Wednesday, February 27, 2013

Bloated nothingness

My five-element acupuncturists are very earnest about addressing all three of body, mind, and spirit.

I'm starting to think my M.S. experience is traveling in, is exacerbated by and relieved by, addressing those very three things.

At my last acupunturing, I told My Guy about the inescapability of the "I gotta sleep now now now now now," and he said that this in particular is due to a very five-element-acupuncture-treatable condition.

And he said that this particular expression of this condition he could relieve with a few needles, but to keep it from coming back (which it has been doing, pretty much weekly), it needed to be eradicated by releasing my conflicts.

So I did some pretty intense "inner work" trying to find the root of these conflicts, and I don't know whether I nailed "it"--big-letters IT--but something leapt out. A truth that needed to be spoken. Not "to" anyone; but I needed to speak it. The saying of it was an "inner commitment" to that truth. Kinda like a "confessional" experience, a truly, truly, acknowledgement of this truth. (Which, just to close the loop between us here today, was very, very, true.)

Today, I've had a couple of "I gotta lie down and close my eyes" moments, but they didn't last long. One of them required a small bit of napping, maybe 10-15 minutes at most. And then, at some point, I realized... I was fine. I could get back to what I was working on, at my computer.

There has been This Project sitting metaphorically on my desk since last... May, I think it was. It was a piece I really really really wanted to write... and since May, I've basically been a prisoner of fatigue.

Today, I wrote more, and wrote more intensely and quickly, than I've written anything in years. I'm coming close to "I think I'm actually finished with this movement"--sure, I need to fine-tooth-comb it, swabbing for "oops-es" and the inevitable "WFT was I thinking?!?" that intrudes itself into any creative project, but... I'm further along than I thought I was ever going to be. And certainly, much further along than I had expected to be in only ONE day.

So, friends, M.S. or not--but especially my fellow M.S.ers-- time to give full vent to the "I can" that is still in our lives, untouched and untouchable by neurological nonsense.

As Emerson said, "Let us take our bloated nothingness out of the divine circuits."

(And OH boy, I had NO idea how bloated my nothingness was. MAJOR bloated.) And one last thought, to end today's submission:

"Let us unlearn our wisdom of the world."

Tuesday, February 26, 2013

Interesting... but (and) wierd

I'm thinking that I'm starting to see that there are many flavors of "can't."

One of the biggest, most immovable "can't"s is That Just Doesn't Work Any More. My feet, for controlling the pedals of an organ, for example. I can barely open the lid of the kitchen trash can... y'know, the "use your foot to push down the pedal and the lid pops open" kind of trash can. I can't put and then keep my foot on the pedal, I can't control it enough to really push it down. Eventually, I get the lid open, but ... that kind of "non-precision, non-operational" just won't cut it for an organ. Or a drum set. Or the damper pedal on a piano. Pretty much any instrument that requires the use of feet/legs, that part of the instrument, I just can't operate. Because stuff just doesn't work any more. (Yeah, heah, I know M.S. disabilities have been known to just up and go away, but as far as I can tell, for the moment.... nope. Doesn't work any more. Now, at least.)

Just plain "standing" is hard, certainly "standing with something in both hands" or "standing without using one of my hands specifically to keep me from falling over," and doing it for any length of time at all, just doesn't happen. I can brush my teeth without falling over, I can wash out a cup or a bowl. That's about it. And I do a *lot* of grabbing at pretty much everything, because the "and... Here we go, I'm falling over!" comes over me with no warning at all.

Oh, I could go on for longer than anyone would ever want to hear the details. (Including myself.) There are a lot of "can't"s. They range from "can't today, but maybe can tomorrow, who knows?" to "can't today, and probably won't be able to for the foreseeable future, including 'ever' " and "Can't. Just Plain Can't. Don't ask me to 'just try,' and please waste your time asking ever again. Can't."

"Can't today" comes and goes. "Probably can't tomorrow, either" doesn't tend to wander on and off, and "OH boy, I sure can't, don't waste your time asking" definitely doesn't leave.

But although "can't" screams for attention and sympathy, "can" is just as clearly illuminated.

I still can write music. Sometimes the "music writing" ability gets pulled under the "Can, but not today" umbrella, but only briefly, and when the "got to go to bed now now now now" goes away or is removed, "can" becomes very clear.

And yet, "can't" is what gets all the attention. When the "but not today" is off the table, and "can" is strong and easily reached to hand, why doesn't anyone notice? (Forget that, why don't I notice? Find solace? Care?)

Especially when I look back at all the things that have been taken from me, thank you The Disease and my concomitant issues, I've got to admit, some of them fall into the category of "Well, to be honest, it was time to let that go anyway" and at least one of them fits under "Dude, it was past time to let go of that—to get rid of that." Which means that now things fitting into "that needed to leave anyway" have gotten out of the way, the things that fit under "I still can" have finally been given room. Which means that, in some ways, I'm... better off, having M.S.?

Well, actually... I am. And that's just plain weird.

Interesting... but weird.

Interesting and weird.

Friday, February 22, 2013

Lurking "perfect"

Life in a wheelchair is a deluge of "Well, THAT was interesting" moments, which are gifted us by the most ordinary of things...

A door. A wall. The floor itself.

Things that before we were "accessorized" we never really noticed, even though they were RIGHT THERE IN FRONT OF US ALL THE TIME.

And somehow, when we're "limited," we begin to see things that were always there.

In ways that we had never seen them.

And something else I'm seeing all the time, with "new eyes," as the saying goes... is how Boy, Things Have EVER Worked Out Just The Right Way.

"But you've got M.S.!" I hear the cries. "How is that 'working out' the right way'?" Yeah, let's leave that precise question for a moment; in the meantime, here's what I'm seeing...

The street that abuts my property has a lot of lovely houses. Lovely houses. Multi-storey houses. I used to live in a two-storey house.  I enjoyed having, and going up and down, stairs. My wife and I, on a lark, went through some of the neighborhood homes when they were for sale and having "open houses." We loved them. We sighed, and wished we could have bought them. But we didn't.

Damn, I'm so glad we didn't buy them, or anything even remotely like them. My current house is completely flat. Completely. Five steps in the front, two in the back. Still very doable, once or at worst twice a day.

Two owners ago (in my current home), the homeowner converted the garage into a storage facility for his four boys. With its own bathroom. The bathroom is kinda small, the sink unit is a little large for the room it's in, one might call the bathroom even a little "cramped." I had, years ago, contemplated rejiggering the sink & a few other things.

In my current state, it's perfect. I don't need to get bars installed, everything is already there, in just the right place, nice and strong enough and very, very easy to get around.

And that's just one example. Looking back on my life, I see example upon example of "It was perfect that you got that job, precisely at that time" and "It was perfect that you left that job... maybe you should have left it sooner, but dang, if you look at things now, you sure got out of there just in time!"

And now, here I am with M.S. Right now, this particular day, I seem to find it very hard to leave the bed 'cause I've got to sleep more now now NOW!

And yet, everything that has happened to me so far, when I look back at it, was... perfect; everything happened precisely that way, precisely at that time.

How then, can this M.S. experience turn out, in the fullness of time, to have been anything less than... perfect?

Time will, of course, tell; as time always does. But, even so, pissy annoyances and all, I can see the "perfect" lurking in the shadows...

Maybe, even, in the light.

Wednesday, February 20, 2013

Here we go again

And here we go again.

Not back to Texas... back to the world of "Gotta lie down and close your eyes, and maybe go to sleep. Now. Now. NOW!!!!!"

Ah, it was such a nice dream, to get up and start writing music again. Well, I did manage to get up and put a couple of things on SoundCloud. But that was it. And then, back to bed.

I made it to the vaguely-local dim sum place for lunch, and drove to the oculist to get my glasses adjusted. It was nice being in sun, warmth, and air, but it was a little tricky.

We'll try the "leaving the house" thing again tomorrow, because I have to visit a couple of banks, and go to the oculist again (unfortunately, because the person who said she was going to adjust my glasses got the lenses right but made the right earpiece dig in kinda nastily).

Somehow I made it through the Texas adventure without having to flee back to my hotel room. Barely, sometimes. But now, that I'm back home... I'm trapped in "gotta go to bed."

Is this an attack?

Who knows. And even if it was, or if I knew, would it matter?

Prob'ly not.

Wonder how long it's gonna be before I gotta go back to bed?

Who knows? Which is, of course, par for the course for the Neurological Highway. And, y'know... life.

Well, at least I had the strength to do a little blog-tweaking. And, because I've gotten some requests for it, to make one last visit to TMEA, here's a recording of their amazing performance of my music by the All-State Choir:

Tuesday, February 19, 2013

TMEA, part 2

It has been a while since I talked (typed?) about physical stuff, and there were plenty of "physical" issues in my trip to San Antonio, so... here we go.

As those of you who've read me before probably remember, one of my Medical Team has put me on a "no dairy; sixty-five underlines under 'no' and 'no means no' forever!" diet. Even in multi-cultural Southern California that's tricky enough when you're not in a very other-culture-proud-and-powerful community... I mean, c'mon, they put dairy in hot dogs. In potato chips. It's even listed as an ingredient in spinach salad sold in a Japanese market. Lord knows dairy is in anything even vaguely French or Italian, let's not talk Latin-American cheese-in-EVERYTHING dishes. So, unless I'm hanging out in my regular haunts in the Japanese or Taiwanese or Shanghainese communities, I'm pretty much SOL where it comes to "dairy free."

San Antonio is many things, but a multicultural hotbed, it ain't. So, fun though the convention was, there wasn't a lot of eating being done. Since I pretty much don't feel hunger any more, at least I don't suffer "more" from not being able to eat much, but snagging a lunch of nuts because they've got protein and are immune (mostly) to stealth-protein addition, that ain't what I call "vacation fun."

The wheelchair was a constant source of "well, isn't that interesting" discoveries. Lets see, in no particular order, a few of those discoveries:

  1. Anything touted to be "handicap accessible" almost always isn't. Including, unfortunately, public places. Like streets.
  2. Wheelchairs don't like thresholds.
  3. Wheelchairs don't like doors that push against them. They especially don't like doors that push so hard, their "pilots" can't both open the door and position the chair so that it can move through it, much less actually push the chair through the door.
  4. Most doors are too narrow to move through. Even doors to "handicap stalls" in bathrooms.  At least one stall in an airport was almost too small to get the wheelchair inside, and was definitely too small to put the chair somewhere from which you could easily transfer out to the toilet. Many, many "well isn't that interesting" adventures getting into/out of bathroom stalls, much less doing the whole "transfer" thing.
  5. The bathtub in my hotel room had an almost-long-enough bathtub, and I figured what the heck, it has been a long time, let's try it. Well, it definitely wasn't quite long enough to really relax, but it was a good experiment. I kept my head out of the warm water, and my torso/core (per my MD's recommendations) and just let my legs soak. A very interesting conclusion: My muscles loved it. My nervous system, not so much. (Carnival of M.S. Bloggers #133 has some interesting thoughts about that.) I was nearly unable to control my legs enough to get out of the tub. And here's the really interesting bit: My muscles felt "improved" for several days; the change faded away as time went on, but my muscles definitely felt better for having been so wonderfully warmed. The nervous "degeneration" also ran for days... fortunately, my nervous system recovered faster than my muscles started aching again. So, at least the "benefit" outlasted the "cost."
  6. "Handicap-accesible" hotel rooms vary in the helpfulness of their accommodations of our handicappedness.  The rails on the walls of the tub/shower stall? Really really helpful. Rails to help you get into and out of the shower? Not there; I had to grab all sorts of odd things and hope for the best. Fortunately, "the best" is all that happened, but not like it didn't get really close to less-than-the-best happening. And the toilet? No rails, no NOTHING. How I got up and down and around that, I still have no idea. But as helpful as the shower rails were, there weren't any other rails, and I was pretty much on my own. Completely.
The number-one hardest-to-explain lesson I learned from being all by myself for about a week with only a wheelchair for any sort of transportation (not counting the occasional cab ride) is that any exchange that begins with someone saying "Oh, I'm sure you'll be able to make it, I'm sure they have stuff that'll accommodate you," can only be followed with "We don't know that. There's no way to know that. I won't know that until I get there." 

And that last bit is very hard for me. Because I don't want to spend the time and energy to go somewhere completely by myself that I know I won't be able to manage without help, and I see no point in going somewhere to discover "You're alone? No, they can't accommodate you. You're screwed." Especially if you're really screwed and can't backtrack (for example, taking a long jaunt to find that the last 10% is impassible, which means you have to then turn around and repeat the first 90% without having had any fun at the end of the trip). Or worse, if like a lot of San Antonio looked like it was going to do, getting halfway there would take you directly to "stuck." And worse, "stuck in every direction." So you're not only stuck, you're not getting un-stuck enough to go back the way you came.

So, what am I left with from this experience?

Going somewhere new and flat, that's been built recently enough that you KNOW it's very ADA friendly, or that has to accommodate a lot of all sorts of stuff getting carted around, like the Convention Center and attached new, modern hotels? Safe! Local "color" spots (we won't even talk about the spit-take-worthy name "RiverWALK") that are old and quaint? Don't waste your time, unless you have a pusher. You're getting stuck... somewhere, maybe everywhere, all-sorts-of-where.

And you won't know what you're going to get until you try it. That's not the "control freak" talking; I'm not a control freak. I just have only so much energy and so much strength and I've been stuck places that weren't all that bad, but being stuck and unable to do anything about it is no fun. At all.

And on the Neurological Highway... you want all the fun you can get. And you especially don't want anti-fun. "Normal" is hard enough as it is.

Monday, February 18, 2013

TMEA in review

Well, I finally made it back from the TMEA (Texas Music Educators Association) conference in San Antonio, Texas. A whale of an adventure, it was... and given how big they do everything in Texas, calling it "a whale" of something doesn't do justice to its size.

Not just "so many experiences," so many layers of experience. I think I'll approach them one layer at a time... otherwise, this entry is going to be the size of Texas, and take as long to journey through.

The first question in many minds is sure to be "What the @$# were you doing in Texas?" Last year, some kind and enterprising souls approached me because they wanted to perform one of my pieces at this convention, would that be alright? If you heard the words "hell YES" echoing through the land, that was me answering the question.

It was performed by the All-State Mixed Chorus, and the University of Houston Symphony Orchestra, conducted by Dr. Brad Holmes of Millikin University. For those of you (like me) who are unfamiliar with the Texas "All State" nomenclature, it basically means "the best of the best of the best." The chorus of five hundred who performed my work were winnowed down from a sea of 14,000 applicants, drawn from schools across the entire state. And dang, it's a big state.

The performance was totally cool. Awesome! As they say on Adventure Time, mathematical! I'll share a recording of the performance as soon as I can get my hands on one, but dang, was it amazing. You know those videos of meteors exploding that have been hitting (as it were) the web recently? Imagine something not crashing down and burning, but shining that brightly but ascending, straight up into the heavens... and that's what the performance was like. And even that doesn't do it justice. It was... amazing.

A photo taken just before my piece was performed. And come on, look at the size of that choir!

But as amazing as that concerts, and all the concerts at this convention were, what was most amazing was something that no Neurological Nonsense could ever impede, or impair, or effect in any negative way.

All those young people in this choir, and performing in every concert, were there to sing their Heart Songs. To make beautiful music. To join others in the making of beautiful music. And thousands--thousands!--of teachers, each of whom has a Heart Song that wants to sing to young people, to show them how to work together and become the best they can be at making beautiful music.

A lot of Us Old People were in powered scooters. I was the only one in a self-powered wheelchair, but I wasn't the only one who spent the entire conference seated. Many, many, many canes and crutches and walking-assistance devices of all descriptions. And none of that mattered. What mattered was that a teacher touched the heart of a student, and that those students reached out to one another and their hearts touched, and then all those hearts joined together in making music and touched the hearts of everyone who heard them.

With the power of all those hearts, with the sound of those Heart Songs making heaven and earth resound with their beauty... multiple sclerosis has nothing. IS nothing.

So, lesson one of TMEA... F---k this disease. It is nothing. Nothing. Sing your Heart Song, whatever that song may be. Touch another heart, and sing together.

Worry about the details later. Don't worry about the nonsense at all. Especially the Neurological Nonsense.

Just sing.

Friday, February 15, 2013

What goes around, comes around

Still hangin' in San Antonio, with TMEA. I heard, for the first time, what "all state" means.

Oh. My. God......

The "All-state Mixed Choir" is performing my piece, "Hodie." Three-hundred-PLUS singers. "Outstanding" doesn't even scratch the surface... they are SO good. I can't wait to hear the performance, which will happen tomorrow afternoon. I didn't have the mental acuity to remember to snap a rehearsal picture with my iPhone, I was so completely blown over by their sound.

Other amazing things I learned today...

I still love high-school kids. They still love me. We don't know each other, but we get along great. Hanging even briefly with them was the best "treatment" I could have had, and was itself worth coming to Texas.

And oh yeah, they wanted my autograph! I am The Composer, after all, but I was touched and blown away by their kindness and their praise.

After the rehearsal, on and off throughout the day, I chatted with various adults at the convention. Music teachers are all alike. They all think the same way, they all have amazing ideas about helping their students, they adore their students, we traded a few "tricks of the trade."

And they don't like administrators who have no idea about what they (the teachers) do, or who think they're "solving" a problem but are actually creating one. Well, as a friend of mine who lives in the world of State Politics very wisely reminded me, people--everybody, no matter what their position--only solve their own problems. Or at best, only solve the problems they're aware of, and their proffered solutions match their understanding of the problem. Whether that's a correct understanding is, of course, its own problem.

I spent some time this afternoon with a Yale classmate of mine, who lives (somewhere) here in San Antonio. We didn't make it down to the river, but we meandered about in part of the Cute Touristy Zone. She told me that the city was improving the handicap-access ramps at curb corners, and she took me up one of these new ones... and they're definitely better. Much gentler ramp, and less-steep incline equals kindness to wheelchairs. The difference was immediately evident when the ramp at corner A was new, but the ramp at corner B was not.

Wandering about all by nyself in the wheelchair in this unfamiliar place has very much driven in the "people don't solve problems they're not aware of" truth of handicap "access" features. Can I make those quotation marks big enough, around "access," to make my point more intensely? My dad reminds me that I haven't been a wheelchair-ist for that long, he says that once I build my wheelchair muscles everything will improve, but even though I agree with him that using muscles builds them, I don't know if there's anything that mere strength can do about thresholds that are too high, doors that are too narrow/heavy/push back at you/all three at once, and ramps that are too steep, and potholes that cause the chair to stop short, or tip over.

That last of which hasn't happened yet, insh' Allah, but M.S. being tragicomic as it is, I figure it's only a matter of time. But being completely alone in a wheelchair, even when you can sort-of walk for sort-of-tiny distances, is definitely quite the ... oh, let's be kind. Challenge.

Have people I don't know offered to help, from time to time, opening doors or even pushing me up ramps? Yes they have, and bless them for their kindness. Would it be convenient to have someone available to help me more frequently/less sporadically? OH yeah. But if the kindest thing I can do to especially my wife is to not be an invalid, I'm going to do my absolute best.

Because what goes around, comes around. Even if it's "coming around" in a wheelchair.

Thursday, February 14, 2013

Chair adventures

Cue George Takei saying  "Oh, my..."

I'm writing to you from San Antonio, Texas, in a hotel very close to the Riverwalk. I'm attending the Texas Music Educators' Association annual conference.

To give you an idea of just how big TMEA is... although I'm sure that every last member is NOT in attendance today, nor that every member who is in attendance is going to hear my music performed Saturday (which is why I'm hear, to be at the performance), TMEA has 26,000 members.

Twenty-six thousand members.

Why yes, it is a big organization. No pressure, bein' a composer whose work is being performed by an All-State choir.

I'll share more about that after it happens. What has been interesting, though, from a "daily living" point of view, has been navigating in a completely foreign city, and in a flopping HUGE convention center, in a wheelchair, for the first time. Completely alone. My wife is in a show which she'd have had to cancel had I demanded she come, and I thought "Hey! It's an adventure! It's worth the experiment, let's do it--I'll go by myself, let's see what happens!" So we were both completely happy about me taking it on, on my own.  (Plus, I'm sure the director and cast of her show are quite relieved that she's going to be there for this weekend's shows, just as planned/hoped for.)

So what have I learned, so far? Well, a few things...

  1. When you're driving the wheelchair, flat is your friend, and a ramp of  too great an incline might as well be a wall.
  2. Being able to sorta kinda walk--which is to say, to be able to get around short distances with help from walls/chairs/pilasters/whatever, to be able to get out of the wheelchair and still function, for a short distance--is a Godsend. So. Many. Problems. Are circumvented instantly, when you can get out of the chair for a couple/three feet and move the chair around the obstacle.
  3. Wheelchairs mean you can't carry things in your hands. Obviously... one hand to carry something, or maybe two, and then two hands to push the chair around, just doesn't add up to "you only have two hands." Some sort of bag, at the back of the chair, around your chest, or between your knees, is a must. However, the Wheelchair Place warned me that if you overfill the back-of-the-chair bag with stuff that's too heavy, you run the rist of being pulled over on your back. "Turtleing," as the Mythbusters might call it. Very bad.
  4. TMEA was a huge convention. Having somewhere to sit, no matter where/when/how you go anywhere, it a lovely thing. The price is, your arms do get used a lot. A lot. Or, in another word, "constantly." As constantly as your butt gets to rest comfortably in the seat of the wheelchair.
Now, they did have motorized scooter/chairs available for rent, but for some reason, I said "No, dammit, I'm doing this myself, that was after all part of the point of coming here by myself," and so I didn't go in for motorizing. I ... think... I'm glad I did that. That was, after all, part of the experiment.

Tomorrow, I have to be across town in time for the rehearsal, and then again Saturday to make the show. I'm going early both days to make sure I've found the right concert hall... the convention center is pretty @#$#ing big, and it takes a while to get around, even if you're doing it on your own feet.

So... the adventure continues! Stay tuned to hear more about Our Hero and the Convention as the news happens! (And I have the strength to type it in.)

Wednesday, February 13, 2013

Problems and priorities

So I'm sitting at my computer this morning, trying to take care of some business preparing for The Big Trip to Texas, where I, and my wheelchair, are going ALONE to this Big Convention. I'm leaving home in about a half hour from the moment at which I'm writing to you, right now.

And I'm thinking... oh my. This is big, isn't it? Yes, it is. For me, at least.

And then this call comes in from a very dear friend of mine, who's calling me from Kenya.

He's in the midst of trying to get a couple hundred people to work together on getting more water to more people... which couple-of-hundred-people that he's assisting are not (from what little he told me) used to working together, or even talking to each other.

Then he's hopping a plane to Nairobi. He's got something else on his "to do" list.

Then he's hopping another plane to Amsterdam... and from there, yet another plane back to New York City,  from where somehow he's got to then get to Rhode Island. Using whatever transportation can make it through All That Snow.

In an unrelated adventure, he's also in the midst of applying for This Other Thing (thin feeble empty To Do lists are not among his problems). He wanted to upload some pictures to assist the application process, but he was worried that because he was submitting them later this weekend rather than "today," the recipients might wig out at that material's "lateness."

I told him to tell them, "This isn't an 'excuse,' it's a 'reason': I wasn't able to upload them on this date because Kenya is having a hard time getting water to people, and that's what all their attention is going. Decent Internet connections are not a priority. When I did upload them on this date, I was in a completely different country, which has no problem getting water to its people, so they have plenty of time to spend on providing decent Internet access."

And I further told him, anyone who complains about "lateness" after seeing that reason... is a dick. And everyone else will know it. So don't worry about them.

And here I am, leaving only for the far-away land of... Texas... in about a half hour. And I have a cadre of assistants all lined up to whisk me to, and through, the various airports and eventually to my hotel. Where there will be, I'm quite sure, plenty of electricity and water. And Internet. And... everything.

The problems that we have, no matter what they are or who we are... are the problems we want to have. Because they're perfect for us, here and now. And... we can deal.

We can. Because the Great Machine of the Universe has picked them specifically for us. They're a gift, selected specifically for us, here and now.

As Corrie Ten Boom quoted her sister in the concentration camp... Thank God, even for fleas.

Monday, February 11, 2013

Can't trust my...

I keep learning new things about carrying stuff in my lap while I'm "motoring" myself in the wheelchair.

Mostly about how "You can't do this, this way." And I learn it the hard way.

Also, all too often, the messy way.

Now, the standard "supermarket hand-carry basket" is fantastic. Fits easily between the arms of the wheelchair, does nothing to get in my way while I'm pushing myself along. Things go in the basket easily, they never fall out.

The problem happens when we're at the "take the bags out to the car" point. Bags always... always... fall out of my lap. No matter what I do.

I got, and tried, this cute little "wheelchair helper" thing that fits easily in your lap, has some beanbags affixed to the bottom so there's a little give-and-take against your legs. A strap goes around your waist so the object can't slide out of your lap. Everything sits quite nicely on this flat surface, and thus doesn't slide out of your lap.

At least, that's what it says on paper. Doesn't work. Things still slide out of your (my) lap. Doesn't matter what said things are sitting on, it isn't good enough. Stuff is definitely going to slide off.

Restaurants tend to give you a plastic bag, with things sort-of stacked properly. Except not really. Well, they stacked easily enough when the wait-person filled the bag, but if you set it on anything, it falls over.

The only way I've been able to get things to my car without having them hit the floor is to carry them in my teeth. Which my dentist would, I'm sure, not be sanguine about me doing... ever.

And, to add insult to injury, while I try typing this and occasionally resting the keyboard across my lap, it falls off. Every time.

Y'know... We have so many body-part, body-system, non-compliances, on the Neurological Highway. My legs have failed. I can't reliably open a trashcan by pushing the "open" foot pedal, I can't control my foot enough to put it on, to keep it on, said pedal, or to use my foot to depress the pedal under enough control to open the lid. My elimination system can barely be controlled and definitely can't be trusted. The list could go on, and on, and on... and fortunately, for your sake, dear reader, it's not going to. Not right now, at least.

And now... I can't even trust my lap.

Ya gotta laugh, at these things. Or else, we got nothin'.

Friday, February 8, 2013


Looks like I'm gonna have to change my shopping destinations.

Very, very near my home, is a Vons, and not that much further a perfectly friendly Trader Joe's, which has recently remodeled itself. Both of these places are quite wheelchair-friendly.


The Vons is having some construction for the next few months (the area that's getting rebuilt used to belong to the Helms-bakery corporation, which those of a Certain Age will remember), and the parking spots that were ever-so-wheelchair-friendly aren't available, for now. So, they've lost four handicapped parking spots, plus a lot more of them that weren't placard-restricted but were nevertheless very accessible, and the parking lot that is available is sorta-kinda up a hill from the store. And yeah, I know, the more I'm in the chair the better my chair-pushing muscles will get, but I'm not there yet, and sometimes (like these days) I'm feeling not particularly strong. So, to make a long story interesting, I wonder whether I've got to go to a different basic-grocery store.

The Trader Joe's problem is also a hill, between the door to the store and the parking lot. It's about a 25 or 30-degree slope; doable with a walker, but not a wheelchair. Fortunately there are a few other Joe's around, but their parking lots are even less friendly for cars; friendly for me in a chair, fortunately, they are. And that's one of the two cardinal rules of Trader Joe's shopping; the parking lots suck, and whatever it is you came there specifically to get, they don't have today. I've only been to a couple of TJ's that didn't have full-suck parking lots; Monrovia, California; and Henderson, Nevada. Both are too far away for casual, quotidian shopping.

So, two favorite and otherwise-fantastically-convenient and close-to-home stores, I can no longer frequent, because they're wheelchair-unfriendly when it's time to leave. Oh, they're easy to get into. But to get back to your car once you leave the store? You have to go up a hill. You're hosed.

And, to add to the "fun," I appear to have caught some sort of throat "thing," some sort of vaguely-actually-sick thing. I've got a kinda sore throat, and the whatever-it-is sickness thing is starting to sink into my lungs. I used to get a classic Chinese disease pattern called Wind Heat this time of year (Wind and Heat being two of the Six Pernicious External Influences) when my throat was dried out by the heater and not enough moisture in the air in general, and a couple of days of Yin Ciao would get me through it very quickly. And, by the way, the "king herbs" of the Yin Ciao formula, forsythia and lonicera, are at the heart of the health-craze-medication "Airborne." (Yin Ciao is better, at least for me, I've tried both of them.) But this time, whatever it is, it's not Wind Heat. It's something else. Oh well, I'll be seeing my herbalist Monday, I'll see what he says.

Great. I spend years and years surrounded by hundreds of adorable disease vectors, which stint included another flu-of-the-century scare a couple of years ago, and I catch nothing from them. Now, I do pretty much nothing besides sit at home, often lying in bed, make the weekly run to the doctor, and the occasional visit to a Taiwanese tea emporium, and I get sick. It's not "the flu," fortunately, but it is quite definitely "sick." Maybe. I think I'm sick. Maybe.

"Is that fair?" I hear someone ask. Oh, let's not go there. Besides, as one of the characters in Babylon 5 said, "Just think of how horrible a place the universe would be if it was fair." A place where everybody, including you, got what they deserved.

The universe we got will do fine, thank you very much, M.S. and all.

Thursday, February 7, 2013

Alchemy; appointed tasks

People are changing.

I see it in colleagues, friends, and family. Sometimes, I'm sorry to report, for the worse; but those are the exceptions. The amazing bit is, that some--many--most, even--are changing for the better.

And not just "better;" they're changing substantially. Conventional turns of phrase would call it a "quantum change," but my physicist friends would probably grouse at that term. Rather, I would say, they are changing alchemically. Like changing lead into gold.

I see people becoming themselves. Yes, of course it has something to do with "what they're doing," but  it's more of a cooperative becoming/doing thing. These people have started doing what they need to do. What they were meant to do. What they were born to do.  What they're here on this Earth, in this reality, to do, with/for/among us. And in this transformation, they're becoming so... amazingly... radiantly... beautiful.

Now, what is one of the first things we M.S.ers learn, once we "join the neurological club"? You only have so much control, so much energy, so much... everything. Do what's most important, because you've only got so much to do it with. Choose carefully, because how you spent your fortune of time/energy/life matters very much... because you have less of it to spend than you think.

I know I'm starting to sound like a Victorian sundial (the era in which sundials that used to read "I count none but sunny hours" started reading "It's later than you think"), but we M.S.ers learn very quickly and sometimes very painfully, that every moment matters. My kyudo teacher, who is becoming a Zen monk (if he wasn't there already), teaches that there are no "unimportant" moments; walking up to the shooting line is as important as shooting, and cleaning the dojo before and after practice is as important as, if not more important than, the practice itself.

And I see more and more that we have a "thing" that we must do; because that's why we're here. To live in the moments that we live in, and do the things that we must do. That's why we're here, and that's what we're here to do.

And I see very beloved friends who have through other means come to that very same realization by traveling non-neurological roads, and they look great. Leading lives that many people would think would be tough and debilitating, they just keep looking better. More beautiful. More radiant. They are, as a friend of mine says, "spreading the shiny." Which to her thinking, and to mine too, is also what we're all here to do... to spread the shiny.

And blessed indeed are those who have found the road they are meant to travel. (What/who decided what they're "meant" to do? Not my problem; way above my pay grade. But when you see their faces, you can tell... they are indeed doing the things they're meant to be doing.)

As Galadriel told Frodo, "This task was appointed for you. If you cannot accomplish it... no one else can."

So here I am, neurologically "enhanced." I've been separated from the life I thought I was "supposed" to lead, that I very much enjoyed leading. I can't play the organ, timpani, drum set, or stand behind instruments in a percussion section; I've said farewell to the job as a high-school teacher at a place where I always imagined I'd die, Mr. Chips-style; indeed, I've said farewell to the entire "working world." I enjoyed that life, and that road, as filled with potholes as it may have been; but that road, clearly, was not my road.

And yet, I feel like this is the road that was appointed for me. I've been separated from the things, comfortable as they might have been, that kept me from this road, the road I've been appointed to travel. And now, being freed to travel it, it's time for me to travel it. With a wheelchair or whatever other assistance may be required, if that's what it'll take.

So this is indeed a gift of M.S. This is the road that was appointed for me. My doctor/acupuncturist/spiritual advisor/friend told me years ago, "You were supposed to get M.S." Well then, what am I supposed to do, now that I'm on it?

That, of course, is precisely within my pay grade. That is my task. And that...

I'm still working on. At least I know that I need to be looking for it, and that's the first step (if you'll forgive the locomotive metaphor) But, and this bit is very, very important...

I need to keep working on finding it. And then, finding it, really discovering what I'm meant to do... to actually do it.

A worthy challenge. For all of us.

Wednesday, February 6, 2013

Free lessons

Some "free lessons," courtesy of ... wherever such things come from. We each have our own name for the source of Life Lessons. One gets free lessons from That Place all the time, one just isn't always listening... But today, I'm not here to talk about the name of The Source, I just want to share the lessons it gave me.

One waking, one in a dream. And exactly the same lesson!

Waking: A very nice person is helping me load my wheelchair into my truck. The wheelchair folds in the middle (high-school-math flashback moment: if the X axis is the direction of forward motion, and the Y axis is the way your trunk goes UP and your legs go DOWN when you're sitting in the chair, the Z axis is the axis through which it folds). Anyway, in this moment of folding, he traps my ankles between the leg pads; I'm now trapped inside the wheelchair, the chair (and I) ain't going nowhere. Fortunately, I catch it, and stop him before he causes any harm.

And I respond very calmly, because I know instantly that he just didn't see what was going on... at least, not what I was seeing (and feeling, as the footrests captured my ankles). I had no rancor, no panic, no resentment, just ... realization. He didn't see it.

Dreaming: I'm back at my old workplace (or a "dream version" of it, which doesn't map geographically to the dream landscape, but like all dream landscapes, it has its own logic). A car is parked at the top of the hill, right next to the stairs that I'm about to descend... I get out of my wheelchair to walk--really walk--towards the stairs and the railing that I'm hoping to use to make the long trek down. I set my hand on the hood of the car, and its driver backs up (something I suppose he was going to do anyway). I don't hit the ground, losing my handhold on the hood of the car doesn't cause any harm to either of us; car backs away. I make it without incident to the stair-railing on my left, somehow attract the driver's attention; I'm about to talk to him, and then I wake up.

And awake now, I think... what was I going to say to him? I realize instantly that it was, "We didn't see each other." We didn't. No rancor. No resentment.

And the lesson is, I think, that there's zero rancor possible once one realizes that The Other was simply not cognizant of what you saw. They simply did not see it. There's nothing to be angry at, or about. They just ... didn't see.

Now all of us in wheelchairs have experienced this, or something very much like this. Our Pusher puts us somewhere, or leaves us somewhere, that from our point of view is a Bad Idea. And we forget that from their point of view, it was a Perfectly Good Idea. Or c'mon, why else would they have done it, had it not been a perfectly good idea?

And really, let's be honest, why do we--why does anyone--do anything? Everyone does everything for exactly the same reason...

"It seemed like a good idea at the time."

Life offers us many lessons. When they come free, without cost... the wise will listen.

And learn.

Sunday, February 3, 2013

Moving targets; bean tossing

I've taken to describing my interfacing with the M.S. experience as "a moving target."

A couple/three days ago, I got up in the middle of the night to fumble my way to the bathroom, and I lost my "standing up-edness," and although I did have a hand on something to kinda control my descent, I hit the ground. Hard.

Your basic "land on your sacrum/butt" landing, but it was hard.

Ever since then, I've been feeling very "off." Plus, my butt hurts, as you could imagine.

Ever since then, I've been wondering whether I'm getting sick. With what, I don't know... not The Horrible Horrible Flu, not the fever/cough that my wife had for about a week. As of this moment, I think I may have... may have... left the "I'm getting sick" zone. Maybe.

But I think I may have returned to the "have to go to bed and sleep now now now" miasma. Not exactly "fatigue" as such, but an insistence that I have to go back to bed and have to close my eyes and maybe have to go back to sleep now now now...

I am so looking forward to my acupuncture treatment tomorrow. And very grateful that I finished the music people needed before they got to the "now now now" point.

Today is Setsubun, a Japanese spring festival. And although it's not astronomically equinox-ically "spring," I can definitely feel the change of seasons in the air. It's also the day after Imbolc, a Celtic "cross-quarter" holiday about springtime and renewal. A lovely day, a spiritual time.

So, in the Setsubun spirit, I'm going to go toss a soybean out the door, and shout "Demon out! Good fortune in!"

And then I'm going to bed.

We all celebrate spring in different ways. The Celts kindle fire, the Japanese throw soybeans at each other.

Humanity is amazing, isn't it?