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...

Fun.

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

Decisions

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 "click...click... 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!

...got 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

NOW...

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 robertparkermusic.com. 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.

Friday, November 30, 2012

Hot and Cold (in caps)

Finally did some real cooking tonight, the sort of thing I used to do nightly. Before The Disease...

Last week, I had picked myself up some hatcho miso. It's not available everywhere, it needs to be made in a specific city in Japan, using a very specific method, if it's to be legitimately called hatcho miso. Similar to the way the name "champagne" can properly be used by wines from a very specific region of France.

It was more strongly flavored than I expected, I had to do some unexpected "fiddlng and diddling," but the flavor came out just great. Chantrelle and oyster mushrooms, plus black cod, were the principle guests at the flavor party; everything worked out just fine. I have some broth left over, my wife says it'll be perfect with scallops... I agree. So, if all goes well, that'll be tomorrow night's dinner.

Also today, I negotiated a dosage change with my herbalist, for the current formula. You know you're living enough in the Eastern world, when you can send a message to the doctor using terminology like "too Cold" and "winter puts my Fire out, Cold formulas make it worse" and he understands you.

It's raining on and off, here in "sunny" southern California. It's very obvious... the plants like rain much better than they like irrigation.

I hope the adjustment to the herbal formula, with additions of yummy treats like hatcho miso broth, will help warm (and Warm) me up enough, so that I can enjoy the gifts that this rainy season wants to give me.

Stay warm and dry, friends.

Thursday, November 29, 2012

Conundrum

The Disease has definitely made a new home for itself in the Stay In Bed phase. This is the first not-just-listening activity that I've done all day... Got up for whatever reson at 5:30AM, took my thyroid pill, went back to sleep until 10AM. Stayed in bed until 1:30, and here it is, 5:00, and I'm finally doing something besides just sitting and listening with my eyes closed.

Sure is a good thing that I'm not in the working world... I wouldn't survive just being in it, much less trying to work in it.

Yesterday, I drove myself to one of my favorite Taiwanese lunch/tea places. Brought said lunch home, and fortunately finished it just before I fell asleeep. Fortunate indeed, because the empty bowl and chopsticks hit the floor, and although I sort-of heard the noise as they hit the ground, they didn't make enough noise to really wake me up, and I didn't see them on the floor until about an hour later.

Meanwhile, another story... and a conundrum, too.

While at said tea/lunch place, my usual "handicapped parking" spot was full. Driving around the lot to find another parking space of any kind, I saw three people around a silver Mercedes, engaged in conversation. There may have been a baby carriage at the side of the car; it may have been schlepping something other than a child, but it was a baby-esque carriage.

What I also saw: No handicap placard. No handicap plate.

I've seen this very car parked in handicap spots before. Same luxurious silver Mercedes, not easy to mistake for another vehicle. Never a placard. No plate. Basically, no state-issued permission to park in such places. At least that I could see, and those things are easy to spot, especially for those of us who have them.

So, here's the conundrum... Is there any point to saying to these people—politely, humanely, no point in raising hackles in your initial communication with people you've never met—that "they can't park there?"

The "handicap-ness" of these spots is very clearly marked. Clear blue lines, clear square wheelchair symbols on the surface of the lot and on abundantly visible signs in front of the very spot that these people were absconding with. There's no getting around what kind of spots they are being profoundly clearly posted. These people just didn't care.

Now, I know that there are sometimes issues with people from other countries having different relationships with/to "authority" than U.S. citizens do... Teachers with students from foreign countries run into this a lot, because in other countries, the teacher is a Tool of the State and good neighbors come together to Put Down The Man so of course they cheat and help each other cheat on tests (and everything else) because that's what good neighbors do, they come together to Put Down The Man. And I do not know what these people's relationships to The Man is, in their home countries, but all I know is they have a Very Expensive Car and I've seen them park several times in this very lot, always Anywhere They Like. And in fairness to our non-native bretheren, this is something that seems to infect Los Angelean drivers, the perception that right-of-way and other laws vary in their application depending on cost of car, as do answers to the question "Don't you know who I am?" It's about privilege, not rule of law; or so it seems, here in L.A.

But to the question: These people have repeatedly shown that They Just Don't Care whether they're "allowed" to park somewhere or not. Is there, any reason to tell them "you're not supposed to park there"? Even phrased specifically to appeal to self-interest—"Dude, that's a three-hundred-plus-dollar ticket if a bored cop wanders through this parking lot. You really don't want to park there."

Or I could call the local constabulary and ask them to send said bored cop through the parking lot to ticket them. Satisfying on paper, I suppose, but I don't know if I'm quite "in that sort of place" yet. Although I may be, if they take the only available handicap spot from me again. I certainly don't mind other disabled people getting to spots before I do, but people taking those spots because they don't feel like "walking that far," or don't feel like parking in "narrow spaces" with their Wonderful Car... that's different. I'm sorry, but that's different.

Then again, having to "walk" (walk-ER) a little further is exercise. So... I should thank them, perhaps?

The Good Book says that rain falls upon the just and the unjust alike. As may be; nonetheless, it doesn't mean that I like having to walk through more of the rain because someone thinks parking spaces should be assigned by cost of car.

The Good Book also says, "Vengeance is mine, saith the Lord: I will repay." Well, if that's what's waiting for them... I don't think their luxurous Mercedes is going to make much difference.

Monday, November 26, 2012

Needles; wheels

A very significant acupuncturing this afternoon. And a small "first" yesterday.

Acupuncturing opened some closed energy pathways. When these pathways get blocked, life stops being worth living. Or even able to be lived... I spent the entire weekend in bed, mostly sleeping, I didn't have enough energy to do more.

This "blockage" was pretty serious... it took twelve needles to fix it, rather than what has alas come to be my "usual" need for just four. All seems to be better now, although it won't be until tomorrow that I'm really fit to deal with the world at all, in anything more involved than "driving back from the doctor's office."

And a small first... I took the "self-propelled" wheelchair out on a "solo" run over the weekend. Shopping. A very simple trip, this particular store is nicely equipped with "drive it yourself" powered chairs (which I've been using for quite some time), but the "solo" was important. Load the chair myself into the truck; unload it from the truck upon arrival, again by myself;  wheel myself into the store, transfer to the power chair. Do the shopping, have small help getting back to the truck from the cashier line (someone pushed the wheelchair behind me in the power chair), but when everything got back to the truck, I loaded the wheelchair all by myself—it was, after all the point of the whole adventure—and then, home again home again, jiggety jog.

Things I noticed (both on the "solo" trip and a separate someone-helping-wheel-me trip):

  1. Chair's weight is just barely on the "doable" side of "almost too heavy to lift myself." Still quite liftable, but barely. My wife and I took it out somewhere together earlier last weekend, and it was actually very much a moment of "sweet togetherness" to lift the chair into the truck together. The doing of which, by the way, with the two of us? Trivially easy.
  2. Man, can I propel myself faster in the wheel-it-yourself chair than with the walker. I walk very, very, very slowly, with the walker.
  3. When you're two people together, one of them pushing you... you definitely want to be pushed in the big-wheel chair rather than the walker/transport chair. The big wheels make going over bumps/divots much easier to manage (both as propulsion and cargo), and no matter how solicitous your "driver" is, if their attention is drawn to something, they just kinda ... leave you wherever you are when their attention is drawn elsewhere. With the self-propelled wheelchair, you can reposition yourself instantly—it might be as simple as spinning yourself around so you're facing another direction, or moving yourself to a more comfortable location. I really like being able to do that. Though my assistants have the patience of saints and are so generous to push me all sorts of places, they can wander off and leave me facing the corner or a wall and you can feel kind of ... abandoned, even though you know that you really haven't been. Big-picture abandoned, at least.

I gotta tell you, though, more than anything else today, I am so grateful for my five-element acupuncturist and today's Twelve Magical Needles. Life is livable again.

Considering where some of today's needles needed to be inserted, you'd never imagine you'd be grateful for such things, but trust me... When you know what it is you've "got" (acupuncturally speaking), you beg to be needled there.

I suppose one of these days I'll be as grateful for M.S. as I am to get needled in CV1 and GV1... I'm definitely not there yet, but you never know. Stranger things have happened (like getting M.S. in the first place), and if you can be grateful for a needle in CV1, you can be grateful for anything.

Thursday, November 22, 2012

Have fun anyway

Survived Thanksgiving. A vegan Thanksgiving. I've had many varieties of Thanksgivings, but this is, I think, my second vegan dinner.

My Medical Team permits (even within the world of "moderation," encourages me) to have meaty treats. Theoretically, I could have turkey meat (depending on how it was prepared), and even the giblets in the stuffing. But the herbalist who put me on the diet of "no, never's" will not bend the rules for dairy. Ever. Ever.

I did get a special dispensation for occasional... occasional... stealth dairy within a hamburger bun. But that's as far as he'll go. And that certainly won't take you very far with a traditional/standard American Thanksgiving meal.

Now, if you think about Your Basic Thanksgiving Dinner, it's a dairy-delivery system, which uses a variety of meats and starches to keep tastes interesting. Martha Stewart's turkey technique involves (at some point) draping a cheesecloth over the bird and basting it with butter, as it bakes. If you're ever using French techniques, you'll definitely monter au buerre to finish a sauce. Besides using cream or creme fraiche in the sauce to begin with, whether you finish with butter or not. Mashed potatoes? The Joel Robuchon "ultimate mashed potato" recipe is basically half and half potato and butter, and my once-a-pastry-chef brother uses sour cream and butter in his mashed potato recipe. Many basic pumpkin pie recipes call for condensed milk. Topped with whipped cream, of course. Or ice cream. Or both. And of course, there's butter in the crust, no matter what kind of pie you're baking. And let's not talk about the dairy content in cheesecake.

You get the idea... When in doubt, throw butter in it. Thanksgiving is not a good day for "no dairy" diets.

Unless, of course, you have a vegan Japanese restaurant nearby.


Table-side service from a tureen is a very French way of serving, but the soup they were serving was definitely vegan. In this case, kabocha (green-skinned Japanese pumpkin, makes a great soup). There's no milk in anything. But it tastes wonderful anyway.

Even the desert is safe. The "ice cream" is ice something, but it ain't "cream."


With hot cranberry sauce poured over the deep-fried rolls at the right of the plate, table-side. Delightfully French-inspired. But 100% non-dairy. Hooray!

The moral of the story is: Limitation doesn't have to be limitation... if you have fun anyway. Something that we who travel the M.S. Highway need to remember...

Have fun anyway.

Wednesday, November 21, 2012

We are...

Not much to report today... not much incurred to warrant reporting. I spent about an hour and a half at The Machine, sending some scores to Someone (more detail when it becomes available), and that was pretty much all I had to offer.

The rest of the day, spent in bed. Underneath two blankets and a spare pillow, and still cold. This "cold" thing is a within-the-last-couple-of-months "new" development; it doesn't matter what sort of temperature the bedroom is (seventies, currently), my legs are always cold. Period. The cat enjoys my sharing the bed with her, but doesn't contribute any warmth, temperature-wise, at least.

And OH yeah, a killer headache. Woke up at 5:30 AM, banged down some aspirin to help assuage said nasty headache... woke up again at 7, because the headache was worse. Horribly worse. Used one of my wife's favorite migraine cures—green Japanese tea, sencha with just a touch of matcha—which took the edge off, and it has about twelve hours later finally subsided. Mostly. Sort of.

Speaking of pills and times, I notice that I'm currently living in a timed-medication world. Thyroid needs to be taken with lots of water on an empty stomach, and given at least a half hour to do whatever, before anything else is eaten/drunk (besides water). And, pharmacist says, you should take it at approximately the same time of day, every day. As best you can, at least. (Same pharmacist said that birth control pills need to be taken precisely the same time every day, one wouldn't want to need them for [you can guess what] but because you took them too late, your need for their help came when they were "between" active times. He reassured me that thyroid wasn't like that, but probably best to take it at least approximately the same time every day.) Latest set of herbs need to be taken immediately before bed. Handful of magnesium, D3, B complex, and a couple of other things, can happen any time, as long as they're clear of the thyroid and the before-bed herbs. My paternal grandfather was a "handful of pills" kinda guy (mostly vitamins but who knows what else), it's bad enough that I think I look like my father in all of my "Robert teaching" photos, now I'm chugging pills like his father. The pill bottle doesn't fall far from the tree, it seems.

And something for my fellow travelers on the M.S. Highway...

Headache and all, this afternoon I happened upon my favorite moment in the Gene Wilder Willy Wonka movie... a lovely moment, something that I needed very much. Wonka is taking the children around the factory, some Bad Little Child is mouthing off, and Willy Wonka turns her face towards him, and says very quietly and earnestly:

We are the music makers, and we are the dreamers of dreams.

And so we are. Headache, neurological nonsense, or whatever... we are the dreamers of dreams.

And I know they weren't talking about what happens when your condition makes you languish in bed all day.

Tuesday, November 20, 2012

Truth

A day of discovery. Let's take it from the end of the day and back up to the beginning...

Ended the day at the herbalist's. It looks like an interesting formula, he's actually having me take it in capsules instead of just chugging it (my usual method) so that it'll get dispensed further down the GI tract (no fawning esophagus gonna make off with this formula). It smells nice enough, but herbalist said it would taste just awful, regardless of the smell (rhubarb and cinnamon, among other components), so I'm better off in more ways than one with the pills this time.

While I was there, I made some ... interesting ... discoveries about Life In A Wheelchair. I'm test-driving a self-propelled model, just to see how life with it compares against life with the walker/transport chair. Many things about it are actually quite superior (for one, I can move significantly faster in the self-propelled model, since my walking has gotten so crappy and slow). But the first nasty bit: the men's room was one of those "you need a key" doors, and yanking on the door while sitting in a chair with wheels provides highly educational examples of "equal and opposite reactions" but doesn't get the door opened. Or, if it gets opened, it doesn't open wide enough for you to enter. Haven't figured this one out yet... Being able to walk even a little bit means that I get out of the chair and wall-walk my way into the bathroom, and that works reasonably well enough, but I gotta be honest with you, I'm definitely disinterested in the continuous discovery of "ADA-compatible? Not a @#$#@$ chance!" architectural features. I imagine the architect/builder saying about all sorts of thing "Oh, that'll be fine, really." Well, it won't, and it isn't. So there.

Other discoveries, also wheelchair related... earlier in the day, I realized—finally—what was really my issue with the whole "teacher in a wheelchair" thing, in my final year at the high school. Had nothing to do with the "being stuck in a chair" experience. I just delivered two lectures to national conventions, from a chair. I was able to "connect with" every attendee. Being "stuck in a chair" meant nothing.

But in my final year in the classroom, the classroom was shaped (very roughly) like a triangle, with the screen at the base, the teacher's desk on one side of that base. Now, were I ambulatory, I would have found this a fun challenge. People on the other side of the room kinda losing focus? Walk over to them and engage them more directly. Someone in the back row losing interest? Walk back there, engage them directly. Something on the screen needs emphasis? Walk up to the screen and point at it. Poke at it. It would have been a very enjoyable challenge, using that room, ambulatorily.

Oh yeah, one more thing: It's a computer classroom, which means that every single person there is basically hiding behind a screen. All the more reason to be able to walk around and keep the students from being able to hide behind the screens.

Except when you're stuck in a chair, you're stuck in the chair. You can't move, much or sometimes at all. The most I was able to do was drive the chair to the front of the room under the screen and make the students turn the screens aside so they weren't being blocked from me during the lecture. An interesting challenge, one that I met quite successfully... when I was able to wheel to the center of the screen area and lecture. But if I wasn't doing a "just sit there and listen" lecture, I was stuck in a chair behind a desk: and thereby, for lack of a better word, handicapped.

I know you've all had the experience of "Everyone there thought it was fine, but you knew different, it could have been better; maybe much better." Well, that was the entire year. I really do know that I did a good job—a good job, reaching the students, making a difference in their lives. I was told that my students in classess not my own gave shout-outs to me, because I helped them so very much. In the teacher-evaluation assessments, I received some of the highest scores in the entire faculty. I know I did a good job. I know I did really important, meaningful things for my students. But I felt... handicapped.

And I think that today was the first time I really came to terms with that. Spoke the truth of what I felt, of what that limitation had meant—done—to me.

Or at least I began to come to terms with it... I probably need to do more processing on it. But, at least a very overdue process has finally begun.

You shall know the truth, and the truth shall set you free. (A chorus from the gospel musical Celebrate Life.)  I know Red and Courtney weren't thinking about M.S. when they wrote this, but... it is the truth.

And truth will set you free.

So, my friends... tell the truth. Don't be afraid. Speak the truth about what your condition means to you. What the changes you're experiencing mean. What the loss of what you have lost in those changes really means. How you really feel.


And truth will set you free.

Sunday, November 18, 2012

HUGE weekend

The past weekend was huge for me. Huge. Huge.

Last weekend, I made a presentation at the 55th annual convention of the College Music Society. I've presented for this organization before... I think this is my fourth time total, second time at a national convention. It's at least a little gratifying that I can still do doctoral-level, university-faculty-level, research. Original research, on a subject that's either not discussed or even mentioned in the books about this subject, or what minuscule information that is there just plain wrong in said books, because I was looking at actual, physical evidence that next to nobody knows even exists. This is real research. And doing the research, and presenting it, felt good.


Another surprise: This sort of thing wasn't always appreciated by the unholy machine—The Enterprise—and certain people in positions of authority within said machine, at the place where I used to work. They just didn't "get it." Time was, when I'd be truly hurt and angered by this. Nowadays... I don't really care. I did real work, I did good work. If people whose opinions I don't respect anyway don't understand the level of work I'm doing... I don't care, any more. I don't know whether I'm just in a different kind of denial or have actually gotten over the whole thing, but not carrying around resentment does feel good, for its own sake. The audience at my presentation spent a lot of time very evidently enjoying themselves. And that's good enough.

To celebrate, my wife and I went out to a real Japanese restaurant. Real Japanese. My wife an I were the only English-speakers there. It even looks like something you'd see in Japan...


The bad news... that tiny little aisle was not really wide enough for me to use my walker. The good news... the size of the place made "wall-walking" trivially easy. So, managed to make it to the end-of-the-hall bathroom easily enough.

And boy, was it ever worth it to eat there. Traditional, especially very traditional, Japanese is one of the easiest cuisines for someone on a non-dairy diet to enjoy.


Dang, was  it good.

More surprises... I was actually able to do all the driving—all the driving—myself, in my hand-control truck. The long hours of sitting got a little uncomfortable sometimes, and I did have to take a few minutes just to lie down in the bed of my truck (not to sleep, just to lie down "in neutral" for a few minutes), but the drive was doable. We broke it up... drive an hour, have lunch, drive a couple of hours, we're there; on the way back, drive a couple of hours, pick up some vegan pumpkin pie for the next day (which is amazingly good), drive an hour or so. 

And the love and patience of a beloved spouse makes even the potholes on the M.S. Highway bearable.


My wife did a lot of just-plain-pushing of my walker in transport-chair mode. She got more "cardio" than I did, this trip; well, at least I have lost a lot of weight, I am reasonably easy to transport. But I'm sorry she has to do so much transporting and so much of "together" is such a prisoner of "my fatigue may kick in at any moment" or "my bladder isn't going to accommodate that" or "I can't sit there for that long because it's going to be too uncomfortable" or... Thank God she realizes that when I say "I can't because it'll hurt or something will go south," she knows I'm telling the truth, not just trying to not do things that I'm not interested in doing. I always knew I was lucky to have her as a wife, but I had no idea how lucky until The Disease became an unwelcome guest in our lives together.

Well, what's next? I don't know... I'm still in the "I have to do a lot of lying down" mode, everything—everything—takes much longer than I expect it will, I almost fall down a lot, I have to stop what I'm doing and move to a comfy chair or full-on "hide under the covers" hide in the bed. Will I be able to accomplish anything that I want to accomplish—because I'm not comfortable about moving from "want to" to "plan to," I just can't trust whether I'll be able to do anything, at any given moment, even if last weekend, I somehow was able to... There was a lot of stuff I didn't do in San Diego, like explore the (I was told quite colorful and fun) neighborhood of the hotel, like sit somewhere and look at the ocean; besides make the presentation, I did nothing besides lie in the bed. Sometimes, to sleep. Sometimes, just to lie. I guess I feel good about what I was able to accomplish, but about what I couldn't do... I don't know how I feel. I haven't really settled on "how I feel" about the whole "I can't do [whatever]" issues, and Lord knows I don't know how long the "can't do anything, gotta lie down NOW" is going to continue/recur/whatever...

As always... we'll see.


Wednesday, November 14, 2012

Weight and hope

Some quotidian things that some of my M.S.-accessorized colleagues might appreciate. Or even be able to use.

If you leave your "handicapped" placard on the floor of your car, it doesn't count as "properly displayed," even if you look through the windows at just the right angle and squint just the right way and you can maybe see it underneath the whatever is sorta kinda covering it. (This definitely rates as "Duh," doesn't it?) I found a $333 ticket on my window the other day, for just that reason. Oops... sigh.

But the adventure ended just fine. At the police station (I must also commend the staff there, who were wonderfully kind and helpful ), I showed them the form-that-comes-with-the-placard, it was very clearly my placard not a borrowed one to avoid the fine... and like magic, the fine was reduced to a $25 processing charge. Which I was very happy to pay, given the context. Funnily enough, another fellow was in the station for precisely the same reason with precisely the same problem, so I guess it happens more than we might realize. Or would like to admit. And with luck, I won't "just forget" again. Ever.

One thing the officer helping me added, that's definitely worth sharing with you: He warned me that an all-too-typical ticket is issued to people who park on the "hashmarks," the diagonal blue lines that mark the "no parking" areas that are often next to handicapped spots; areas left to accommodate people who have chair lifters or other equipment to help them get in and out of the car. He says they write tickets all the time for just that... but they don't wave the fine for that. "I just forgot" might work for a missing placard, and they'll accommodate that (at least, this city will), but that doesn't fly for parking on the no-parking hashmarks. Ever.

So... driver beware. Driver be aware. (That'll be good advice for me, too; see above under "duh.")

And the search continues for my New Self-Propelled Wheelchair... I found one today that is too heavy for me to lift into my truck, until I remove the wheels (which is easy to do, and they're nice and light) and the foot rests (which is easy to do, and they're nice and light) and suddenly, the chair is unbelievably easy to hoist. I gotta do a little more shopping, but I think I may have found a solution to the Upcoming Chair Need.

But apparently, there's a price, paid in pain in dealing with the Thrall of the Antichrist—I mean the insurance company. The lighter the wheelchair, the uglier the battle becomes to get the insurance company to cover it. I understand how they might not want to provide carbon mono-filament chairs beloved of Olympic chair racers if all you need to do is get around an art museum and have a companion to push you on occasion, but the case to not use "weighs a @#$#$ing ton" and instead get "light enough for an ordinary human to lift into the trunk of pretty much any car" shouldn't demand a Presidential or papal edict. If those would even work. Apparently not, it would seem... We'll see how it goes.

Hope springs eternal. If it doesn't weigh too much, at least.

Tuesday, November 13, 2012

Amazing day

Just got off the phone with an Unbelievably Nice Person. He was wonderful to talk to, he did me a real solid, but that's not why I'm bringing this up...

"A chance meeting, as we say in Middle Earth," as Gandalf said...

Apparently... his daughter has Our Disease, M.S. Just diagnosed, and quite young, too.

Welcome to adulthood, my dear one, you've got quite the adventure waiting for you...

But it was quite amazing... how something I needed taking care of, and someONE who needed taking care of, connected... simply because he happened to call and I happened to pick up the phone rather than letting the answering machine handle it.

What an amazing day. Already.

"The universe is an amazing place. I wouldn't live anywhere else." G'Kar, Bablyon 5

Monday, November 12, 2012

Oils and attitude

Got another new prescription today.

Cod-liver oil.

Doc says I can have any flavor I want, that orange is very popular, and that a lot of people like cherry.

Worst side effect: Bad taste. Ever tried plain cod-liver oil? I have... GAKK. Sure, I thought, I drink nasty Chinese herbs all the time, I've had to cook turtle shells, mulberry leaves and the bugs that eat them. At the same time. Seven-hole abalone. How hard is cod-liver oil to take?

Trust me. It's nasty. Really nasty. Really really really really nasty.

So, tomorrow, I go looking for palatable fish oil, and also ... wheelchair shopping. My insurance company demands "pre-approval" for wheelchairs, and having looked through the HCPCS codes, there are a lot of different kinds of wheelchairs. So I'm going to check out the wheelchairist, find the chair I want, figure out what the HCPCS code is for that particular chair, and then have my doc send that in to the insurance company.

Where people who have never met me and have no idea what my condition actually is will determine whether I "need" the wheelchair. Because, of course, they know more than my doctor does about what I "need." They don't like paying for what I don't "need," you see.

Perhaps you can tell... I've got a bad attitude about this sort of thing. To put it succinctly...

If there is a Hell...


... it waits for the health-insurance industry.

Saturday, November 10, 2012

Convenient

A day spent mostly in bed, under the covers.

A few minutes spent in front of Big Computer... I even tried to Accomplish Something. Instantly ran aground, didn't have it in me to do anything to de-aground myself. Gave up, went to bed.

Spent a few minutes in front of laptop computer, doing Small Edits to a presentation I'm scheduled to give at a Big Conference this Friday. Succeeded in Accomplishing Something Small. Then went to bed.

I'm trying to accomplish this, right now... whether it's big or small, I'll not assess at the moment. But I may very well be able to accomplish it.

I hope.

This "not able to accomplish anything" could become quite distressing. Somehow I manage to visit the local Taiwanese tea shop for take-out lunch and tea. A few days ago, I managed to make it to a store that had electric carts for people like me, and stocked up on breakfast cereal and almond milk (which I recommend).

That's pretty much it, accomplishment-wise.

I'm hoping that tomorrow I'll be able to make guacamole. Maybe go off for lunch... maybe. Maybe.

Poke at the presentation, maybe. That doesn't require too much energy.

Maybe... maybe... I'll be able to accomplish something having to do with sound and music. Maybe.

But I don't have much hope.

Well, at least I don't get "attacks." But this Total Loss of the Ability to Sit Up And Do Things...

This sucks.

I took (for whatever reason) a quick look via the computer at the stuff that's going on at the place I used to work. That I would definitely have been involved in.

There was a flash of grief; memory of bygone days, and how much fun it was. But then, I very quickly settled into "It's ok to not be there. Really. It's ok."

Had nothing to do with being stuck in bed. But it's certainly convenient, right now, for it to be ok to not be in the workforce there. Or anywhere, for that matter.

And... as you can guess... it's the only way to close tonight's posting, with Samuel Pepys famous farewell:

And so to bed.

Friday, November 9, 2012

Useless advice

Sorry to have taken so long to share with you, but as you may have gathered from recent postings, my get-up-and-go has got up and went, as they saying so often goes.

Yesterday I caught the last few episodes of Anohana, a short 11-ep anime series currently only available to paid Crunchyroll customers (you can check out the first four for free, if you're interested).


It's really quite heart-wrenchingly beautiful. The characters have known each other since childhood, they grew up together in a Little-Rascals-esque clubhouse-cum-society. They care deeply about each other, some of them love—or would dearly love to love—one another, and to be loved that passionately in return... but there's way more than enough unrequited love to go around. At some point, we (the audience) realize that every single character is in denial about something very significant, doing their best not to confront what they themselves know they need to confront, but oh boy do they ever not want to confront it. Or themselves. Sound familiar?

An amazing article on Salon.com, "Where is my true path in life," full of noble sentiments like "You also need to be a secret warrior, plotting to take what is yours" and "Inside you is a vital force that is mad with desire to be realized."

Seth Godin's always tought-provoking blog sets forward encouraging words about  "Getting over ourselves."

A multipunch combination from The Universe, offering me, if not all of us, encouragement and challenging us to act.

And somehow... right now, whether maybe I need to hear all this or not, I don't want to even hear this. I just want to be left alone. Because I'll sit up and think about how I'd like to do something creative even, maybe... and then I have to lie down and go to bed. Perhaps then even to sleep, for a while. Hard to get over yourself if you're being sent to bed and pull the covers over yourself because you're so damned cold.

Anime offers encouragement. Salon offers encouragement. Seth Godin offers encouragement. A lot of other people offer encouragement too, but they use the most useless advice ever offered: "Well, just get over it. You really need to put this behind you."

Well, if I could do it that easily, don't you think I would have done it by now? You think this is FUN??? (Actually, sometimes, in a very twisted way, it is or at least is seen as more pleasant than change... but not now. Hardly, now. Not even a tiny bit, right now.)

A perfect cue to launch into a full-blown rage-filled screed... if I didn't need to go lie down and maybe go back to sleep. Which, if it keeps the screeds down, I supposed is indeed a gift of M.S., but... sigh. Bed.

Saturday, November 3, 2012

Anti-motivation

Well, we nearly went down the "falling down" road again today, but this time, feet on a carpeted floor. Plenty of traction. Which is why almost falling was such a surprise. Yes, I was trying to close a skylight, and yes I had both hands on the crank-pole and neither hand on any support, but c'mon, I've been closing that skylight for freakin' years, and falling down hasn't happened yet. Yet. Well, whatever tomorrow may bring... not today.

Made it to two stores today, one to get a favorite breakfast cereal, one which also houses the closest pharmacy (time to pick up another set o' pills). Forgot to pick up something that has been on my shopping list for nearly two weeks, didn't realize that I'd forgotten to get it until I was on my way back to the car, all shopping already completed. Drat!

And something else raised itself to my awareness, as I was leaving the second store... Damn, do I move slowly. Really, really, really, slowly. I was hardly a sprinter inside grocery stores, but man, I used to be able to just plain walk at nearly race-walker speeds. It's no wonder it feels like it takes forever to do anything... all that time is spent just walking... slowly. So slowly.

Not encouraging. I don't think I'm actively "dis"couraged, but FRAK man, I move so frakkin' slow.

Something else I noticed today... I don't think I actually want to do anything any more. Anything. It's really a nadir of interest in living... I don't think it's an easily fixed acupuncture thing; sometimes I get really dark and depressed, and four needles later everything's just fine! But now, I have to prep a lecture (two weeks away), but I don't really care... I have a web site to set up to provide services for people I've always like helping, no motivation there... I have to clean up some music for a guy who wants to publish my work, I keep forgetting to do that and right now, I have no interest...

I just. Don't. F---ing. Care. At all. I'm not "depressed," that's not how I'd describe it, but even saying "unmotivated" suggests more gumption than I feel. Not UNmotivated, ANTImotivated.

I'm going to make myself a hot dog. Take tonight's herbs. That's about all I've got the gumption to do.

Well, I did manage to write a blog post. I guess that's something. I guess.

Thanks for listening.

Friday, November 2, 2012

Since that's the case...

My, my. Things change; things stay the same.

I hit the ground again yesterday. No damage beyond a bit of a scrape, but dang did it hurt. Causes: No traction on my feet (socks on linoleum) and something in each hand (bottle of ketchup and mayo, nothing heavy or awkward, but it kept me from being able to grab for support). Nice thing about socks is warm feet. Bad thing about socks is no traction. So, until new footies that have as much "I can feel the floor" as socks are provided, I'm going to live sockless. Cold feet, but no hitting the floor. That's what blankets are for, right?

What else? Let's see... The ongoing, repeated, never-ending, exasperating conversations with B-san (Mr. Bladder) are becoming ever more tiresome. Here's a typical "conversation"... B-san screams for attention, foreshadowing fountains that would shame the Bellagio.


I make a mad dash to the nearest bathroom and sit down, hoping to forestall a deluge on a Biblical scale.

Nothing happens.

Me: "Well?"

B-san: "What? You want something?"

Me: "I thought you wanted something. Desperately. Immediately."

B-san: "Why are you wasting my time?"

I give up. I stand up.

B-san: "NOW NOW NOW NOW NOW NOW NOW NOW"

I try again. Maybe... maybe... B-san allows a few drops. At most.

Me: "Fine. Whatever. You're done?"

B-san: "What? What's this about?"

Me. "Fine." I give up again. I get up again.

B-san: "NOW NOW NOW NOW NOW NOW NOW NOW"

Last week, I explain this to my doctor, and ask him "What am I supposed to do about this? Just hang on for the ride?"

Doctor: "Well, that's what we all have to do, isn't it?"

Well... yeah.

Since that's the case... might as well find the humor in it, eh?



Monday, October 29, 2012

Custodianship

Lots of time spent "on the rack" since we last chatted. With two exceptions, not a lot accomplished. Unless you count sleeping when you need to sleep as an accomplishment... which, in its own way, I suppose it is.

Accomplishment 1: Attended, enjoyed, survived, the LA Tea Festival. Got some Darjeeling-produced oolong--definitely different from the Taiwanese variety. Got some questions answered about matcha, the powdered tea used in the Japanese tea ceremony. Picked up a new variety of pu-erh, a raw variety, much gentler than the very-processed versions I'm used to.

My wife was very generous about pushing me around in the transport chair, all day. However, she did share that she was not particularly excited about pushing me around a lot (certainly "that much") and if we're going to be doing this sort of thing together, I'll need to provide my own locomotive power. Now, I can still with-the-walker walk, but not quickly, not well (depending on the day), and walking at all causes bladder-activation ... "issues," let's call them. We've chatted about those before, they're not "worse" as such, but they are more fickle, and they make traveling anywhere, even around the house to get a cookie, more problematic. Very problematic.

So, although I do not want to "make the shift" away from my walker to a wheel-it-myself wheelchair, it's probably going to be a good idea to have one available, if my wife and I are going to spend any time "in the world" together for longer than "hobble to the restaurant and sit down." Yes, I can hear the objections: you don't want to stop using the walker, walking at all is good exercise, use it or lose it, and all that. Well, "use it or lose it" translates all too easily to "use it and lose it," where my bladder is concerned. Great. Gotta go shopping for more equipment, maybe... I'll talk to my MD about this when I next see him.

Accomplishment 2: I assisted with the 100th anniversary service of a church at which I used to be music director. Across the street from which, I used to live (sound like Yoda, I appear to). Underneath and inside the organ of which, I spent way too many hours. This church was a huge part of my life, for many years. It's still a nice place, the people are and have always been very nice.

The community is no longer what it used to be; time, change, and the way of all flesh, and all that sort of thing, and it's Just Not The Same as it used to be. Hasn't changed, in many ways; has completely changed in others. And yet, I could see what it is now, what it is no longer, what it has become, and how it is the same and yet different, how it is still "home" but isn't really "mine" any longer, even though the people still love me and I still love them... but it's OK to let it go. Really. It's sad to see it go, but it's OK to let it go. Some parts of it make me very sad to see go, but there's nothing to be done, there are no choices, those parts are just plain gone, and all that's left for us is to make the best of them, because (as the pastors would say), that's good custodianship: make the best use of what you have to meet the needs you have, and meet the important needs first. Period.

And last night, sitting under the moon and thinking about yesterday's evens, I realized... doesn't this apply to the M.S. journey? To our human journey? Things change, whether we want them to or not. Be truthful about how you feel, but also about the way things are, here and now. Be a good custodian; yeah it'd be nice if you could use what you got to make things "the way they were," but that very well might not meet the needs of the way things are, and the good custodian of your treasure will put what you have to meet today's needs, rather than the needs of the past that exists only in nostalgia. And as a spiritual counselor told me once, there are many paths to enlightenment, but "nostalgia" isn't one of them.

But it's hard to speak the truth, sometimes. Especially when the truth is, "Time to let it go."

We're told so often, "Don't give up!" But speaking the truth and releasing the no-longer-necessary is hardly defeat. That's a very important lesson, a very important gift; and I think, a gift that I need to be more open to receive. I received it well, at this recent visit to a home of bygone days... I think there are still a few (more than a few) things that still need to be sent on their way, so I can better travel my current journey. Walker, or wheelchair.

Wednesday, October 24, 2012

Well, we seem to be back to "normal," or at least what seems to be "common." Back to the bound-to-the-bed-for-sleeping-at-no-notice, accomplish-little-to-nothing-because-of-said-sleeping.

Monday I had one hell of a dharma talk from my doctor... it was one of those "necessary"—scratch that, "REALLY necessary"—wicked-long-overdue, completely on-the-mark, but not one scintilla pleasant, dharma talks. I needed it. I deserved it. I am thankful for it! But... I'm still recovering from it.

"Ego reduction" is rarely pleasant. Always necessary, but never pleasant.

I made dobin mushi for dinner tonight. It's a seasonal Japanese specialty, seasonal because it replies upon matsutake mushrooms, which only come out around this time of year. I thought they came out later, but they were in the store last week, so there we are.

I need to start gearing up for two events: A church's 100th-anniversary service, at which I'll be singing in the choir and, it seems, playing the baritone, so I gotta get my lip back for that, and remind myself of how the bloody thing is played... I've got another presentation coming up next month, gotta put that together... and oh yeah, the usual "in the world" things: go to the bank, handle some Money Stuff, go to the oculist's, pick up my computer glasses.

Tomorrow needs to be a full day. If it's like today, I've got maybe two good hours in the morning, and two good hours some other time later in the day. Lots of stuff to do, not forseeing much "awake" time to do it.

Well, if there's one thing the M.S. journey teaches you, it's prioritization.

We'll see how good I am at that, tomorrow.

Monday, October 22, 2012

Good therapy

Wow. Lots of have happened since we last chatted.

Last week, I made a presentation at "Magic and Meaning," an international conference held in Henderson, Nevada (gateway to Las Vegas) under the auspices of the McBride Magic and Mystery School. Participants came from as far away as Scotland, France, and the Netherlands. The photo below features me (on the right) waiting "on deck," as I'm being introduced.


The "Magic and Meaning" conference is something I look forward to for an entire year. It is immensely restorative. And fun. It was full of life-changing moments, often catalyzed by a single sentence.

As to my presentation, and my participation in the conference and related symposium activities, I was very pleased... I managed to hold my current "gotta sleep NOW" phase at bay for two of the three days. The third day, I had to give in a bit to the fatigue—which, alas, has revisited itself upon me since my return home... but still, I made it through the conference. Even made it to a couple of evening events. Which  also, in their own way, offered life-changing moments. Sometimes, a moment of perfect beauty, in a magician's performance... sometimes, the words of a friend... and sometimes an amazing moment, revealed by the turn of a single card.

In summary, my days at the conference... A triumph.

Also while I was there, we took a trip to the mountains just north of Vegas. You'd never expect to find something like this near Las Vegas or the Nevada desert, but it's there. And it's wonderful.



Being in nature is immeasurably therapeutic. There's a difference between "being outside" and "being in nature." Just plain "outside" is nice, yes, and often quite salubrious, but there's nothing like actual nature. I felt... nourished. Restored. Spiritually. Energetically. Yeah, I had to still use the walker or sit in, or be pushed in, the walker in "transport chair" mode. I didn't care. None of that mattered. Just being in nature was wonderful. Is wonderful.

And I recommend that to any, all, my dear readers. Go into nature. Breathe the air. Listen to what it says to you. Listen with your heart. Even if all you do is sit there and breathe... do it. It's very, very, good therapy.

And no side effects!

Except, of course, renewal.

Wednesday, October 17, 2012

Point made

Another HUGE interface with The Real World, yesterday... this time, courtesy the Air Travel System.

Security Theater wasn't more trouble than usual. Fortunately. There were many things I didn't understand... last time I went through, they seemed very concerned that I was using my own wheelchair, rather than one of the airport's, so they spent extra time swabbing it for explosives. Y'know, the sort of places people have long been known to hide explosives... the footrests, the empty bag suspended between the uprights, underneath the seat. Where, to most of us untrained ignoramuses, we'd, y'know, just look, and see that there wasn't anything there, but those highly trained experts needed to run BOTH HANDS over the plastic that was thinner than most windbreakers are, and REALLY REALLY CHECK those pieces of solid plastic upon which my feed rest.

Anyway, so yesterday, I used one of the airport's chairs, thinking that would make things simpler. Apparently not. They were concerned that the SOLID ALUMINUM things that my feet rest on might contain explosives. Or something.

Anyway, the kicker was not Security Theater, but someone from the airline. I had a "preboard" pass, I'm sitting in a wheelchair, an airport-provided wheelchair with one of those bright-red eye-catcher back-handles and all, and he says to me, "Can you go up the stairs?"

My first thought was to say, "Dude. I'm in a wheelchair. What do you think?"

But instead, I said, "If there's a thousand-dollar bill with my name on it at the top of those stairs... yes. Yes I can. If not... you're gonna have to use the lift."

Point made without rancor... and I think he realized precisely what he had asked, and of whom he had asked it... and I don't think he's gonna ask that ever again, of someone in a wheelchair.

Although, you gotta admit... the thousand-dollar bill would be pretty cool, wouldn't it?

Saturday, October 13, 2012

Gentle

I'm clearly in a "new phase."

The "lie down and listen" phase.

Sounds Zen, don't it? But no. It's "lie down, put a cloth over your eyes, let your iPhone play a favorite cartoon which you've already seen time after time, and maybe go to sleep. Or not. But definitely don't read anything... just listen." Reading doesn't cut it, when it's Lie Down And Listen Time.

Now, this morning, I did that, and was able to get up and actually do things (like this). Couple of days ago, not so much... it was very quickly Lie Down And Sleep. Even more inconveniently, it was get up, eat, make tea, and then go to sleep RIGHT NOW NOW NOW NOW.

Does it mean something? Well, what did M.S. mean to begin with? Nothing. So, this means nothing, too.

I wonder if this is what relapse/remit is like? I don't have that, never have... but certainly, I also didn't have "got to lie down and sleep NOW NOW NOW" before, either. This certainly doesn't fit in to the category of "attacks," at least that I've heard about.

And, even if it is, for an "attack," it is pretty gentle.

Which, I guess, is the way we're prefer to get "attacked" by disease. Gently, kindly, painlessly. "Lie down and sleep" doesn't get much done...

Except, y'know, recovery. Which may be at the bottom of things what it's all about... we'll see. I hope.