Saturday, June 30, 2012

The truck, the tea shop, and the gas station

I have been blessed with time away from work, away from... everything.

I have been spending it doing... nothing.

And that's not "nothing" as in "sit around and enjoy myself," that's "nothing" as in "really nothing."

Except, unfortunately, wandering in and out of depression. Sleeping. Not wanting to do anything, including the amount of "work" that blogging this for you is requiring. And occasional acute nearly-break-down-in-tears sadness, triggered by... I have no idea what.

Yes, apparently a former student of mine, much beloved by the entire high-school community, just kind of upped and died, last week. She had been fighting some especially nasty disease for years, and finally... it won the fight. A great shock to everyone. And also, a college classmate of mine apparently has just killed himself. An even bigger shock to everyone. I will really miss him; if anyone typified "a friend in need is a friend indeed," it was Tim.

Am I "over" the loss of my friends, yet? Especially Tim's choice to end it all, after joining us for our reunion last May... perhaps not to reconnect with us, but to say goodbye, to his friends and classmates? Oh no. But those horrible shocks aren't what's "depressing" me. I'm just... depressed. And I've been "depressed," for a while, even before my friends left us. It's been a while, I haven't been willing to cop to "being depressed," but there's no escaping it. I've got to tell the truth: I'm depressed.

I don't have the strength to do anything. I did one HUGE thing today, I drove fifteen minutes under zero-traffic conditions to the Taiwanese tea shop, got lunch and tea, came home. Ate the lunch, lay down, went to sleep. Sort of. For a while. Then, spent the rest of the day, sort-of kinda staring at the TV. Now, having been a "stare at the TV and thus avoid real life" expert for most of my life, I know exactly what that's all about. But that wasn't it.

Somewhere, I've misplaced some software. Imagine a seven-CD-high stack of CDs, this software is in a case that's only about that big. I remember holding it as I withdrew it from the closet where it has been stored, untouched, for years... but I don't remember putting it down. Anywhere. I did try to look for it, around the house today, but even that was too much effort. It's really upsetting me, it's hurting me, not being able to find that. Is that why I'm crying? I don't think so, but is it part of what's up? Or "down," as the case may be? I don't know.

I really hope I have enough strength to make it to church tomorrow (it is, after all, my job, they're counting on me), and it's very possible that I'll go to lunch afterwards with a friend in the choir. We didn't really nail down the day, but we talked about it. I may need to ask him to push me in my walker/wheelchair, because I don't know if I'll have enough strength to do it myself. We'll see. Hanging with a friend does me good... with luck, that good will last longer than lunch. Because last time I had a wonderful wonderful time with a friend, it lasted maybe a couple of hours, and then... it was as though it never happened. Depressed again.. all too quickly.

Then again, there's this... today, as I was about to pull into the tea-shop's parking lot, I looked at my gas gauge. Oh my God, I thought, I'm all but out of gas. I could very well have run out of gas and never known how or why... and in just a couple of minutes, all I'll have left are fumes and hopes.

And then, I happened—happened—to look out the right-hand window, and I was right in front of a gas station, right in front of the entrance ramp to the gas station, and there wasn't a soul at any of the pumps... and the price was really, really, low. Delightfully low. Pulled in and seconds later, problem was solved.

The Universe gives you what you need: That's the lesson for today, courtesy my truck, the tea shop, and the gas station.

There is something hidden in that, begging me to embrace it. I know there is.

And that... is a challenge.

Friday, June 29, 2012


Healing moments, the like of which can never be provided by any medical practitioner, of any school; moments that were profoundly healing.

Yesterday was a Bad Day. I was nasty fatigued. I spent a bit of time at a music-technology store, the fellow I worked with there was very nice, it was very easy to get to and around in. On the way home, I stopped off at a hardware store to look for a something-or-other that had broken. When I got home, I was in bad shape. Bad shape. Not just fatigued, but wicked nasty fatigued. My wife took us out to tea at one of our favorite Taiwanese tea places, and the tea there usually at least partially rejuvenates me; but this time. it barely did. I must confess to being not at all fun to be around until the tea arrived; fortunately I got more sociable with a little sugared tea, but I still felt nasty fatigued.

A friend of mine came by later, took me off to dinner at a favorite Pasadena sushi bar. I was so badly fatigued I nearly called him and told him not to bother, but since nowadays he's horribly hard to schedule, I was afraid this would turn out to be my only chance to see him all summer.

Dinner with him was probably the best thing I could have done for myself.

We had a wonderful time. We talked about some acting/drama stuff I've been working on for my friends in the magic community, we raised our glasses to toast some friends no longer with us (as JMS wrote in Babylon 5, "Here's to absent friends... in memory burning bright."), he was very kind to put up with a couple of soul-unburdening moments (which, I hasten to add, I took great care to insure for both our sakes were soul-unburdening moments), and we laughed as we reminisced over past knocked-it-out-of-the-park dramatic triumphs, where he had been the director and I had been the scenic/lighting/sound designer.

I got home later than I usually do, the few times that I leave the house at night nowadays, and I felt not tired, but great. Great!

And I realized that this, my friends, this is what we need, not just as the M.S. community, but as humans... it's not just "healthy," it's soul-restoring:

The sangha.

Tibetan Buddhists begin many of their rituals by saying "I take refuge in the Buddha; I take refuge in the dharma; I take refuge in the sangha." The sangha is the spiritual community; we Westerners might be quick to call it the "community of the faithful," a very "kind-of" analog is the "communion of saints" of the Christian creeds; but since the Buddhists don't really have "faith" in things as the Westerners would see it, that's the wrong translation. There are many discussions about what precisely comprises the Buddhist sangha, but at the bottom line, it's the community of your spiritual fellows, who are with you on The Path.

When I am physically in communion with my sangha, my soul simply resonates. It is, in a word, bliss. It is Where I'm Supposed To Be, with the People I'm Supposed To Be With. When I'm in the presence of my sangha, it is Ram Dass's "be here now" brought to its fullest.

So, that's my prescription for me: Do whatever I can to find, and be fully present with, my sangha.

And that's my prescription for you, my fellow travelers on the M.S. Highway: Find your sangha, and take refuge with, and in, them.

You'll know immediately when you've found them. Because when you do, you'll find healing. Myelin, they may not be able to help with. But your soul?

As Walter Raleigh is thought to have said, "What matter which way the head lies, if the heart be right?"

Tuesday, June 26, 2012

Better. Maybe. We'll see.

Quite the day at the various caregivers. I told the acupuncturist that I had been very fatigued last week; among other points, he gave me one with the rather scary name "The Great Hammer."

As I think I mentioned earlier, I had a baby tooth removed last week, which (among other reasons for its removal) had a mercury-amalgam filling that had definitely run the race and needed to be removed, regardless of the needing-to-be-removed of the tooth itself (which definitely, needed to be removed anyway). My herbalist was very happy at that, because the mercury in that poor little tooth had been effectively "leaking" into my system, and exacerbating/worsening some of my neurological difficulties. He also created a new formula, which this time includes ho shou wu; which, among its traditional uses, also helps rebuild the nervous system. Definitely nice to be in the "rebuilding" phase of the herbal work.

He's also having me take magnesium citrate. One must be careful with it; if you chug too much too quickly, you'll experience... oh, let's call it, "a perfect storm," bowel-movement-wise. Not pleasant, I don't recommend it if you can avoid it. But I've also taken it in smaller, non-flood-causing amounts, and it has definitely made me feel better. Clearer. Stronger. And for those effects—in small, careful, conservative amounts—I heartily recommend it. No side effects— if you don't take too much, of course... watch out for that flood-causing dosage!

I'm hoping the next few days will find me awake, alert, and creating things.

We'll see what happens.

Which is what we do every day, is it not?

Saturday, June 23, 2012

Attacks (?); click! ... and portents

Well, let's see... the usual challenges imposed by bad wiring connecting to everything below the waist. "Non-cooperation," let's call its relationship to my preferences/convenience.

Fatigue "attacks" (I guess I need to call them, because of their sudden and unannounced onset) have been very nasty. Pretty much the only "attacks," as such, that I've ever had... Everything's going well, and then! Must go to bed. I really, really, need to be in bed. Not "resting," not "taking it easy"... I need to be in bed. Sometimes, just lying down a few minutes will do the trick. Sometimes, napping a few minutes will do the trick. Sometimes, napping the rest of the day is the only thing that will do the trick. Then, of course, there's the expected trade-off/consequence of "not sleeping through the night," but that has been coming and going for months. Years, really...

And, another "attack," of sorts... depression. Things will be going just fine, then click! Depressed. Nasty depressed. Not "set off" by something, and not caused by acupuncture-curable energetic malfunctions—those, I'm really familiar with, I know way too much about how they feel when they hit, and that's not what's causing the depression. Grief, caused by disconnection from my old job, perhaps? Which, I think (I know), I still haven't fully processed. And need to process. But another unwelcome "attack."

New challenges being imposed by eyes not pointing in the same direction, all the time. Yesterday, it was quite bad... I kept tugging down one side of my glasses, to pull one lens slightly out of adjustment so that its "misaligned" image was perceived, in concert with the "aligned" image, to create a proper binocular composite.

Fortunately, I never really pulled the glasses out of adjustment, because this morning, my eyes are cooperating just fine with each other and I'm seeing as close to "normally" as I see. Well, normal for me, at least.

Some good news... I have several disability-insurance packages, one from the state, one from my former workplace, one that I've been paying for on my own for over a decade (just in case something like... now... ever were to happen). The first of them has gone through, which I hope will portend well for the others... which I hope will portend well for the whole disability/unemployment thing.

Considering that my elimination systems are misbehaving, my memory is nasty flaky in the oddest ways, I'm having "attacks" of fatigue and grief/depression, all of which are making it abundantly clear that me and "normal, full-time, employment" are clearly not meant for each other's company, at least for the foreseeable future ... Anything portending well is very, very welcome.

Wednesday, June 20, 2012

Click! Mu!

Man, it was... just like turning a switch.

This morning, I got up a little early (because of the sun) and stayed in bed a little late (because I wanted to), but felt great.

Started writing some concert-band music. Felt great.

Went to the oculist to turn in my new glasses prescription. Treated myself to new frames. Got the current specs adjusted... it vaguely helped, and also didn't. Something new has gone wrong with my eyes—thank heavens, not optic neuritis, or anything large-scale like that, but both eyes don't point precisely at the same thing, any more. Happens all the time, they tell me, gets corrected very easily (also all the time), and this off-axis misalignment is especially sensitive to fatigue: if you're tired, it gets worse, if you're not tired, it gets better. Not clear whether it's an M.S. thing or an "age" thing, but not that its cause matters in the least—it's happening and that's that. Oh well. The new prescription will address this (as best it can). My current computer glasses address it, very ably and very comfortably.

But anyway, visiting the oculist was easy and even fun. Then I visited an herb shop with a friend of mine, and we picked up our prescriptions. We had a fun chat with the folks in the shop and with each other (this guy and I have known each other for at least a couple of decades, now, we always have fun together). He had a full day so he had to excuse himself, and I took myself home. Had an egg salad sandwich my wife had made (I always love those). A very nice day. Very easy to accomplish everything.

At some point this afternoon, maybe 2:30? 3:00? something like that... it was like a switch went click! and then, I couldn't do anything. I made myself some tea, that was about all I was good for... I was actually at the point of heading out the door to get my hair cut, and I didn't even make it to the front door... I just gave up, turned around, and sat down. Typing this for you folks was about all I've been able to do. I have no idea what I'm going to have for dinner, it's gonna have to be something, but unless suddenly everything becomes better, it ain't gonna be much.

Is it going to be better tonight? Dunno. Am I going to make it out of the house to get anything? Dunno. Will I be able to write anything, to think about anything, to do... anything that's at all productive? Dunno.

Did "something happen to cause this"? Dunno. If it did, I'd sure like to know what it was, so I could do the polar opposite and make everything go click! back to happy and productive.

Disabled, physically, is one thing. Floating intellectual/energetic disability that intrudes itself for no apparent reason, and then goes away, and then comes back, all for no apparent reason... that's hard. Is i...t The Disease? A new manifestation of... The Disease? Is it something else?


Cheeze louise, "sort of," one of my all-too-favorite descriptors of my state, is somehow much easier to live with than "dunno." I suppose there's something Zen in that too... that maybe the lesson is (as Ram Dass was very famous for saying) just to "be here now." Here is where you are, now is when you are. Just be here now.

Is that the lesson?


Does it matter, if it is, or isn't?

This, at least, I do know. And, in a word, the answer is... no.

Or, to keep the Zen thing going:


Saturday, June 16, 2012

Who knows?

A new circadian cycle is encroaching itself upon me. File under "WTF is this about???"

It started earlier this year... I used to fall asleep during Friday afternoon anime club, even when a lot of things were blowing up on screen (even while sitting next to the subwoofer, which gets very enthusiastic during explosions). Right now, it's worse than it's ever been. Somewhere around 3:00PM... crash and burn, energy-wise. No thinking. No energy. No nothing. Stagger into the bedroom and start snoozing. Maybe. Eventually. On and off. Maybe. Makes driving home from the acupuncturist especially difficult, I'm too frequently still on the road during the "must sleep... now..." hours.

It's about 6PM now, and I'm (pretty much) awake again. Mostly. Well, at least enough to do this...

My MD/acupuncturist said at last week's appointment, "Schedule? What schedule? You don't have a schedule. Do what you need to do when you need to do it. Who cares whether you sleep all day and are awake all night... where do you have to be?" Good point... but still, WTF is this about???

Now, I've heard things about several European countries who have a centuries-old (if not millenia-old) "siesta" tradition, where the entire nation simply... stops and takes a nap. And then off they go, and have fun late into the night. Or do whatever. But... they nap. It's the Thing To Do.

Why I find this "strange," for me, I dunno. Maybe because it is strange for me... having spent decades digging in and working (or at least pretending to) straight through the day, and often straight through much of the night as well. But, apparently, that's not in the cards for me at the moment.

Well, I'm sure it'll change. Or won't. Who knows? Gee, I have no choice but to pay more attention to what my body needs and give it what it needs, period... What's "wrong" with that? Still, when one has always lived the life of the overachiever... it's very, very different. Is that the Way It's Going To Be From Now On? Who knows?

Then again, let's be honest... we M.S.ers are very, very well acquainted with "who knows", aren't we?

Friday, June 15, 2012

Help with saying goodbye

Had the most pleasant--yes, PLEASANT!!--dental experience of my life earlier this week. The dentist was a nice guy, and he was a fantastic anesthetist. The most intense the injection process ever got was "I think I just felt something."

I had a baby tooth removed. Yes, a baby tooth; I never grew the permanent teeth that push out the baby teeth, where most people's second bicuspids are usually found.

I still have the tooth; I think I'm going to "plant" it in the garden, somewhere. It was very clear, from the ease with which he removed it and from the quite visible age of the childhood fillings in it, that it was time to say goodbye to this little friend, who had in his day done more than his share of the work, and survived more than his share of difficulties.

It was time to say goodbye.

It was OK; while I'd never met the dentist or his assistant before the procedure, we "clicked." He was more than just my doctor, he was my friend. And it was OK to say goodbye to something that had been with me for what, forty-five years? because it was time, and a friend was with me to help bid it farewell.

A couple of days before The Extraction, I did the final clean-out of my office at work. Yeah, to be absolutely finally really-and-truly-finally every-last-thing-accomplished done, there is something I'd still like to do there (move an office chair to someone in another office who really deserves a nice chair), and I still want to pick up the motorized wheelchair that the person who owns it is willing to bequeath to me. And I still need to do a ceremonial burning of my old business cards (but that I'll do at home). But I had no friend with me to ease the farewell; and, I must say, at least I agreed that it was time for my tooth to go, and though I do agree now that it was time for the job to go, at the time that the "going" was thrust upon me... I was not into it. At all.

Very different farewells; one of which was occasioned simply by age, one of which was occasioned by M.S.

And yet, how are they different? For each, "it was time" sums up the cause for the farewell. But for one, I had a friend at my side.

But more importantly... Most importantly... For one of them, I agreed that it was time. I took steps to cooperate with "it being time to say goodbye." I sought out someone who would help me say goodbye to my tooth. And the extraction process, from start to finish, was painless; and most important, painless in my heart, because a friend was helping me say goodbye.

I don't think any of us M.S.ers would ever say that we "picked the time to say goodbye" to what we lost; and the anodyne of blogging, the kindness of those who respond to our posts, or whatever "support people/groups" we may be able to call upon... When we say goodbye to that which we've held so close for so long: we're alone.

This shouldn't be a surprise to any of us; c.f. Buddhism's Four Noble Truths.

But what an interesting gift of M.S.: the inability to pretend those Noble Truths don't exist. Here. Now.

But then again, as Robot Chicken ended the episode "Kill Bunny"...

"You didn't think it was gonna be THAT easy!"

Tuesday, June 12, 2012

The question

Almost finished the Last Goodbye from the former workplace. Took the last big load of stuff out of my office... didn't have the strength to remove it from my truck, when I got home. Maybe tomorrow. We'll see.

One last software-documentation thing to do. One last trip to the place to look for tools... they're gonna do a once over in the workshop, I used to have a lot of tools that I just left there because I was the only one doing any work in said workshop, and the drama teacher understands that I'll be coming by during his Big Final Cleanup, to see what of my tools may still be there.

The motorized chair I've been using for a couple of years: its owner said I could keep, if I wanted it. I'll be removing it once I figure out whether there's a good-for-ME add-on for my truck, or whether it's just a matter of disassemble and fling it into the truck bed.

"It" is basically "over" now, but once those last three things are done... it's really, really, over.

Will I ever go back there? For any reason?

Dunno. And, fortunately, it's not a problem or a question I need to, or even care to, deal with. Now or ever. If they call me and I want to go, I will. If they don't, I won't. Done, and done. had an interesting article a few days ago, about how our culture doesn't really know how to say "goodbye."  We M.S.ers, we're forced to say goodbye more often, and to more intimate parts of our lives, than most people—and certainly, any of us—ever wanted to.

You'd think we'd get used to it. That we'd get better at it.

But do we?

Eh... Well... Sometimes. Sometimes not. Sometimes we're surprised that we have gotten better at it, and didn't even notice that we had. Sometimes we're surprised that we haven't, and didn't know until it was too close, too late, that we need to say goodbye again. And sometimes, alas... again, again.

This... this is the most horrible, most beautiful, most inescapable, most subtle, of the gifts of M.S...

Learning how to really say goodbye.

Because, as the Taoists told us millennia ago, and the Salon author succinctly concludes his article: We must leave in order to begin.

Ending creates beginning.

Therefore, if one of the gifts of M.S. is "ending," it must also be "beginning." Yin and Yang are the dark side and the light side of the same mountain. The end IS the beginning.

So, where will these beginnings take us?

That... is the question.

Monday, June 11, 2012

Green Lantern's light

Today, I have been discovering new flavors of exhaustion, it seems...

Day started off reasonably enough. Compiled a package of scores, CDs, sealed envelopes (composer contests like to hide the composer's name until the winning music has been chosen, so that choices are made by what they hear rather than who wrote it), and other stuff; printed it off at Kinko's, whose self-service copiers finally support printing from one's USB "data stick"; mailed it; picked up my dental x-rays, on loan, for another practitioner who's going to do Some Stuff on Wednesday (that I'm expecting to be weird and uncomfortable but with luck, not spirit-destroying). Picked up some new shoes at REI, which I think in time will turn out to be a good idea, but they're "just OK" at the moment.

The rest of the afternoon seemed easy enough: start at one end of the shopping plaza to pick up a new electric tea "kettle," go through the food court in the middle of the plaza to pick up lunch, final stop at the end of the plaza for wife and my favorite tea; and then drive home.

I'm not exactly sure where or when, but at some point... I hit the wall. Big time. Fortunately, only metaphorically, I stayed upright and under control at all times, but boy, did I hit the wall. And I feel like I've actually moved into the "suffering because of it" zone.

I think I may have started kissing the wall very early in the adventure, but I kept going (a) because I had been planning on Getting Those Things Done for days, and (b) dammit, I wasn't going to give up, I was going to get this stuff done [long string of expletives] dammit!

A very "Green Lantern"-esque moment... in one of the recent episodes, our GL hero was pummeled within an inch of his life, and one of the Guardians said "He doesn't have the strength... but does he have the will?" Well, that was me today, I definitely didn't have the strength; all I had was the will.

And somehow, it was only the will that helped me make it. Although, I gotta tell you, what I wouldn't have given to have one of those Green Lantern power rings...

Sunday, June 10, 2012

Side effects include...

This is definitely one of those "still reeling" from whatever-it-was days...

No church this morning (choir was excused), so I stayed in bed until 10-something.

Sat at the computer to send Father's Day gifts to my dad and my brother (father of two). And, yeah, to do this.

Started (sort of) the day the usual to-do fantasies... Final school-software touch-ups, which can be fixed by remote login. Fiddle with my music website. Come up with new ways to post recordings of my music (for example, this setting of the Phos Hilaron, "Hail Gladsome Light," one of the, if not the, oldest of all Christian hymns).  Work on a piece for summer choir that's half-finished (let's call it that: it's more optimistic than calling it "half-begun"). Work on "The Song of the Mary Whalen," something I need to write for concert band.

Don't think I'll be able to accomplish much, if any, of those. I'm still reeling from mourning "the transition"--those are the words that people in the Science of Mind church used, to refer to "dying;" fortunately for me it's just leaving a job, but it kinda does feel like it has a death-like permanence and death-like threshold... so I guess, to continue the thanato-metaphors, I'm currently in the bardo, which is definitely not a place to go simply when you're trying to "get work done." (The bardo itself is "getting work done," but not in the quotidian "clearing the to-do list" way. Not your post-it-note to-do list, at least.)

If the best I'm going to be able to do today is "poke at something," at least I'll try to do it outside... or at worst, facing the outside. Get some air, some light, some warmth.

Which, when you think about it, is a good way to spend a day, M.S. or not... and definitely a good way for us M.S.ers to seek healing.

Fresh air. Comfort, and being comforted. Light. No side effects, as long as you don't sit unprotected in direct sun for too long. A good way to thing for all of us to do, M.S. or not.

So... go outside. Breathe. Enjoy the light. Of course, we gotta add a pharmaceutical/legal disclaimer to any prescription...

"Side effects include bliss. And smiling. Ask your doctor if bliss and smiling are right for you."

F##k that "ask your doctor" crap. Just go outside, breathe, and smile.

And make the world a better place... one smile at a time.

Saturday, June 9, 2012

The only way out

So many things are on the "not any more" list... some of them I've been able to "sort of" deal with, but this one is a BIG one.

The latest addition to the "not any more" list. It's finally sinking in... High-school teaching. I don't do that, any more.

Definitely high time that I faced that. I've known it was coming for a while, but now the time to say the final farewell to the office, to the classroom, to the whole place, has finally, inescapably come. Doesn't matter that I've known it was coming, and have been working on it for a while. Still... it's hard. Really hard.

And I think I'm actually, finally, starting to deal with this properly...


My state is making my walking not so good, my dealing with the world (just in simple, practical terms) worse than it's been in a while. I hope I can go to the block-away grocery store tomorrow, and get something to make for dinner tomorrow. I think I can. I'm not sure if I can. And I may not be able to...

But that's OK.

Gonna go back to the school Monday, do a final bit of office cleaning. Not a lot of that left to do, fortunately, probably just one or two not-really-that big loads to haul home. Things that added life to my classroom and my office... some books, a couple of posters. The pad I bought so I'd have something comfortable to lie down on, in case I needed to use the floor for more than "walking."

I saw something in the last Harry Potter book... Harry's musing on how he, and Voldemort, and Snape, all regarded Hogwarts as home—the only real home any of them ever had. This school wasn't, thank goodness, my "only" or "real" home, but it definitely was home. Even now, in summer get-ready-for-next-year mode, it's home, because I spent many summers doing just that, there.

But it's not home any more. Not the way it used to be, anyway. And I still have to really and truly process that.

But that's OK, too.

Sometimes the only way out... is through.

Thursday, June 7, 2012

An ending

On Wednesday, an era ended. A personal era, at least.

I'm not a high-school teacher any more.

Wednesday, we had our last faculty meeting. I made my final contributions to some decisions upon which the faculty needed to concur; the faculty went to the field for their traditional post-last-meeting softball game, and I said some quiet goodbyes.

The last thing I did before I left was to burn one of my business cards, in a moment alone. As I watched it burn, I said quietly, "Sic transit gloria mundi." Latin for "Thus passes worldly glory," it's something they warn the Pope-to-be before he is officially made the pontiff. They lower his processional sedan chair to the ground, and raise a piece of burning flax on a spear, to remind him that this... none of this... lasts.

The students are gone, the final meetings have been concluded. I still have to do the final clean-out of what was my office for twelve years; and then, it's really over.

Now, you're probably looking at the title of this blog, and asking yourself, "How is this, this farewell, this major change of life, a 'gift' of M.S.?"

I think the only answer is... it needed to happen. Because somehow, I needed my relationship with that place, with that career, to change. I needed that part of my life to get out of my way... Because something else needs to happen, something that simply could not happen, as long as I was stuck in that life.

What needs to happen? I don't know what, yet. Big-picture-wise, at least. 

I do know, however, that there are a few specific things that need to happen.

Shaking off the past.



Probably not in that order... Oh hell. I need to admit it—Certainly not in that order. Forgiveness needs to come first... and that's probably (certainly) going to be the most difficult.

But each of those will also be gifts... gifts that I give myself. Gifts that I might never have given myself, were it not for the disease, and the roads that it took me down whether I wanted to travel them or not.

'Course, there's the misbehaving bladder, too... how I'm going to perceive that as a gift of M.S., I don't know. Yet.

But, as you've heard me say many, many times... the M.S. road can surprise you by being just-plain funny. And, really... a mis-behaving bladder? 

If you can't laugh at that, you're in even more trouble. 

And in the midst of soul-wrenching troubles... sometimes laughter is the most wonderful gift of all.

Thus passes... something... 

Now, you gotta admit, that's funny. See what I mean?

Tuesday, June 5, 2012

Needles; Horary; boat horns

A good acupuncture treatment today. Since I'm going to be performing The Last Official Acts as a member of the high-school faculty tomorrow (the Last Meeting, the Last Grade Submission, that sort of thing), he gave me a treatment called "horary" that's specifically designed to metaphorically (and energetically) "blow the dust out of the fire" so that the Fire can burn better—something that he hopes will help me bid farewell to the bits of the school to which I need to bid farewell. I've been horary'ed several times before, it's always a good treatment. Even though, as Eustace said in The Voyage of the Dawn Treader, one of the points "hurts like billy-oh". That's the polite words for how much they hurt. But, even seconds after he connects to the point with the needle, I can tell that it's gonna do something great. Always has, before... I'm looking forward to having my Fire refreshed.

Before I got needled, I dumped a stack of EDD and insurance forms on my doctor's desk. So that part of the procedure is about to get under way. I still have to call another company and get them to send me their forms, but soon I'll be in the hands of The Insurance People. We'll see what happens... odd that I'd say with such surety, "I am disabled, y'know... it shouldn't be that much trouble to process this," but there you are.

My doctor also told me that trouble remembering names, something that has been plaguing me a lot this year, is actually quite common with M.S.ers. He even told me where on the corpus collosum that the scleroses form, which when they do, specifically zap ability to remember names. The good news is (if you want to call it that), that it's absolutely no indication of disease progression, of things "worsening;" it just falls into the "that stuff just happens—commonly" category of disease "extras."

Weird stuff, I still remember. Lug nuts on a Hinger timpanum: 11/32nds. 1815 was the year that valves in brass instruments began to be introduced. The organ stop "tuba mirabilis" was invented by English organ builder Robert Hope-Jones, and was based on—of all things—a boat horn. But people's names? Those, I lose.

And that's "normal."

You see why I think that M.S. is, too often... just plain funny.

Monday, June 4, 2012

If it's not one thing...

Man, yesterday... what a day it was.

The Official Events Of The Day began with what is my now-becoming-a-tradition pre-Commencement qi-gong treatment. It must have done something, because I made it just fine through the ceremony. Very easily! Wonderfully easy! I don't know exactly what he did, but I know that the most immediately obvious effect was that my pre-performance terror was gone. Completely! And never returned; even given that wacky things went on during the processional, the part of the service I worry most about. Nobody did anything like the way we rehearsed it.... Which, funnily enough, happens every time. Well, these shows are never the same... I should be used to that, by now. Actually, I am... I've been doing these things for long enough, it's just part of the "fun of live theater," as the saying goes.

As an experiment, I did try to play the organ pedals. The good news was that, unlike the way my ability to control my feet has been in the past—at the level of "bad enough" that I normally describe as "no @$#ing way"—my feet were much closer to usable, on the pedal board. Not actually usable, of course, not safely usable... but knocking on the door of "not today, but who knows? My feet might just work, someday, maybe."

Certainly more reassuring than their usual "don't waste your time even trying" state.

And even better news is that that organ, the Mighty Moller of the Pasadena Civic Auditorium (you can see a picture of me sitting at it, in the sidebar at your right)... for that event, with that band, is the perfect combination to enable me to work around my limitations and still enjoy success. I know how to use that organ, and how to "break the rules" for organ registration and playing, to make up for the missing lower register of that the pedal board provides. I can't make the ground shake as much as I could when I could use those really low notes in the pedal division (16Hz-notes really rattle the building), but only God and I know what "might have been." For everybody else... it was just fine. A sign of just how fine: the school's front desk tells me that the parents have been calling the school simply raving with complements specifically about the ceremony's music!

And here's a sample: A recording of the recessional, Fanfare and Cort├Ęge, for brass quintet, organ, and percussion. Conducted by the composer (that'd be me), also featuring said composer on the crash cymbals.

Everything (performance-wise) went just fine, yesterday. A triumph!

Alas, this evening, the day after the triumph... was not as good. Managing everything that the commencement performance required—including my last public moments as a faculty member, something that wasn't officially announced during the ceremony, but I knew it—must have taken more out of me than I realized. I had been hoping to go somewhere this evening, and it became pretty quickly clear that leaving the house wasn't a good idea; I was physically very wobbly, and surprisingly emotionally and intellectually wobbly as well.

I don't often feel "defeated" by The Disease, or by life, or by anything for that matter, but I sure did tonight. And I don't know if it was just that "defeat" and feeling that staying home was the prudent and necessary choice even if I had been counting on going out tonight, or deferred effects from yesterday's Final Moments... but I'm really down.

Some herbal remedies tonight. Acupuncture tomorrow; that'll put things back to rights. It always does. But another "alas": I'm concerned that whatever elation the acupuncture gives me may be sullied because I'll be bringing with me the "doctor's forms" required by the filing-for-disability-insurance process.

Great. Yesterday, in the midst of musical triumph, dealing with something heavy and unpleasant (the end of my on-the-faculty-ness). And then dealing with something else that's new, and heavy, and unpleasant, which  requires me to face in a different way my physical state... to have to put "legal" imprimateur to calling myself "disabled." Which, I guess I have to admit, I am—notwithstanding imprimateurs of any variety.

As Rosanne Rosannadanna of bygone SNL used to say, "If it's not one thing, it's another."

Saturday, June 2, 2012

Pre-performance terrors

Yes, I know that I've done 38 commencements like tomorrow's before. Many of them in a gymnasium. Yes, I know I've played the processional for I-can't-begin-to-count-how-many weddings. I've even done huge processionals for 1,000-plus graduates in the same service.

I'm still freaking out about it.

Partially because that's what I always do. Partially because this year's is a year where my disability is worse than ever. I must confess, I did play the service music on an organ the other day, and everything went just fine, even with no pedal use. (Depressing, as always, when I tried to use the pedals. Maybe it'll work tomorrow, I try to reassure myself. I expect to be depressed again when I try, and go to the already-planned-for plan B. Which, frankly, is actually plan A.)

But I'm feeling completely drained. Just walking around the house, usually not that big a deal, is a big deal today. I successfully adventured to Kinko's to xerox some music, I made it just fine to the store to pick up dinner and cookies for the techies tomorrow—I always bring the techies cookies. They're always very helpful to me, I like thanking them. But if I thought there was any way I could bail out of this, I would. Of course I can't, and honestly, there's no way that I ever would—I'd rise up out of the grave just to play one last service. But on some level, I sure do wish it would just happen without me. It would break my heart if it did. But still... I just want to hide and let if all just be over.

This is very unusual for me. I get a case of nerves before every show, no matter what it is, especially when I'm the one who starts it. Yeah, the clock "starts" this show, but still, the prelude and processional are entirely on me.

I conduct (and even play the cymbals on) the recessional. But I only have ordinary performance nerves about that. Because the benediction cues me to start. Something else "pushes the 'launch' button."

Performance nerves and a constant adrenaline jag is pushing all of my "M.S. symptom" buttons. Am I going to survive the processional? I always have. Do I truly believe that tomorrow is going to be any different? No. I played the processional without pedals last year, too, and everything was just fine. To everyone but me. But, I perform for them, and everything is wonderful when they're happy. That's what's important. But still...

As of this moment: it's about 24 hours plus 15 minutes until liftoff. Ten-ish minutes later, after the prelude/processional/national anthem are over, I go backstage and sink into blessed, blessed, relief. I wait I have no idea how long until the diplomas are all handed out, head back to the pit, wait for the benediction, and away we go with the recessional—the easiest part of the show, because I don't have to worry about anything.

My favorite part of the show. Can't come soon enough.

Friday, June 1, 2012

Goodbyes; unexpected lessons

I said goodbye to some of my students today.

For the last twelve years, we've had an every-Friday anime-watching club. We watched all sorts of stuff... Brain melters, like Serial Experiments Lane and Boogiepop Phantom; full-on works of literature, like Gankutsuo; and laugh-riots like Ouran High School Host Club and, the way we concluded the year, Kamichu.

We had lots of fun, over the years.

Today, we ended the reign of the anime club; we took the wall scrolls down from the club room—excuse me, of course I mean "classroom". But I didn't just take my wall scrolls home; I gave them to the students. And I told them that continuing the club... was now their job.

Well, telling them that they were to have the scrolls—that caused many, very loud, squeals of joy.

The kids went off to lunch at a local Japanese restaurant. Then they came back to school, bearing a cake. I think it might have been someone's birthday, but mainly, they just wanted a cake. I made tea for them. Many laughs, lots of fun. Absolutely no darkness about how things were going to be different next year; they said they'd miss me, but we agreed that we would definitely be reconnecting. One of the kids even still has some of my DVDs; I told he she could keep them until we could find time this summer to go out to lunch, and she wholehartedly agreed.

Why do I bring this up? Because these wonderful young people have a wonderful way to say goodbye. Never was a head hung, never was a tear shed; yeah, it sucked that they had to say goodbye, but it was the end of the school year, and even fun things end. But that's OK, because there'll be a summer vacation, and then something new will be underway all too soon.

Well, we M.S.ers, we don't exactly have a "summer vacation" popping into our lives, providing something to look forward to. Not the way they do, at least... But we don't know the details of what's going to happen next [whatever], any more than they do. And yet, they don't simmer themselves in regret, or sorrow, or anything... except excitement about "what's next?"

It's sad when something wonderful ends. But something exciting and new awaits just around the corner.

A wonderful thing, such a beautiful lesson. Those whom I have taught so much this year, in our last moments together, are now teaching me.

There's a lot I won't miss, leaving this school. But the students... oh yes. Them, I'll miss. But to honor their last lesson... No regrets. A fun farewell, and then... what's next? Who knows?

We'll see. But ... we look forward to meeting "what's next." And when I can meet this particular challenge, as wholeheartedly as they do...

It's gonna be fun.