Monday, January 30, 2012

Changes; sensitivity

Things change.

We should know that, we M.S.ers, considering how many of them we've experienced; but all sorts of reminders come at us from so many directions.

This weekend, I did a huge load of dishes. Probably did a little too much standing-at-one-"standing," as it were, but that definitely fell into the category of "dammit, I'm doing these dishes. All of them."

And I did. And that was good. And that, the completion of the dishes, was something I hadn't been able to do for a few days. And I did it. And that was a change; a wonderful change.

After work today, I went shopping. Came home, made dinner, and did the dishes (not a lot of them, but still—I did them). Success with all three. It has been a while...that was a change. A very nice change.

I saw some Organizational Stuff go down today in some organization I'm familiar with (name withheld because it really doesn't matter in this context). I didn't like it. But somehow, as much as I heard my ego chattering about how outraged I was, I actually heard my heart talking to me, and somehow, it cut through the chatter and I actually heard it say: This one, is not yours. Let it change. Others will care for it. It's not yours.

Sensitivity. We M.S.ers, we're very, very sensitive. Sometimes it hurts; sometimes, it lets us hear the Inner Voice; something we should have been listening to for a long time.

Comes free with your wheelchair. Interesting "disease."

Saturday, January 28, 2012

The Cave

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.

Friday, January 27, 2012


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?

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?

Tuesday, January 24, 2012

Bicycle metaphors

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.

Sunday, January 22, 2012

Endings create... ...

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. ...

Saturday, January 21, 2012

"Sick" (in quotes)

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.

Friday, January 20, 2012


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:


Wednesday, January 18, 2012


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.?

Tuesday, January 17, 2012

House hunting

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?

Monday, January 16, 2012


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, or we're lost.

Saturday, January 14, 2012


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.


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.


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?

Friday, January 13, 2012


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."

Tuesday, January 10, 2012

My turn now

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.

Monday, January 9, 2012

Attention getters

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...

Saturday, January 7, 2012


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?

Wednesday, January 4, 2012


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.

Tuesday, January 3, 2012

First prescription of the new year

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?"