The Gifts of MS: Just live

Some very unrelated things to chat about...

On Sunday, May 18th, two premieres in two cities! Red Car Trolley performed a world premiere of a gentle and meditative setting of Sure on this Shining Night, poem written by James Agee (1909-1955).

At the very same time, a film in the 48 Hour Film Project premieres in Las Vegas, Nevada, in which my music underscores much of the action. Fair warning: It goes places significantly darker than the gentle quartet Red Car Trolley performance here in Pasadena, but this film can also be delightfully charming. It is a fine film, and even more marvelous considering they only had 48 hours to create it.

Yale University just held its 313th commencement, and the academic processional Sicut Incipiat heralded the graduates onto the Old Campus.

And soon to come on Pentecost Sunday, the First United Methodist Church of Orlando, Florida will be performing Veni, Creator Spiritus with organ, percussion, and brass ensemble.

Sounds pretty good! But it's music that I had written a while ago, in some circumstances, years ago. Right now, today, actually writing new music is ... ... ... difficult. I don't want to NLP myself by saying "impossible," but when I sit at the computer to start working on it, the message I get from my own body is "Lie down. NOW." Which doesn't get new music written, now, does it?

There's much about just being alive right now that's no fun. At all. Being in the Cath Club, I don't mind. I've actually started cheering on B-san, whom I've named Alan after the balloon in the Gumball cartoon series. Besides, bladder is really just a balloon anyway. It inflates, it deflates. Especially when you stick a straw into it. Which process for you might-be-Cath-Clubbers, you might like to remember, by my experience at least becomes vastly easier and more comfortable when Alan is psyched to deflate.

Of all the things whose functionality has... gone the way of all flesh.. at least I can be sure that my kidneys work really well. And I've developed a new pejorative for those people, like insurance companies, who think I only need to empty myself maybe three times a day. Oh really? Rather than say "eat me" or "bite me" or "blow me" or such things, I've got a new one: "Cath me." An interesting image, that...

But the story progresses... I was sitting outside last night, breathing the air, listening to the crickets, really enjoying the cool spring evening, and I was having quite a talk with...oh, who can say? Myself? The Universe? Spirit? God? Whatever name you want to call it, that, if one can limit the omnipotent with pronouns. I guess it was a form of shaking my fists at the almighty and demanding answers, although there was no fist shaking or growling, or demanding... it was just talking. And what I was saying was: "Please... teach me how to live like this."

I feel imprisoned by my elimination systems and fatigue, I can leave the house for the back stoop but it has been many, many days since I rolled down the ramp and actually sit within the garden; I haven't felt secure enough to have to pull myself up the ramp and I don't always feel like I have the strength to do it. I only leave the house and its grounds to see my doctor; I don't go to restaurants any more, even favorite Taiwanese tea shops, because see above under "imprisoned by my elimination systems"... It's hard enough to make it from the chair to the commode in my own home, the only part of which home is nastily non-wheelchair-friendly are these charming-mid-century-home inches-too-narrow bathroom doors, and only one bathroom is even vaguely close enough to navigable to someone such as I to [huge air quotes] "walk" (grabbing onto everything) from the chair to the commode. I can barely withstand to eat pretty much anything, it's gotta be "right" (whatever that is, at the time) or don't bother, it just makes me too danged uncomfortable I can use some of my funky medical herbs to get me "in the mood" for eating, but I only do those at home, it's really the only place to do odd-smelling medicinal herbs. Plus, if I don't handle the "eat now" impulses precisely when they happen, they go away and thus, no eating. I want to write music. I can't. No energy to remain at the computer doing the necessary work, plus the control of my right hand seems to be fading, a few days ag I couldn't control the mouse, couldn't keep my hand even on the mouse. Typing is hideous, I can't watch the screen or copy as I type because if I don't watch the keyboard I can't even get close to correct, and I'm currently only using right forefinger and thumb on the keyboard because otherwise, as Firesign Theater said, "There's hamburger all over the highway," characters-that-get-typed-wise.

And just by having written this much, in just this blog entry, I think I've sat up too long and need to go back to bed.

So some things I can say goodbye to with reasonable ease, but being able to type, writing music, and even sitting up... those are hard to say goodbye to. Very hard; even if all I'm saying is "goodbye just for this moment" not for "forever"--forever, we'll let come in its own time.

But back to outside: I say "Teach me how to live like this," and from somewhere, I know not where, I get a very clear answer: