Monday, December 31, 2012

Happy Hogmanay

Hogmanay is the Scottish celebration of New Year's Eve. Oh the party does indeed go on to New Year's Day, but the fun starts the night before.

Today, I'm celebrating, I hope, with a former student of mine. He is, as I type this, still languishing in the arms of Morpheus, but as soon as he comes up for air (to wreck the metaphor) I'll be taking him out for lunch. Or maybe dinner, we'll see how long the "waking up" bit takes. Someone who became my friend even as he became my student, in (oh my!) 1985. Yup, I've known him for quite a while.

My wife's mother is staying with us, this holiday; she asked me this morning, "How are you?"

I gave her my now-standard answer: "Same every day, different every day. Just like life."

Today's plans, beside seeing the friend out of our distant past... Bank; second bank, fortunately reasonably close to first bank (you'll notice that I don't think highly enough of them to capitalize them, in the common practice of my usual persiflage); grocery store to pick up prescription and a few other health supplies. Maybe, maybe, get Cat a new scratching pad (the parking lot for the Cat Place, I thoroughly dislike). Come home; send some e-mail, maybe twiddle some web stuff. Make tea. Maybe watch some Adventure Time, all episodes that I've seen before but I really enjoy them... Maybe I'll also catch some Z's during them as I'm waiting for Friend From The Past to wake up. All, of course, while I'm waiting for me to really wake up; which is itself always an ... interesting... journey.

And since, in the Old Church Practices today is still Christmastide, a musical gift for you. The "proper" (the "official text") of Christmas Day is the text "Hodie Christus natus est; hodie Salvator apparuit": Today Christ is born, today the Savior has appeared. Courtesy of our friends at SoundCloud, here's my setting of this text, performed by the choir and orchestra of St. Andrew's Presbyterian Church in Newport Beach, California, conducted by Dr. Larry K. Ball. With the composer (that'd be me) holding forth on the timpani.

Merry Christmas, happy Hogmanay, and a blessed new year to you, my friends. Enjoy some Christmas music while the season (and the year) lasts!

Thursday, December 27, 2012

Freedom (and not)

There are many, many, differences between wheeled chairs. Not just in their physical/mechanical makeup, but in the experience of being in them.

Yesterday, I went to Hollywood's Magic Castle to see a couple of my former students performing.

Oh, dang they're wonderful performers. I wish they had web sites, I'd send you to them. You want to see them perform. But that's another story. Anyway, back to the Adventures In A Chair...

The Magic Castle was built in 1909; it was, at the time, somebody's house. It's full of fascinating stories and interesting history, but that's for another day. What's pertinent to our discussion is that it's probably the most ADA-unfriendly place I've ever been. There's only one bathroom in the whole place that's even vaguely wheelchair accessible. But anyway, I spent the evening in my transport chair—the one that's a walker when I'm walking well. Which I wasn't, yesterday, so I used the chair as a chair. Not exactly sure why I was in that chair, I'm sure somebody thought "Oh, that'll be OK." But, alas, it wasn't. Being in that chair means that wherever I want to go, someone has to push me. Fortunately, one of the Castle staff did most of that pushing, including going up and down that nasty hill at the left of the above picture. Elevators? Don't even ask. Of course not. Nothing but stairs, and lots of nasty, nasty hills.

Lots of struggles, to get everywhere. And lots of simply being... left. Unable to move anywhere (see above under "not walking well, even with the walker"). So whoever was kind enough to push me inevitably just left me somewhere. Sometimes, that was OK. But not always... At the end of one of the shows, some Castle Guy snatched me out of the showroom before I had a chance to talk to my wife about where we'd meet/what we'd do. He took me back downstairs to the room one hangs in at the entrance (for those of you of A Certain Age, it's the room that held the bar you often saw in the Bill Bixby TV show "The Magician"). I had him leave me where I could see who was coming down the stairs, and where (I thought) people coming down the stairs could see me.

Not so much... I see my wife coming down the stairs, but instead of coming towards me, she headed somewhere else. So, here I am in my chair, wondering when my wife was going to come find me. She's maybe six seconds away (for someone who can walk), wondering where I am. And there I sit, unable to do anything. As I mentioned above, see above re: "can't walk even with the walker tonight." Well, eventually I got some Castle Guy's attention, and got him to take me outside where my wife was waiting for me.

We asked the valet captain to go get our car, Castle Guy went off somewhere, and ... I really don't know where my wife was, or went, or anything. Being in the transport chair, I couldn't even turn myself around to see what was going on. So here I am, this time outside in the cold (and it was quite cold), just sitting where I had been left. Again.

Let me reassure you, I found the "left alones" opportunities to practice some Zen detachment. There wasn't anything to "do," all I could do was "be," so that's what I did, and that was actually... OK. In a quiet, Zen way. But quiet Zen-ness notwithstanding, it did nothing to let my wife know where I was or me know where she was. And it was quite cold, outside, unable to move.

But that was yesterday. Today, wife and I celebrated our anniversary by watching Wreck-it Ralph. Wonderful, heart-warming movie. This time, I used the self-propelled wheelchair. Which was full of wonderful freedom. Gotta use the bathroom? No problem. I'll go there myself. Where's my wife? I know, I'll spin around and look for her. We're supposed to meet over there, yes? OK, I'll go there, and y'know, meet her.

I never thought a wheelchair would be such a liberating device. Boy, is it ever. Doors aren't designed for it. Thresholds aren't designed for it. Roadways aren't designed for it. But damn, is it liberating. And I'm especially blessed at being able to sort-of-walk the tiny distances required to heave the chair over the problem threshold or wrestle it/me through a problem door. And I'm definitely getting my "cardio" work done by pumping away at the wheels.

I love my walker. It's also liberating (and it's lighter than the wheelchair, when I have to lift it into/over something). When I can walk, that is. Which right now, I can't really. Fortunately, I can wall-walk around my own home, or all sorts of other places where there are walls or railings or other walking-assistance features, so I still am "able" to (monstrous air quotes) "walk" and I'm still doing so, when it's possible.

And I move much, much faster in the wheelchair than I do (huge air quotes) "walking." Another advantage.

I'm sure there are people—I used to be one of them—who will see a person in a wheelchair and think "Oh, how sad, how limiting."

Lemme tell you, given the non-walking that I do with my walking-assistance device... a wheelchair is neither sad nor limiting. And, most surprising, I have to tell you, it can actually be...


But expect to have your creativity and humor tested to the max trying to use such things in a hundred-year-old Victorian building. Magic Castle provides quite the training ground for being in a wheelchair. I'm sure there are plenty of other facilities that are equally... um... challenging, let's say politely. Or, more to the point, that suck just as much or worse.

Oh well... at least, at Christmas time, it's quite nicely decorated. If you're going to trapped in a chair, having something interesting to look at does help dull the pain.

Of course since the Magic Castle has five bars, there are other ways to dull the pain. Which I don't use, so as not to pour incapacitating beverages into an already malfunctioning nervous system. But that is definitely another story.

Sunday, December 23, 2012


I was going to start this by saying "Wow..." but that word's about as far away from my current experience as any could be. At best, my experience rates a George Takei-esque "Oh my...."

I've been pretty much bedridden for several days. Yesterday, I was able to operate a computer for about ten minutes to roll a piece of music for somebody (a piece I had already arranged and completed, conductor just needed a couple of minor corrections, which were fortunately at the " done!" level of difficulty). And then I went back to bed.

I'm still in bed, today. I picked up this laptop at about 1:15, and as soon as I finish this post, it's getting shut off. Maybe... maybe... I'll make it into the living room and groove on the smell of the Christmas tree. Or maybe sit somewhere else. Or maybe I'll just lie back down.

Decisions, decisions.

None of my Medical Team has any idea where this inescapable fatigue is coming from. It's not just, or so we all think, "normal" M.S. fatigue, because there's so much sleeping involved. One guy thinks maybe I need to eat more frequently, maybe? Because I really am not eating that much, even by my current fading "standards." Nice idea, I guess, but I'm also currently living in a world of "maybe I'm going to be nauseated" and stomach does not particularly want to be used for anything more than water, right now.

Decisions, decisions.

So, here we are... day after the Mayan apocalypse was to occur, or so it was said.... but the Syfy channel is running Star Trek V, not once but again, which I guess is a sign of the End of Days in its own way... but if the world really is going to come to an end, the way I feel right now, I'm going to sleep through it. Probably. Maybe. Or not... who knows?

Decisions, decisions...? Like I actually have the energy to do even the deciding, much less do anything about my decisions.

Well, the laptop's running out of power, and so am I. Decision to continue is going to be made for me, in spite of what I "want" to do or not... which is pretty much the way "deciding" is going, right now.

Tuesday, December 18, 2012

In a word

Well, we're still trying to unravel the Gadolinium Mystery, as to why suddenly upon the IV injection my spasticity and pain suddenly disappeared.

One of my Medical Team today did some investigation, and said that as far as he could tell, it wasn't the gadolinium itself... Unfortunately, he didn't have any idea what might have caused it, maybe some artifact of the magnetic resonance he thought? I'm personally not to sanguine about that as the reason, because I had been inside that giant magnet for quite a while and it was doing nothing to ameliorate the spasms, which POOF! disappeared instantly at the moment of injection.

Another mystery, I guess.

While I was under the roof of said Medical Team member, I got a new herbal formula, one part a combination of several herbs, another component involved instructions about how to take a single herb in concert with olive oil, which he says will be of particular, almost magical, virtue, for me in my current situation.

I love that about Chinese-style herbalists... the formula you get today is specific to you and how you are today. None of this "is thought to xyz in abc% of patients taking it... maybe. We think."

In other news... to add insult to injury (literally), I got a letter from my insurance company. I had raised a ruckus about how they wouldn't pay for my wheelchair unless it was pre-approved, in advance, prescription to purchase it notwithstanding. Not only did they say that well, it has to be that way, but moreover I need to buy my wheelchair from such-and-such a purveyor, and no other.

'Course, the purveyor they want me to use is in San Diego. Four f@#$@ing hours away from my house, assuming zero traffic on a completely empty freeway. The purveyor that's ten minutes away from my house, or the one I pass every time I go to my doctor (whom they also don't like paying for), they're no good—they won't pay for it if I get it near my house.

Profanity fails me, to describe this. And, boy, I do know a lot of profanity, in several languages. I know how to say "consume excrement and perish" in Middle Egyptian. Which is what I'd like to stamp on the foreheads of the insurance company's people that think I'm going to be willing to spend eight hours behind the wheel of a car just to make them happy.

In a word, [beep] you.

Sunday, December 16, 2012

BIG surprise!

Last Friday's MRI went well, and was weathered well. Once we finally...

Finally! them to do the test my doctor asked for, rather than the (completely useless) test the insurance company imagined they'd like to pay for or the where-did-THAT-idea-come-from test the MRI place had originally thought for whatever reason was The One To Do, they finally decided to do just the test my doctor actually asked for.

I got a chance to briefly! see my skull MRI. Eh, a few more sprinkles of scleroses here and there, but hardly a "Sunday in the Park With George" pointillistic extravaganza. Besides, I already knew I still had M.S. Whatever it was gonna show, it was no news.

But here is the big surprise. BIG surprise...

They took one scan of "stuff" without the contrast medium, then they shot me up with whatever it was they were using and took the second one. The contrast stuff is what makes the scleroses "light up," it's what makes M.S. so much easier to diagnose nowadays.

While they were doing the "no-contrast scans," my legs were spasming quite a bit. The folks at the console asked me not to move my legs; I told them I was trying not to--and I was trying very hard not to, but that wasn't doing any good. My legs were twitching, verging on nastily twitching, and at least one of them was starting to ache while it was twitching. The lab techs actually laid gentle/soft weights on my legs to try to ameliorate the effects of the twitching, and that kinda worked, but not really.

Then, they shot me up with the IV contrast medium. Last time, it was gadolinium, but I didn't get the "gadolinium buzz" so I guess things have changed.

But here's the surprise.

My leg spasms stopped. Completely.

My leg aches went away. Completely.

I am 100% positive that there was no analgesic, muscle relaxant, anything, besides the contrast medium. I had no change in consciousness, I was able to converse and even drive completely unencumbered in any way by the injection. It was nothing but "inert" contrast medium.

And it made my leg spasms, and aches, stop. Completely. And as of last night, two nights after the MRI, the leg spasms mayyyyybeeee might be kinda vaguely hinting towards starting up again at night (which is when they're worse), but they haven't CLICK! returned. They're still far less than they've been in a long time.

I am so calling the place on Monday, and (politely) demanding that they give me the precise name, if not contents, of the contrast medium. Because my care-giving team is gonna be very interested in what it was, and how it did what it did.

Friends, I gotta tell you, that was the number one best side effect ever!

We should all be so lucky. And me, I should be so lucky way more often.

If I get a clear answer besides "WTF? It did what?!?" You can dang betcha that I'll share it, certainly under the very thick proviso "Your mileage may vary." I'll be surprised if it turns out to be anything besides "Well, we had no idea that would happen, but cool!" But I will definitely share what the Medico's say about it.

Tuesday, December 11, 2012

Dreams; angles

We've all read stories in which "character X came to me in a dream" is part of the narrative.

Well, that actually has happened to me, but that's a story for another day. Here's the story for today...

I guess you'd have to describe this as "I came to me in a dream."

In this dream, I was back on the Yale campus, for one of our every-five-years reunions. The "reunion headquarters" for the class housed on the Old Campus is always located in a room off to the side of a chapel that houses a very nice von Beckerath organ. The last time I was there in "waking life," the gates to the organ console were locked (back in my own day, they were usually open, and I still remember even today where the keys for the console itself were kept).

So in this dream, I'm looking at the organ, I'm looking at the locked gates, and I think, "I don't care if I 'can't play the organ' any more. I'm playing this organ." And I go about to various reunion staffers, explaining what my relationship to/with this instrument was (including how I performed at the funeral of one of my classmates, who took her own life during the final weeks of our senior year) and how dammit, I wanted to play it, even if I couldn't "play it" because of my malfunctioning legs.

And this, I think, is the road I need to travel. Not back to New Haven to play an organ I can't play, but to "play it anyway." Even if I can't.

Because, I still can. Just... differently.

A quote from Jean Genet, from his novel The Thief's Journal: 
“Limited by the world, which I oppose, jagged by it, I shall be all the more handsome and sparkling as the angles which wound me and give me shape are more acute and the jagging more cruel.”

Monday, December 10, 2012

Super-Chicken truths

Well, it was another one of "those treatments" at the acupuncturist this week... I got needled in one of those "you can't be serious... you want to needle me where?!?" points... which are, of course, always the most life-affirming, life-changing, treatments. The tragi-comic thing about it is... I've gotten used to it. Still hurts, but I'm told that I gotta get that point done, and I don't even say "oh well" any more. It's just... more of the same.

The most interesting question he asked me was about "What's missing, in your life, right now?" And what's interesting is that what's missing is just... missing. It's just... not there. It has nothing to do with The Disease—even though, it's quite true, that there are things that I physically can't do that I seriously miss, but those aren't the things that are Really Missing right now.

My former employment provided much of what I'm currently missing. Other former employers... co-creators of magical moments... friends... who for their own reasons needed to take themselves "off the board" and thus out of my creative/creation-of-things life; and thus, the "fuel for the fire" was also taken off the board.

All the M.S. programs in the world won't provide what I'm missing. I don't need physical therapy, I don't need intellectual activities, I don't need napkin folding. I miss creating things that enabled heart-to-heart connection. I can write all the music I want for myself... theoretically, at least. But it's nothing like writing something that people perform, and are moved by the performing of it... and that then people hear, and are moved by the hearing. It's the direct connection of the hearts of the creators and the participants who are present at the gifting of that creation, and who energetically join into the performance and co-create magical, transformative, moments.

Transformative moments. I miss those.

And that was the big truth of today's dharma talk... You—I— know what's missing. You—I— know what's  needed.

And... I don't know where to find it.

Now, that's definitely a truth of the human condition. I know (I think) what I need, but I'm not sure how to find it. A question that makes "How should I attend to my neurological nonsense" or "WTF am I going to do with the insurance company" seem downright simple and straightforward.

As Super Chicken often said... "You knew the job was dangerous when you took it." Well... he was right.

Sunday, December 9, 2012


I've been learning many interesting lessons about a self-powered wheelchair (the "wheel it yourself big-side-wheels" type).

I moved from my transport chair/walker to the full-on wheelchair for a few reasons. One of them, speed; my walker-walking speed is excruciatingly slow. Another, bladder side effects... MD says that it's a very well known/common occurrence for walking any distance to, oh let's call it "loosen" one's elimination system. That, I definitely don't need. I'm still good for short distances (I do all the moving about at home without anything except the wall or conveniently-placed furniture), I'm quite relieved that I don't need a walker "within the walls" at home; but out in the Real World, it's another matter.

Something definitely not in the "manufacturer's specifications" for the wheelchair is that I can actually use it as a walker, for short distances. Lock the brakes "on," you got yourself a walker that can double as a wheelchair, when that's what's necessary. Not as good a walker as my walker/transport chair, but if you need a walker not a wheelchair for a short (short!) distance, and you're not at all in a hurry, it works. Well enough.

It's much easier navigating the world with a walker rather than a wheelchair. Most of the world has nothing to do with ADA-friendly, much less wheelchair-friendly. I'm learning all sorts of lessons about getting through doors, across thresholds, navigating across sidewalks and through parking lots, thanks to my charming new friend the wheelchair. Then again, traveling the M.S. Highway, one never really goes seeking "surprises;" they spring up all the time.

Three destinations are calling me today... One, the bed. Two, a magician friend of mine is lecturing at the Magic Castle (as a member, I get to go to such things), but where he's lecturing is very wheelchair unfriendly, and especially bathroom-wise horribly unfriendly... I'd have to crawl up a flight of about eight steps to make it to the bathroom that I couldn't make it into even with the walker... this bathroom is just plain dinky.Three, a former student of mine, a divine French horn player, is giving her master's-degree recital also this afternoon. Churches tend to be more wheelchair friendly than most places, but I'm definitely not good for long stretches of sitting, even if the music is worth listening to... which, with this person at the helm of the horn, is going to be totally worth listening to.

This one's going to be easy, unfortunately. The winner's probably going to be... the bed. I gotta tell you, this saddens me. It's one thing to deal with "I can't decide between two things I'd really like to do" and another to face "I think it'd be prudent for me to go lie down. NOW."

Not like not being able to do [long list of things I used to do that have been removed from my life by my condition] isn't annoying. Saddening. But being stuck in "I have to go to bed... NOW" is different.

I'd probably be really pissed off if I didn't need to go lie down. NOW...

And pissed off at my own condition is something that doesn't happen often. At all.

And maybe... maybe it should. Wouldn't make any difference to the litany of limitations... but it might be better for me to actually get mad, once and a while.

Friday, December 7, 2012

MRI-scheduling Success!

Finally, after several hours put in by both me and my doctor, the MRI company will do what my doctor wants.

I finally managed to struggle my way "up the chain" at the MRI place, to speak to the "MRI supervisor." Who understood pretty much immediately what I said we wanted, and it was a 100% non-issue. I didn't have to struggle over things like "I don't need a lumbar scan" because there's pretty much no spinal cord in the lumbar zone, so since the doctor was most interested in a spinal-cord image, there was no reason at all to do a lumbar anything. She knew that! I didn't have to explain it! So, as I told her, it's an "everybody wins." Doctor gets what he wants. MRI guys finish in one day, rather than two, for which the insurance company will charge me up the butt for having an "extra" un-preapproved, test. I don't have to get more than one gadolinium buzz. Everybody wins.

So, several hours of arguing with various functionaries at the insurance company, and another set of functionaries at the MRI place, they're going to give me the MRI my doctor wants.

Now, let me take you back to 1997, the year of The Diagnosis, when a doctor calls the MRI place and says, "I want this test done," and they said "OK, when?" and we picked a time, and I went in and had it, and we sent the paperwork to the insurance company, and they took care of the payment, minus the usual "Patient's got to pay something, what do you think this is, England? Japan?!?" pittance.

Those were the days, weren't they?

Next on the agenda will be the struggle at the MRI place when I have no interest in taking all my clothes off to wear the all-cotton, zero-metal hospital gown the want me to wear, rather than the all-cotton, zero metal clothing I want to wear that's more comfortable and keeps me warmer. I'll never forget the argument I got into the last time I had a chest x-ray... they wanted me to take off my sweat pants. "It's a chest x-ray. Pants are nowhere near where the x-ray is going to be taken," I told them.

"But the elastic may throw a shadow on the film," they protested.

"If it gets in the way, and the tech asks me to, I'll move it. Until then, I want to stay warm, I'm keeping it on," I told them.

They didn't like that. They thought I had a Bad Attitude. Well, it being a chest x-ray and all, tech said nothing about my elastic waistband throwing a shadow on my chest.

Why yes, I do have a bad attitude. I also have a bad disease. I can lie motionless in that MRI longer than most of your other patients can, without succumbing to claustrophobia or, pretty much anything. But compliance for its own sake, just so that you have a "good little patient," rather than wear my own, vastly more comfortable, significantly warmer, equally non-ferrous, non-radio-opaque garments?

Besides, the last two MRI's I had, nobody cared about what I wore, as long as there was no metal in it.

There I go again, living in the past. Still. I'm keeping my warm pants on.

Don't make me quote Dick Cheney.

Thursday, December 6, 2012

Manzanar; Schiller

Now here's a Zen moment: Speaking with people who work for Big Health... either the insurer, or companies the insurer wants me to do business with.

The essential details are: My MD says he wants exam X. The insurer says that I must have exam X done at place P. I call place P, I say may MD wants MRI exam X. They say they won't do that, I have to have exam a' b' c', and I can't have them all done on the same day. Too much radiation, they say.

I say I don't understand this; MRI doesn't emit radiation. Well, yes, it does, but so does a light bulb, and you can take that kind of radiation all day. I've had MRI's done before, precisely the way my doctor wants them done, in one visit, and nobody--NOBODY--ever cared. Or even noticed.

Well, we don't do that exam, and what we do do, you can't have on only one day.

As may be, I tell them, but the insurer has approved me for one exam, not multiple, and if I do things the way you want, which isn't the way my doctor wants, it'll triple my cost... if I get this test without "pre-approval," they won't pay for it. Why anyone gets a doctor to prescribe an MRI for fun, or in some other way that needs people who don't know the patient involved to intervene and slow down the MRI-getting process, is beyond me.

Now here's the Zen moment: Speaking with patience, with compassion, to the person on the other end of the phone.

They know less about your condition than you do. They know nothing about the diagnostic system or even basic medical lingo (e.g., what's "on top," cranial, thoracic, or lumbar). They're just reading from the script: Here's the way we do things, therefore that's the way we do things, and that's all there is to it. Bend over and smile, as they say in the proctologist's office.

At this point, it's like yelling at the weather. Yep, it's raining (or isn't), and now what can we do about it?

Nothing. Shigata ga nai, as the Japanese say... nothing to be done.

Which doesn't mean I'm not continuing to find a way around the blockage, but that road can't be plowed by external-to-the-system logic. Perhaps force majeur; if the insurer called and said "Yes, you are going to do it the way he says," it might happen. Might. But that won't happen.

Shigata ga nai.

Pity when one invokes a favorite saying of internees in Manzanar in the face of 21st-century land-of-the-free America, the land where the Insurers rule over all.
Against stupidity, the gods themselves contend in vain. (Friedrich Schiller) 

Tuesday, December 4, 2012

The Foot

The "fatigue umbrella" is most puzzling. It unfolds itself over everything... I make myself a cup of tea. I want to go to bed. I go outside, breathe the air (especially nice after the recent rains), fiddle with the sprinkler controls to make sure the water doesn't start flowing until the rain has had a chance to soak itself in; I want to go to bed. I make a couple of "business" calls to insurers who called while I was asleep during the day yesterday (see above, inescapable fatigue); immediately thereafter, I'm tired and want to go to sleep.

I remember the Good Old Days of college, when cups of coffee worked miracles. Then again, there were days that I said started as "two-cup mornings"... one cup over the head so that you were awake enough to get the second cup into your head. Some mornings were eight-cup mornings.... ah, those were the days. But like so many things, my coffee drinking is a thing of the past. Has nothing to do with The Disease, I gave it up for other reasons around oh my, is it 20 years ago?

But this morning I made a green Japanese tea, with a touch of matcha, that delightful green powder that monks invented centuries ago to help them stay awake for long meditations, which is now used primarily as a flavoring for ice cream and the Zen-inspired tea ceremony. It should be a "wake up" assistant. For me, apparently, it isn't. At least, not right now, as I'm writing.

I know "fatigue" is something that plagues us M.S.ers, and Lord knows I've experienced "standard M.S. fatigue" more than enough (and what M.S. symptom, any disease's symptoms, doesn't fall into the "more than enough" category). I know people who have had optic neuritis, I know people who have had crash-and-burn "attacks" (whatever those are, I've never had one), I know people who have suddenly been unable to hold things because they had a sudden hand palsy, I know people who have suddenly been unable to ... well, lots of things. But "I have to lie down and cover my eyes and probably go to sleep, now," I haven't heard a lot about those.

Well, the M.S. Highway is full of ... oh, why not call them "surprises." They always are, aren't they?

So, after "needing sleep multiple times during the day" and "getting up with the sun, but then going back to sleep" and lots of daytime "sleep," last night I hung with a friend of mine until 11:30PM, and was awake until 2.

Not "productive" or "full of vim and vigor" or "now's the time to do some creative thinking" or "I'd love to catch up on some reading," just awake. So, the whole "circadian sleep cycle" is in the dumpster, apparently.

Well, it is coming on winter; the season of Water has always kind planted its foot on me, Monty-Python-style. It may be the season of Emphasis, as Gumenick writes... what it appears to be emphasizing right now is, "Go to bed." It is doing a lot of emphasis without much warning, though... I mean, it's nice to hope for one's "better angels of our nature" to help one through hard times, but they don't do particularly well under The Foot.

Saturday, December 1, 2012

Discoveries, of things not here

Ralph Story, in the days of my callow youth, hosted a TV show titled "Ralph Story's Los Angeles." In more recent days, he has hosted a TV show titled "Things That Aren't Here Any More."

That has been pretty much the title of this morning's activities. Things that aren't here any more.

All of us, Disease-accessorized or not, live through this. The high-school letterman's jacket we find at the bottom of the box that's at the bottom of the pile of boxes. "Oh, that takes me back." And a smile. Or the picture of the old girlfriend/boyfriend that we thought we'd discarded but, it turns out, is still at the bottom of the box at the bottom of the pile of boxes. "Oh, that takes me back." A sigh... perhaps a sigh of relief, for a Road Not Taken, and good thing, too.

Today, I did some web-site maintenance. This time of year, if you're in a very liturgical church, it's still Advent, and will be until December 24 (or January 6, if you're Eastern Orthodox). But in the Muzak world, it's Christmas (in way too many stores, it has been Christmas since Halloween). My mother breaks out the Christmas CDs (records, in the Goode Olde Days) the day after Thanksgiving. So, I figure, it's a good time to break out the Christmas music on my music web site.

Back in the pre-Disease day, I was a very enthusiastic organist. (I might be again, if The Disease would just @$#@$ing back off and let my legs work again.) I even made a recording; because it was When it Was, I made a cassette, but then the Digital Era enabled me to convert it to a CD.

So, I start the day by walking face first into Things That Aren't Here Anymore. But actually, that was OK... it was more of a "discovered high-school jacket" moment, a pleasant memory of Bygone Times.

And then, there's the poking at the web site. And that's when The Inescapable and  Unconquerable Fatigue sets in... the fatigue that, nowadays, seems to pervade everything. Constantly. Things are a very subtly different since I negotiated (and started implementing) a herbal-dosage change, but oh yeah, the fatigue's still there.

Eventually, I got it done. You're welcome to check it out, at Time was, when there was new music going up on that site monthly. Sometimes more frequently. Not today... and "on paper," I want that to change, but somehow, even though I still have all my music writing tools, including the old standbys of pencil and paper, there just ain't any music, or anything, happening, even in my head. I don't even hear the "ohrwurm," the "ear worm," as the Germans call it, that I used to get all the time, of music demanding to be written down.

And this is what's currently really getting my goat about my experience with The Disease, nowadays... inability to manifest anything. And all the Lifehacker-provided Easy Answers in the world, including the ever popular "Oh, just do something, it doesn't have to be perfect, that'll get things started," doesn't help when even sitting up to "do something" takes too much energy.

So, here's the plan for the day: Just do "something," yes, but do things that don't cost so much that doing "something" stops me from doing anything else. Type this entry. Make and enjoy some tea. Maybe type something else that has been rattling in my head for a while, it's something that's hardly creative but for whatever reason It Wants To Be Written Down. Send a couple of e-mails. If all goes well, and there's energy to burn, go to the store for scallops, because we've got hatcho-miso broth left over from yesterday and my wife said (quite correctly) that it'd go great with scallops. And, of course, cook said scallops... another energy-expensive challenge, because it involves a lot of standing and catching myself from falling over, which happens way too much nowadays... sigh.

And maybe, watch some Adventure Time. Not my favorite cartoon of all time; but occasionally, there are some very sweet and dear, very heart-warming and heart-wrenching moments; moments when the characters discover something about themselves, about a truth deep within their hearts, that they didn't even know was there. "I didn't know that I felt that way" (or even could feel that way) moments. Discovered love; discovered sympathy; discovered truths of the heart.

Which, interestingly enough, is what I have always tried do discover with my own musical compositions; to rend the veil separating us from ourselves and The Truth.

Art imitates life, indeed.