Saturday, May 31, 2014

Buddha of Birds

We have to work very hard to find our true natures. Doing things that we may find "unnatural" to become our natural selves. We see people like Buddha, Christ, Mohammed, many other truly amazing people, whose truly amazing accomplishment is to become truly themselves, and to see the presence of the divine which not only surrounds us, it's ... everything.

We seem to need to work very hard to see what's right of us.

And so we come to the Buddha of Birds.

Now, let's be completely honest, it "said" with words, nothing. What I am reporting here as what the bird "said" is, of course, what I imagined hearing in my head. But what it "said" was very clear to me at the time, so that's where we are.

Anyway, the bird flies in and sits down on a sprinkler head, in my back garden. And just sits there. Doesn't sing, doesn't preen itself, it ... just sits. Looks around, but basically... sits.

"Why did you sit there?" I imagine asking the bird.

"Because that's where I am," it seems to tell me.

It sits there for a while, then flaps off to do what, I have no idea. Presently it flaps back, but to a different sprinkler head. Where it just sits.

"Why did you sit there, this time?" I imagine asking the bird.

"Because, now, that's where I am," it seems to tell me.

And just... sits.

This is clearly the Buddha of Birds. Well, all birds are, truthfully, but yesterday this particular one seemed to have a dharma teaching for me. Being the Buddha of Birds, and all.

But what's it's lesson?

I'm just sitting. Here. Because here's where I am, right now. It goes off and does what it does, and then sits somewhere else. Where it just sits; and sits there, because that's where it is, at the moment.

The Ram Dass of birds. Be here, now, because now is when it is and here is where you are.

A dharma lesson for all of us. MSers may have a different list of symptoms, but the same is true for each of us, Disease or No Disease. Now, I could regale you with a list of What's Failing Today and How That's Like Every Day or How It's Different Today. A barrage of "WTF is THAT about" from various nameless and faceless non-entities involved in Official Stuff, the dealing with which can make one hope said non-entities would come down with an incurable disease so they'd know what it feels like, and further to hope that said non-entities suffer as much or more than you do, hoist on their own petards, for making your life miserable. Hoping that the people who made the system that way get their own faces peeled off by their own petards and see what life's like now, gee, I wonder if your face is missing? Best have a five year waiting period, to see if your face is really missing. Just to see. Just to be really really sure that the petard-ripped-off face hasn't grown back. Like they never do, but just in case, we'd better wait, right? Bitter? Moi?

Yes. But the Buddha of Birds isn't bitter. It may cheep loudly at someone or something it doesn't like, or to get attention from one of its comrades, but bitter? The Buddha of the Birds?

Nope. At the moment, it just sits. Because that's what it's doing and that's where it is.

Frankly, it has better things to do than be bitter. It doesn't even cross its mind. It just sits, where it is.

A lesson for all of us.

Wednesday, May 28, 2014

Well, I suppose we could go through the Litany of Malfunctions, but that ain't gonna help anybody, myself included...

I could go down the Just Physical Stuff road.. I can tell you, potential Cath Club members, that gentleness has its own special magic... I'm back to Bard caths, bigger in diameter than the GentleCaths and less subtle than the GentleCaths, but if you wait until B-san is psyched to empty and, remembering the magic combo of Goop and Angle, just be gentle... Ask nicely when you come to the ProsGate, as I call it, ask to go  in gently,  and Alan B-san will invite you in, if he's psyched to have you. Changing from "C'mon,  lemme in, dammit!" to "Here I am, if you please," and the Bard cath becomes gentle. Plus, it has superior "plumbing" to let the liquid flow out, two holes instead of one which lets Alan empty much more enthusiastically, and that's definitely win-win.

A brief pause... and we're back I should rejoice at how enthusiastic my kidneys are. Clearly, no problem there, especially when they shift into "diuretic" mode. Well, I'm trying to stay hydrated, so whaddaya gonna do? More in, more out, that's the way of things... which, in the big picture, is good!

And on another note... Friends, spiritual work. That's what I, and if I may be so bold to suggest, we MSers all, really need to do. What else have we? The ... stuff... that is proffered as MS "treatments" doesn't always work. At all. Well, they do what they do, they help some people sometimes, but spiritual work helps everybody. And no side effects... they only have a primary effect: liberation.

Follow the one that calls to you. I'm working very hard on the one that calls to me, and it's working wonderfully. It's making me feel something that no medical or pharmacological treatment has even gotten close to:


Do my fingers fail? Yep. Am I still in the Cath Club? Oh yeah. Is there an ever-increasing list of tragic malfunctions, difficulties, losses? Hell yeah. But if I do the work, or as my spiritual advisor calls it, The Work, because it IS work, how do I feel?


Try it. You might just like it.

Thursday, May 22, 2014

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:

Just live.

And then I think... yeah. That's the way to go. Just live.

So that's what's before me, right now. Just like, y'know, being alive and stuff, has nothing to do with The Disease... just live.

And so, gentle readers, I leave that with you, for your own thoughts and perhaps even for "homework"...

Just live.

Friday, May 16, 2014

This story begins by sounding like it's going to be bad.

Yesterday, I hit the ground. Not hard, but bad. Legs just went out from under me, knotted themselves up, and I could not move. Anywhere.

And what do I think while I'm on the ground?

It really is nice and cool down here. It was 101 or something outside, at least that's what the phone said, it was wicked hot. Nasty hot. But on the floor, it was nice and cool. And I enjoyed that.

I call for help, which comes, and I explain that I can't move. My poor wife, whom I outweigh by maybe a couple of pounds or so, not much at all, does her best to try to do something, anything, to help.

Try as she might, there was nothing that could be done... my legs were so weak, and so completely out of my control, that there was nothing to do.

She eventually managed to get me onto some sort of blanket, and used that to drag me over to the bed, which is the only place I could manage to grab ahold of and hoist myself into any non-on-the-ground position. With her help, I got my legs into some sort of kind of maybe vaguely useful position, but what with the beadstead and her help with my legs, I managed to get to my knees and hoist myself onto the bed, at which point I managed to get my hips enough onto the bed, at which point my wife could hoist my legs up and I was lying on the bed nice and safe.

And here's the thing. At the end of it all, I was... happy.

The floor was deliciously cool, perfect for a hot day. Yeah there were plenty of "ow that hurts" moments, but none of them stayed with me. Yeah my wife had a hard time helping me, there were many things she tried but that just didn't or wouldn't work, but between the two of us, we made it. And that, that, was wonderful.

Being the caregiver is hard. Nasty hard. The one you love is failing, and there's not always anything that does anything they might think of as actually helping, because whatever they try, sometimes it doesn't work.

And yet, at the end of it all, it worked, and it's wonderful. You were rescued by one who cares for you; in my case, one whom I love more than anything else.

I hit the ground. And couldn't move. And couldn't help myself. At all. And yet... it was beautiful.

It was a real "Kino's Journey" moment. The world was definitely NOT beautiful. And yet... it was beautiful.

Now that's a real gift of MS. To see only beauty, where nothing is beautiful. That's a wonderful gift.

Thursday, May 15, 2014


Had such a wonderful dream last night.

I was in the Magic Castle, in Hollywood. It's a hundred-ish-year-old mansion converted with cleverness and dumpster-diving into a very special place, but it's easily one of the most wheelchair UNfriendly places I've ever been. So unfriendly that I pretty much never go there anymore, which is too bad, because I had ever so much fun there, back in the pre-accessorized days.

And in this dream I'm walking, yes walking, around the Magic Castle, and I say to myself, "I think I'm going to walk up the stairs. Because I can." And I did. And it was fun.

This morning, I'm awake (or so I call it, although not "awake" Buddha-style. Yet.) and I'm typing this while sitting in my wheelchair. I'm going to do all my Morning Stuff from, in, or transferred from, my wheelchair. Because walking, dream-style, ain't happening. Yet. Will it happen some day? Who knows?

I will keep up my Castle membership, though, for many reasons besides "just in case." After all, looking back over our lives, haven't there been many truly amazing moments that, at some point, hadn't happened yet... and then did. Because one never knows what will, or may, or can, happen, but just hasn't.


Tuesday, May 13, 2014

Doesn't matter

There was a really sweet moment, in Adult Swim's new Rick and Morty series. Morty and his sister Summer have a real, intense, powerful memento mori moment (which sort of thing happens a lot on that show)...

But afterwards, they get posited some challenging and direct questions, to which they smile and say happily,

"Doesn't matter."

I see this (minus as in-your-face memento moments as pictured above) in my garden. Something has happened to some plant; it's still rooted, but it has been sorta kinda bent and twisted and knocked over. It's nothing like it once was; I'm amazed at how alive it still is, given its current state.

Sound familiar?

And yet the plant smiles. It loves the sun, it loves the attention of the bees, it's very happy. Knocked over? Nearly ripped out of the ground? Brought down from three feet high to three inches high?

Doesn't matter.

Ram Dass asks "Where are you? Here. What time is it? Now." It's certainly more poetic, but it interposes very interestingly with Morty and Summer's smiling statement:

When is it? Doesn't matter. It's now. Where are you? Doesn't matter. You're here.

It's definitely a morning to put "doesn't matter" to the test, as Tolkien often posited ("coming to the test" is huge in the Lord of the Rings books). But here it is, today. I'm nearly unable to operate this computer keyboard; I'm unable to five-finger "touch type," I'm using mainly index finger and thumb, especially with my right hand. The mouse presents its own problems. I was hoping to write some music, whoich maybe maybe maybe I'll do but then again maybe not; I may need to lie down and expect, with hope, the "elimination issues" to behave a little more accomodatingly. And yes I know that word has "commode" in it, let's not go there, lexically at least, for now.

So I can't eliminate the way I wish I could, I may not be able to write music the way I wish I could, I'm almost unable to two-finger-type even for short things like this. Here, and now, at least. But I go to look at the back garden, I feel the sun and smell the air, and I am left with as inescapable a conclusion:

When is it? Doesn't matter. It's now. Where are you? Doesn't matter. You're here.

No mater where you are, gentle reader, the same is true for you. Go outside and feel the sun however you can. Feel the wind and taste the air--where I live, the air changes every five minutes or so, it's quite amazing. You are where you are; when, is simply now. Like me, you ma have neurological nonsense that is preventing you from doing what you want.

Doesn't matter. You're here, it's now. 

Which is, actually, a pretty nice place to be, if you just see it for what it is. Here; and now.

Friday, May 9, 2014

Hard enough; easy enough

Days are darker and lighter than I had expected they might get.

I've acquired a new pointless pain in my right arm. Yeah, the one Finn the Human keeps losing on Adventure Time. Life imitates art, I don't need. At least his newest version of an "arm" involves a flower. Mine, however, reminds me more of this one... although my pain is in the upper arm, my expression looking at how my right hand is failing me is very much Finn's.
I think I'm coming to a new peace with describing my current state-in-life as "retired." One of the associate deans of Yale who was there when I was a student there, is finally retiring, and he has been lauded beautifully by the Yale official news system.

For years, he has carried the "mythical yale beast" staff in the annual commencement processional. (I think the only one he missed over 30+ years was for the birth of his son).

I was not publicationally, or sadly, in any way, lauded at my departure from my former employer; the most I got was the phrase "the end of a forty-year tradition" the year I finally couldn't play the organ for the school's commencement service any more. But, as I said as we opened, days are lighter than I expected they might get. Ram Dass says things like "if they don't appreciate you, that's on them, but if you are stuck expecting them to appreciate you, that's on you;" and there, at least, I don't need to be stuck any more. As Finn in Adventure Time has said at similar crucial-choice moments, "I'm done... I'm done."

But, also darker... I haven't managed to get outside simply to enjoy light and air, for too too many days. I'm not in the "I have to sleep now now now" state that I used to be in, but I do spend a lot of time in bed... I think, primarily because I have surrendered control to my elimination system. I don't wear pants around the house and/or in bed, which I'd love to do for warmth, but I don't want to delay my arrival in the bathroom by having garments in the way taking too long to deal with and get out of the way. Sometimes Alan the Bladder screams urgently for attention, and as for the mis-functioning of my large-intestinal-elimination system, the Drainer of the Dregs as the Chinese medical system calls it, I have no @$@#$ing idea what it's up to or what it wants or whether it's going to behave in any way according to my wishes. I don't want to be out of bathroom range if a Hindenburg-esque moment should arise, and trust me, I've had warnings and zero-warning moments. I do have "adult garments" which I never go without, which have in fact saved me on an occasion or two, but to spare you the details all I'll say is even saving me "enough" means "no fun." Even though it does keep me from "disaster."

But back to "retired"... if I look back over what I've done over the course of years, I see the Yalie Overachiever Pattern of doing two or three completely unrelated jobs at once. In the independent school world, they basically suck you dry. They want you to teach that, and maybe that, and coach that, and could you coach that too, and we also need this... and each one of those might as well be someone's 3/4 or full-time job.

So if I were to simply stack all the stuff I've done, and see how high that compares to just one job over the same course of time... it's very, very high.

So yeah, it's ok to retire. MS or not. I've done ... a lot. It's OK to retire. And do other things. Like, who might have expected it, to enjoy being alive?

Which I'm not doing a lot of right now.

But if I can do nothing else... that needs to change. I have no idea how to do that. But I need to do that.

So I guess this is adventure time, eh? And the adventure is... to be here now.

Hard enough. Easy enough, if one doesn't choose to make it "hard enough."

So then... here we go, right? Right?

We'll find out.

Wednesday, May 7, 2014

Just like...

What's "easy" keeps changing.

Then again, every day is different. That's, you know, life.

But things even as simple as "let's go to the oculist and pick up my new glasses" is suddenly not easy.  Something's up, or wrong, or I'm in pain, or ... well, something, but it's suddenly a bad idea to leave the house. Bed.

I take a great deal of joy simply sitting in the back garden and watching the plants and the birds and the honey bees and the squirrels and the cat and... you know, life. Except it's not a good idea to leave the bed, it seems. I get up, into the wheelchair, and ... nope. Couldn't even make it that far. Back to bed.

Much of this I blame on elimination problems. Alan the Bladder has his own ideas. Colon, for whom I haven't found a non-obscene name, has its own ideas. Everything has it's own ideas.

Yeah, I know, just like life and all.

I'm hoping to make it to the oculist's today. I'm going to snag a snack, another cup of pu-erh, and hope for the best with the morning's ... necessaries, shall we call them delicately.

Perhaps I'll even write some more music. Some got written yesterday, quite well too. But when you're writing music about boats in the ocean, for a big-ass band, it takes a lot of notes. A lot of notes.

So that's all the time I have at this moment. Off to... well, have what needs to happen happen without too much discomfort, and with enough success so that it can actually fit into the category of "happened."

Here in southern California, the fake-summer heat has receded, and it's back to definitely spring. I hope I can get out into it today and actually enjoy it. It is quite wonderful.

Just like, you know...