Friday, August 30, 2013

Different reasons

Wow, here we are, knocking on the door at the end of August. My old college (Yale) has started its session already, earlier than it used to when I was there... Probably, the high-school where I used to work will be starting itself up at about the same time it always has.

I always did "back to school shopping" for myself, or for my team, or for the school in general... Never huge or voluminous or expensive, but I did my best to pre-emptively solve problems in the "shopping for the team" stuff, sometimes to forestall problems that I expected would come up (and usually did), and always got myself something just a tiny bit special. Yeah, the school always bought a big pile of pencils and pens and Post-its and all sorts of general-use office supplies, but dang it, I liked my pencils, my pens, my Post-its, and getting those for myself added a lot to my "let's have fun starting the school year" process.

And I always picked up a bunch of weird stuff, like 5 1/4" floppy drives--not for the computers, but for the ETC light boards. Light boards still pretty much own the 5 1/4"-floppy space, there are so many of those drives installed in the world but, at least as was true when I was still in the Theater Biz, there was no way to USB them, no way to anything them except using 5 1/4" floppies. Whose files PCs could read and write--not Apple's, suck on THAT, Apple, it had to be PCs.

Of course, given that PCs stopped installing 5 1/4" floppies during the manufacturing process, one needed external, USB-connectable, floppy drives. To read and write the diskettes that were the only things that light boards could read. More "back to school" shopping for diskette drives...

Whose files, by the way, were straight-up ASCII text files. Which one could also read/write with Notepad. Which, on occasion, I did, to play brute-force tricks like "global search and destroy" (I mean "replace") with. We never went to the end of the road getting things like RFU's (Remote Focus Units), just good-old brute-force ASCII editing... which I, as both theater-tech and computer-tech geek, would wind up doing all the time.

But to everything there is a season. That season is over. It's back-to-school season, and I guess I miss it, but I also don't care. Because I'm not supposed to care... it's not my problem, any more. From a bunch of incidentalia that I won't bore you with at the moment, me thinking it was MY problem may not have always been accurate, at least from other perspectives that it horribly sorrowed me to discover, but that's definitely another story.

Spent the day so far doing Business Things. Need to send an invoice  off to somebody; maybe I'll do that today, who knows. Called some Wheelchair People about some stuff, need to call another set of wheelchair people about getting something fixed. Called a few other people. Made some tea. Do I have the wherewithal to work on some music?

That'd sure be nice, wouldn't it. Or maybe I'll go to bed.

This is very much the road I'm on, nowadays. "Or maybe I'll go to bed." I went to lunch with a friend from the mid-80s yesterday (when we knew each other, not how old he is). We had a wonderful time. I was very, very happy to reconnect with him. But as far as the physicality of getting out of bed and going somewhere and dealing with the world, I hated pretty much every moment of it. I loved being with him. I hated being out of the house.

We went to lunch somewhere that made him extremely happy, and we agreed that we'd do this again and try a new place. I barely ate anything, took most of it home where it'll become dinner for maybe two days. Am I eating "enough"? From the outside, what I weigh and look like, definitely not. But much of the time, if I eat anything, I regret it. Immediately, and for hours afterwards. Vague discomfort, not full-on dyspepsia.

Sometimes after a load of my medicinal herbs, I can actually eat and enjoy food. Alas, these are some of the only "with side-effects" herbs that I take; one can get a little loopy, and certainly into a "I really don't feel like driving" state, which is one state one should definitely respect.

I'm amazed that I was able to do this. Should I even attempt to work on music? Eh... maybe I'll send a piece of mail or something, but I dunno about working on music... I'm kinda afraid of the suckitude that comes from, as Jon Stewart likes to say, "I got nothin'." I don't mind writing not-as-good in the service of "making things better," but I don't really know if working on stuff will make me feel better to be even trying to be in a creative space, or make me feel worse for trying to be creative within the world of "already been sucked dry."

Or maybe I'll go to bed.

Always coming back to that, makes me feel a kind of better, but I don't know that I'd even use "sort of" to describe the variety of "better."

So, finally, I'm not trapped in the "sort of" loop. Great, right? Right.......

And as Samuel Pepys was known for saying, "And so to bed." But for him, it was definitely a different reason.

Wednesday, August 28, 2013


Man, am I daily finding new ways of getting completely exhausted.

Let me reassure you, I sure ain't looking for new ways to drain myself completely of everything. But whatever I happen to do, seems to very efficiently drain me of everything.

Sucks me dry.

It's one thing to be tired, it's something else to have your soul sucked completely dry. An interesting difference.

Let's put monster air-quotes around "interesting" difference.

I spent today's what-passes-for-energy shipping some music to someone in Tennessee. Man, this "internet" thing is amazing. This Person wanted some music I had written for full-sized orchestra (a fifty-piece orchestra, when it was premiered a few years ago). Time was, in the Olde Days, I had to print it all and Snail-mail it to the folks who were gonna perform it.  Post-9/11, one apparently can't just stick a stamp on such things and mail it, they need to be taken to the post office and a postal worker has to stick a stamp on it and mail it. I never understood USPS's choice here... They want to make sure nobody puts a bomb into something and sticks said bomb on a plane, I get that. But the place I was mailing it to was between me and the airport... you had to drive past the place I was mailing it if you wanted to get to the airport.

Now, with digital delivery, it's auto-magical. POOF! it's there. Click and print. Which has its own conveniences for the recipient... "Oh dear, I lost a copy of XYZ." Well, just print another one. "Oh dear, I forgot my copy of XYZ, whatever will I do?" Well, you got an internet connection and a printer? POOF! Problem solved, magically and instantly!

But man oh man, is this draining. I haven't written music today, all I've done is printed it. And that's too much to ask.

A college friend of mine will be in town tomorrow. He wants to go try those tea places I keep Facebook-ing about. I'm seriously torn between "No problem, I'll need a little help with my wheelchair, but it'll be easy and fun! Let's go!" and calling him and canceling and never, never, never leaving the house. Because it just takes Too Much.

And just typing this has taken what little I have left. My wife very thoughtfully made me quite a wonderful sandwich. I'm going to finish that, wall-walk to the kitchen, have my "yummy" medicinal herbs, then go lie down.  And that's about all I'll have today. If I'm lucky, I'll be able to get up and watch Futurama at 7PM. Maybe. We'll see.

Do have to decide before the end of the day whether tomorrow with College Friend is on or off. Would very much like to have it on. I expect I'm going to regret doing it, even before it's finished having been done. Frankly, I expect to regret it about an hour into the whole adventure... if it even takes that long. Will definitely not regret having seen a friend, but expect to regret having left the house. The bed. I mean, I regret leaving the bed just to make it to the bathroom (even though I don't ever regret using the bathroom, but just getting there... is another matter.) But how much is this gonna cost me?

We'll see...

Sunday, August 18, 2013

South Park; Zen; truth

Continuing the "truth" sessions, here we go.

Not a "rant," I think, but simply being truthful. Because dealing with anything can only begin with truth.

Having to "structure" my life around a petulant and completely unpredictable bladder; making decisions about what I can do and where I can go based upon whether I'll be able to get at a bathroom in time to keep B-san (Mr. Bladder, for non-Japan-o-philes) from just cutting loose and literally leaking... Or maybe not "leaking" but "gushing"... That, I can live with. I'd rather not, but I can. An annoyance, but not a "show stopper."

Weakness, of all muscular kinds, is hard. Wall-walking becoming more difficult. (That it sets off B-san's petulance-cum-leakage is another issue, but the difficulty is a show-stopper.) I have just purchased a very fancy, very light-weight, custom-fit to me, which is vastly easier to use than my old one. It's really quite a wonderful wheelchair. When Wheelchair Guy did the initial fitting/demo, I had him take me to the parking lot so I could see whether I could put the wheelchair into the truck by myself. A month ago, only a month ago, it was no problem. Today... I honestly don't know if that's gonna be possible.  I'm actually quite afraid to try it, even with someone nearby to spot me. (Wheelchair Guy tried to take me through how to disassemble and take the whole chair in through the driver-side door and store it in the passenger side... which isn't possible, with my truck not having angle-adjustable steering wheel and with my currently increasingly-weak state; not sure which is worse, but even the trying to do this was horribly wracking.) So now I'm willing to go places by myself only if I can be sure someone will help me put the wheelchair back into the truck. Or do it for me. Which cuts my "it's OK to go there" down to maybe three places. Maybe. If I have enough energy to go there at all, which nowadays, I don't. Speaking of which...

I'm really quite amazed that I can sit at my studio computer (as I am as I write this), just to write this. To pay bills online. To look stuff up. To correspond. All those things have become nearly insurmountably huge.

I haven't written any music for days. Weeks, maybe. Because I just don't have the juice to sit at the studio computer and write it. I don't have the energy, and I don't have music trying to burst out of me like it used to. Yeah, there's stuff that I wish I could write, very specific things. But I just don't have it within me.

hat's hard. That's very, very hard.

The inability to control my legs, not quite mathematically-zero control, but pretty damned close. Makes things like standing up to get up from at the toilet challenging. Stand up to get myself to the toilet. Put my legs under the sheets, while lying in bed. Which I do way more nowadays than I ever have. I sit on a rolling chair in the kitchen, so I can brew herbs or tea, or wash the teacup. I can't keep my legs under control enough to keep them from tying themselves into knots, my feet slide sideways and my knees go wherever they go and there's nothing I can do to control it.

I had to have my wife help me put pants on, the other day, because I couldn't control my legs well enough to do that, even while sitting down. I had to have her help me put on underpants, because I couldn't control my legs well enough to do even that. God bless my wonderful, wonderful, wife, for putting up with a withering husband with so much grace.

I find all this zero-means-zero control to be, at best, unbelievably disheartening. Moments of "not being able to [whatever]" have been wracking enough to make me cry out in despair. In terror, even. In frustration. Of all of the above, simultaneously.

Sometimes, I'm able to go "all Zen" and just say, "Well, that's the way it is, right now." Just observe and acknowledge. However... A lot of time, and nowadays more than ever before, I go all Stan Marsh from South Park: "Dude, this is really f**ked up." I guess that's good, to acknowledge my emotional response to difficulty, but who wants to live in a Stan Marsh-style "Dude, this is really f**ked up" state, 24/7?

My friend with an artificial leg has an easier time getting around than I do. My eighty-plus-year-old father has an easier time getting around than I do, and for him, "getting around" includes chasing after charming grandchildren, as they scramble all over everywhere. But as the Good Book says, "All flesh is as the grass, and the goodliness of man is as the flower of grass. For lo, the grass withereth, and the flower thereof decayeth."

Yeah, I know all that. But this is all happening so f**king fast. Everything is degrading so fast. Withering so fast... I filled out a couple of checks this morning, addressed a couple of envelopes, and the way my hands are operating right now, I feel like even my scrawl-called-"printing" is gonna be outta my reach. I'm dropping things. I'm mistyping, even at this very moment, making typing errors that I thought I just "never" made. I make all the time, now, and wonder how long I'll be typing. At all.

I'm gonna have to call Geek Squad to come to my house and fix some stuff. Which really pisses me off... Dammit, I've been doing tech stuff all by myself since what, 1979? That's thirty-four years, for non-math-majors (like me). It's an easy problem to diagnose and fix. And I can't, because I can't deal with the physicality of just getting at the cables. This pisses me off... it's definitely in the category of "adding insult to injury." (Actually, I think it left "insult to injury" in the dust. Dude, this is really f**ked up.)

And yes, I know, I know... ; t; tThis is what faces all of us, who are incarnate in what we call the "here and now"... We all, eventually, have to come to grips with "too soon, too soon."

And so, the truth is both Stan Marsh and Zen.

Dude, this is really f**ked up.

Well, that's the way it is, right now.

If there's nothing else we can do, at least we can tell the truth.

Saturday, August 17, 2013

Normal (?); comforting (?!?)

Awight. I really, really, have been trying hard to see the spiritual truths and all that stuff.

But "truths" require truth, don't they?

So let's get this out of the way. A truth that I really do need to cop to.

I f&$king hate this.

I'm getting too thin because I'm not eating properly. I don't eat properly because to do so makes me uncomfortable.

I'm having more and more trouble with locomotion. I won't even call it air-quotes "walking" any more. Walking (such as it is) goes awry in ever the most amazing ways. I haven't hit the floor yet—and I say "yet" not to presage its inevitability, but because that's the way it is: at this point, I haven't hit the floor during "walking" or whatever we wanna call it.

Elimination issues of all kinds pertaining to all kinds of elimination. You don't want more information. Trust me.

My strength and agility of my hands are starting to fade. Lack of control with the "keyboard" of my iPhone' my signature is still pretty much what it's ever been but even printing has gotten visibly worse, it's definitely harder to do, even getting to the point that I don't even want to attempt it; and typing at the moment works OK enough, I guess... but on the machine I'm using at the moment, things get pressed incorrectly and the cursor flies all over the screen to the most amazing locations.

Well, something did work today. I managed to have a toaster muffin and enjoy it. And not regret eating it. I have new herbs this week specific to many of my f@$king annoying issues... we'll see how well they work.

At least I did learn that something rates as "normal." I've been having problems if something moves sideways past my eyes too fast (for example, person pushing me in the wheelchair whirls/spins me too fast, or pushes me past the aisles in the supermarket too quickly). I don't get queasy as such, but it's dizzying and uncomfortable. Doc tells me that's built-in wiring, this particular optic whatever is connected somehow (neurologically) to the inner ear.

Well, it's normal, at least.

Although as a friend of mine once said, "If it happens... it's normal."

Sometimes, I find that immensely comforting. But alas... not always.

Thursday, August 15, 2013

For now

Went to the eye doctor yesterday. (A full-on doctor, MD and everything, not just a "glasses guy.") Much good news; optic nerve looks fantastic (therefore, optic neuritis is very unlikely), one of my eyes sees quite reasonably well, the other one needs some more help. Cataract
 surgery needed eventually, but thankfully not yet or any time soon. I am on the "see her every six months, not once a year" plan, though.

She told me that as far as she was concerned, I was seriously underweight. Maybe even "dangerously" underweight.

And here's the conundrum: Of course, I don't get hungry. Haven't for years. Do, however, feel things that I associate with "must be time to eat, eh?" But the problem arises when I do eat something, I wish I hadn't; "tummy has stuff in it" is kinda uncomfortable. Or sometimes "pretty uncomfortable." Sometimes, even knowing that yeah, maybe I'd better eat something, tummy has jumped already to "uncomfortable."

And if I don't eat, I feel differently uncomfortable. Faint, even.

So there it is: I know that body needs nutrition and all that, but if I do eat something I regret it, and if I don't eat something, I regret it. And to make matters worse, the "just having eaten" regret is worse.

There are special circumstances and/or medicinal herbs that address the discomfort, sometimes, but they're not always available to me. When they are...great! When they're not... not great.

My wife and I were talking about going somewhere to lunch today. I had some breakfast. I regretted it pretty much instantly. I'm gonna close this down, then probably go back to bed. Will we wind up going to anywhere today?

I honestly don't know.

The world of "I don't know if I should" is a particular place of discomfort. I spend way too much time in the world of "I don't know whether I can."

I'm staying out of the world of "I don't know if I'll ever be able to" with reasonable success.

For now.

But in the MSer's world of "everything changes constantly," that's one thing I sincerely hope won't.

Sunday, August 11, 2013

Looming shadows; "later enough"

Dealing with the changing phenomena of "I don't wanna deal" versus "I can't deal" versus "I give up."

Typical issue: Toaster muffins. I just had the last one. I used to do cereal for breakfasts, but my tummy is becoming less cooperative with anything colder than "room temperature," so the almond milk we keep in the refrigerator is uncomfortably cold, sometimes. Often. Regularly, alas. So, we're gonna need more toaster waffles, right?

The store that is within walking distance of my house, for those who unlike me can still do such things, has them. The parking lot is in an uproar because there's some major construction on the lot, and the places that used to be really really easy for me to get into and out of, wheelchair and all, are no longer available. The last time I went there, it was a thoroughly unpleasant experience, because of the people driving kookily around the construction, and the slope of the parking lot (me + wheelchair + slope = danger) made getting myself & my chair into and out of my truck next to impossible. So I don't go there any more... my wife does, but I don't. Definitely fits into "I can't."

There are other stores that are much more possible for me to deal with. But I have to get out of the house and into the truck just to leave the house, and when I get to the store I have to get out of and back into the truck, and then upon arrival home I have to get up the steps and back into the house. Which is hard. Every time I try it, or anything even remotely like it, it's harder. Sometimes, it's actually quite doable! Sometimes, it's next to impossible.

Weeks ago, it was easy for me to get into the "dammit, I am gonna do this" mental space. But I think I'm floating between "I don't care" and "I give up" for such formerly simple things as drive to the Taiwanese tea place and get a yummy snack/lunch/tea/whatever.

Yesterday, I left the house to talk to the guys who are quite excellently doing some backyard work. Just to see what was going on, how they were doing, check on a couple of things, and to just plain say hello to the guy in charge (a friend from kyudo). That was huge. It took a lot out of me, just being in a different chair, and getting to the different chair, and just Dealing with everything. Energetically, hugely expensive.

I don't know whether I'll be able to muster the energy to do that again. I'm hoping that I'm in a acupuncture-addressable energetic nadir (I'm seeing My Guy tomorrow), but it's one thing to think of yourself as living in the world of "let's just see how we're doing" and  to actually be living in"I don't know whether I'll be able to do that again. Ever."

I got up. Made myself some tea: houjicha today, a Japanese roasted green. I wrote this blog thingy. I had a quick flash of "I really need to work on this particular music"... we'll see how we're doing.

But there is definitely a shadow of "I don't know whether I'll ever be able to finish this" hovering over the composition studio... the composition thing.

Darkness creates light. That, at least, is something I don't need to worry about causing to happen.

But I'll sure be happy when it does.

And an update... shortly after I wrote the above, I loaded my music-writing software. Looked at all the stuff I have already written, and the space where the empty staves are waiting for more music to be put there.

And I stare at it, and... close it. Have I "given up"? In the big picture, I sure as hell hope not... but for now, for this particular moment, I'm going to shut this off, have my medicinal herbs, and go back to bed. Even sitting at the machine and doing this costs too much, energetically.

How long will I stay in bed? Who can say? But, soon enough, or later enough, I'll find out.

Friday, August 9, 2013

The Season; call; a desired side effect

We're in, or knocking on the door of, the time the five-element practitioners refer to as the season of Earth.

The article says "Despite the abuse it has to endure, the earth is forgiving and continues to feed and provide for us."

Now, that is definitely something for everybody to hear, but especially for us MSers to hear.

Right now, I'm living in a place of "Sure would be nice to [whatever]." Not much time elapses. "Nope." And then perhaps lie down. And stay there.

Which is definitely working against my very-deeply-rooted overachiever. "But I need to do X! DANG do I need to do Y! I should be able to at least work on Z, I've gotta also work on A,B,C..."

And then the answer you get back instead is "Nope. You're staying right here. Or in that bed."

Gotta remind myself of what every single person on the planet is called to do: "Do the good you can, as best as you can, with what you have to work with. Which, of course, includes YOU."

So, very much in the depths of "I so ain't going nowhere tonight," I did what I could.

I fed myself (yummy tuna sandwiches!), left enough to share with wife, wrote some letters that needed writing, placed a call that needed calling. Wrote this. Poured myself some tea and yummy medicinal herbs.

I still have some things I wished I had, or would be able to, address. But they won't get done if I completely frag myself, and they're doing "un-doneness" quite well without my help.

And if the earth forgives me, perhaps I should put "forgiveness" on my over-achiever "to-do" list.

Which also has, something very precious to us MSers... no side effects. Other than, you know, peace?

Thursday, August 8, 2013

One does miss it

Nicolas de Mimsy-Porpington ("Nearly-headless Nick") in the first Harry Potter book speaks of not having eaten anything for four hundred years; as he puts it, he doesn't need to, of course, but "One does miss it."

"One does miss it" is something one comes up against, even when one is still alive.

I've been doing some Internet research on the PPMS "thing," recently... I've been sent some serious-grownup-authored scientific papers, and reading what the national MS Society's website has to offer. "Learning about it" is, as always, ongoing, but what I think I've collected so far has included:

  • I'm an outlier. Like that's news... but PPMS sufferers make up something like only 10% of the population. As a result, and the reasons for this being a "result" are kinda thick (remembering the early text-only computer game Colossal Cave, we seem to be "in a maze of twisty little passages, all alike"), there's not much research specific to PPMS, and even less of "not much" currently ongoing research. 
  • The national MS Society's take on "how to handle PPMS" seems to break down to "Don't crawl into a hole and pull it in after yourself." Which, I suppose, is as true for non-MS-accessorized life as for those of us with specific MS-provided "issues"... but it's not what I was hoping to hear. 

It's a clear answer. Which is good. But not a reassuring one.

Which, I suppose, in itself is also an answer, in its own way. Those comfortable delusions... They obscure the truth, they obscure the truth of one's experience of the truth (especially the direct, intimate connection to that truth, and to one's true relationship to that truth). They are very, very comfortable.

But delusions? Truth-obscuring, truth-seemingly-erasing delusions? With or without MS, one does not need them.

But the comfort, the glorious comfort...

One does miss it.

Tuesday, August 6, 2013


Oh my, after days (weeks) of nothing to contribute, here I am, twice on the same day. Well, if Seth Godin can get away with it, so can I.

So, because it seems I've that I've got "primary progressive MS," or PPMS as I'm learning is "the" abbreviation for such things, and because I've been getting pressured to do the mega-steroid treatment (1,000 mg per day via IV, for several days, followed by "taper off"), I went to the web for how PPMS in general is treated, and specifically how the mega-steroid treatment helps. Why it took me so long, who knows? But I did, and there we go. So, what does mega-steroid therapy do for PPMS?

Well, apparently, it does nothing. Speaking very roughly here... PPMS is, apparently, characterized by damage, not inflammation, so things that reduce inflammation won't "reset" neurological damage.

What are the PPMS treatments, you can imagine me asking.

Well, to quote Jon Stewart, it seems the answer is...
I got nothing.
Well then.

And here's the funny thing... My reaction is nothing more complicated than...
No resentment. No sorrow. Nothing "pushing back" at me, or from me. After all, what "treatment" is there for "being human," for living in these very ephemeral bodies? Well, nothing.

So, what am I gonna do about it?

Nothing. As T'Pau said on Amok Time: The air is the air; "What can be done."

Or as the Japanese say, shigata ga nai. Nothing to be done.

So, as of this moment, I'm gonna go have some tummy herbs, then oh, I dunno, maybe write some music? Or lie down, so that "resting a bit" gets me ready to write music.

That's definitely "what can be done."

Dharma talks and the Cosmic Owl

A strong treatment and strong dharma talk, at yesterday's acupuncturing.

One of the major points was "the Palace of Weariness;" the place where one goes to have one's weariness cared for and relieved.

From the one being treated's point of view, it's square in the middle of the palm. Ouch. But worth it. This is one of the points that brought me to the conclusion (correctness confirmed by the laughter of yesterday's practitioner) that eventually, anyone being treated by five-element acupuncture will say, "You want to stick a needle where???" but the promise of that point is that it's that very point that you need the most, and that in seconds after the needling is done, you'll be glad you had it done... and you'll remember this conversation.

My "regular guy" is currently out of town on vacation; I was treated by one of his office mates, who is the very one who treats my regular guy (they treat each other). He has the same, and yet a different, take on things. Sometimes he has precisely the same take on things, he just explains things differently.

We talked a lot about "forgiveness." I'm still finding "not letting go," non-forgiveness, and years after the fact, still harboring gut-wrenching anger at, people at my former workplace who were central to (from my POV, at least) catalyzing my departure from said workplace. My dharma talk centered around "HOW to forgive," which I had begun the session with by telling him that wisdom traditions (with which I was familiar) which are very clear about the need to forgive were very un-clear about the method. His take: "They" (which might just as well have been the more specific "we" or even "you, I, everybody") do things for exactly the same reason: seemed a good idea a the time. And whether something "seems" to be a "good" idea all depend on the perceiver's state of mind, state of consciousness even. They (we, aka "I") only see what they can. Nobody has any intention to do things that don't make any sense, ever. They (we/I/everybody) does what makes the most sense, but that "most sense" is completely dependent on what the perceiver is aware of. And central to "forgiveness" is compassion. They/we/I/everybody sees what they can see; and for all of us--all of us--to "forgive" begins with compassion for the person being in the state they're in, compassion for seeing what little they can see. And really, what we can do, all we can do, is to love the person. What they've done is not "on the list" of what needs love... but they are. (He also reminded me of "Forgive them Father, the know not what they do.") This has been a personal conundrum for a while; knowing that I need to forgive the blind for not knowing that they have no eyes. And the answer is that it all starts with compassion... in my metaphor, compassion for those who are living in the darkness of Plato's Cave, who cannot even see the shadows on the wall.

He likes quoting Gautama Buddha, whom he tells me said that "Everything that is born, dies; seek that which was never born."

And that the Dalai Lama's physician of many years once said (again, I'm paraphrasing) "Why do we treat anyone? So they can transcend." The core of my practitioner's take on this message was "We don't treat people so they can 'do s--t,' to 'stay busy' and immured in this world; we treat them so they can transcend this world."

So here we MSers are, courtesy of our neurology brought to a full-on face-plant into how ephemeral these bodies are. Everyone eventually comes to this place (see above under "all who are born, die"), but we come here through ... oh, let's say "accelerated" means. And not just the truth of ephemerality, but its inescapability. Its f--king inescapability.  So what do we do, then?

Seek transcendence. Seek that which was never born; and is thus, eternal.

So I guess that's on the "to do" list, then. It actually was on all of our "to do" lists... But traveling the MS highway does reprioritize things; selecting the real priority of "what we gotta do," even of "what we want to do," is something we have very special struggles with. Very, very special... very personal.

Adventure Time fans will recognize MS as our very own Cosmic Owl. And as everyone in that world eventually realizes... when the Cosmic Owl talks: Listen. Listen well. Listen carefully.

Sunday, August 4, 2013

Drugs; interfacing with The State; adventures

People have asked me why I'm so up-against-the-wall against Western pharmaceuticals in the "war on MS."

One reason can be found in the stories told by articles like this one. My own (and only) pharmaceuticals are synthetic thyroxin and cobalamine (aka vitamin B12). Very inexpensive; it's stuff entirely found in nature, which the pharmaceutical companies haven't (and can't, really) muck about with. One of the latest MS-drugs-du-jour is a tinkering with fumarate. Some Big Company played some chemical tricks with it and made it "their drug" which means they can charge whatever they want for it; fumarate exists in every warm-blooded animal's body as part of the "Krebs cycle," and can be acquired dietarily in mushrooms and, most of all, from figs. The shareholders ain't gonna get rich from Big Pharma trying to put their label on figs.

I hang a lot in the world of Chinese herbalism. Everything they prescribe for me is found in nature anyway. My previous herbalist used to put things like "seven-hole abalone" shells and turtle shells (there's a difference between the top and bottom shells, apparently), and I know someone whose life was changed immediately and for the better by drinking a formula that used a lot of cricket wings. However, the guy I'm seeing now only uses plants. Not "chemicals," plants. Plants that both the West and East know things about. And the East has known about them for thousands of years. Even the patent medicines one can find on the shelves of Chinese pharmacies use formulas that are over 600 years old. And the streets are not covered with the bodies of those who took Po Chai for digestive troubles. Admittedly, China has been known to have manufacturing "issues," but those are completely different from whether the formula works or not. And the Po Chai formula does indeed work; I've been using it for decades, and my herbalist who creates all his own formulas pronounced his approval of me using it.

Not like I don't have enough non-pharmaceutical struggles. Apparently, I've run out of "state disability" funds, which apparently run only for a year. Seeing that what had regularly been deposited into some bank account wasn't there this month, I called the state office; the person on the phone said that it had run out because it had been going for a year, but that (her words) "if I went back to work for a while, it would reset and I could start again."

"That's not really an option," I told her.

"Oh, it says here that you're permanently disabled," she said.

"That pretty much covers it," I said.

"Well, you can go on Social Security, then," she offers.

I thanked her for her help. She seemed pleased that someone simply spoke kindly and "didn't yell at her," I'm guessing that doesn't happen a lot, in her line of work.

All of my musculature is in flux. I'm having plenty of adventures already, thank you very much. No need to acquire more.

Then again, that's what I was thinking when I got The Diagnosis. "Just say no" didn't work there, either.

Oh well. Boredom, I don't have to worry about. And removing "things to worry about" has its own benefits.

Friday, August 2, 2013

Leveraging light sharing

Some very interesting thoughts from life coach Jessica Colp. I have not engaged her services, just heard a podcast, and can't say anything more about her work... but certainly, her podcast raised some very interesting points.

One of which was urging her listeners/clients to become "present with" their bodies. Sensitive to it, and really to connect to it.

Now, I gotta tell you folks, speaking as an MSer, being "sensitive" is something I really don't need to be urged to do, as though it were something new and completely different.

Sensitivity is one of the things I have very little problem getting "more" of. (Clearly, her clients have different ... issues, let's call them... than us MSers.)

But to come to terms with, and to be present with, and be comfortable in the connection to and inhabitance of one's body... that is definitely something very much worth thinking about.

Colp's assertion is that you can't really connect to your own special strengths, strengths special to you and you alone simply because you were born with them, ain't gonna happen until you come to terms with and become fully present in your body.

I can't speak for others in the MS community, but I'm guessing that given the (here's that term again) "issues" we have, we've got more than enough stuff to come to terms with.

And yet, come to terms with them we must. This body (such as it is) is the vehicle we've chosen to work through and with. It's what we've got. It's all we've got. There's no waving goodbye to it and starting over with something else unless we want to throw our entire incarnation out the window with it. Which, I might add, from what I've heard from all sorts of sources, some of whom speak of the consequences imposed by the powers beyond this life for exercising that option, is such a bad idea. So let's not talk about that choice, 'cause again speaking for myself here, I ain't taking that road. By choice, at least.

So again, speaking only of my experience ('cause that's as close to "authoritative" as I can get on such matters), yeah my bigger-every-day-air-quotes "walking" is working differently every day. Bladder (or "B-san," as I've called it in previous posts) works ... differently, let's call it... all the time.

But if we (OK, "I") really really really pay attention to the experience, it isn't "bad." It's interesting. No air quotes there... it actually is interesting. The sensations we (I) get are unique to that very moment. What we choose to do to work around, or better yet with, those experiences are different every time.

Just. Like. LIFE.

So I definitely hear the call to embrace my body in whatever state it happens to be in at whatever moment. It really is full of actually quite amazing experiences.

Are they different? Oh [insert very loud stream of obscenities] yes.

Are they inconvenient? That depends on our choices. Because what do we really have to do?

Uh.... live?

Do I wish things were different? Hell, who doesn't?

But here's an interesting parallel... I got requested to maybe adjust one of my pieces that I had written for a standard 19th-century orchestra (let's call it 50 players) to be performed by a radically different group. Far fewer players, including (or not including) some of the players I specifically wrote the piece to rely upon.

And I'm reorchestrating it to work with what little they have.

And I'm enjoying it. Because I feel like compositionally/orchestrationally, that's a special gift of mine: helping whatever players exist to sound the best they can by adjusting their tasks to match,, if not to full-on leverage, their strengths.

And is that not the task presented to all of us MSers? Leverage what you've got to make what you do into something... beautiful? Not "beautiful question mark," "beautiful multiple-exclamation-points."


Jessica Colb calls such people "light workers." Not the opposite of "heavy" workers, but those who work with light. Who bring light to others. To everyone, even.

So, I dare you. Screw that, I dare me... to "share the shiny," as a friend of mine calls it. Shininess has nothing to do with whiz-bang neurological nonsense. Or anything... besides light.

So, MS limitations... let's just come out and say it: Fuck you. And now that that's out of my system... here's something completely different.

MS symptoms... Welcome! And together, let's share the shiny... and let the light shine! And what we don't need to add to the light... as the Science of Mind church liked to say, "Let go, and let God." There is some [something] for whom such things are within their pay grade... so regift our difficulties to them. With thanks... because whatever [it/them] is is already sharing the shiny with us.

How? Well, that's definitely above my pay grade. "How" doesn't matter. I already know how, and what I don't know will be revealed to me, when the time comes, and I just need to be aware of it when it comes, not the how.

We chose this path for a reason. The path chose us for a reason. Don't know what it is, don't care what it is. Above my pay grade, definitely. But what is there that the path calls from us?

Let the light shine.