Trust

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...

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

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)

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

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"

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

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

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

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...

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

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

... 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?