She's right, the best attitude in the world isn't going to make the M.S. give up and go away. It's not a cure. And won't ever be.

But, if you're smiling, how much power does the M.S. have over you? Yeah, I can't do all sorts of things, but if I have quality of life, and a smile, how much does it matter? Does it affect me--hell yes. Does it change the way I go about my daily, weekly, monthly, yearly, entire life business? Hell yes. But if I'm smiling, if I'm enjoying the journey anyway... I'm enjoying the journey. Wasn't the one I had anticipated, probably isn't the one I wanted, but if I'm enjoying it anyway... isn't that all we get, no matter what road we're obliged to take?

And author and professor Michael Cisco has begun a new daily exploration of Kafka's Zurau Aphorisms. Today, Kafka speaks about "the path" not being a tightrope suspended high above the ground, but a rope suspended just above the ground. I'll let the author(s) discuss these ideas, but especially in the context of the M.S. world, Kafka's idea of "a path you can trip over" has a very interesting meaning.

Personally, I find Zen more comforting, but the M.S. Highway is always an... interesting... journey. And so is Kafka's idea.

Pleasant (!!!) surprises

2011-11-25T19:34:00.000-08:00

One of the odder gifts of M.S. Definitely falls into the "humor you can't write" category.

I was driving somewhere the other day, when I realized...

... I love these hand controls. No—I prefer these hand controls.

Yeah, I can't sip at water or tea while I'm driving—given the unpredictable, idiosyncratic, well-nigh-impossible-to-decipher behavior of my bladder, that's definitely a gift, right there— yeah, activating (briefly) the windsheild wiper is a little tricky, yeah I can't pat my wife affectionately while I'm driving, because both hands are 100% occupied with operating the "mission-critical" operations of the car, 100% of the time.

But, I gotta tell you... it's easier. More comfortable. And, dare I say, it might even be fun.

Life with M.S. is full of surprises. And those surprises are sometimes surprisingly enjoyable.

Now, that's funny.

Chains; gifts; thankfulness

2011-11-24T20:37:00.000-08:00

Still pondering the life-changing change that needs to be made in my life.

Awright, a little more detail will make this work more easily. It's work. I'm wondering whether it's time for me to work somewhere else.

That would definitely be a life-changing change. Huge change. Massive, reverberating change.

And there would be things I definitely wouldn't miss. Ever.

But there also would be things I would very much miss. The bright smiles. The laughter. The amazing "aHA!" light that goes off in the eyes, on the face, in the very soul, of someone who has just experienced that beautiful diamond thunderbolt of changed awareness.

And dammit... that's my quality of life we're talking about here. And I ain't ready to give that up.

There are things that need to be different. Hugely different. A massive, reverberating difference. But the place that has to start, is me. Because I can't change my environment. That's been part of the problem—I've been trying to change it. And I can't. It doesn't want me to change it. Or anybody to change it, as far as I can tell.

In an earlier post, I talked about the meaning of the tarot card "The Devil." And how the "prisoners" are chained by choice. By their own choice. As Marley's ghost said of his chain in The Christmas Carol, "I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it."

M.S. is all about "against-ness." Immune system that's going nuts and chewing on itself. Nervous system trying to work around the damage the immune system has caused. The sufferer trying to figure out what signals his nervous system is sending him are true, which are false, which to trust and which to disregard—which choices themselves can be incorrect, because the "target" is always moving.

And here, I'm suffering from self-imposed against-ness.

I didn't go for conventional Western M.S. therapies because the first thing their manufacturers tell you is that they're not going to contribute to your quality of life—sadly, they'll probably rob you of it, about the only thing they can actually guarantee.

And damn it, quality of life is all I have.

So why have I been working so hard to rob myself of it?

I've got a ways to go on this. There's still a lot of processing yet to do.

But I gotta tell you, I don't know if I'd have come to realizing this but for the experience of walking the Neurological Highway. The M.S. road.

And I know that the next turns this road is going to take are going to involve sharing some of the gifts of M.S.

Lots of things to be thankful for, this Thanksgiving, it would seem. And things to get out of the way of the world trying to give you things to be thankful for.

An interesting road.

Farewell to pumpkin pie

2011-11-23T19:43:00.000-08:00

Thanksgiving break started today. Tomorrow, my wife and I have Thanksgiving dinner with my parents.

Being on the "no dairy of any kind—ever—and that's at least three underlines under the 'no' of 'no dairy' " diet, the Thanksgiving holiday is completely different now. Your basic, traditional, Thanksgiving meal is Dairy City.

Butter on the mashed potatoes. Milk in the mashed potatoes. Sour cream in the mashed potatoes. Baked potatoes? Make that butter, sour cream, and cheese.

Butter on all the vegetables. And, used to cook the vegetables.

Cream in the gravy. Which, cream and all, was finished using the French "monter au buerre" technique—in other words, add butter. Of course, the mirepoix using which the gravy was started was sauteed in butter, too.

Condensed milk in the pumpkin pie. Whipped cream on top of the pumpkin pie.

And, like so much else in my life since I started the M.S. Highway... Gone. All gone.

But, to be honest with you... playing the organ, that I miss more than eating pumpkin pie.

We're going to a vegan Japanese restaurant tomorrow. Nice people, nice food, no dairy, somebody else does the dishes.

All things considered... especially given what I've lost, in my journey down the Neurological Highway... At worst, that's three out of four to the good. And really, given what dairy does to me... that's four out of four.

Saying farewell to pumpkin pie... not so bad, really, all things considered.

Practice

2011-11-21T19:30:00.000-08:00

Well, I wish I had something poetic and spiritual today, but it's symptoms.

I'm cold. Really cold. Even given that Southern California thinks that 60 is cold, when it gets into the 40's and 50's, it's well past "cold enough" for me, thank you very much.

Walking, still... vaguely... works. Sill very rare falling down, fortunately. But there are times when I am gearing up to stand up, or just sitting, when my legs have the same control that a ventriloquist dummy's have. Which is to say... nothing. Lots of flopping.

The security guy at the school where I work, a former Marine, has a spare key to my car, because he offered to drive it from the parking lot to the curb--so I wouldn't have to make the walk to the lot. Alas, today, I guess something came up, and he couldn't move the car for me and the car was still in the lot when I wanted to leave the school, so today, I had to make that walk myself.

Rough timing, from office door to car door, including time required to put walker/transport chair into the back of the truck: about 12 minutes. When crossing at the crosswalk, waiting for the signal, and stepping off the curb when the light turns green... I can't make it all the way across before the signal turns red.

So yes, person who asked me the other day whether I "needed" the electric wheelchair to get around campus... yes. Yes I do. Watch me make that walk from my office to cross the street to get to the handicap spot in the parking lot, and see if you really, really, want to ask that question again.

I was so exhausted from the day, and from that "walk," that I didn't go to the banks like I've been planning on dooing for more than a week. I've got checks burning a hole in my pocket, and I didn't have the strength to deposit them. That's expensive fatigue.

Was hoping to do some music work when I got home today. I was way too tired to do that. Maybe a little tomorrow... we'll see.

Still doing thinking about the major life change I'm contemplating. What I'm hearing from the universe is "Yes, do it," but the actual doing of it is gonna be scary.

Well, there's a gift of M.S. for you. It does present you with s--t you gotta deal with, doesn't it? And you practice dealing with it, because what else are you going to do?

Practice doesn't make perfect. Only perfect practice makes perfect.

And for all the practice the M.S. road has been giving me, in the "dealing with s--t you gotta deal with," somehow... it isn't getting any easier.

Looking at what all this "practice" has bought me... still, some things that I find hard are still hard, and things that I find easy have always been easy. The struggle against falling down, sometimes losing the struggle against falling down, bladder control issues... those are easy.

Now, facing, reducing, accepting, my own ego... that's hard.

I wonder what the Buddha would have done, had he had M.S.?

Probably about the same as what he did anyway, actually. Now, there's a lesson for us all. And especially, for me.

Taking a step

2011-11-19T20:11:00.000-08:00

Judy, M.S.-haikuist-extraordinaire, has some very thought provoking things to say about "Yearning to emerge." Her work always speaks to me, but today, it's especially powerful.

I know how she feels. Just look at the photos on this site: Organist, percussionist, archer.

Not any more. (For the foreseeable future, at least.)

And yet, I recall a card I got in a recent Tarot reading: The Devil. What's especially pertinent to me right now are the two people in chains.

In chains... really? Look more closely: the chains are only looped around their necks. They're not really shackled; they could remove their chains easily. If they wanted to, that is.

So I'm currently facing a major "chain-removal" decision. A major, major change, expressing itself most visibly in my place of employment. It won't be implemented immediately (I'm under contract, which I don't feel like escaping from, and I'm sure neither do they) but there are decisions to be made. And plans.

Which, I think, I'd better start acting on. Even in a small way--but I need to take steps in completely, completely, new directions.

Ah, locomotion metaphors. "Taking steps." Considering that I feel like I'm on the edge of not being able to walk at all, "take a step" has a very special meaning.

And now that I think of it... especially considering how hard it is for me to walk, "taking a step" has a very special meaning. It takes more commitment than those who walk easily might think.

So, then, my immediate course is very clear. Time to put the blog down for the moment... and take a step.

This time... NOT funny

2011-11-16T15:56:00.000-08:00

Just had to get this off my chest.

I have a powered wheelchair to help me get around the school where I work. To give you an idea of the basic size of the campus, five round trips from my office to the administration building is a mile. Which, I guess, makes a single round trip something along the lines of, uh... let's call it around 350 yards. Three and a half football fields.

The powered wheelchair is the only thing that makes it possible to get around the school. I got enough problems with a trick bladder as it is, if I had to struggle with my walker while struggling with the trick bladder, well, as we used to say in the I.T. world, there would be "undesirable and unpredictable results."

Today, somebody actually asked me if I needed the powered wheelchair.

I chose one of the least aggressive things to say. "Well, it takes me ten minutes to get across the street," I said as I pointed at the parking lot. "It would take me about a half hour to get from one end of campus to the other. [Class periods are 43 minutes long.] And after using all of my energy simply to get around campus, what energy would I have left to do what's really important: help the kids?"

I figured that "tempting fate by walking with the trick bladder, when it's on the edge of cutting loose" wasn't the road to take.

But... come on. Have you ever seen anyone in a wheelchair and even thought to ask, "Do you really need that?"

I gotta tell you... I hit the ground at 2:00AM and I find the humor in it. A co-worker asks me if I "really need" the powered wheelchair... and that... I'm sorry, but that's not funny.

But there's a lesson in it. A gift of M.S. Another one I'm not exactly sure how to open... but there is a lesson in this moment. We'll see if I'm willing to learn it.

Questions

2011-11-14T20:38:00.000-08:00

Man.

Things aren't getting easier. Why that should surprise me, even a little... I don't know.

An interesting day, at work. A seminar for all us teachers. Some interesting things were said. Some things that were not said were also interesting. And were quite revealing, in their own way.

Of the many interesting things that were said (and unsaid) and that were revealed by the presentation (and were also revealed by some questions the presenter was unable to handle), the most interesting were questions that only I heard, because they were raised by my own "inner voice."

People have told me that I would be good at being an "inspirational speaker." Well, I do hope that in my role as a teacher, I'm inspirational, on many levels, so that's a match. But I looked at this presenter, and I asked, "Do I want to be like him?" And the answer "NO!" came back loud and clear--but then again, there were things about his presentation that were also definitely not what I would have wanted to do whether I was touring to do them or not, so that question was clouded by the presenter not doing precisely what I would want to do.

I was at a meeting at school. Surrounded by my colleagues. I like and respect them. It's an honor to be counted amongst their number. I absolutely love working with the students--they're my best therapy. And I asked the voice whether I wanted to keep being here.

I got two answers:

"Yes. You belong here."

"No. You don't belong here."

Well, THAT was helpful. Especially because the "No" was louder than the "Yes." Well, that raises another question: If not this, then what?

"Now what?" is a question that gets raised by the life with M.S., isn't it? Thrown in your face, even... isn't it? And it's going to get thrown at me until I answer it.

Well, I can't answer it right now. This, I can answer: Why am I bringing this up on an M.S. blog? Which is oh so very often "covering" the Neurological Battle, the challenges that neurological malfunction puts before us, the losses we must face, the choices we must make.

Well, those last two are definitely where I'm at. Where the M.S. Highway has brought me, sooner than I wanted to deal with them. It's just like life, that way, ain't it?

In the TV series Babylon 5, the aliens called "The Shadows" always asked the question, "What do you want?" That's the question that I feel is being put before me. My beloved magic teacher Eugene Burger says, "How will you know that you've gotten what you want... if you don't know what it is that you want?"

And, truthfully, I can only sort of answer that.

Great. That's another duel I'm having with the M.S. Highway, over and over, ever and ever: Confronting the state of "sort of."

So then... here I am. As much as I'm getting tired of confronting "sort of," I'm definitely not into confronting "Now what?" Or "What do you want?"

There's a gift of M.S. Questions you can't walk away from. Just like the human condition.... except, pretending that you can't answer them, that's the first thing that's removed from our lives.

Interesting "disease," isn't it?

Sensations; amazing gifts, indeed

2011-11-12T11:30:00.001-08:00

Interesting sensations, over the past few days. Physical, meteorological, energetic, even metaphysical sensations.

A sensation of temperature: My legs are cold. Cold. Cold cold cold cold cold. I don't know whether it's the environment's temperature, or the endothermic temperature I'm perceiving them as having, that's causing this, but using my legs at all is more difficult than ever. Standing up was always a bit of a "trick," but now it's a challenge. And not one that I'm always sure I'm going to overcome."Not falling" is becoming a moving target.

A sensation of ... Lord, I don't know what: A few days ago, I was sitting at dinner with my wife and my parents. Now, I'm sure that this was due to nothing that anybody said--especially because it happened again, at unrelated times, over the next few days. I'm not really sure how to describe this well, but the best words I can give it are...

Something's wrong. Something just went wrong. Bad wrong.

I took a day off work, stayed at home. Functioned physically reasonably enough at home. But I felt like... something had gone wrong. Energetically, maybe... very deeply, very subtly, but wrong.

Now, even with the people that I traffic with, in the healthcare world, who are used to reading subtle signs, I don't know how I'm going to explain that. We'll see.

And a sensation of... the seeds of transformation: I stepped out of the house one day, and I breathed the air, and I got a real significant "juju" buzz, simply from the world. It was the onrushing element of Water (five-element Water, not the stuff that falls from the sky so rarely here in L.A.). But Water is about, among other things, rebuilding. Getting ready for new growth... for the Big Changes that new growth brings. It's about very profound internal transformation... Neil Gumenick's site says it way better than I can.

But this kind of internal rebuilding, internal reconstruction, internal transformation, is just what I think I am being called upon to face. And that's going to have its expression externally, and that change could very well be huge.

The M.S. Highway does present the most amazing challenges, in the most amazing dude-there's-no-way-you're-dodging-this-one ways.

Amazing gifts, indeed.

Warm/cold/better/worse

2011-11-09T20:19:00.000-08:00

Not sure whether to feel confident or worried.

My leg strength, which for a long time has been fading, seems to be up. I wouldn't say I have stamina, exactly, but I definitely have muscle tone. I had been having to exercise specifically to create it, but now, simply living and what little walking I do seems to be maintaining it nicely.

But control over my legs... that's not good. Not good at all. It's worse.

I'd like to blame it on the weather, the season of the year (which historically has been hard on me, for a number of reasons), on anything but The Disease. And it might be just that.

I won't really know until the spring, or a reversion to Sunny Southern California's not infrequent "hot winter" weather.

So... nothing to do but... stay warm, I guess. And even that is problematic. Even covered with blankets, my legs are cold.

But then again... what about The Disease is predictable? Or reasonable?

Really. What was I thinking?

Triumph

2011-11-07T21:07:00.001-08:00

A small and quiet triumph today.

A very successful, and very enjoyable, day of teaching. And then, I went to the store for some snacks. And then to Office Despot for some computer equipment. And then to the credit union, to deposit some checks. And then, to the vet to pick up some cat food. And then, to the cleaners in the nearby grocery store.

This is the kind of "spend the day clearing my to-do list" day that I used to have. Every day. Without thinking; without even noticing. And I haven't had a day that productive, so simply and easily productive, in months. Easily, for over a year, if not longer.

And today... it just happened. Without any effort.

What a wonderful gift that was. For what I've always regarded as "the simple" simply to be possible.

And yes, the cold weather was making walking (with the walker) increasingly difficult, and the final journey along the full width of the very amply-sized grocery store was hard, and felt like it took a very long time. But I made it. And made it home.

And even managed to get the groceries out of the car. And put them all away. All by myself.

And even managed to take my wife out to dinner. And did all the driving, and never asked to be pushed in the chair, did all the walking myself.

A triumph.

About time.

Hell and heaven

2011-11-05T20:52:00.000-07:00

Judy, who doesn't blog but "haikus" about her M.S. journey, had something quite wonderful to say in today's installment:

M.S. sucks but I do not.

A worthwhile reminder.

And so, we return to our hero as he adventures along the M.S. highway...

Being an "outlier" in my experience of M.S.—actually, given that all of our experiences are entirely our own, even though we have some of them in common, we're all outliers, in one way or another, but I digress—I shouldn't be so surprised that I'm taking the cold weather so poorly. Now, I know, I spent seven years in Connecticut, and I know people who have lived in New Hampshire, so Southern California's mid-50's don't hold a candle (or an ice cube) to the parts of the country that are really cold. Don't care. It's cold, and I'm cold. My legs are extremely cold-sensitive, and They. Do. Not. Enjoy. This. Time of year. At. All.

The bedroom is delightfully warm—but my legs don't think so. I lie under the blankets and pile extra blankets on top of just my legs... and they don't even notice it. The oddest thing is, I put a heating pad on them, and that doesn't work, I don't feel it—but something living, like a cat or my wife, I feel.

Still trying to work through the "grieving" that's needed doing; that needs doing. That wants to be done, even if I (to be honest) don't want to deal with it. Some of it is directly M.S. related, things that are no longer on my "doable" list thanks to my neurological malfunctions; some of it is my relationship to the world, something that has actually been in the works even since my pre-M.S. days, but having M.S. seems to have pushed it to the front burner; it has, I think, been on some burner for a while, but it's on the front burner now, and it needs to be dealt with. Because as much as it hurts, and it hurts, it's gonna hurt more if I pretend that I can get away without dealing with it.

Which is a lesson—a gift—of M.S., anyway. Some things need to be dealt with, when you need to deal with them... even if you wish you could delay confronting them (and yourself).

My doctor is very quick to challenge me when I personalize M.S. "M.S. doesn't exist," he says. "There's nothing there that isn't you." I'm doing better about that; it's a work in progress. But if there were to be personalization right now, it would be a voice saying quietly, "You have to deal with this."

"You know you have to deal with this."

"I know you don't want to. But you have to. You have to."

"Now."

The inescapable voice of truth. Hell of a gift of M.S. Or a heaven of a gift... depending on how you choose to look at it.

Thank you, M.S. (?)

2011-11-02T17:37:00.000-07:00

It's enough of a battle within ourselves, finding value in what we can do, versus feeling worthless because of what we can't do.

I feel like I'm fighting that battle with other people, who (at least I think) find my contributions deficient, because they don't involve schlepping stuff.

Now, there's a very long list of things I can do at my workplace. That nobody else can do. But the things that other people can do—for example, schlepping stuff—somehow, those seem to be more highly valued.

We're not dipping into the ADA-protected danger zone at the moment (at least, I don't think so). It's more of a "personal" perception of value. That somehow, as such things always do, gets converted to perception of "professional" value.

So now, I've got two problems: One, dealing with institutional perception of my professional value. There may be ways around this, and that's easy to work on. Copious communication, for one—better they should get tired of me talking about all the cool things I'm doing than to keep quiet about them and then get pissed that nobody knows about the things I didn't tell them.

And two, the much, much harder problem: Forgiving them for having a different understanding than I have.

Forgiving people is harder than dealing with being disabled. I loved playing the organ, I started doing it in—oh my, has it really been that long? 1973. I can't, any more. I'm still trying to come to true peace with that.

But forgiving other people for not seeing that what I can still do has as much inherent value as what I can no longer do—especially when what I can do, is something that I can do and I'm the only one who can do it that well, and what I can't do, other people can also do at a perfectly good level of quality—that's hard.

You can't change someone else's level of consciousness. It's just not possible. (Heck, it's hard enough to change your own.) Why I insist upon frustrating myself in the attempt to do that, and then becoming angry at them for not evolving at my whim, I don't know.

Not many things, by comparison, make having M.S. seem easy. But somehow... this does.

Well, I don't have the choice as to whether or not to have M.S., and I don't have the choice as to whether or not to evolve. Actually, I do, but I don't recommend that path, either. Choose that road, and eventually, the choice to the contrary will be made for you.

Which, now that I mention it... may be precisely what's happening right now.

Thank you, M.S.

Really? Wow.

Metal

2011-10-30T13:55:00.000-07:00

In the Five-Element system, Fall is the season of Metal: the element that enables us to connect with quality, but also the power to let go; the element that grants the power to grieve.

And, as the Taoists told us millennia ago, ending creates beginning. Creates it. There can be no beginning until the end ... ends.

Had a "I'm gonna do this, dammit" moment today... I did some laundry, then (here's the "dammit" part) took it, somehow, outside and hung it on the line.

Did some very spectacular Harold Lloyd-esque bounces off the line that I wasn't hanging things from, but nothing hit the ground (including, fortunately, me) and everything is currently hanging happily on the line to dry.

As I was in the backyard, I saw... the workbench that I haven't used since The Diagnosis. The saw that I had bought about a decade ago to build cabinetry with, and that I had built some lovely bookshelves with, but which I haven't felt safe to use, haven't felt able to manhandle lumber onto it or even to the backyard to work with it, since The Diagnosis. The backstop I had used as an safety behind-the-target arrow catcher, that I haven't used since I've been afraid to use the bow, fearing it would push me over backwards; or that I'd simply fall over trying to plant my feet or stand up, even before I drew the bow; or that I'd simply fall over walking to the shooting line.

And let's be truthful: The Diagnosis didn't stop me from using these things, my motor skills had been askew for two years prior to The Diagnosis; but at this temporal distance, it's as good a hook as any, time-wise, upon which to hang The Big Change.

These things have pretty much left my life, but I haven't gotten rid of them, because I'm hoping that one day, Things Will Maybe Be Better and I'll be able to use them again.

Now, that's certainly probabilistically true, but... not much sign of it happening anytime soon.

Or ever. At least not right now.

A scholar of philosophy said that the final creature to fly out of Pandora's box, Hope, is not the cheery little fairy everyone likes to think that it is. He said, it's the worst of the demons. The demon that lets you pretend that a magical fix will happen and Everything Will Be Better and you don't have to do anything to make that happen.

I'm having to deal with the truth that "ending creates beginning" in so many areas of my life, right now. There are some things that I really, really want to be over, so I can move on; and yet, I'm afraid to let them end. Really, really afraid... even though I know, I know, that keeping them will not only prevent the "new beginning" that I hope for, the keeping of these things will make matters worse, and worse, and worse.

Something we M.S.ers are tasked to deal with all the time is the need to let go of The Way It Used To Be. Because it's in our face. Every day. Things aren't The Way They Used To Be, and they never will be again. Because even if The Disease were suddenly removed from us, we've been changed; and we aren't what we Used To Be. And never will be.

And yet, we--I--hold desperately, desperately, on to the dream, the memory, of The Way It Used To Be. And it was never ours to begin with, because it was never real. It was just a dream. Our waking dream; but a dream.

Time to open my hands and receive the gift of Metal. To perceive and experience quality; "to receive the pure chi of the heavens," the specific job of one of the Metal officials.

And to grieve. To face the truth.

And grieve.

Needles and Tarot

2011-10-25T21:24:00.000-07:00

A very poetic treatment today, at the acupuncturist's; points included the Inner and Outer Frontier Gates, the Gate of Hope, the Great Hammer, and the Spirit Path.

That last one, the spirit path... that's something that I know that I am being called to walk. It's going to be hard... I can tell already. But it is very, very, necessary.

In Vegas, I got a tarot reading from a very, very perceptive person. Tarot is an interesting thing; it's not about "telling the future" or "telling you what to do" or "messages from the spirit world" or any nonsense like that. It's a metaphor, from which you take whatever meaning you see in it. A good reader will show you things to look at, but you're the one who makes the real connections.

And the real zinger cards were The Devil and The Hanged Man. Lots of interesting stuff in both cards, but here are the kickers: Held by the Devil in chains are a man and a woman—but look at how the chains are merely draped around their necks. They could leave, if they wanted to; they're captive because that's their choice.

The Hanged Man is not about "someone being tortured," it's about seeing things in new ways. Yogis do inversions to (among many other reasons) help them look at the world differently; if you're looking at things the wrong way, change the way you look at them.

When the acupuncturist and the tarot cards are saying exactly the same things—time for a change: a big change—the Universe is trying to get your attention. (Another meaning of The Devil—there's a message trying to get through to you and you ain't listening.) Heck, even Tiny Buddha has been talking about listening.

The message is clear...

Time to listen.

The mountaintop

2011-10-23T13:47:00.001-07:00

I'm back in sunny (well, partially cloudy, today) Southern California. Back from my conference in Vegas.

It's hard to come down from the mountaintop.

The mountaintop calls to us; and we climb it, though the path there may be one that we have to make ourselves.

And once there... we are called to return; to return, changed, changed by the journey, changed by the struggle, changed by the call the mountaintop made to us.

Coming down is sad, and beautiful; but sad. Although, as a wise friend once said, "There are many paths to enlightenment, but 'nostalgia' isn't one of them."

And while on the mountaintop, I was absolutely hammered with ideas. Possibilities. Especially ways in which I can give back to our M.S. community, in very new, and very interesting ways. More about those if... If? Shall I commit to them by saying "when"? Yes, I will!

I'll say more about them when they come to pass.

In the meantime, I need to deal with the present. Some parts of that dealing are not at all fun; some parts of dealing with it are made more difficult by scars I acquired in my pre-M.S. past. Forgot about those, didn't we?

We spend so much time dealing with the scars the having-of-M.S. leaves on us that we forget that life itself leaves plenty of those, no matter what organic dis-functions you may or may not be dealing with.

Although having M.S., it does inure us to injuries that we might otherwise have taken. How many times have we heard this conversation in our heads, when someone expresses their displeasure at somthing:

"Bad? You think that is 'bad'? I can't do some things that have been central to my life and happiness since I was a teenager. I fall down with no warning. I need a wall or a wheelchair to do what I laughingly call 'walking'. My bladder has a mind of its own, and a capricious—sometimes malicious—sense of humor, at that. And I don't know from one day to the next whether things are going to improve, or disintegrate, or neither. And you call this 'bad'?"

Man, that was vehement. Guess I need to spend more time on that mountaintop, don't I?

Or to embrace the gifts that it gave me while I was there.

Ah, embracing gifts. We on the M.S. road are asked to learn that particular lesson many ways, aren't we?

Magic and metaphor

2011-10-21T08:05:00.000-07:00

Currently blogging at you from a magician's conference in Las Vegas.

They're a very interesting, and unbelievably diverse, group. Baptist ministers. Congregationalist ministers (who were once also working with a hospice). Corporate trainers. Truck drivers. University professors. University presidents. Internationally renowned entertainers; entertainers that are nationally known and are certain to become internationally renowned. One of our number just finished opening for the Republican convention that was just held here in Vegas; he used to be a gondolier at the Venetian. And a university professor—he used to teach at UNLV.

I'm one of their presenters; I have been presenting for years, and they always ask me to give the presentation that opens the conference. No pressure! One of the people I shared the stage with yesterday was with Magicians Without Borders, an amazing organization; the gentleman who presented has himself, according to the United Nations, performed for at least a half million refugees. One of his current projects: teaching magic to children in Mumbai, so they can have a different income source than the sex trade. Amazing, what magicians can do.

No pressure!

But as diverse as we all are, we are all the same. Everyone here has stood on the very wide, very well-paved path of "here's how magic is done"... and they stepped off the path, and walked into the wilderness. Because they sought their path. The path that is theirs, and theirs alone. The path that is calling to them... the path that is waiting for them. And in walking that path, and becoming wholly transformed by that journey into the performer they were born to become, they seek to use their art to bring that same shamanic transformation to others; the amazing magical experience, if only for a moment, of the beauty, the wonder, the... magic, of simply being alive.

The conference is called "Magic and Meaning." Certainly, for someone on the M.S. journey, hobbling through the wilderness as best he can searching for the path that has (to his surprise, amazement, and often grief) chosen him, calling him to shamanic transformation from the life that he knew to the life that it wants him to find... it really should be called "Magic and Metaphor."

And the amazing thing is... all of us are alone in the wilderness, searching for the path that is ours and ours alone. And yet, in that search, we are together; we are never alone, because we're all searching for the same thing. The same top of the mountain—it's just the road to get there that's unique to each of us.

Life imitates art imitates life, doesn't it?

New paths

2011-10-16T19:11:00.000-07:00

Did something new this week: I did a magic trick at my high school's talent show. The kids did the "heavy lifting" of the show; they called in the faculty to fill time while the judges were settling on the prize winners.

The effect I did was, really, about having M.S., but I never used those words; the closest I got was calling it "this disease," and that only once. I did it from my wheelchair, the powered wheelchair the kids are used to seeing me use to trundle around campus. The kids themselves told me that it was OK to do that... and, given the real subject of the performance, it was quite fitting.

But the trick had a happy ending; it was about transformation, and kindness, and love.

It went well, and the audience enjoyed it.

But my wife said that as I performed it, it looked more like "me" than me-doing-magic has in the past. "Like you weren't wearing someone else's clothes," was how she put it.

Is this the start of something new? Well, who knows? But I'm definitely going to follow this path—especially since as a metaphorical path, at least I won't have to worry about falling down.

Comedy, again

2011-10-10T16:12:00.000-07:00

More unintended humor. I fell down again today. The second time this week. This time, I was sitting down... I just slid off the chair.

Once I finished the "falling down" process (which fortunately I did quite safely, it's nice to have thick padding under your carpeting), three thoughts came immediately to mind:

1. "Well, I hit the ground again."

2. "I guess I'll need to blog about this, won't I?"

3. Laughter.

I think I want to live in option #3.

Especially funny since I was looking for a piece of equipment that I was going to use to do a magic trick about having M.S.

And I hit the ground while looking for it.

Now, you gotta admit... that's comedy.

Still grieving

2011-10-09T13:20:00.000-07:00

At church today, the organist delivered a superlative postlude. I fell in love with it upon the first three earth-shaking chords. It was precisely my kind of music. I loved it. It was exactly the sort of thing that I would have demanded a copy of, so I could learn it and perform it myself.

And then as soon as that thought hit me... another thought really hit me.

Yeah, that's exactly the sort of piece you used to be able to play. But you can't, now. The organist who would have played that piece... he's gone.

Gone.

Yeah yeah yeah, I know, I may yet regain control of my legs, one never knows with this Neurological Nightmare, stranger things have happened, yadda yadda yadda. But right now, the truth is... that organist, the organist that I used to be, is gone.

And I'm not sure I'm quite finished with grieving his passage. No tears today, but the truth of that passing, really hit me.

My life is full of new things to do. I'm learning new magic tricks. I'm preparing entirely new lectures for all of my students. I'm actually writing new music. The "able-to-create me," who has been in hiding for so many months, seems to have emerged again.

But that organist, the organist that I've always been... is gone.

And his passing... I'm still grieving.

Small packages

2011-10-08T12:51:00.000-07:00

At my home, we have bottled water delivered (not just because I like its flavor better than what comes out of the tap, but having a few extra bottles around gives us in-case-of-earthquake supplies). We moved from five-gallon bottles to the three-gallon size, because the five-gallon bottle was too heavy for either of us to lift (they didn't used to be too heavy for me, but you know what's behind that part of the story). And my poor wife, for several months, has been the one stuck with loading the new bottle onto the dispenser.

Except today.

I loaded the new bottle into the dispenser. Myself. All by myself. For the first time in many, many months. And, I must say... I was amazed at how easy it was, and how well I did it.

While I was getting the bottle from where we keep them on the back porch, I was thinking about how long it had been since I had been practicing kyudo in the back yard, and then I saw that ... one of the chairs... has a back just tall enough to brace me as I draw the bow. I've been doing nothing but bare-hand practice for way too long; I've been afraid to use the bow because it kinda pushes back at you, and I've been fearing that it'd make me fall over backwards onto a very hard concrete surface. But... just maybe... this might work. I'll try it later this weekend--I may not have enough "oomph" to set up a full-on working target, but at least I can draw the bow.

Accommodations, we discover those all the time. Improvements? How often do those happen? Even small ones?

You take what you can get, when you're traveling the Neurological Highway. And sometimes...

You get presents.

And it's true what your mother always told you: the best things do come in small packages, don't they?

Shoot again

2011-10-07T20:20:00.000-07:00

The Joseph Campbell "Facebook fan page" had this quote this morning, from A Joseph Campbell Companion:

"Where you stumble, there lies your treasure. The very cave you are afraid to enter turns out to be the source of what you are looking for. The damned thing in the cave that was so dreaded has become the center."

Well, he was certainly thinking about us M.S.ers, wasn't he? 'Course, for us, the floor gave way and we fell into the cave rather than walking into it. Especially the way many of us "walk." And stumble. And M.S. does seem to have become "the center," usually more often than we'd like it to be.

But it is our treasure.

Learning how to see that truth is harder than dealing with bladder malfunctions, or medications, or the mobility, or a-bility, that is ours no longer.

But it is our treasure. And that is the great "inner jihad"—to own that truth.

Sometimes, I feel like I really understand that. Sometimes, I'm not even close.

But as my archery teacher says, whether the arrow you shot was good or bad... "Shoot again."

So that's what I'm going to do, for the rest of tonight. And, maybe even tomorrow. And after that... we'll see. It's easy to say that I will, somehow it turns out to be hard to do. But we'll see.

Shoot again.

Grieving

2011-10-04T20:08:00.001-07:00

I spent some time outside this afternoon, just enjoying the air. Gently moving air, I find particularly wonderful; and particularly so, this time of year.

Autumn is the season of Metal. The "Metal vibe" is especially strong in New England and in the high Sierras--I'm sure it is elsewhere too, but that's where I've felt it most strongly. I've even felt it in the middle of the Nevada desert. Los Angeles doesn't really have the same energizing "wow" that those other areas offer, but this year, I've felt a lovely softness in the air; it has had the spirit of Metal, but very gentle, almost ... tender, on the soft breeze.

Metal is the element that grants the power to grieve.

I happened to catch some travel show on TV this afternoon. The host was in Paris, and he took us to the church of Saint Sulpice, and we heard that incredible organ that they have. The organist was really digging into the console (mechanical action, five manual organ, all five manuals coupled together, you have to dig in), and he was playing a piece that I had learned, and played, when I was at Yale.

And I started crying. Really crying. The first time I've really cried since The Diagnosis. The first time since I really cried over what I have lost, because of M.S. disability.

I remember the organs at Yale--especially the one that has the same kind of action, and is in the same kind of stone building, as the one I just saw on TV. I remember the feel of the keyboard, the "snap" as you press down the keys and open the valves that let air into the pipes, the crispness of the air within the church, the almost-tangible "feel" of the organ's sound filling the building, and its delicious reverberation.

I remembered playing for the funeral of Maya Hanway, a dear, sweet girl who killed herself during our senior year. I played a Bach prelude and fugue in e minor, something with some crunchy harmonies, because I felt like we were all struggling with both what she had done and her loss and we needed to come to speak the truth of that struggle. And yet, the piece ended in triumph, with a beautiful E major chord.

And I heard that piece in my head, as I had played it, in that room, on that organ on that day, and I knew...

I had to say goodbye to the organ. Yeah my hands still work fine and on the right instrument I can still do functional things without using my feet, but... the organ, as I have known it for my entire life, as an instrument I can just walk up to and suddenly work miracles with... to that, I need to say goodbye.

If my legs start working again will I go back to playing it? Well, hell yeah... probably... but I've been hiding from this moment, clinging to "now, we really don't know if the leg-control issues are permanent, blah blah blah blah deny deny deny deny..." ever since my legs started going south.

But it—whatever "it" is, in my relationship to the organ—is gone. And so is everything that I had associated with it--especially, the ability to instantly connect my heart to the manifestation of spiritual transformation through music. I could put my hands and feet on it, and let my heart sing through it. For me, the organ was not about "performing" or "playing the instrument," it was about transformation, it was about catalyzing emotional and even spiritual transformation, through the sound of that wonderful, wonderful instrument.

And I need to say goodbye to it. I think I'm all "cried out" for the moment, but I share this with you to help me make this goodbye real.

The trees lose their leaves so that the new ones can grow—there'd be no room for new life if the old, useless ones hung on and took up all the space on the branches. Life creates death, but death creates life. And that new life cannot full arise and come into its own... without that death.

So my task now is to really and truly, fully and completely, say goodbye to my old life with the organ. What new creation will grow on the branches, once the old leaves have fallen?

That's for Spring to worry about. Right now, it's the time to express, and to live fully within the truth of, the power of Metal.

That Question

2011-10-02T20:29:00.000-07:00

Oh, I had such plans for today.

I intended to hit the store, come home, write music, and make dinner (with enough left-overs for lunch tomorrow).

Got everything done, surprisingly enough; especially surprisingly, given that I pretty much ran out of "standing up" ability just as I was finishing the dishes. Unfortunately, getting "everything" done doesn't include the "write music" part, which was the thing I had hoped to do the most. Sacked out for a few hours this afternoon, which I guess I must have badly needed to do. Which I suppose is reasonable enough, given that I'm feeling out of musical creativity again.

This has always been the hardest-to-take part of the M.S. experience. Ever-increasing decrepitude of the body is easier to accept; I've been greeting that since I turned 20. Not that I've been fading rapidly or anything like that! But one experiences "I used to be able to do that in such-and-such a way, and I can't any more" throughout one's entire life. But until the M.S. hit, I've never been robbed of creative energy. "Out of ideas," that's normal, that's par for the course. But unable to have ideas? Being robbed of the power even to have ideas? That's a gift of the M.S.

I suppose the real lesson here is un-attachment; un-attachment to "the way things were." Certainly, I have created some interesting and creative things since the M.S., and enjoyed taking new roads. But the old roads... I wasn't ready to give them up. I'm not sure that I'm being called to give them up entirely and expect that they'll never return... isn't that just a different kind of attachment? Attaching to the loss, rather than giving up the possession?

'Cause "getting rid of the M.S.", that ain't going to happen—not that the M.S. can't change, or anything like that, but I can't through some sort of "doing" make it disappear. But changing my consciousness? That's another matter.

And being called to change one's consciousness—the human condition, too. And as I've often said, M.S. is nothing but the human condition, writ so large that we can no longer pretend that it ain't happening to us.

And so, where does that leave us? The same place that we were the day we came home from The Diagnosis, or from a marriage, or a birth, or a graduation, or a death, or any major life change... The place we were when we first heard That Question...

Now what?

The line

2011-10-01T19:53:00.000-07:00

I can still stand. I can stand at the sink to do dishes, at the counter and stove to cook. Although I walk very unsteadily, I can. I can walk from bed to bathroom, from house to car, from car to office at school (where my powered wheelchair awaits me), and from office to home. From car to doctor's office.

For a while...

But there's a line, somewhere. If I've been standing too long, walking too much... suddenly, everything plunges onto another line, a line of failure. When I've been standing too long—however long that may be, I'm sure it changes from day to day, and I have no idea how much time "too long" actually takes—suddenly, my "standing" is ready to fail. I can feel my legs simply wanting to give out from under me, and I feel like heading for a chair or the bed immediately is the only sensible option—because the next place I'm going is the floor.

When I remember, I do deep knee bends. Twenty five is a safe number, thirty is the target—just crouch and rise. Very simple (to most people). But there's a line there, too, and if I cross it, I may not be able to walk very well the next day, much less the rest of the evening. Can I tell that it actually has built up muscle tissue in my legs? Oh yes, it has been wonderful in the doing of that. But although it is increasing my strength (when I remember to do it, at least) and my strength once built does indeed stay with me, "the line" doesn't seem to move.

More dedication to leg exercises is definitely called for. I hope that in talking to you folks about it, I may have a bit more stick-to-it-ive-ness in continuing the exercises.

But when I do the exercises and my muscle tissue is rebuilt but it doesn't feel like it makes "the line" move, I am not exactly "encouraged." Certainly I perceived no improvement in walking steadiness, even when I could tell the muscles were coming back.

I wish there were something as glibly easy as Yoda's "Do, or do not. There is no 'try'" to fall back on. "Well, if you do it, you get some good out of it, even though it doesn't make any difference in the things that effect you the most" just doesn't rank high in the "powerful motivational sayings" list.

"Do it and at least something worthwhile happens, don't do it and nothing worthwhile happens." Right. It's easier to convince yourself to practice playing scales on whatever instrument(s) you're supposed to be learning. Those suck too, as far as "fun" goes, but at least you can tell when they've helped you.

"It's better than nothing."

Oh, that's the trick. I feel so ready just to leap up and take on the world!

Ah, if I could only do it without falling over. Pretty much the best I can muster is struggling up to stumble to the bathroom.

But, I've got to admit, being able to do that is definitely "better than nothing." Take what you can get, right?

Trust

2011-09-30T22:05:00.000-07:00

Awright, I guess I gotta go where the rest of us MS bloggers eventually go... the land of symptoms.

There's no easy way to say this. You've heard the genteel turn of phrase, regarding having "urgency"?

Well, I don't have that. I have panic. Duplicity. Avoidance. Desperation. And courting containment failure.

Walking is bad enough, given that I sort of can't trust or believe my legs. I can barely trust or believe my bladder. And, since for whatever reason I've been running more properly hydrated than I have for a long time, I spend a lot of time second-guessing my bladder.

Oh well. At least the plumbing still basically works. The same way a bucket works... keep it upright, and the floor stays dry. Except for me, it's "keep seated," because standing and walking courts disaster.

At least I haven't had to bail out of my classroom for a mid-class-session emergency bathroom dash. I did have to do that a few times last year... I told the class, "I have to excuse myself briefly. I'll be back as soon as I can. I'm going to trust you guys to keep it together until I return. Because I promise you, if any ONE of you makes me regret trusting you... next time, they're coming with me."

Lots of laughs. And upon my return... absolutely nothing untoward had happened; all was well. (Whew!)

I can trust a room full of 14-year-olds better than I can trust my own bladder.

All things considered, that does have it's advantages. And it's funny. And neurological nonsense being what it is... funny, I'll take.

Oh, what we learn...

2011-09-26T19:42:00.000-07:00

A very heavily loaded couple of days. Successful, but heavily loaded.

Sunday, for the first time in months (maybe even a year's worth of months) I did a Home Repair Project: replaced a light switch. You wouldn't think it'd be that tough, because I guess it was... I sacked out for at least a couple of hours, immediately afterwards. Then I did the dishes... and the standing up for as long as the dishes took, pretty much ate all of my ability to stand for the rest of the day. And night.

Today, four classes, a meeting, shopping at two stores that are so close together, they share walls—the walking around which took an unbelievably long time, the "just plain walking"—and a bunch of after-hours computer diddling. And at the end of the day, not even enough energy to have dinner, much less make it.

Should I be pleased that I was able to do "so much" today, after being unable to do nearly anything all summer? Yeah, probably...

If I wasn't so tired.

Damn, just living takes a lot of energy. Much less walking, like what it takes to go through evan a small store... the amount of energy, and time, that just walking takes, is just plain huge.

I used to be able to walk at race-walking speed. Now it takes me ten full minutes just to walk from my office, across one two-lane street, and get to my car.

Does it bother me, this not being able to walk the way I used to? I dunno... but I'm constantly surprised, if not dismayed, at how "not walking" has changed my life. And how much the simple act of walking means in day-to-day, hour-to-hour living.

The life with M.S. is full of surprises. We learn the most amazing things, don't we?

Micro-improvements; Metal

2011-09-24T14:31:00.001-07:00

Things continue to change. Some muscles that I had pretty much given up on, seem to be coming back to life. Slowly, slowly... but something's happening. Something I'd rather have happen, that is.

Music is yet again within reach. I just shipped a piece off to Australia—my first Southern Hemisphere premiere is now in the works! And as soon as I finish this, I'm going to make another cup of tea and do some arrangements for a friend in Fullerton.

And I'm actually doing this, too. The M.S. Blogging thing. I'll admit, I was kinda shamed into it by Seth Godin, who was also quoted by a magician friend of mine in his own blog...

But I got it done. And I'm getting laundry done. I'm hoping to do dishes and make dinner, too, before the weekend is up. (A more adventurous dinner than "wrap some apple slices in ham and call it a meal" cooking.)

Will I be able to do those things? Dunno whether my legs'll hold up to all that, but... my spirit will, I think.

A nice change. Perhaps it's the magic of autumn, a time of year that always bestows a special energetic gift on me; the gift of the season of Metal. I miss the brilliance of the Metal in the New England autums, Los Angeles is notoriously Metal-deficient...

But as I've often said... in this business, you take what you can get.

Better IS better (even a little)

2011-09-21T19:46:00.001-07:00

I saw my wacky herbalist yesterday; he had a student there, who he was training in his diagnosis/treatment technique. I had the time of my life! I didn't always (or often) understand exactly what he was doing, or why he did it, but I could follow what he was saying, and it was very interesting!

Could I explain it to you? Or anyone? Hell, no! But dang, it was fun to listen to him!

I am truly blessed to have the caregivers that I do. Each of them (the MD/acupuncturist/neurologist, the OMD/herbalist) has at least thirty years of experience with M.S. patients. And they'll often say that "such and such happens with a lot of M.S. patients" or "such and such is common" or things like that—but when it comes to treatment, the treatment that I get is entirely, totally, customized for me and me only, for the condition I'm in on the day I'm being treated. I get nothing that's an "all my M.S. patients get this" treatment. "The cloud" of M.S. patients doesn't get treated. I get treated.

And the herbalist was telling his student, "This often happens with M.S" or "You have to check for this with M.S.," but when it came time to make the prescription, it was individually crafted for me. Not for the cloud.

And I got some encouragement, too. "Such and such happens once a week," I told him, "And I need it to happen more frequently. When is it going to improve?"

He said, "Well, it used to be once a week. Now it's once every five days. That is an improvement." But he did agree, he understood how that might not really be enough, and that he—we—were going to work towards making it better.

How many times do we M.S.ers hear about something, anything, getting "better"—even a little bit?

We do take what we can get in the M.S. biz. Every once and a while, we actually do get something. Even a little improvement is an improvement, whether you want to spin it with enthusiasm or not. There's no denying that "better" is "better," even if it isn't much.

And "better," even if it isn't much—I'll take.

The Correct Path

2011-09-19T20:54:00.001-07:00

Some meditations on "path choosing."

An interesting post on Tiny Wisdom today, about times that "taking the easy road" may not always be the right choice.

I flashed through a lot of instant reactions when I read this article.

First: "Dude, you don't know @#$# about 'taking the hard road,' if 'hard' for you is the decision whether to wear sweat pants or dress up for work when you're working at home. Try 'if I don't stop standing up to do the dishes right this minute, I may not be able to walk from the kitchen to the closest chair before I fall down and can't get up.' "

Next: "Well, for those who believe in things like past-life karma and choosing your parents and the path this life is going to take you before you're born, absolutely everything I'm going through right now is my choice, and it definitely wasn't the easy road."

But finally, when I worked my way through all the "easy roads" in thinking about this (those easy roads being glib reactions that came easily and felt satisfying but truthfully, took me no closer to enlightenment, and "the easiness of an easy road being the only reward" was certainly exemplified by that particular path), I realized... that every moment presents a choice of roads. Is the way I'm spending this moment the best way to spend it? The M.S. life is fraught with path choices, and the choices have much more intensely felt, and harder to deny, consequences than the pre-M.S. life.

And here's another path choice. I'm involved with This Place (details omitted because they're unimportant to the story) where I thought that I had Certain Talents to contribute. Except the person who's in charge of receiving these gifts and coordinating them With The Program isn't always interested in them. That has been really galling me, especially because in my pre-M.S. days—and, more importantly, in Other Places manned by Other People, these very Certain Talents were enthusiastically embraced. Constantly. I was about to say "I had been hoping that..." but the truth is more like "I had assumed that" Things Would Be The Same, now and always.

And they're not.

(Well, that's the life with M.S. right there, isn't it? We assumed that Things Would Be Always Be The Same. And they're not. They're very, very different, in ways we'd never imagined they'd be.)

Anyway, back to the story... I realized today that what's really going on is something very much like this: I've put all my love, my energy, my perception of my self and my worth as a person, into cooking a steak. And I put the steak down in front of someone. And they turn their head away—they want nothing to do with it. It's not that they don't like it, they pass no value judgement on it at all—it's that they don't want it.

Because the creature I presented it to was... a chicken.

Now, whose fault is this refusal of my artistry, my love, my soul? The chicken's? Chickens don't eat steak. It's not that they don't love eating, they do love eating. Certain things... but not steak.

And the real question is... why do I keep putting the steak in front of the chicken? And then getting bummed out that the chicken doesn't want it? And waiting for the chicken to see the light and realize that I'm a wonderful chef and eat the damned steak? It's a chicken.

A long and convoluted metaphor about "choosing the wrong path, and then wigging out that the path isn't taking you where you want to go." Robert Heinlein said it quite succinctly: Never try to teach a pig to sing. It wastes your time and annoys the pig.

And that's M.S. It took away the food critic, and put in front of you... a chicken. A finicky chicken. The meals you always loved serving... just don't interest the chicken.

The M.S. highway provides endless onramps to wrong paths. Nostalgia for dreams that aren't going to be realized the way you dreamed them. Depression at things you used to be able to do and now can't. Not knowing whether [fill in the blank] will ever happen.

But even the M.S. highway does not contain a sign that says "go nowhere." Signs that read "don't go this way" wouldn't exist if signs that read "do go this way" didn't. There's no need for "don't go this way" signs if "go this way" roads didn't exist.

Choosing the correct path. Even more important on the M.S. highway, given the ever-varying number of "danger: severe damage" pathways.

Cheez, it isn't like dealing with malfunctioning bladders isn't enough trouble already. It's hard enough to choose roads that have enough rest stops; I suppose that's also metaphoric in its own way... Again, humor like this, you just can't write, can you?

"Broken" becoming "better"

2011-09-17T20:29:00.000-07:00

Today, the hand brakes on my walker/transport chair ("translator" is, I think, the official term) broke. Specifically, the brake handles broke clean off; the wire cable that connects the brake handles to the brakes themselves simply snapped. Both of them. At the same time.

Which meant that the walker, even though it still worked to support "walking," was very odd to use. In some circumstances, actually unsafe. And therefore, unusable, at least as a walker (which is how I use it most of the time).

On the advice of my neighbor, I took it to a local bike shop that I've driven by many times but never really noticed, until today. A bike shop was a good idea, I thought, since the braking system was basically bicycle-brake technology.

It wasn't a "good" idea, it was a "helluva" idea. Not only was it one of the nicest "neighborhood shops" I've ever been in, and not only had they seen (and repaired) these things many times before, but they didn't just fix it, they made it better than it was on the day I bought it. The brakes have never been so good as they are now, and using the walker is just wonderful.

The brakes breaking actually started a chain of events that ended up causing the walker to work better than it ever had before. The best thing that ever happened to it was that very "malfunction."

I wonder if this is a metaphor for the M.S. experience itself. That my ever-so-comfy life being "broken" by the onset of M.S. is actually what will cause it to become better than it ever was before.

Actually... in some ways, that's actually happened already.

Not enough ways... yet.

At least, that's what I hope.

Kinda think it's on me at this point, to make the necessary repairs to my life, so that my life becomes better than it was before the malfunction.

An interesting thing, this M.S., isn't it?

A long strange trip

2011-09-16T11:28:00.000-07:00

My wife and I had a wonderful dinner the other day, with some highly creative and very dear friends; one of them told us about her wonderful experience at Burning Man this year, and it was clear that it was an amazing, life-changing, liberating and catalyzing-of-total-transformation experience.

And all I could think of while she was talking was... I first thought that I wanted that—not Burning Man, but the removal of chains, the catalysis of total creative transformation, an experience that both breaks bonds and heterodynes with one's own creative energies to create something new, something ... wonderful.

But then, it gradually became clear, what I was really thinking was that ... I was pissed. I was resentful, not of her (heavens no), I resented what I thought "had happened to me." I used to have experiences like that. Certainly, I at least used to be able to have experiences like that. But... not any more. All I could think was... that has all been taken away from me. Even the ability to have those has been taken from me, because I no longer have the creativity, the power, the love of life to be catalyzed by these experiences.

Days later, I still wonder... what's really behind that? Lots of things in my life have departed, opportunities and situations that facilitated all sorts of creativity, that have and had nothing to do with The Disease. Certainly, all sorts of things have changed because of The Disease. But what is the fault of The Disease, what's the fault of That's Just The Way Life Turned Out, and what part of it is entirely ego that really, really needs to transcend both its circumstances and itself?

Awright, I know it's ego. It'd be fun to blame it on somebody else, like The Disease, but that'd hardly assist in the "transcendental" department.

But I'll tell you what The Disease is definitely doing. What it is definitely taking away from me... distractions. Places to hide. Yeah, we can talk about neurological problems, inability to control my legs well enough to play the organ, the drums, to walk, to stand, fatigue upon fatigue upon fatigue... but what it's really doing is steering me down the spiritual road, the road towards transcending the ego and the self, that heretofore I only thought I was traveling.

Like I've always said, M.S. is precisely and only the human condition, writ so large that we have no option but to pay attention to the truth of that human condition, in all it's many not-always-pleasant-to-behold details.

And as a fellow M.S.er said, paraphrasing the Grateful Dead, "What a long strange trip it is."

Conflagration

2011-09-10T20:18:00.001-07:00

Conflagration of discomfiture.

Walking... bad. Standing up... difficult. A bunch of other systems, details of which you really don't want, lackluster at best. A lot of this is the M.S.

Thinking, creativity... missing. This bit is an acupuncture condition (entry/exit block) which is compounding the M.S. lack-of-functionality. But it makes "I don't have enough energy to do anything even remotely physical, but I can sit here and do creative stuff" impossible. Anything that requires thinking—doesn't get done so well, in the blocked state. Add to that the M.S.'s fatigue/physical challenges...

Well, the easiest way to describe this is, "It sucks." "It," of course, being shorthand for "pretty much everything."

And, of course, that's just tonight. Tomorrow will be different. And the same.

Oh well. As Super Chicken always told his sidekick, "You knew the job was dangerous when you took it."

My best therapy

2011-09-09T20:47:00.001-07:00

The first Friday of the school year. And everyone is still happy with each other, even if homework and reading and all that sort of stuff has been assigned. I ended the week, as ever, with our Anime Club, and we set the room shaking with joviality and laughter.

There's a special magic between me and my students; they are beginning to realize that they are absolutely their own person, completely unique, someone completely different from the person they always thought they should already be, or should become, or was going to become; they're the person that they are becoming. It's fun, it's scary. And they really enjoy having someone to talk to who only cares about that person, the person they are and that they're becoming; and to have a non-parent adult they can trust, and who they can sometimes just watch cartoons with.

And they're my best therapy.

Right now, as I type this, my right leg below the knee is going seriously, seriously numb, and I've got really shoddy control with the other leg too. Getting up to walk to the bathroom, to the kitchen to get water, is a major operation. Standing at the sink to do dishes, standing at the cutting board and the stove to prepare dinner... eh, I dunno about that. It ain't gonna happen right now. Maybe it'll happen tomorrow, at least a little bit. How much will I be able to do? I really don't know... I don't know how long I'm going to be able to stand in the kitchen, recently it has been so hard to do that, I wonder how long I'll be able to stand or walk at all. I'm in a bit (bit?!?!?) of an energy nadir, I'm loathe to try to do creative work because I'm afraid it's gonna be crap, I'm loathe not to do it because I'm afraid of having things spin out of control into "permanently not done," I know I'll hate doing the latter but I'm afraid of doing the former.

But at least, I know I can keep my job. And I enjoy my students. And I tell them, "I just showed you how to format a paper suitable for turning it in to pretty much any teacher, and I showed you a trick that you'll be able to use for the rest of your life as a computer user, and I promised you that all of my tests would be open-note. Not bad for the first week of school, is it?" And they laughed. And so do I.

And they are my best, my most wonderful, therapy. They may not help my walking improve, but they give me nothing but beautiful quality-of-life. Suck on that, Tysabri.

Success; always interesting...

2011-09-07T20:11:00.000-07:00

First day of school. First full day of work after a very "up and down" summer. Which had very prominently featured lots, and lots, of "down."

Made it through the entire day. With quite reasonable aplomb, all things considered.

My favorite moment: A student raises her hand to offer an answer, it turns out to be quite wonderful and entirely correct, and I shout out: "Excellent! Five points to Gryffindor!" She laughed. (She'd be in Gryffindor, anyway...)

Now, I'm toast. Gonna take my herbs and then lie down, maybe read the script for what's proposed to be the musical this year.

And we do it all over again tomorrow.

That's the plan, at least.

Now, c'mon, you M.S.ers—the phrase "that's the plan, at least" has a very special meaning for us, doesn't it? Considering how the plan works itself out, or around, or doesn't, or ... well, whatever it does, it's unforeseen and ...

...

... always interesting, isn't it?

Interesting

2011-09-06T21:28:00.001-07:00

Tomorrow, it begins again. I return to Teaching the Youth Of America.

Yesterday, I didn't think it would be possible. Today, I had my weekly acupuncture treatment, and I knew it would be possible. I mentally spun out and hit the wall, this evening, at home, and undid a lot of today's acupuncturing, I'm sure. Oh well. At least, this time, I watched it happen. Hardly a consolation, but usually I don't know when it happens, and this time, I did, and I think (for once) that I understand how it happened, and maybe even why. A step ahead, even though I'm going to have to live in darkness for the entire week, until next Tuesday, when I get it reversed again.

Humanity. Ego. What a pisser.

Anyway, I did have a good discussion with my acupuncturist/neurologist/MD about the MS today. He is sure that I definitely do not have relapsing/remitting, since I don't have attacks that then abate (whether mostly or at all). All of my neurological malfunctions ("inconveniences," let's call them) stick with me. They don't get better. Now, there's no reason that they can't, the nervous system is self-correcting (albeit much more slowly than we like), my herbalist certainly thinks that once we clean out all the nastiness that's causing damage, we can start rebuilding. All this is possible.

In the meantime... I have what I have. Or don't have, depending on how you want to describe it.

Yesterday, I was very dark. I wasn't sure whether I was being prudent in staying at home and not going off to the store or whatever, or whether I had just plain given up. Very hard to tell... probably a little of both.

And yet today, even in darkness, there was light. It was "book day" at school, the kids pick up their books, their locker combinations. I saw some of my students. We laughed. We talked about the cartoons we were going to watch at our Friday-after-school anime club. I told at least one parent that her daughter was very high on my list of people that I don't worry about—and how often does a parent hear that? A lot of smiles, today, even from darkness.

A long ride to the doctor and back, some very interesting points, then a return to darkness this evening.

And tomorrow, I face a room full of 14-year-olds to teach them about using computers. From my wheelchair.

Nobody ever said the MS journey wasn't ... interesting.

The Beginning of the End

2011-09-02T22:32:00.001-07:00

... of the summer. I spent the day at school today getting stuff ready for the upcoming school year (first day of instruction is Wednesday, next week). And although I spent the day working and got all sorts of stuff taken care of, the one thing I wanted to do,the one thing that I left home specifically to do, didn't get done. It'll get done next Tuesday, before I make the weekly journey to the neurologist/acupuncturist.

My walking is not so good, right now, worse than usual, shakier and slower than what has up to now passed for "normal"—thank goodness I have a powered chair to use at school, otherwise it'd take me ten minutes to go the distance most people cover in under a minute. That I used to cover in that, or less, time.

I'm almost ready—have to do a little more planning—and after ten years at this, I shouldn't need to worry. Actually, I'm not worried... I'm kinda numb with disbelief. Numb with sort-of concern about how I'm going to make the very sudden shift from throwing the whole day out the window if I'm just not up to fill-in-the-blank, should fatigue drive me to do so, to having no option besides full-time, high-energy, success simultaneously performing and educating, which is pretty much what you have to do for ninth graders, the first week of school.

Not sure whether I'm in denial, or quietly confident, or scared, or really really in denial.

Pretty much par for the course for me, on this M.S. highway, isn't it?

Luxury

2011-08-31T19:16:00.001-07:00

An interesting idea for a post on Tiny Buddha today, titled "We get to decide if today counts." And yet, the first questions the article posits are about the future "counting."

I'm being tortured by a belief that today "counting," on many days, is being stolen from me.

I "couldn't write music today," on the days for, whatever reason, I felt like I had nothing to give. I "couldn't work on my [fill in the blank]" because I felt like I had nothing to give.

Sometimes I asked to be pushed in the walker/wheelchair, because I feel like "I just can't walk right now."

I don't do the dishes, or I don't cook, because I just don't have the energy to stand up that long.

In all those cases, do I really not have the energy to do it? Or do I believe that I don't have the energy, and thus don't have the energy?

They feel the same—that's the nasty bit. Believing that I'm in a state of lack, and being in a state of lack, somehow feel the same. Intellectually, I know they're not, but I haven't figured out how to really and truly tell the difference between them.

Great. Not like I'm not living in enough confusion, with my nerves sending confusing messages about "is the leg hot or cold" or "is the leg numb or not" or "can you walk or not."

Yeah, the human condition is living within a world of perpetual non-certainty, in which belief or fear can cloud direct gnostic apperception of truth. And one thing's for sure about M.S.... it's nothing more or less than the human condition, simply writ so large and clearly that we do not have the luxury of ignoring it.

Ah, but that particular luxury was so nice, those cuddly days that we used to have it, wasn't it?

Sigh. As a wise friend of mine once said, there are many paths to enlightenment; but "nostalgia" isn't one of them.

Sigh.

Roller coaster

2011-08-29T19:32:00.000-07:00

A real roller-coaster of "can/can't."

Over the last few days, I felt like I just couldn't do anything. Anything. Spent a lot of time in bed, and when I wasn't in bed, I wanted to be.

But today was different. Today, I had a farewell lunch with a student about to head off to his freshman year at Stanford; picked up a new pair of glasses (spent the day driving around with an old pair, vision was extremely excellent by my eyes really felt confused); took my wife to the dentist (where she received a "don't worry, nothing's wrong" answer to a "did a filling fall out or go awry" question, always good news); just finished a quick computer-task for the about-to-hit-us school year. No problem, with the "doing" of anything.

Except walking. Standing up. Every time I tried either of those things, I found it weird and difficult. Especially standing up; it's surprisingly, unusually, and persistently difficult—moreso than it usually is. I find it hard to place the feet, sometimes I find them shaking a little before they hit the ground.

A few other persistent malfunctions, details I'll spare you; but a few biological mechanisms persist in refusing to work, and they do not appear to have work-arounds, so I'm really not sure what to do about those... and neither does anyone else, including my medical team.

First meeting of the onrushing school year is Wednesday. I spend all of tomorrow visiting my medical team. I hope they can sustain me for the upcoming assault... I don't feel "unready," but I certainly don't feel "ready."

So how's that different from every single day, in the M.S. biz?

Somehow, I don't find that reassuring. Often, I find such things funny.

Not today.

Insurance; Campbell; Buddhists; comedy

2011-08-27T09:20:00.000-07:00

Two things came over the Internet this morning.

First, from the Antichrist--sorry, I mean my health-insurance company. They told me that no, sorry, my dermatologist charged me $1.14 more than they think she should be charging me, so they won't apply that to the deductible. Also, from the doctor who is also a neurologist, who is treating me for my neurological disorder... him, he's charging $2.38 too much for that service, and (I forget how much) too much for that service, and (again) for that service, and well, we won't pay for it and we won't apply the full amount he charged you to your deductible. All of this, by the way, the day after the pharmacy wanted to charge me more than $200 for an athlete's-foot cream--unless, of course, I brought in the magical coupon from my dermatologist to reduce the price to only $100. And those, by the way, are the insurance-approved prices... the same insurance company that isn't willing to pay my neurologist for the acupuncture he uses to keep me from wanting to kill myself (well, it's easy to understand why they don't want to encourage him to do that, if I off myself they won't have to pay anything to anybody, the perfect solution in their minds I'm sure).

And after all that... this came over Facebook; a quote from Joseph Campbell:

‎"We must be willing to get rid of the life we’ve planned, so as to have  the life that is waiting for us. The old skin has to be shed before the new one can come."

As true for the insurance system as it is for those who suffer from it, and from the things for which we require their assistance.

And yet, it's Campbell's message that is the more important; and certainly, the lesson we M.S.ers are constantly called upon to learn.

That, and the story of the Buddhist monks carrying the woman across the river. Yeah, the insurance company does what it does, but they don't need to ruin my day after I've read and put down their paperwork. Or more precisely, I don't need to ruin my day after I've read and put down their paperwork.

There are times when we need to carry the M.S. across the river, and times when we need to put it down.

Gee, if I had read more Buddhist literature, could I maybe not have gotten M.S.?

Probably doesn't work that way. But, comedy like that, we try very hard to write; and can't, because it doesn't work; but somehow, that's the real comedy, isn't it?

Bittersweet gifts

2011-08-24T21:35:00.000-07:00

Some musings.

In the weather, I sense the death of summer. Not the "passing of the seasons," some philosophical musings on how nature changes, we change, everything changes, the usual... no. I perceive it as a death. Not just a change, but a final change. This summer—not all summers, but this summer—is ending. Ending with a capital E. Really ending.

I drove by Caltech today, a place where I used to do a lot of creative work. I wrote a lot of music for their theater department. I even directed a show there. It was a wonderful time. I was truly blest. And now, that place is no longer "for me." There is a theater program still, but there are different people running it. They have their own interests, their own desires, their own needs. They don't include me; they never have. That part of my life is over; over with a capital O. In its own way... another death. It died a few years ago; but driving by there today, I have to admit that I didn't feel the sweetness of "wasn't that fun" nostalgia, I felt... departure; a time that had gone with a capital G; the death of a beautiful adventure.

I sent a composition to a former college professor, thinking he might be interested in performing it with his student groups. He loved it. Oh yeah, he retired last year, I didn't know that, so no, they probably won't be looking at the composition (nothing against the composition, it's just conducting the groups ain't his thing, any more). I went to that college's library a couple of weeks ago, noticed how things had changed when I drove around campus looking for a parking place. As an alumnus, I'm still very welcome to use the library, I can even pay a very reasonable fee and still check out books. But it's not my home any more. My time there is over. Over. To add insult to injury, there's a new organ there, which if I called the right person I'd be more than welcome to play; which I'd do if my legs worked well enough to play the pedals, which they don't, and I don't think I want to take the time and energy to try out an instrument I can't play. At least that's not another "death," it's inconvenient and annoying, but there's no permanent loss involved. Well, there may be, but I don't want to go there right now.

As I look back at all these "death" ramblings... none of them are M.S. related. I'm really quite blessed. I'm getting treated with things that not only don't impact, but improve, my quality of life; I actually enjoy the hand controls I had to have installed in my truck because I can't trust my legs to operate the pedals; my "disabilities" have resulted in changes at work that actually put my skills to better use than schlepping things (and oh, have I ever schlepped in my days there); the only maybe-M.S.-related "handicap" that has really gotten to me has been the fatigue, but according to my acupuncturist—who, by the way, is able to relieve it, sometimes all-too-briefly but at least he can do something about it— there's more to it than neurological "wiring problems."

No. The "death of the summer" is the way of the seasons—all deaths are the way of nature, really, as much as we don't want to deal with them. But all these other "deaths" of "the way it used to be, and isn't any more"... these aren't on the M.S. level, they're on the spiritual level. That was then, this is now, "then" gave birth to "now," but "now" could not have been born without the death of "then," any more than the butterfly can exist until the caterpillar dies.

And clearly... I guess I haven't really dealt with the death of "then," have I?

And... I'm not sure I would have seen so clearly, the need for me to come to terms with the passing of the past ... without the M.S. experience.

A bitter, and sweet, gift of M.S.

Patron saint

2011-08-18T21:04:00.000-07:00

This is Daruma-san. Based on Bhodi-Dharma, Daruma meditated so long that his limbs just plain fell off. He can be knocked over, but he always just rolls back up. The kanji on his chest say "success."

He's a favorite patron saint of persistence in Japan. Often these dolls will be given as gifts, with both their eyes blank. When you start a project, you fill in one eye; when you finish the project, you fill in the second one.

Some friends of ours have gone into the business of making Daruma dolls. They offered them for sale at a recent festival in LA's Little Tokyo, where my wife took us for my birthday. Traditionally, the doll is red, but they made special "LA versions" that were yellow and purple. Purple being a favorite of mine, I decided to pick out a purple one. (He's much more purple in real life than in that photo.)

I went through every one they had. They all looked not "fierce," but angry. Really angry. I mean, I wanted to support our friends, but these Darumas, they were pissed at something. Really pissed.

Except one of them. I looked into his face, and I saw, "Yeah, I'm mad at what happened to me. But I'm still getting back up."

He's the one that came home with me. He sits in my studio right in front of me, right underneath my monitor. Yeah, he glowers, but not at me. He encourages me. He's completely aware of what happened to him. He's completely truthful about what he feels about it—it pisses him off.

And still, he's not going to stay down. He's getting up anyway. He's not doing it to "get back at" whatever got him down, he's not doing it for any other reason besides... dammit, he's getting back up. He just is.

A friend, and reminder, for us all.

Ganbatte. Persevere!

Commitment

2011-08-16T20:20:00.000-07:00

A day of getting my ass kicked. Therapeutically.

Got a couple of particularly nasty points at the acupuncturist today. II/III entry/exit block, for those of you keeping scorecards. There's pretty much no way to get those treated without it hurting. A lot. Thank God he treated them, though; I feel so much better now—and that has nothing to do with "better now that the needles are out."

But life is worth living, now. Life is live-able, now. Are any of the neurological nasties fixed by these treatments? Legs working better? Other surprise malfunctions, functioning? No. But life is worth living. I'll take that, any day.

A brief interlude; a small but ugly toe infection, antibiotics were prescribed. An antibiotic that I've had before—and one with no side effects. How often does that happen? A small gift. But I'll receive it, gladly.

Spent some time with a beloved and trusted spiritual adviser. He asked me about a few things I had said were annoying me in my relationship with other people, and his response to each one of them was, "Yup. That's you. That's all you." Nothing about who was right and who was wrong—as if there is an absolute right and wrong in the way I'm relating to the world—except that choosing to relate to the world the way I am is not morally wrong, but "why are you causing yourself so much grief" wrong. He used a lot of technical terms in his analysis (omitted for brevity, they wouldn't make sense to anyone not in this spiritual practice anyway), but I gotta admit... he was right.

And the bottom line: You want this stuff to stop? You need the spiritual practice. If you really want these things you know are karking out your life to stop... practice.

Well then.

A lesson I've been unwilling to really face, most of my life. "If you really want this (whatever 'this' might be), work for it. Because if you don't work for it, you won't get it." It has always been easier dealing with this when I was working on external things... years ago, I spent uncountable hours renovating an organ, and I'd say to myself to get myself into the organ chamber, "The organ won't renovate itself."

And somehow, I find it hard to cop to " 'I' won't renovate itself."

Percussion, I loved to practice. Kyudo, I loved to practice. If you do those right, those are spiritual practice, but those roads will take a very, very long time. There are other, faster, roads, but they take a lot of work. A lot of work.

So, there we are. Multiple sclerosis forces me to deal with my unwillingness to fully commit to a powerful spiritual practice.

As a wise man once said to me, "You needed to get M.S."

Perhaps... He was right.

Cartoon-borne truths

2011-08-15T13:04:00.000-07:00

Thing like this are why I distrust Western medicine.

Western medicine is not without its strengths, its share of full-on miracles. "The right tool for the right job," after all. As a Chinese friend of mine liked to say, "If I have a hole in my side, I don't go to a Chinese doctor."

And no, I don't take xkcd as my one trusted source for medical information. And I see an MD every week. ('Course, he feels the same way I do about the best and worst of the way medicine is practiced in the West, and he has a lot more first-hand knowledge and training to justify those beliefs, and he's the first to tell me when I'm wrong... and when I'm right.)

But this little cartoon looks all too familiar, doesn't it?

Walking/wheeling

2011-08-11T21:13:00.000-07:00

Spent the day today at the Skirball Cultural Center, seeing some amazing exhibitions on Jewish Magicians of the Golden Age and Houdini: Art and Magic. Quite amazing seeing how little that magic has changed over the past 100 years; they had a video recording of a performance of one particular effect that is still being performed today, almost identically to the way it was performed 100 years ago. Century-old effects and props that are identical to the effects and props that can be easily found in modern magic stores.

I spent the day in a big-wheel push-with-your-arms wheelchair. Normally, I use a transport-chair/walker, but I didn't want to take the enormous amount of time and energy (especially time) that it would take for me to "walker" it, and I didn't want to ask my wife to push me around all day, especially because we have radically different museum speeds and approaches to exhibits, and chaining us together for the day guarantees that neither of us will get the maximum enjoyment out of the day.

I enjoyed the greater speed that the big-wheel wheelchair afforded me, but the transport chair is more agile in its maneuverability. And navigating almost ADA-compliant facilities is vastly simpler with the walker. One of the "handicap-friendly" restroom stalls was maybe, on paper, barely wheelchair accessible, but it was incredibly difficult to maneuver the chair into exactly the correct position even to make closing the door possible (much less permitting other necessary activities). It would have been no problem with the walker.

Final verdict: Yeah, the big-wheel wheelchair can be (sometimes) convenient, but I want to do whatever I can to make sure I'm not confined to one of those. Really walking would, of course, be best. But one thing at a time.

And hey, if you're not in a hurry, life with the walker isn't really all that bad (considering the alternatives). The "walker life" isn't one that I'd recommend as a choice, but when you don't have that choice... well, you take what you can get.

Good, better, neither; a mystery

2011-08-08T21:36:00.001-07:00

So, today, since I had been stuck at home yesterday and kept (let's call it that, for brevity's sake) from going to the place I wanted to go to, I decided today to say a very large "**** you" to the M.S. and take the drive to the library to do some research.

Had a wonderful time. And, I must say, "carrying" 12 books from the stacks to the desks at which you'd be reading them is much simpler when you have a walker to pile them into.

There was some wonderful air at the campus hosting the library; a gentle scent of "generosity" from happy happy plants. Ah, the lovely five-element season of Earth--not here yet, but its spirit is making itself known.

There was one point during the adventure where I was told that I'd have to "walk" (it's only in quotes for me, not for most of the library users) to somewhere outside the library, I still don't know exactly where, to obtain and pay for the magical cards that would enable me to use their photocopiers (in my day there, during my doctoral program, said machines were inside the library, not outside it). When I heard that, I told the librarian as I leaned on my walker, "Go where? Go somewhere else? Where's that? Y'know, sounds like good idea just to copy it down my own damned self." She smiled; she saw my point—and my smile.

I'm not sure what it is about leaving my house that gives me enough energy to function outside my house, and to enjoy it. I spent a lot of time this summer specifically unable to leave the house. Unable to deal with the world. Unable even to deal with the inside of the house, barely able to deal with "walking" across the house to get a drink or use the bathroom. Part of it, I'm sure, is simply deciding to do it, and having no spite or anger within that decision; simply, "I'm going." Part of it is having the energy to declare and claim that outcome; if one can't say "I'm going," to believe that one can go, that the simple doing of the going is already accomplished in the claiming of the outcome as possible to begin, one probably isn't going to go.

And interesting "which came first" question. Acupuncturists are taught that energy follows intention; but there's something different about "intending" to go and "deciding" to go and "committing" to go, and simply saying "I'm going" and reaching for your car keys—even knowing full well that you'll need the walker, that it's going to take a lot of effort, that ADA-ed places are going to be easy and non-ADA-ed places are going to be hard, or even impossible without help.

And yet, this time, I reached for my keys and left. I know that "what changed" was my consciousness, it's hard to say that the neurology was different. But was it? Or wasn't it?

Who knows? It'd sure be nice to know, though, if such things were under my total control. If they were, I'd just decide to not be limited by the lack of energy and go about my business as I always have. One of the lessons I keep re- and re- and re-learning is that "business as always" of the Former Days just doesn't happen any more. And yet, on Good Days, truly amazing (and often fun) things still can happen—even Better Things than happened in the Old (pre-diagnosis) Days.

A mystery.

New adventures in "sort of"

2011-08-07T18:48:00.000-07:00

Ah, the "nothing hindering me" was so nice, while it lasted. It's gone, now. Not as gone gone as it has been, but it's certainly more gone than it was last week.

Today, I had wanted to go to some event. Had even planned on it. Sort of, at least.

The building it was to be held in is quite historic. Which means it's about as anti-ADA as they come.

I didn't quite have the energy to leave the house in time to get there early enough to do what it would have taken to get into the building, to the room the event was held in, etc. etc. etc. Plus, once I had gotten there, had I needed to make any kind of bathroom run, I would have had to pull myself up a flight of 8-or-so steps, without the walker, and then once up the stairs I'd have had to wall-walk to the restroom and then somehow manage to make it through the (if you'll forgive the turn of phrase) all-too-intestinal convolutions of the restroom itself. Repeat the process backwards to return to the room in which the event was held.

Would it have been worth it to go to the event, logistics aside? Well, I had thought so... sort of.

But, as you can guess, I didn't go. I was on the edge of going, too-late-or-not, simply for the sake of "**** you, M.S., I'm going anyway," but I wasn't angry enough. So I stayed home. Thought maybe, I'd accomplish something... I did, but only sort of. One thing that needed doing for work, took five minutes or so, now it's done. Hooray.

I'm thinking of going to my old grad-school college library to do some research, later this week. Maybe. The building is gloriously ADA'ed, but there's quite a hike from the closest place I can park to the building itself. And a bit of a drive to get there. I haven't really committed (to myself, the only person involved) whether I'm really going there this week or not.

Am I allowing myself to be defeated? Should I be less quick to give up? Should I be more realistic with my assessments of what's possible? Should I be less judgmental of myself for not being in my hoped-for "no problem for the typical Yalie overachiever" state? Should I be better at prioritizing?

Yes. All of the above are true. In their own ways.

Sort of.

There we go again...

"Doing" (in a good way)

2011-08-04T11:28:00.000-07:00

Today, and for the past couple of weeks, I find myself more able to function in the world than I have for quite a while.

I drive to the store. No problem. I take a former student somewhere to do research, then take him to lunch, then take him home, then go somewhere else.

Even last month, that would have been unheard of.

I wrote a couple of pieces of music. I intend to write more; but unlike last month, I think I'll actually be able to. But I might very well actually go somewhere and take care of some business and write that music in the same day.

Wow.

I got some great exercises from my chiropractrix yesterday; she's also a sports-medicine person, she knows all sorts of cool stuff. Exercises that I can do without risking falling over. That'll strengthen my legs so I don't have to worry so much about falling over. And how to pace myself and how to better judge where the "it's good to push yourself" and "idiot, stop now or you'll be sorry" boundary lies.

So I'm going to turn the computer off and go do those. And then I'm going to make tea. And then I'm going to work on music. And maybe, this afternoon, I'll drive to the bank and take care of some business.

Wow.

My ever-changing "normal" for now resembles very much what my old "normal" used to look like.

Comedy like this, you just can't write.

Strange pair

2011-08-02T20:33:00.000-07:00

World is changing. We're still in full-on summer, but I feel the coming of the energy of Earth, the energy of late summer. Sympathy is the emotion of Earth.

Last night at a Location That I'll Leave Nameless For The Moment, someone went off on how he was annoyed at how certain people had mistaken Thing A for Thing B and that was Just Not Right.

In an earlier more confrontational life, I might have lit into him, even gently. But last night, I said something that I think he's very rarely had said to him:

"You're right."

I told him he was right; that confusion or no as to the exactitude of Thing nomenclature (I saw the same confusion that he saw), there were things not related to the confusion that those who were confused had to deal with, which took a higher priority for their deliberations, and their confusion had nothing to do with their decision making; but nonetheless, he was completely correct.

No anger, no agenda of slipping revenge in through the back door; no riposte of any kind. A simple statement of fact: he was right.

A lot of things have, and are, happening to me because of the M.S. journey. My muscles--my legs worst of all, but all over my body--are simply wasting away. I'm often unsure whether I'm going to be able to walk, to stand up. To do all sorts of things I've always taken for granted that are just ... evaporating.

And yet... it is much easier, easier than ever before, to not take somebody on, to not contend merely for the pleasure of me being right. And we're not in the season of Earth yet, but I feel its energy, and I find it sympathetic to me, and it's helping me to be sympathetic to others.

Contending simply for a position of "intellectual correctness" is something I've done all my life. I'm not by any means completely "over it," but person to person, face to face, the uncontrollable instinctive drive to contend is fading.

When I talk to students, even when I have to talk to them about things they've done wrong, I find myself beginning with ... sympathy. It certainly doesn't mean that I let them get away with doing wrong things, but I begin with sympathy. There certainly was a reason why they did whatever they did, and sometimes what they need most is simply to have someone listen. The "you did X wrong, and there's a price for that" comes separately; but they certainly appreciate the difference between talking to them and talking about what they did.

Muscle wasting... and ability to extend sympathy. A very strange pair of gifts of M.S., is it not?

"Good enough"

2011-07-29T19:45:00.000-07:00

Now here's a blog entry aimed right between the eyes, from Tiny Buddha; it's about good things ending.

I have several reactions, with equal vehemence:

"Oh, I so need to hear this."

"I have to deal with this every day... but do I really deal with it, every day? Or ever?"

"Get out of my face."

Much of my attitude is based on available energy. If I'm running at a certain "base energy" level, things get done, I can't walk, but who cares.

If I drop below that line, I can't do anything, and I start to spend what little energy I have wondering what "not being able to do anything" is doing to my ability to manifest anything.

A lot got done today. A lot of fun was had today, simply sitting and talking. And my walking is horrible. And that didn't matter.

All signs point to being able to do things tomorrow. Nice things. Writing music. Doing some voice acting. Perhaps even sending some music to publishers, hoping that they might publish some of it. That latter, like the ever-changing quality of my walking, is not under my control. 'Course, it never has been, but thank goodness, I've never obsessed about that, at least.

And tomorrow, I expect my walking will be horrible, it seems to be ever thus.

But it'll be good enough. Which, by definition, is good enough. And that's something else that "over the base energy level" seems to do for me... not having a problem with "good enough."

But today, I'm manifesting, which I haven't done for quite a while.

And that is definitely "good enough."

Eat the strawberry

2011-07-27T17:31:00.000-07:00

A good trip to my various care-givers, yesterday. Got some acupuncture points called "The Sea of Energy" (which seem so far to be working as intended), and the herbalist reported that he would soon be able to start putting nerve-rebuilding ingredients in the prescription, as soon as the various nasties that are giving my immune system "too many balls in the air" are cleared.

A visit to the dentist Monday said that I'd need a tooth removed. Knew that was coming (actually, I was warned that that was going to happen about forty years ago, it's a baby tooth that never had a permanent tooth grow to push it aside, we knew it was gonna last about this long at best). Oh well, two out of three medical visits being good news is pretty good, in this business.

My neurologist-cum-G.P.-cum-acupuncturist said that my leg weakness was about half nerve damage, half "you're out of practice," so get some exercise, dammit, you wanna be in a wheelchair 100% of the time or what? Well, the answer is "what," obviously. Besides "no lifting weights," his suggestion was to do any exercise rather than no exercise, so there we go.

'Course, my "walking," and that's in huge air quotes, "walking," even with the walker, is pretty wacky right now. Part of the problem is that I'm actually getting sensation in my legs. As well as full-on numbness. As Mr. Spock would say, "Fascinating." And, it really is unusual. I'd find it entertaining, if I wasn't concerned that I'd fall over at any second. Except I don't, somehow.

This is one of the damnedest things about this phase of the disease—false alarms. "Urgency," as the turn of phrase has it. But when the time comes... no, nothing urgent about it. "You're going to fall over, any second now." Except I don't. Somehow.

What an interesting adventure, it is... To be confronted with "This is just a sensation. There is no 'truth' in it. It is just a sensation." To feel with absolute certainty that your senses are reporting something completely true to you, and then a manifestation (or lack thereof) shows with absolute certainty that said sensation wasn't "true." And I get the converse, too... A sensation that "there is nothing happening." And then I'm shown that there was/is something happening. One sensation is false, one sensation is true.

Is the lesson "There is no false, there is no true, there just is ... is"? Well, interpreting this as "I can't trust my own body" is more depressing and doesn't extend in its Zen-ness to the rest of the world...

Or perhaps the lesson is... eat the strawberry.

Taking what you can get

2011-07-24T19:23:00.000-07:00

Man, ran headlong into "can't do that anymore" today. I used to be able to run cables from monitor to computer. Apparently, I can't any more. Well, I sort of can, but boy, is it expensive--in terms of what it does to my being able even to walk around the house. Every time I stood up today, I wondered whether I was going to make it all the way up and stay that way. Who knew that getting on the ground under control was so difficult. And that simply sitting on the floor was so difficult. And that arranging your legs manually--quite literally manually, with your hands and arms, was so difficult. And costly. So many once simple things are so very, very costly.

I had to drive to two different big-box stores today to find what I thought would be an easy purchase. The driving was easy. Walking, even with the walker, from the parking lot to the inside of the store... that was hard. Really hard. To add insult to injury, nobody had what I needed. I got a sort-of workaround at the second store, which doesn't work around as well as it needs to. I'm going to have to go again to computer stores tomorrow. After going to the dentist. Man, the fun never ends.

I wanted to get this finished before my wife got back from ComicCon. Not like I didn't want her help, nothing like that, but I wanted to do it for her. A gift: making the studio better for her.

Well, she's gonna have to help me anyway. Pushing me around various computer stores to get cables--and it's going to have to be pushing me, because the walking is fading very, very rapidly. Pushing me around computer scores, after going to the dentist. (She's got an appointment too.)

Not as romantic as I had hoped, this "prepping the studio for her."

Well, at least I will (probably) be able to drive us to the dentist tomorrow.

You take your romance where you can get it, I guess.

At least the bloody box works. Not as well as I would like, but it does, mostly work. And I can still walk. Slowly. But I can still walk.

Again: you take what you can get.

Enjoying the ride

2011-07-23T10:33:00.000-07:00

Oh, what a week, and the week ain't even over.

For the first time, I fell down and hit the ground; my left leg just collapsed under me. When that happens at home, I'm near enough a wall or something to halt my fall, but this happened in a store. I controlled my landing surprisingly well, but my head hit the corner of something. No structural damage, only a few drops of blood shed, but it really pranged the muscles connected to my jaw so that opening my mouth is nasty painful. That's been subsiding, it'll be gone in a few days (I think).

The list of what's malfunctioning seems to be growing, both in scope of malfunction and number of "issues," let's call them. Same thing's happening to my seventy-nine-year-old mother, for different reasons, she doesn't like it either. But, I'm taking a new tack in the meet-and-greet of these new "issues." I've had several brushes with mortality, in my day. Big earthquake. Car-related adventures, the most spectacular of which was a seventy-MPH spinout into the center divider of a freeway (Again, humor you can't write; the car started skidding, and the thought that immediately came to me was "Turn in the direction of the skid, they said in Driver's Ed... but they never said what 'the direction of the skid' meant.") And each time, I had exactly the same reaction: "Well. This is interesting." I quite literally enjoyed the ride.

And I think what is called for is precisely that. If I can look the Grim Reaper in the face, even when he's not reaching for me but simply standing there, and say "Hm. So that's what he looks like. What a ride!" why can't I enjoy the ride of the neurological failures? Right foot and leg below the knee goes into dental-grade numbness, from time to time; honestly, it really is interesting, the wild sensations (and non-sensations) you get from it when you try to walk on it. There are other failures that you definitely don't want to hear about, and they're hardly "fun" to deal with, but they certainly make for an interesting ride.

So I can't do what I planned, on day X, because I need to sleep instead. So I can't do what I used to do, with activity Y. So I can't go up a stepstool. Or carry that. Or move that. Or walk or stand there.

And as to "fixing" things? Doing something that makes the malfunctions back away, or stop? At the moment, that's not on the menu, as they say in the restaurant biz. (I'm still seeing all of my caregivers, but their best efforts at the moment aren't erasing these symptoms.) So let's not mourn the loss of something that couldn't be made mine.

Work with what I got, at the moment that I have the energy to work at all, and enjoy the ride.

That's hard enough.

If all I do is enjoy the ride... hey, at least I'm having some fun--and more than I would have if I was concentrating on the failure rather than the fun. And, although this is hardly theraputic, wallowing in passive-aggressive, it is kinda funny...

My best revenge against M.S. is enjoying the having of it. Not enjoying the malfunctions... but enjoying the ride.

Humor like that... I need to write.

Fire and change

2011-07-19T20:26:00.000-07:00

An interesting turn on the road.

Something has changed. Don't know what. Something may have come unstuck. Don't know what, or how.

Rather than dive into an omphaloskeptic spiral, I'm just going to hold on and see where the ride takes me.

An interesting post on Tiny Buddha talks about the fear of leaving a secure job when the risk feels scary. No, I'm not thinking about how it applies to my employment... I'm thinking about how it applies to how I've been pretending (yes, let's be honest, pretending) to cope with the M.S. journey.

The way I've been traveling this road... has been wrong. I don't know exactly how, but... I haven't been suffering just from the physiological changes, but from the way I've been traveling the neurological highway.

And that has to change.

And I need to not be afraid to leave the comfort (Right. Comfort. Hah!) of the way I'm traveling the road.

I don't know how to do that, either. But seeking "doing" isn't the right road, either. I would have found that long ago.

But this is the Fire season. And I just got a very interesting treatment to my Fire element at the acupuncturist: metaphorically, it's sweeping the ashes out of the Fire so it can burn better.

I get that every summer. That's always made a big difference. We'll see where it takes me, this year.

Big entire-life changes that can't be made because they're just too big to change all at once in a single shot... can be made indirectly, by making small changes. Pushing the first domino, as it were.

I'm not exactly sure which is the first domino... but I'm sure, if I listen, it will call to me.

So this is where the neurological highway is taking me right now, with my panoply of ever-changing vexing corporeal malfunctions and all. As one character loudly proclaimed in the movie Andromeda Strain, "Hell of a way to run a hospital."

Out of the mouths of babes...

2011-07-16T20:40:00.000-07:00

I was called to the school at which I teach, this week, to take care of some Tech Stuff.

While I was there, I ran into one of my students from last year. I asked her how her summer had been, so far.

She said, thoughtfully, "Eventful."

Even though I've spent a lot of time this summer dealing with fatigue, and the Not Being Able To Do As Much As I'd Like polka, I've gotta say...

"Eventful" does cover it pretty well.

Giving up? Or not? Or both?

2011-07-14T14:25:00.001-07:00

I seem to be piloting an odd course between giving up and refusing to give up.

My ability to control my legs is deteriorating. My doctor says I'm not exercising enough. Fine, I won't argue with him... but the action of walking to the garage to look for something, then to walk up the four steps into the house and walk back to a chair, is very difficult. The brief work that I did yesterday, to go up two steps on a step ladder and replace two tiny light bulbs, cost me so much that I had to lie down for hours. And he wants me to exercise? What's that gonna cost?

And yet, I refuse to obtain a big-wheel push-yourself-around-with-your-arms wheelchair. Today my wife pushed me in my walker/transport chair from the car to the restaurant, but I walked myself to the restroom. No big "Dammit, I'm gonna do this myself" determination; just simple, quiet, "No, I'll do it."

I see my acupuncturist every week, on Tuesday. He restores and renews my energy. Briefly. At the moment, I'm doing OK; but I expect to have faded by this weekend... 'cause that's been my pattern for months. I'll be seeing my herbalist in a couple of weeks. He said, the last time I talked about my vague despair-like fog, "We never give up hope here. Take your herbs, stay squeaky clean on your diet, and keep hoping--that's all you have to do." Well, two out of three, I'm doing pretty well with...

I have energy now. I'm going to spend it on creativity instead of on schlepping, even to the small amount of schlepping I'm able to do. I still have ideas--and good ones. Drive, that's what I'm missing. And, I miss that drive, the unquenchable never-ending drive that used to be the sine-qua-non of my expressing-creativity lifestyle.

But, as the Zen saying goes: eat when you are hungry, sleep when you're tired. Well, I'm rarely hungry any more, and I become tired for no apparent reason all too easily.

But I just ate and I'm not tired--at the moment, at least. I have the energy to do something creative--for the moment, at least.

Perhaps there's a Zen saying buried in that, somewhere. If I figure it out, I'll pass it along.

Two words

2011-07-11T11:01:00.001-07:00

It's interesting, meeting "Well, I guess we can't do this, right now" face on. It has been coming at me in generalities, and those are so easy to deflect, to deny. Specificities, you can't hide from.

I have a quite lovely light in my studio. It is full of little lenses, and little 12-volt bulbs. It casts lovely light, and looks lovely as it casts the light.

Well, the cute little bulbs went the way of all flesh (of all "filaments," in this case), and they needed replacing. I'm tall enough to get on tiptoes and reach up and pull dead bulbs out of the fixture, but I'm not quite tall enough to do that and insert them. I need a step ladder. Not unreasonable tool to need, you'd think.

And it is (was) a very-easy-to-use step ladder. And I only needed to go up two steps.

I had no idea how hard that was going to be. I had to get a six-foot piece of bamboo (which I keep near the front door and occasionally use as a cane, outside) to act as a stabilizer for the mere going up and down. And one hand on the cane, one hand on the ceiling to steady myself, and that leaves one hand free to replace the bulb ... oh yeah. A little under-resourced, it would seem.

It took probably ten minutes to replace two of the eight bulbs. Then I had to go lay down for ten minutes--just sitting down wasn't enough. And now, simply walking to the kitchen to make tea, I can tell that I've really pushed my legs--and myself--a lot, today.

I don't think I'm going to try to replace the other burnouts. I'm going to have to ask for help; clearly, I'm going to need some help on this project. Fortunately, my helpers won't have to expend nearly as much energy as I did. (At least, I hope not.)

So, what feeling am a left with? Defeat? Actually, no... Embarrassment, because I have proven that I can't do things that I used to be able to do? Eh... maybe a little sorrow, but not embarrassment. But only a little. Dismay? That I can no longer control my environment, my home, my in-home workspace, the way I used to and that I had hoped to again? Well... maybe a little. But only a little. Determination? To overcome these limitations and succeed nonetheless? That I can tell you clearly... nope.

What do I feel? Two words: "Oh well."

I don't know everything there is to know about the paths to enlightenment; but I'm sure that those two words are not a mantra that'll get me there quicker. The Buddha saying "oh well" and me saying "oh well" are, I'm sure, different.

I am a wordsmith. I have a huge working vocabulary, and absolutely no fear of dictionaries. And "oh well" is the best I can come up with.

Some well of emotion is definitely not getting plumbed, here.

Crickets, kazoos; Eeyore

2011-07-08T11:03:00.000-07:00

Vacillation between ... extremes? Dualities? Perceptions?

Wednesday was a day of "I can." I wrote music. I went to a friend's superlative (can't really italicize/emphasize that word enough) lecture on science fiction and mythology. Talked a little bit to his wife about another project they're undertaking, the lessons learned from which could very well be invaluable to a project I've been thinking about, quite literally, for years. Which could be done from my computer and which wouldn't be impaired by any of my physical challenges.

Thursday was a day of "I can't." No energy. Didn't want to leave the bed. Body was malfunctioning as ever, but yesterday it was harder to deal with, somehow. A very long list of "Haven't we been working on that? Hadn't we been making some headway on that?" issues that all of my medical folks have been directly confronting, and it was though they had been doing nothing about them. Ever. Extra darkness added by projections about "Is insurance gonna pay for a procedure that I've been postponing but probably can't any longer... If I can't stay out of bed long enough to write Christmas music, am I gonna be able to deal with 9th graders in September... Summer has always been my 'big accomplishment' season and so far I've accomplished nothing... My wife has never been happier, she may very well have found her true calling in life and she's so unbelievably good at, and radiant because of, what she's doing; and I refuse to let my condition put a stop to that but I can't possibly be helping her..." Oscar Ichazo calls this mental noise-making chicharrero, the sound of a cricket chirping.

It's also a word for someone who makes kazoos; which really puts this mental rattling in its place. But whatever its English meaning, you can be sure: as the saying goes, it don't make you smarter.

Today, so far, is a day of "maybe." Enough of the body works well enough to do what I need; at the moment, at least. The crickets are silent; at the moment, at least. I got out of bed and came to the computer to do this. While at the computer, I'm going to work on some music.

We'll see how it goes.

Which simple philosophy, honestly, needs to be not so much a cry of despair as it has become, recently. I normally sound like Eeyore when I say that... Eeyore, the ever-so-cheerful. "I suppose they will be sending me down the odd bits which got trodden on. Kind and Thoughtful. Not at all, don't mention it."

And as the saying goes, that don't make me smarter either.

Strange resonances

2011-07-03T17:39:00.000-07:00

Today, I was channel surfing ("relaxing," we delude ourselves by calling it) and came upon the Lord of the Rings. Frodo was struggling alone up Sauron's Road to the Sammath Naur on Mount Doom, and he fell down, completely exhausted.

And he had a vision, of Galadriel holding her hand out to him; and she said, "This task is appointed for you, Frodo."

This task is appointed for you. Did I think she was speaking to me? Did I think God was speaking to me, through the good offices of a Peter Jackson movie? Heavens, no.

But I heard it. Very deeply.

And I got up, and did some things about the house I've been "meaning" to do for days. And haven't. And yet, I did them.

One of the things I wanted to do involved a step ladder. I made it up to the bottom step; clearly, that was not a good idea. I got off (safely) and put the step ladder away. And yet--and this is the most important part--I didn't "wig out" at having been "defeated."

This has been getting to me a lot, over the past month. Over my life, it has been easy to say goodbye to things that I was done with. But now, I'm constantly confronted with "Do I really have to say goodbye to this?" to all sorts of things I always thought were so... simple. Things that I was not at all "done with." Except they're not simple, any more, and being slammed to the ground yesterday as I tried to do something which formerly would have been more than simple enough, was certainly a wake-up call for being "done with" some things.

Saying "I'll just say 'goodbye for now' to keep the door open" is a delusion. Worse: it's a lie. It's not saying goodbye at all.

There's no reason, of course, that one can't say "goodbye" but then "welcome back," if such opportunity presents itself. "Goodbye forever" is a much of a non-release as "goodbye for now;" you're attaching to the loss, rather than the thing you're pretending to say farewell to.

But this is the task appointed for me.

Another resonance: A question asked by a friend of another friend, was related to me: "When will he start walking again?" The person telling me this story suggested that perhaps the real question was "When will he get rid of this M.S.?"

Yeah, you may laugh. But that's a very "Science of Mind" question. It's not just Science of Minders that would ask such things; an acupuncturist used to ask her patients, "Why did you give yourself this disease?"

Science of Mind is, in some ways, like medicine-friendly Christian Science. If you have a headache, meditate. If it won't go away, take some aspirin--what are you, stupid? Try harder next time, but take for now the road that you need to take for now.

A Science of Mind saying is, "As a man thinks, so is he." Clearly, I need to change my thinking. Lord, I've been saying that for months--years--the entirety of this blog. Also clearly, if it were that easy, I'd have done it by now.

But this is the task appointed to me. And it's time to change.

And I'm going to go write some music. I can't use step ladders. I can't take heavy things out of my car. I'm really not sure how much longer I'll be in a walker, rather than a push-it-with-your-arms wheelchair, I'm starting to consider getting one of those. I need to learn how to ask for help; also something quite new to the Independent Adventurer me. But operate a keyboard and a mouse--that, I can do.

So that, I'll do.

What an odd thing to be puzzled by: to find saying "I can only do what I can do" to be limiting, and uncomfortable. Especially since before I started walking the M.S. highway, I was only able to do what I could do.

Life's lessons

2011-07-02T19:47:00.000-07:00

Another "oh my" day.

Drove about three hours today--1 1/2 there, 1 1/2 back--to pick up a piece of equipment. I drove a route I used to take quite regularly to play at a church in Orange County. It's been a long time since I took those roads...

Anyway, made it there with no problem. Made it back with no problem. Did a little thinking on the way down, had some interesting ideas. I might have talked about those, but...

After I got home, I rested for a couple of hours, then tried to get the equipment out of the back of the truck.

Tried. Almost failed--spectacularly.

Thank God it didn't break when it hit the ground. (And that I didn't break when I hit the ground.) Much of the reason it didn't was that I controlled its fall. But its fall controlled me, pushing me off my feet, and I hit the ground hard. And was pinned underneath the equipment; not heavy enough to cause damage when it landed on me, but it kept me on the ground.

Didn't take more than a minute and a half to get up, extricating myself from under what had fallen on me. Took about three more minutes to get it back on its wheels and pushed into place in the garage. Physically, at least, neither of us seem the worse for the adventure, although I hit my sacrum hard; I couldn't roll backwards, martial-arts-style, because the equipment had fallen on my legs and had pinned them, and all I could do was try to land softly in a lump. (Which, I must say, I did better than I had imagined might have happened.)

This is only the second fall I've taken since The Diagnosis, but the only one that hurt. And boy, did it. The whole event kinda took away what little wind was in my sails; oh, I had had such wonderful plans of productivity for the afternoon. This is pretty much all I had the energy for.

And just walking around the house isn't doing so well, either. Takes between thirty and sixty seconds after standing to make sure I have enough control to walk; although once I start walking, if I have enough walls, I'm OK.

I'm going to drink a whole lot of water this evening, and take some aspirin, and take it easy. If I'm lucky, I'll be no worse than sore tomorrow.

Could be worse, I guess. Had I been 80, that would have been a broken hip. 'Course, had I been 80, I would have had enough sense not to try to take the damned thing out of the back of the truck by myself.

The changes I'm undergoing, on this M.S. road, I'm still dealing with.

Maybe I'd better start dealing with them better.

I've always said, when life wants to teach you a lesson, it taps you gently on the shoulder. Then roughly. Then it hits you in the back of the head. Best you should learn the lesson it wants to teach you before it escalates to "18-wheeler."

Well, life just tried to teach me a lesson by knocking me to the ground and pinning me under an equipment rack.

Probably, I should listen, huh? Lord knows I don't want to experience the next attempt to get my attention.

Normal = triumph?

2011-07-01T20:01:00.000-07:00

Oh my, what a day.

I thought I wasn't going to be able to get out of bed. I awoke around 8:30, feeling horribly sleep deprived/jet lagged. I stayed in bed at least an hour, trying (unsuccessfully) to get back to sleep and maybe recover enough to do anything.

I have no idea how, but I got up, drove myself to the high school where I work to pick up some stuff, ran into a colleague, drove both of us (I drove!) to a local Vietnamese restaurant where I ate an entire sandwich and a side-order of fries—much more than I usually eat, lunch, dinner, or any time. Didn't order it, but found out they had ginger rice pudding that was non-dairy (that's definitely on my list for later).

Drove us to the office-supply store to pick up some stuff, drove him back to the school, drove myself to two banks to clear some business, then drove myself to a pharmacy to pick up some stuff, then drove myself to Trader Joe's—well, it was on the way home, I'd have to drive right past it, I figured I might as well. Got my wife a yellow rose to adorn her work desk.

When I got home... I could barely walk. I can still barely walk. It's not so much that my muscles are tired, although they certainly are, but it feels more like my nerves are tired.

I have no idea how, or why, I was able to accomplish so much out in the world. But I did.

This whole walking thing... I don't like it, any more, I get really tired, really easily. I could, I suppose, move to full-on wheelchair-bound, but I'm positive that'd be even more inconvenient than being walker-bound, so I keep walking.

But I did a whole lot of walking today. But, somehow, I don't feel anything. Not "Hooray! I did it!" Not "Man, that was expensive. I don't know whether I want to do that again." It just... happened. I noticed the difficulty, I certainly noticed the cost. But I felt nothing. No triumph. No nothing.

Even when I was non-walkerbound, I would have felt at least a little "Well! I sure got a lot done today, didn't I?" elation. Now... nothing.

Was it because... in my pre-M.S. life, it would have been... normal? Unremarkable?

But it was remarkable. And I remark nothing.

I did get myself something to celebrate... a tiny treat, just because. Instead of indulging myself tonight, I think I'll just drink a lot of water; being able to walk to the water cooler is enough of a triumph, and enough of a celebration.

That I can still walk to the water cooler, even after walking so much that I can barely walk at all.

And that, I suppose, is enough of a triumph.

The Matrix (really!)

2011-06-30T12:02:00.000-07:00

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.

Deal with the choice

2011-06-28T21:23:00.000-07:00

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.

Wind, the desert; love

2011-06-26T10:52:00.000-07:00

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.?

A challenge ... ?

2011-06-24T17:04:00.000-07:00

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.

Clouding the waters

2011-06-20T21:12:00.001-07:00

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.

Today, the answer would be...

2011-06-18T19:14:00.000-07:00

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.