Wednesday, March 28, 2012

Time to listen

I think I'm getting a message from several directions. The same message; clearly the same, and clearly clear, if one can say such things.

And the message is... back off. Time for me to back off. Stop pushing so hard; back off, and recover. And listen, because I'm currently making too much noise, and drowning out the silence that I need to embrace.

Today, I went out into the world to get my glasses adjusted, take some rings into the jeweler for repair, and get some tea and lunch from one of our favorite tea-and-lunch places. Just walking from place to place on my walker took way too much effort and a disturbing amount of time. And the effort I spent, just walking from truck to destination and back to truck, nearly did me in.

I spent a few minutes in the garage looking for something... and my legs, on which I had clearly been standing too long, started vibrating, out of my control; and I started getting worried that I wasn't going to be able simply to make it back into the house. I did make it back into the house without having to call for help, I even (somehow) managed to replace/restack the bins I took down in my search for whatever-it-was. But it was way, way too close to "couldn't make it," and sometimes nearly teetering over the edge of "not going to make it," on every adventure today.

Am I "giving up?" No... I wouldn't put it that way. Some things yes, I've been clinging to them for way too long; but some things, no—some things make me healthier, make me feel better, even if they do suck me dry. Do I still want to improve my health? Of course! Do I still want to enjoy living? Hell yes!

But I need a quieter road. A calmer road. A less confrontational road, a less external road. I need to ... go inside. Cocooning, some life/creativity coaches call it.

I've written several posts before about lessons of kyudo, of having open hands, of offering freely and being completely open. A message I'm hearing from The Great Machine of the Universe is "Well then...You're still clutching. Really open your hands. Let go. Be open, and let 'it' in, whatever 'it' may be." But even louder, I hear... "Physician, heal thyself."

And if that's the only thing that's powerful enough to cut through the noise and make itself heard... time to listen, eh?

Tuesday, March 27, 2012

Sometimes doctors make you feel BETTER

What a wonderful day of receiving wonderful care!

Started the day at lunch with a friend of mine who has some experience in "coaching," to put his abilities into a single word. It took us both a while to help me figure out how/where to begin approaching the phase of life that it looks like I'm entering right now (actually... I probably should have entered it consciously and intentionally long before today, because I've definitely functionally entered into this particular phase long ago), but once we found the way to take The First Steps... It was simple; and it was beautiful. And, even better—it was right.

A very nice acupuncturing today. Some things hurt more than I'd hope for, some things hurt very interestingly (one needle I could feel resonating all the way down the meridian to the finger it ends on), and one point that usually hurts pretty bad, was for once, not that bad at all... and boy, what he used it for, felt great. The point's name is "The Palace of Weariness," and one of its uses is to be the place where you go to have your weariness healed. I've had this point a lot, in many contexts; but today, I really did feel my weariness being tended lovingly, in a palace that was indeed quite wonderful.

At the herbalist, I got another good report card: the amount of physiological "againstness" he's been tracking and treating, is actually being reduced, and it has reduced so much that he was able to spot another bit of lurking nastiness, and he can now begin treating that too. Today's formula has much in common with the Three Treasures formulas I used to so enjoy; unlike the more "corrective" Eight Principle school, Three Treasures formulas are only "tonifying;" one 3T herbalist described the goal of his school as "radiant health." And the herbs in the current formula are even reasonably regarded in the West, so it's a win-win, as far as I can tell. And no side effects! That's a trifecta, in my book. And many of them are specifically for soothing the spirit, which I can definitely use.

So, I still have M.S., and a bunch of body-stuff still works funny. But I got treated very wonderfully today, and I feel really good about both the present and the possibilities for the future.

All us M.S.ers should be so lucky—see a doctor, feel better when you leave the office, and no side effects.

What a wonderful day of receiving wonderful care!

Monday, March 26, 2012

Rain; transplanting; growth

This is the first thing I saw when I stuck my head out the back door to check today's weather:

Two things immediately leapt at me: First, I've never seen the tree this happy. I've been aquainted with this tree since 1985. A couple of years ago, I rescued it from where it had been living for so long, because its surroundings were being demolished and rebuilt. I popped it into a pail and stuck it in my back yard, where immediately it started radiating contentment. Where it had lived, for over a quarter of a century, was not the right place for it. Where it was, never truly nurtured it. But now, finally, it's happy—it loves living in a pot in my back yard, and it really, really, loved yesterday's rain. The weather that I found so debilitating was exactly what it needed. And today... I could feel it smiling.

The life lesson the tree is teaching us—and especially trying to teach me—is that being planted in a "nice spot," a spot that looks nice but doesn't nurture you, is the wrong spot. Doesn't matter how pleasant the planter looks; if where you're planted isn't nurturing you, why not move to somewhere that does? And, as you can tell from the picture, where it's living is hardly a luxurious botanical garden... but damn, it's really happy there. And that's what matters more, isn't it?

And another life lesson the tree is teaching us—especially us M.S.ers. You'll see at the top of the tree some dead branches... Last summer, the heat was absolutely brutal. The tree used to be taller; its leaves reaching beautifully up towards the sun. Those lovely high branches are, basically, dead. Its height is a thing of the past. The weather nearly killed the whole tree, but it definitely did in its upper branches.

And yet, it flourishes. In a completely new way. It was never "bushy," but now it is, and there's a different beauty in that. It even has a "guest" in its pot—of all things, an onion, a scallion we had tossed into its pot thinking that it would turn to fertilizer and instead it grew... it's nearly as tall as its neighbor the tree!

And what are its lessons? Rejoice in the rain. Grow the way that you can, and enjoy growing in new ways. The old tree? The tall one? It's gone—dead wood. Don't waste your time, attention, or energy on dead wood—but grow. The way that you can.

The Great Machine of the Universe—or our personal supernational gardeners, however you want to perceive it/him/her/them—have moved us to somewhere new. And put us out in the rain that we need, whether we know it or not.

Time to enjoy the rain. And grow.

Sunday, March 25, 2012

Rain, cold, Wood, and truth

Finally, it's raining in Southern California. Interesting, the diversity of my reactions to this weather.

I find the sound of the rain, and the gentleness of the environment very soothing. Wonderfully comforting.

The cold isn't penetrating like winter cold can sometimes be, but somehow it has penetrated... really penetrated. The house isn't in the least cold... but I sure am. And I find myself completely out of energy. It took way, way more determination than I had anticipated (or wanted to expend) just to do this amount of typing. I need to do a hymn arrangement for Easter, and for this particular hymn it's going to be really really really easy, I probably have a version already written that I can cannibalize/adapt, and I really enjoy doing this sort of thing.

And I all want to do is lie in bed. And even there, underneath a doubled-over comforter and a blanket, I'm still cold.

My plants love the rain. All the plants in the greater LA area love the rain. And there's a lot about the rain that I myself love, and always have. But somehow, this weather is just shutting me down. This is something new for me... I've always been sensitive to the "spirit of the weather," to the quality of energy of the world, but somehow that sensitivity has been amplified and I'm finding it almost... oppressive.

Oppressive because it, like the M.S., is forcing me to respect what my body needs and the energy of the season and the world, and to live in harmony with that world—whether my "lifestyle" finds it convenient or not.

In Connecticut, I used to joke about singing "I'm dreaming of a white... East-er!" It would often snow during Holy Week, it sometimes would even snow on Easter Sunday. I guess LA isn't southerly enough to already be in "true spring," even though I do feel the Wood element starting to show itself. Not as much as I'd like, I guess.

Still... I'm getting messages from all sorts of sources that I need to "back off," and give some more respect to the state that I'm in, rather than the state I imagine myself (or wish myself) to be in.

Respect for truth. A valuable gift of M.S.... one that the wise will welcome and receive with open hands. Because you're gonna respect the truth eventually, oh yes... best one should greet it with love, before it greets you with a hammer.

Which, my friends, let me tell you... it will.

Thursday, March 22, 2012

Hard and easy

Beautiful, beautiful writing by Judy at Peace Be With You, today.

MS is life is MS is life. The challenges are different; yet they are exactly the same. Because to meet them, we need precisely the same skills...

Openness. Forgiveness. Patience. Compassion. And truthfulness... Especially with, and towards, ourselves.

Given what life throws at us anyway... standing up? Walking without the walker, the cane, or the wheelchair?

That's easy. That's nothing.

But living... ah, living. Being truthful with yourself. Accepting the things that are set before you on the path of life, no matter what they may be. The triumphs, and the tragedies; the things you definitely deserve, that you have clearly earned (both reward and punishment); and the things that you definitely did not earn but that you "get to"—have to—deal with anyway.

That's hard.

Tuesday, March 20, 2012

Another symptom

My doctor has some cool "toe shoes" that he got from REI. He loves them.

He says, though, that he seems to get his toes caught on things. Before, in "normal" shoes, his feet would just bump into things. He does that a lot more than he used to, he says. And not only do his feet bump into things more often, but with his disco "toe shoes," he catches things with his toes.

And so do I. Even without toe shoes.

So does his yoga teacher, Eric. Yes, that Eric—Eric Small. Eric tells him that his feet bump into things a lot more than they used to.

My doctor's take on this:

"I guess it's one of our symptoms."

Bladder problems are our symptom. Fatigue is our symptom. Problems with concentration and memory, spasticity, inability to do all sorts of things we used to take for granted... they're all our symptoms.

And so, apparently, is getting your toes—especially while you're wearing your disco REI toe shoes—caught on things.

Never let it be said that the M.S. journey doesn't come with a laugh. Here and there, when you suspect it least but need it most... Because laughter at ourselves is one of the best gifts of M.S.

Monday, March 19, 2012

Quite a surprise

Had "quite the talk" with someone, today. A difficult talk. Details aren't important for our discussion here and now, but it was definitely quite the experience.

I met the experience with a great deal of calm. I really don't think it was denial, masquerading as detachment; I think it was really and truly calmness.

And there was no "againstness." No striving against, or with, anything.

I'm watching my own process now—ah, the increased sensitivity we M.S.ers get... hypersensitivity is a mixed blessing—and I know I took some sort of effect from the event; but I think (and I hope) that what I felt was just "dealing with stuff that needed to be dealt with." One of those "The truth might hurt, but it's not unkind, and there's nothing personal—it's just the truth" kinda things.

We are constantly asked to face our own neurologically-imposed limitations. But facing the failure of the body, "the way of all flesh," is the road that all the living have to walk. And today, again, I'm brought into confrontation with my own limitations but also the limitations of others, about which I have as much control as I do over my myelin-eating immune system.

And my reaction was not protestation, but ... acceptance. The truth that was in what was said to me in this interesting experience... I even said, in precisely these words, "I accept that." I didn't agree with everything that was expressed by everyone, and I didn't contest the things with which I disagreed or could have found ground upon which to base a protest; but the things that were true... I accepted.

Wow. This M.S. journey is an amazing one, in many amazing and surprising ways. And to havea "side-effect" of my journey with M.S. make an appearance in just plain life is...

Quite a surprise.

Saturday, March 17, 2012

Wet and wonderful (and Super Chicken's warning)

A wet day in southern California, the place where, according to the song, it never rains. Fortunately, occasionally (but sadly, too occasionally), it does indeed rain.

I stuck my head out the back door this morning, during one of the brief moments of no rainfall. I was greeted by a gust of very happy, very fresh air—the sort of glorious breeze that graces L.A. all too rarely but brought back many memories of springtime glory in Connecticut, a state that actually has real seasons. And a most beautiful sight: my red-leafed Japanese maple, which had been sorely taxed by last summer's brutal heat, was simply exuding happiness at being watered by the sky. It was always happy to be watered, but plants really like the water that the sky provides them better than the stuff that comes out of the hose, functional and wet though it be.

I crave that sort of marvelous, miraculous "instant renewal," like the one my Japanese maple is very clearly enjoying. It doesn't just look happy—you can feel its happiness at the current weather. The wonderful spring-fresh moist air is indeed bounteous, but the temperature is way too low for me; I'm not just heat sensitive, as many of us M.S.ers are—and heat-sensitive, I definitely am—, I'm also cold sensitive. Which means that I get very cold very quickly, and the low temperature makes walking even more difficult than it normally is.

I'm sure there's something philosophical here—enjoy the renewal that the air offers, pay the price of the temperature but it's worth it, enjoy that fresh air, enjoy the dawning of spring! But damn I'm cold.

I spent seven years in Connecticut, in a city on the Atlantic coast. I remember how happy we'd be when it warmed up enough to snow (below 28F, you don't get snow, you get ice). I think of my friends in Chicago, and here I am complaining about 50-something as "cold." Time was, that'd be T-shirt weather, because only a month or so previously, it'd have been half that temperature.

Well, that's life with M.S. for you. The good part about it is that you become way more sensitive to your body. The bad part about it is that you become way more sensitive to your body. Then again, the Taoists warned us about that, too; the original meaning of yin and yang are, respectively, the dark side of the mountain and the bright side of the mountain. The two sides of the same mountain: Darkness and light are inseparable; can't have one without the other.

A life of increased awareness is definitely a gift of M.S. What that awareness brings into your consciousness... well, that's another matter; and really, what we face is as much "human condition" as disease process. Even if a cure for M.S. someday appears in a bubble like the Blue Fairy, ain't nothing for us to do about the human condition.

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

Wednesday, March 14, 2012

This week's prescriptions

Interesting prescriptions, this week. Non-pharmaceutical prescriptions... at least, not the pharmaceuticals that other people manufacture.

First: get more sun. Carefully--as doc said, "I want you to get sun, not skin cancer." And here's the good part: Go outside in the backyard, and lie in the sun, nude. And, with all my being... put all my attention, and intention, into soaking up that glorious sun.

"Can I wait until it gets warmer?" I ask.

Fortunately, he says yes.

He talks about vitamin D; one of the only things, he says, that we're sure actually helps people with M.S. But not vitamin D that you take; but the vitamin D you create for yourself--such as from the sun, for example, while lying nude in the back yard.

He also talks about This New Drug that's under study, entering phase 2. Seems to show promise, except that everyone who takes it becomes constantly nauseated. Yeah, we're not gonna go down that road. But the central component of it (I forget the scientific name) is actually something that's found in all sorts of stuff already--minus the extra methyl groups and other whatnot that cause perpetual nausea. But that whatever-it-is can be found in mushrooms without gills, such as morels; he also thought it was in porcini, even though that one does have gills.

So, I went mushroom shopping. No morels (right now, at least), but I did find the porcini, so that went into tonight's fritatta.

And tomorrow, weather permitting, I may be able to take off my jacket (just my jacket, don't worry) and soak up at least a little sun.

Generate vitamin D. Eat yummy mushrooms that have good-for-you chemicals. No nausea.

These prescriptions... I'll take!

Monday, March 12, 2012

That was interesting

A first. Well, thankfully, almost a first. Not quite a first. I've only fallen over once in public (quite spectacularly, but thankfully only once). I've never yet fallen over in the grocery store. Yet. But today...

I'm in the grocery store, about to get into one of those motorized "convenience carts" that some stores provide for folks like us. My left leg gave out on me (as it does more frequently than I like), but because there was one of those thick rubber mats (the kind the folks working the registers stand on) underneath one of my feet—it had been left, at an odd angle, almost underneath the convenience cart—it meant that I was standing on something not quite level, and having one leg go out while standing on a not-quite-level surface nearly sent me flying. Fortunately, I grabbed the cart in time (nearly pulling it along with me as I was falling) and managed to find some footing; so I didn't hit the ground, or my head, or anything.

But here's the cool part. The interesting part.

My reaction was not fear. Or panic. Or anger. Yeah, some adrenaline, of course, but when the stumbling/grabbing for support was over, all I was left with was ...

"Well, that was interesting."

Then a moment later, I thought, "That was nearly very interesting. Good thing it wasn't."

Most, if not all, of my reactions to neurological-short-circuit malfunctions have been quite dispassionate. "Oh well..." or "Huh." or "Well, I guess that ain't working." I don't get mad. I don't lash out—at anything. My nerves, the universe, God... anything.

Sometimes, I know it's denial. Sometimes... I think I actually just don't care. Wish it (whatever the "it" is) would stop malfunctioning? Wish it'd work the way it's supposed to? Actually, not even that. I just say... "Huh." Or at most, "That was interesting."

Is this calmness a gift of M.S.? Or am I missing something? Am I supposed to react differently? I don't think I'm supposed to get mad all the time, especially given the number of times I "trip over" (whether I trip physically or metaphorically) a neurological malfunction.

I don't know... But:

It is interesting.

Saturday, March 10, 2012

Is that EVER comedy!

Many adventures, this week.

First, in the comedy-you-can't-write category: The common parlance for bladder demands is "urgency." My current experience of it is "run around in circles, screaming in a jump-out-a-window, abandon-the-collapsing-WTC-style 'panic' " rather than mere "urgency." But when its demands are met, it does not respond with much enthusiasm. Earlier this week, I had to pull off the freeway to use my handy-dandy Starbucks cups (which I keep under my seat for just such emergencies), but what B-san provided when given the opportunity to, as Shakespeare said, "vent his folly," I would hardly describe as "enthusiastic." Certainly not "voluminous," or even "much."

Other adventures: I'm the "calling stage manager" for the Big Musical at the high school at which I work. I tell the spotlight operators what to do, I tell the light-board operator when to hit the "go" button to make the board move to the next cue. I also assist the sound mixer by as-needed-adjusting one slider (thank goodness, only one) to correct the in-the-mix balance on one particular instrument. There have been a few moments when I felt my attention slipping away from the show and task, but only I and the Almighty noticed--no missed cues! The performers are stellar, and their performances in the "magic moments" I purposefully created in the lighting design are astounding. But keeping that razor's edge of attention for two-plus-hours, with only an occasional break, is more draining than it used to be. Then again, it could be just age, rather than The Disease; but, how is that reassuring?

I suppose that last question also fits in the "comedy you can't write" category...

And I'm also seeking comedy... Usually, it finds me, but at my workplace, there's some stuff going on (details aren't important to this narrative) that is currently firing all my "resentment" axons. It's interesting that I can laugh at my "M.S.-inspired" physical changes, but at things caused by other humans in my work environment, I get angry. I can find the comedy in my own neurological nonsense, but the actions of others piss me off. Majorly.

I don't need to find the people funny. I don't need to find their actions funny. I need to find the situation funny. Even more, I need to find me funny. Because when I can laugh at myself, at my own silliness within the context of the world, the same way I laugh at what has been caused by my own nervous system... I'll be free.

Laughing at yourself is definitely one of the gifts of M.S. It is for me, at least... and I really, really, really, need to avail myself of it.

I need more of what having M.S. has given me: laughing at my own silliness.

How often is it, that we ask for MORE of what M.S. has done for us?

Now, that's comedy!

Tuesday, March 6, 2012

The hardest gift

Lots of work at the school, as we're coming up to the home stretch to Opening Night for the Big Musical: It all comes down to this Thursday.

Took the Long Road to the weekly acupuncture/MD session. When freeways are actually "free," it's a little more than a half-hour's drive. Since the freeways are rarely free, it can take over an hour. Today, the freeway was most merciful: about 45 minutes. And as always, surprisingly fun and comfortable with the hand controls.

A good treatment: no really painful points, and quite poetic names; one of them, Stone Cold Abyss, sounds bad but is actually what you get when you're trying to get out of a cold abyss. And cold, I've definitely been. Very cold; I'm running two or three degrees below the ideal 98.6.

Stopped at the lighting-rental shop on the way to rehearsal, to pick up some gels. Had a wonderful time being a lighting nerd, talking about precisely which lavender was ideal for the application I wanted to put it to.

B-san (my bladder) has been both temperamental and merciful. On my way back from the doctor and the lighting shop, I had to pull over several times to use my handy-dandy Starbucks cup. I have no idea where all this excess liquid was coming from; back when I still had foot controls and could have free hands, I used to drink liters of water while driving but never had to stop that often. Now, so I can (with luck) avoid B-san's demands for relief, I assiduously do not drink for quite a while before driving, and make "paranoia stops" at the bathroom before starting any journey. Apparently, today, that didn't work. Fortunately, I was able to make it through each act of the show with only a planned bathroom break at intermission. I hope that good behavior continues... I really don't want to have to abandon the show to avoid leaking into my pants; the student who's sitting next to me at the board is good enough, she could probably keep the show going, but that's not the point. And if B-san's "kindness when it really counts" continues... life will be good.
I've felt very unhelpful for the mounting of this show... I can barely do anything besides advise, design, offer reassurance to students who need it, and call cues. None of those are inconsequential or unimportant... but I used to do so much more. Fortunately, others have been able to take up most of the slack, but it hurts when stuff doesn't get done in the right way or at the right time, and if I weren't M.S.-ified, I'd have done it myself.

Still haven't really said "goodbye" to everything that I used to do. And, I have to be honest with you: I very nearly typed "to everything that I once was" rather than "to everything that I used to do."

This is definitely one of the hardest gifts of M.S. The lesson: you need to let go, when you need to let go. To really let go. To fully let go. Because if you're stuck to it... life is really no fun.

No fun at all.

Friday, March 2, 2012


A bittersweet day, today.

We're gearing up for the Spring Musical: 42nd Street. It's really going to be quite a stellar production. I'm predicting that, as soon as the curtain opens, parents will start weeping (for the right reasons), or lose control of their bodily functions, or spontaneously combust. Or all three, simultaneously. It's that good.

The lighting-rental company delivered the lights we're going to hang tomorrow. The drummer arrived and delivered his set. The pit is set up. The microphones are getting picked up. The set's not quite complete, but they promise us that it'll be done in time for the show's opening this Thursday. I saw part of today's run-through, and the kids are wonderful.

That's the sweet part. And it's very sweet.

But what's bitter about it? There's so much stuff going on that I used to do. Much of it with one (usually, only one) student helping me, occasionally with a few parents helping, but basically, I did it all myself.

For Ghosts, I built a kitchen in the black-box theater. For Antigone, I built something akin to "Devil's Post Pile," with hexagonal columns. For Damn Yankees, I built a stadium. Stage-filling set after stage-filling set. I did between 80 and 100% of the building and painting. By myself.

Sometimes while the show was in progress, I had to slip out the back of the house, run around the building, up a flight of stairs, and then do something backstage. Sometimes to shoot a gun; sometimes to throw a circuit breaker; sometimes to repair a wireless body-microphone.

And now... nothing. I can still program the light board (all it requires is imagination and button pushing), I can design the set and the lighting plot (requires imagination and some drawing skills, sometimes "arts and crafts" cutting up paper), but all the stuff I used to do... It's gone.

I honestly don't know precisely what I feel about it. I vacillate between "To everything there is a season" trite pseudo-acceptance, happiness that finally the kids are involved enough to be doing some of the work, the usual "Pshaw! If I were doing this, it'd be done right!" that arises any time the torch (or should I say, "tool-belt") is passed to another pair of hands. But sadness? Is it there, and I'm just not facing it?

I'm seeing a lot of "things are changing" going on; some of it caused by my physical changes, some of it caused by other sources that have nothing to do with me. There's a lot of "facing saying goodbye" that needs to be going on, and a lot of not facing the facing of saying goodbye.

One would hope that this "acceptance" thing, especially "acceptance of loss," would get easier. I keep having to do it...

Maybe if I actually did it, it would get easier.

I wonder if this is another gift... Perhaps it is this message:

Mean it when you grieve. Because nothing is going to change until you do.

Why is facing yourself, and being truthful with and about yourself, so hard? I suppose that really, it's easy... I just choose to make it hard. Easy to do... Uncomfortable? Hell yes. But easy? Truth is truth; it's going to stay "truth" whether I face it or not. It takes as much energy to deny it as accept it. And yet, I work very, very hard not looking at it, and telling the truth about what it is and what I feel.

Again, the message is clear: Time to change.