Thursday, July 30, 2015

Who'd have thought it?

An interesting place, I'm currently in... Well, let's call it "interesting," at least for now...

It's very hard for me to accomplish pretty much anything, nowadays, if you don't count encounters with the Cath Club as an "accomplishment." I sent a couple of pieces of mail today, but work on the music that *****needs***** working on? Dunno about THAT... Fortunately, nothing is currently overdue or is even close to that, but I really--somewhere, yes "really"--want to, but somehow, I'm not encouraged to do it.

My brilliant and ravingly generous neighbor has a son in college looking at Computer Stuff... I've offered to chat with said son about Computer Stuff, being as I have been dealing with it since the '70's. It's interesting, having been in the business for so long, I tend to see "improvements" as actual worsening or poorly repainted revisions of stuff that already worked perfectly well, thank you very much, which means I have less than no interest in buying the Latest Thing. Sometimes, an Old Thing is actually the best tool for the job, aside from the Nobody Supports It Anymore problem. But if you're not in the target demographic, nobody cares what you think, and often They who are "asking" really really REALLY don't want someone who disagrees to screw up the data they've already decided that they want to collect.

Maintaining the Holy Purity of the desired dataset is definitely not my problem.

But that's another show, as Alton Brown often said.

Will I do music stuff? Dunno... maybe I'll have a cup of tea and a pop-tart, see if that changes anything. Don't expect it will, but who can ay?

Came across something I actually should be of all things, thanking MS for. I've chatted with someone who still works at my former workplace, and of Lord, the very things that drove me away have gotten significantly worse... People who think they're in charge--are they? Does anyone truly know?--Are gutting and destroying beautiful things; people who have been working there for years have been driven away, one of them entirely out of the  state, people who have been working there for years are trying to figure out how to bail under the umbrella of retirement; it's very much a "rats fleeing the ship because it's about to sink" thing.

I both loved and hated the place, at different times and for different reasons. "How the mighty have fallen" hardly encourages me, but that's the way it is, alas.

I'm not even sure whether I'll find a cartoon image that'll reassure any of us, but oh well...

But it is a tragicomic "thanks for MS" moment.

Who'd have thought it?

Sunday, July 26, 2015

Man, it's taking a lot just to do this.

I have orchestral music that needs to be reviewed and maybe fixed, prior to release. I don't have the wherewithal to deal with it.

I barely have the wherewithal to do this, and I probably won't be taking long before I give up.

That's pretty much my current state. Give up.

Just lie there and maybe listen to something, maybe go back to sleep. Have lunch, go to sleep. Have dinner, go to sleep.

Well, it's an uncomplicated life...

Rocky Mountain MS Society's regular publication arrived at the house recently; some excellent articles on medical marijuana. Which articles came after the multi-page ad for Copaxone. Somehow, although I understand that ads pay for the publication, someone may have missed the point.

Interesting bits were printed about the history of cannabis use... it has been used on many continents, literally for millennia. And somehow, The System needs to do double-blind experiments to see if it's safe. I get it, but c'mon! If there was a problem with it, you think maybe after several continents and millennia of use, we'd know it?

How long does it take to learn how much NOT to drink? Takes at most one or two "lessons," and you know exactly what happens if you over-enthusiastically help yourself. Doesn't take a double-blind study. EVERYBODY knows what happens; it has either happened first-person to you, or you've seen what happens to other people who need to learn this lesson.

My herbalist quoted me a study that established the lethal dose for weed to be on the order of forty-three pounds. You would more easily be crushed by the 43-pound bale landing on you than surviving smoking 43 pounds of it. I think it's safe.

Ask anyone who went to college in the 80's, they're still doing fine. Many of them even having given up on smoking it simply by becoming disinterested... see how often that happens with tobacco. How many people do you know who have just upped and quit smoking cigarettes? That'd be three, count 'em, three, for me. I know people who gave up cocaine but couldn't quit smoking. Tobacco kills people. But it's huge-air-quotes "safe." But cannabis, which all but can't kill you, they want studies on. Which they can't get because the feds have their heads up their ass and call it Category 1 and thus, nobody can get at it, so of course it's untested enough and therefore unsafe.

Yeah, well I don't think so. I got multiple doctor types with whom I talk about different weed strains doing different things: one for spasm, one for daytime "let's get the munchies and eat!"

I wish it would encourage me to work on music. But a really good weed buzz doesn't help you make sure you ain't got wrong notes in the 2nd Violin part.

Where's the gift of MS, in my current state?

Perhaps a call to be at peace; to persevere as best you can. Just like, y'know, life.

So where will that take me today?

Perhaps bed, to start with. We'll see.

We'll see.

Thursday, July 23, 2015

Not a bad idea

Well, at least I did some music this morning. Fixed some stuff, now we're ready to fix the next stuff.

Manipulating the computer is taking a lot of effort. A lot of effort. Controlling hands at all is nearly not happening...  Let's be honest, I'm controlling some, sometime quite enough to function, but the living with working around misfunctioning hands, correction after correction after mistype followed by more correction... well, to put it bluntly, is no fun at all.

This is WAY different from "How am I going to fix this" or "NOW what's the tune supposed to be?" and the usual Composer's Dilemmas... That, I'm quite used to. But tring to hold down, say, an A-flat on the piano-style keyboard, and instead the finger won't stay on the key, won't press down, won't do anything useful or usable... and that takes time and energy away from trying to accomplish something, anything, which means that hand issues or no hand issues, I get sucked dry of energy and thus can do fewer or no creative things.

What am I stuck on? Memories of bygone days of using my hands? Of being able to actualize creation? I'm sure someone might say coarsely, "Well, deal with it," but "dealing," I ain't doing.

And I've hit the wall and need to go to bed.

I want to welcome the answer to this difficulty. Not to "accept it," but to welcome the answer.

Well there I go again. Gotta change my consciousness.

Not a bad idea, in and of itself.

Wednesday, July 22, 2015

Not interested

Went to bed last night thinking I'd work on music today. I may yet.

Now that I've been sitting at computer long enough to order some niece-birthday gifts, and a couple of other notes, and I'm seriously thinking of giving up. Especially since the whole "bad typing" thing eats time and frustrates me.

The music I want to work on, it isn't that hard.

Just sitting at the computer, and using it and getting good use out of it... that's hard.

And I feel myself hitting the wall. Time to go to bed.

Any other "note sending" will wait until I'm in bed. I have a couple on the list, just friend-to-friend, nothing scary or about business or that kind of stuff.

Maybe a cup of tea and try again. Maybe a give up and just go to bed. Maybe sleep.

It's a challenging world, where "give up" is more nurturing than "keep going."

I'm not changing my internal picture of myself into "an invalid" or something like that. I just don't enjoy suffering. Staying up too long engenders the suffering, it seems.

I got no fancy philosophy... as to the "suffering" thing...

Not interested.

Who is?

Sunday, July 19, 2015

Too soon

Ah, us MSers, we do live unusual lives.

Some of my blogging colleagues tell stories of discovery, of delight, of travails survived and overcome.

Well, what's my story today?

I survived the Morning Medical Stuff. Nothing worth reporting in detail. Trust me. That does take a bit of energy, so I made osmanthus oolong to warm up the morning. A lovely flavor... the Tea People were right, my wife was asked the tea shop and asked what they recommended for summer, and the instant answer was "Summer? Osmanthus oolong." (Lord, I gotta figure out how to get this into the hands of my parents and brother. Gotta Skype him to take him through how to make it right, it ain't "drop in a teabag and basically forget about it until it has been brewing for way too long," the traditional American approach to tea. But that's another show.)

Dropped a couple of e-notes. Checked that I don't owe the DWP (their schedule of bills eludes me, so I just check every so often).

Need to work on music; one Thing needs doing reasonably quickly = ASAP, the other Thing can get done easily within the month, it'll probably take a week of work or thereabouts.

Or I can go lie down and listen to cartoons or stuff on TED or The Day The Universe Changed or an original-series Star Trek. Maybe catch the Kill La Kill that I missed last night (slept through it) and sleep through it.
Sometimes in the morning, it's clear that I can definitely Do Stuff. Sometimes, I can feel that I'm about to hit the wall and need to go to bed--if I don't respect the wall, I may wind up getting to know the floor better. Intimately. Which I did earlier this week, it took a neighbor to dead-lift me into my chair so I could get back to the not-call-off-it bed.

And I really can't tell, right now. I may be on the good side of "keep going," but sometimes I'm not sure.

Like now.

I'll go get another cup of tea and a snack. Or a banana, maybe even. Food is good for me, and the acupuncture clock says eat, man, eat--in the morning! So I'll do my best to try that. Then see if there's any music doing. Some of it doesn't require a lot of musical creativity, things like "First, I need new staves for the new instruments I need to write for." Once those are in, it's creativity time.

If I can. But, alas, I must always...

Respect the wall.

Respect it and it'll hurt less when you hit it.

Which you will.

Too soon, alas.

Wednesday, July 15, 2015

An interesting prescription

So my wife, my blessed primary caregiver, took a week off to recuperate, do Fun Things, hang with friends, and otherwise just be herself, 100% of the time. She left me in the care of a college friend who surpassed "Godsend" in very, very short order.

My wife came back with some truly amazing ideas about stuff she should do to share her wonderfulness with the world. It's not quite well enough filled out to fit under the "entrepreneurial" umbrella, but it will be, in short order.

Well it will, if she has the time and energy to do it. If she's not sucked dry by "100% caregiver," the role she finds herself in at home here with me.

So we've talked about how I can help her be her, and besides the obvious "offload caregiving to others sometimes," but at the bottom line, it comes down to this:

I need to engage the world.

Not just lie in bed all day, getting up for the bathroom and the occasional feeding and sitting on the veranda all alone in the wheelchair, but actually engage the world. Somehow.

So that's today's gift from the world: get outta bed and engage the world, however you can.

This means getting my own friends to come over and hang out with me. Engage with them. As Garnet the Crystal Gem from Steven Universe said...
Blogging with you folks is part of my "engage the world" prescription. Not quite as in-your-face direct as actually being with people can be, but it's a start.

A friend of mine on the Yale faculty sent me a note asking to get my compositions into a Certain Person's hands. More details as they happen, but it certainly means I need to get out of bed and sit at the computer and, well, engage the world. Again, remotely, but we start where we can.

Do what you can with what you have. And fully engage the world.

An interesting prescription, no?

Thursday, July 9, 2015

A good place to start

It has been a delightful few days. My wife is having fun at a convention in another city, a Yale friend of mine is holding court here at my place to make sure that I'm safe and fed. It has been really wonderful!

She told me that her husband had been in a sailboat that "turned turtle," or in other words, flipped over, mast down and hull up. From the boat's perspective, this is bad.

She talked about how he was dealing with the boating disaster, and being one who has had his own share of things turning turtle, metaphorically if nothing else, and a thought...

As I've said before, I have problems with "accept" as a way to process discomfort, shall we call it. But for this guy, the key was easier... just admit that it happened. "Why" does not matter, "how" can be interesting in a post-mortem investigation, but the bottom line is... it happened. You gotta cop to it. Not "why," not "whose fault is it," but that it just... happened. That's true as true gets. It happened.

And that's a way to look at my MS ... occurrences. Difficulties. Challenges. Terrors.

Where is no "why," there's no "how," and there's clearly no "fault."

But MS happened, and everything that came of it also happened.

And that's where we start. Speak the truth. Whatever it is... it happened, and here I am now as I am now.

As my beloved timpani teacher said, always tell the truth: that way, you only have to remember one story.

And Lord knows, I don't need to choose to make things more difficult for myself! Let's just start with a quiet, simple, and direct thing.


Seems like a good place to start.

Saturday, July 4, 2015

That ain't bad

I had a lovely talk with a friend of mine last night. He's got Issues with someone in management who sounds, well, damaged, and that messes things up pretty severely sometimes. Often. Daily.

But he's finding a lot of solace and survivor-ness simply through perspective. And he said of his connection to me, "Well... at least I can walk. And that ain't bad."

He also enjoys my often wicked sense of humor. He said he's having difficulties communicating with Some Person because, I'm guessing, This Person doesn't like dealing with things outside their very very very personal view of the world--true for everyone, but this particular view of the world doesn't work out so good. As Ram Dass says, they're so busy thinking about how things are supposed to be rather than seeing them as they are.  In this particular case, seeing things as they actually are would reveal just how much they're screwing things up, which is not a place they're even capable of, at the moment...

This Person likes to call my friend on his days off and complain about how he needs to come back to work, basically, so This Person can feel good about themselves. Ostensibly to "take care of something," but we're working at the level of "The light in the closet is off, what are you gonna do about it?" Telling That Person where the light switch is alas never works, because my friend has to take care of it because that's why This Person made the phone call. Why Said Person can't deal with it themselves, especially after having done the equivalent of turning the light off themselves, that's a mystery. And definitely a pain in the ass.

Anyway, I told him that hmm, this might be fun, I don't recommend it but it's fun to imagine... So, imagine this: If This Person calls over the weekend, don't answer (phone tells you who's calling, after all). When you come in to work after the weekend, This Person will probably grouse about "Where were you?" implying "not answering my calls to see to ME," and just say one word:


If This Person keeps grousing, whip a catheter (which I'm happy to supply) out of your pocket, drop it in front of Said Person, and say again:


And walk away.

It's gonna be really funny when Said Person tries to get out of that one, or if Said Person clearly wants nothing to do with, oh I dunno, the existence of people other than Said Person themselves.

I always find the funny.

And, y'know, sometimes that's not just all you have, but it's often just what you need.

Us MSers come across that sort of thing all the time. Well, it's OBVIOUS what you should do, They say. Of COURSE that's what you need to do, They say.

And of course it always comes down to the same thing: Well, much as I agree with you, I ain't going go do it but well, I can't. It's on the level of telling guy in a wheelchair that something will be ever so much better if said Guy would just stand up and do the whatever... Yes, I agree, but I can't stand up, so that ain't gonna happen. Fortunately, there are few people who like my friend are dealing with Certain People who are incapable of understanding anything outside of their own head.

My acupuncturist often treats "not being able to see outside of your own head" with a needle to CV1. Having had too many of those, I know how that feels, and it really does work. But wondering how Said People can't see outside of their own head, bemoaning that they don't, and trying (and failing) to convince them to change...

As the saying goes,  how's that working out for you?

But one thing we MSers can provide, because we know how it goes, we really do...


Which for a gift we can give, MS or not...

That ain't bad.

Thursday, July 2, 2015


Dueling with "accept."

Somehow, I've always had problems with this word, this concept. What I make of it may be more than's there, but telling me to "accept" something, especially MS related, lights the fire under "push back."

But "admit" is easy. "acknowledge" is easy. And somehow, more useful, maybe even more powerful.

I don't need to "accept" that I have MS. But it's very very easy simply to admit that I have MS. To acknowledge that I have MS.

It's kinda like simply admitting that "I am currently sitting in a wheelchair, as I'm typing this."

Those are very very easy truths. Nothing bubbling in the background, nothing that fits into the category of "things I want to deal with but dan't bring myself to." It's simple and descriptive.

Does one ever need to massive-air-quotes ACCEPT that one is currently sitting in a wheelchair? Observationally, it's on the level of "Duh," anyone who could see me sitting in the wheelchair, would agree without layering implications, yes I am sitting in a wheelchair.

Now, if I want to be sad about being in the chair, that's another matter. If I want to presume that I'll never walk again, that's another matter. Each of those require significantly more effort than "merely observing," or as some might describe it, "witnessing."

I don't need to use what energy I have, what short time I have in our little world, choosing to delude myself about the horror of my life.

At Pops of Regular Show often says, "Bad show!"
So let's admit it. Having MS sucks. A lot. Too often. Bad show!

Now where do we go?

Let's go for truth. As my beloved tympani teacher (now of blessed memory) once said, "Always tell the truth. That way, you only have to remember one story."

Sometimes, no matter what it may be, at the end of the day, truth might very well be...


Wednesday, July 1, 2015

I tell you what

New fascination, new discoveries, new explanations...

So, many of us MSers have common issues. A recent read of the (real) literature reports that irrespective of gender, bladder, bowel, and of all things leg issues, tend to go together. Get one, get three. Sounds like something Seth Godin would talk about, "get 1, but actually get 3!" as a  marketing strategy.

Frankly, I can do without all three being and Issue, so "piling on" has no attraction for me.

But the discovery is how connected all the visceral organs are. And amazingly enough, also the legs; when I'm inserting the bladder catheter, I feel a nerve "spark" (as it were) in one of my toes. Always the same one. There's some sort of nerve connection between somewhere in my urethra and one of my right toes.

The connections are there in all of us. But even with bad wiring, the connections are ... amazing!
Why I'm having such a horrible time dealing with the computer and dealing with music, I don't know... Yes, yes, as you can tell, I'm still quite taken with certain cartoons, but they're not running nowadays so I have no reason to sink into the screen. Nowadays, they seem to be showing a lot of Teen Titans, Go! but Robin is rather a dick, and Beast Boy needs to just shut up and grow up.

Great, Teen Titans have turned me into Hank Hill. I tell you what.
I also rediscovered the horrible power of heat. I warmed myself up, I thought quite gently and pleasantly, sitting on the veranda for about 20 minutes. All that heat basically turned me into an invalid... I couldn't move anything, and I think that was why I wound up on the floor. My feet stuck to the floor, even in socks, and I couldn't move them at all and I tried to save myself from sliding out of the chair, but apparently, I didn't. Spent a few minutes lying on the floor calling for help, which thank God came quite expeditiously.

To be deadlifted from the ground with Karen's help at my feet, and the really big motive force to lift my upper body being supplied by a friend with an artificial leg.

Yes, that's right, I get picked up off the floor and power-lifted back into my wheelchair by a guy with only one leg.

Well, like I often say... I always find the funny, and you gotta admit, that's funny.

I tell you what.