Luxury

An interesting idea for a post on Tiny Buddha today, titled "We get to decide if today counts." And yet, the first questions the article posits are about the future "counting."

I'm being tortured by a belief that today "counting," on many days, is being stolen from me.

I "couldn't write music today," on the days for, whatever reason, I felt like I had nothing to give. I "couldn't work on my [fill in the blank]" because I felt like I had nothing to give.

Sometimes I asked to be pushed in the walker/wheelchair, because I feel like "I just can't walk right now."

I don't do the dishes, or I don't cook, because I just don't have the energy to stand up that long.

In all those cases, do I really not have the energy to do it? Or do I believe that I don't have the energy, and thus don't have the energy?

They feel the same—that's the nasty bit. Believing that I'm in a state of lack, and being in a state of lack, somehow feel the same. Intellectually, I know they're not, but I haven't figured out how to really and truly tell the difference between them.

Great. Not like I'm not living in enough confusion, with my nerves sending confusing messages about "is the leg hot or cold" or "is the leg numb or not" or "can you walk or not."

Yeah, the human condition is living within a world of perpetual non-certainty, in which belief or fear can cloud direct gnostic apperception of truth. And one thing's for sure about M.S.... it's nothing more or less than the human condition, simply writ so large and clearly that we do not have the luxury of ignoring it.

Ah, but that particular luxury was so nice, those cuddly days that we used to have it, wasn't it?

Sigh. As a wise friend of mine once said, there are many paths to enlightenment; but "nostalgia" isn't one of them.

Sigh.

Roller coaster

A real roller-coaster of "can/can't."

Over the last few days, I felt like I just couldn't do anything. Anything. Spent a lot of time in bed, and when I wasn't in bed, I wanted to be.

But today was different. Today, I had a farewell lunch with a student about to head off to his freshman year at Stanford; picked up a new pair of glasses (spent the day driving around with an old pair, vision was extremely excellent by my eyes really felt confused); took my wife to the dentist (where she received a "don't worry, nothing's wrong" answer to a "did a filling fall out or go awry" question, always good news); just finished a quick computer-task for the about-to-hit-us school year. No problem, with the "doing" of anything.

Except walking. Standing up. Every time I tried either of those things, I found it weird and difficult. Especially standing up; it's surprisingly, unusually, and persistently difficult—moreso than it usually is. I find it hard to place the feet, sometimes I find them shaking a little before they hit the ground.

A few other persistent malfunctions, details I'll spare you; but a few biological mechanisms persist in refusing to work, and they do not appear to have work-arounds, so I'm really not sure what to do about those... and neither does anyone else, including my medical team.

First meeting of the onrushing school year is Wednesday. I spend all of tomorrow visiting my medical team. I hope they can sustain me for the upcoming assault... I don't feel "unready," but I certainly don't feel "ready."

So how's that different from every single day, in the M.S. biz?

Somehow, I don't find that reassuring. Often, I find such things funny.

Not today.

Insurance; Campbell; Buddhists; comedy

Two things came over the Internet this morning.

First, from the Antichrist--sorry, I mean my health-insurance company. They told me that no, sorry, my dermatologist charged me $1.14 more than they think she should be charging me, so they won't apply that to the deductible. Also, from the doctor who is also a neurologist, who is treating me for my neurological disorder... him, he's charging $2.38 too much for that service, and (I forget how much) too much for that service, and (again) for that service, and well, we won't pay for it and we won't apply the full amount he charged you to your deductible. All of this, by the way, the day after the pharmacy wanted to charge me more than $200 for an athlete's-foot cream--unless, of course, I brought in the magical coupon from my dermatologist to reduce the price to only $100. And those, by the way, are the insurance-approved prices... the same insurance company that isn't willing to pay my neurologist for the acupuncture he uses to keep me from wanting to kill myself (well, it's easy to understand why they don't want to encourage him to do that, if I off myself they won't have to pay anything to anybody, the perfect solution in their minds I'm sure).

And after all that... this came over Facebook; a quote from Joseph Campbell:

‎"We must be willing to get rid of the life we’ve planned, so as to have
 the life that is waiting for us. The old skin has to be shed before the new one can come."

As true for the insurance system as it is for those who suffer from it, and from the things for which we require their assistance.

And yet, it's Campbell's message that is the more important; and certainly, the lesson we M.S.ers are constantly called upon to learn.

That, and the story of the Buddhist monks carrying the woman across the river. Yeah, the insurance company does what it does, but they don't need to ruin my day after I've read and put down their paperwork. Or more precisely, I don't need to ruin my day after I've read and put down their paperwork.

There are times when we need to carry the M.S. across the river, and times when we need to put it down.

Gee, if I had read more Buddhist literature, could I maybe not have gotten M.S.?

Probably doesn't work that way. But, comedy like that, we try very hard to write; and can't, because it doesn't work; but somehow, that's the real comedy, isn't it?

Bittersweet gifts

Some musings.

In the weather, I sense the death of summer. Not the "passing of the seasons," some philosophical musings on how nature changes, we change, everything changes, the usual... no. I perceive it as a death. Not just a change, but a final change. This summer—not all summers, but this summer—is ending. Ending with a capital E. Really ending.

I drove by Caltech today, a place where I used to do a lot of creative work. I wrote a lot of music for their theater department. I even directed a show there. It was a wonderful time. I was truly blest. And now, that place is no longer "for me." There is a theater program still, but there are different people running it. They have their own interests, their own desires, their own needs. They don't include me; they never have. That part of my life is over; over with a capital O. In its own way... another death. It died a few years ago; but driving by there today, I have to admit that I didn't feel the sweetness of "wasn't that fun" nostalgia, I felt... departure; a time that had gone with a capital G; the death of a beautiful adventure.

I sent a composition to a former college professor, thinking he might be interested in performing it with his student groups. He loved it. Oh yeah, he retired last year, I didn't know that, so no, they probably won't be looking at the composition (nothing against the composition, it's just conducting the groups ain't his thing, any more). I went to that college's library a couple of weeks ago, noticed how things had changed when I drove around campus looking for a parking place. As an alumnus, I'm still very welcome to use the library, I can even pay a very reasonable fee and still check out books. But it's not my home any more. My time there is over. Over. To add insult to injury, there's a new organ there, which if I called the right person I'd be more than welcome to play; which I'd do if my legs worked well enough to play the pedals, which they don't, and I don't think I want to take the time and energy to try out an instrument I can't play. At least that's not another "death," it's inconvenient and annoying, but there's no permanent loss involved. Well, there may be, but I don't want to go there right now.

As I look back at all these "death" ramblings... none of them are M.S. related. I'm really quite blessed. I'm getting treated with things that not only don't impact, but improve, my quality of life; I actually enjoy the hand controls I had to have installed in my truck because I can't trust my legs to operate the pedals; my "disabilities" have resulted in changes at work that actually put my skills to better use than schlepping things (and oh, have I ever schlepped in my days there); the only maybe-M.S.-related "handicap" that has really gotten to me has been the fatigue, but according to my acupuncturist—who, by the way, is able to relieve it, sometimes all-too-briefly but at least he can do something about it— there's more to it than neurological "wiring problems."

No. The "death of the summer" is the way of the seasons—all deaths are the way of nature, really, as much as we don't want to deal with them. But all these other "deaths" of "the way it used to be, and isn't any more"... these aren't on the M.S. level, they're on the spiritual level. That was then, this is now, "then" gave birth to "now," but "now" could not have been born without the death of "then," any more than the butterfly can exist until the caterpillar dies.

And clearly... I guess I haven't really dealt with the death of "then," have I?

And... I'm not sure I would have seen so clearly, the need for me to come to terms with the passing of the past ... without the M.S. experience.

A bitter, and sweet, gift of M.S.

Patron saint

This is Daruma-san. Based on Bhodi-Dharma, Daruma meditated so long that his limbs just plain fell off. He can be knocked over, but he always just rolls back up. The kanji on his chest say "success."

He's a favorite patron saint of persistence in Japan. Often these dolls will be given as gifts, with both their eyes blank. When you start a project, you fill in one eye; when you finish the project, you fill in the second one.

Some friends of ours have gone into the business of making Daruma dolls. They offered them for sale at a recent festival in LA's Little Tokyo, where my wife took us for my birthday. Traditionally, the doll is red, but they made special "LA versions" that were yellow and purple. Purple being a favorite of mine, I decided to pick out a purple one. (He's much more purple in real life than in that photo.)

I went through every one they had. They all looked not "fierce," but angry. Really angry. I mean, I wanted to support our friends, but these Darumas, they were pissed at something. Really pissed.

Except one of them. I looked into his face, and I saw, "Yeah, I'm mad at what happened to me. But I'm still getting back up."

He's the one that came home with me. He sits in my studio right in front of me, right underneath my monitor. Yeah, he glowers, but not at me. He encourages me. He's completely aware of what happened to him. He's completely truthful about what he feels about it—it pisses him off.

And still, he's not going to stay down. He's getting up anyway. He's not doing it to "get back at" whatever got him down, he's not doing it for any other reason besides... dammit, he's getting back up. He just is.

A friend, and reminder, for us all.

Ganbatte. Persevere!

Commitment

A day of getting my ass kicked. Therapeutically.

Got a couple of particularly nasty points at the acupuncturist today. II/III entry/exit block, for those of you keeping scorecards. There's pretty much no way to get those treated without it hurting. A lot. Thank God he treated them, though; I feel so much better now—and that has nothing to do with "better now that the needles are out."

But life is worth living, now. Life is live-able, now. Are any of the neurological nasties fixed by these treatments? Legs working better? Other surprise malfunctions, functioning? No. But life is worth living. I'll take that, any day.

A brief interlude; a small but ugly toe infection, antibiotics were prescribed. An antibiotic that I've had before—and one with no side effects. How often does that happen? A small gift. But I'll receive it, gladly.

Spent some time with a beloved and trusted spiritual adviser. He asked me about a few things I had said were annoying me in my relationship with other people, and his response to each one of them was, "Yup. That's you. That's all you." Nothing about who was right and who was wrong—as if there is an absolute right and wrong in the way I'm relating to the world—except that choosing to relate to the world the way I am is not morally wrong, but "why are you causing yourself so much grief" wrong. He used a lot of technical terms in his analysis (omitted for brevity, they wouldn't make sense to anyone not in this spiritual practice anyway), but I gotta admit... he was right.

And the bottom line: You want this stuff to stop? You need the spiritual practice. If you really want these things you know are karking out your life to stop... practice.

Well then.

A lesson I've been unwilling to really face, most of my life. "If you really want this (whatever 'this' might be), work for it. Because if you don't work for it, you won't get it." It has always been easier dealing with this when I was working on external things... years ago, I spent uncountable hours renovating an organ, and I'd say to myself to get myself into the organ chamber, "The organ won't renovate itself."

And somehow, I find it hard to cop to " 'I' won't renovate itself."

Percussion, I loved to practice. Kyudo, I loved to practice. If you do those right, those are spiritual practice, but those roads will take a very, very long time. There are other, faster, roads, but they take a lot of work. A lot of work.

So, there we are. Multiple sclerosis forces me to deal with my unwillingness to fully commit to a powerful spiritual practice.

As a wise man once said to me, "You needed to get M.S."

Perhaps... He was right.

Cartoon-borne truths

Thing like this are why I distrust Western medicine.

Western medicine is not without its strengths, its share of full-on miracles. "The right tool for the right job," after all. As a Chinese friend of mine liked to say, "If I have a hole in my side, I don't go to a Chinese doctor."

And no, I don't take xkcd as my one trusted source for medical information. And I see an MD every week. ('Course, he feels the same way I do about the best and worst of the way medicine is practiced in the West, and he has a lot more first-hand knowledge and training to justify those beliefs, and he's the first to tell me when I'm wrong... and when I'm right.)

But this little cartoon looks all too familiar, doesn't it?

Walking/wheeling

Spent the day today at the Skirball Cultural Center, seeing some amazing exhibitions on Jewish Magicians of the Golden Age and Houdini: Art and Magic. Quite amazing seeing how little that magic has changed over the past 100 years; they had a video recording of a performance of one particular effect that is still being performed today, almost identically to the way it was performed 100 years ago. Century-old effects and props that are identical to the effects and props that can be easily found in modern magic stores.

I spent the day in a big-wheel push-with-your-arms wheelchair. Normally, I use a transport-chair/walker, but I didn't want to take the enormous amount of time and energy (especially time) that it would take for me to "walker" it, and I didn't want to ask my wife to push me around all day, especially because we have radically different museum speeds and approaches to exhibits, and chaining us together for the day guarantees that neither of us will get the maximum enjoyment out of the day.

I enjoyed the greater speed that the big-wheel wheelchair afforded me, but the transport chair is more agile in its maneuverability. And navigating almost ADA-compliant facilities is vastly simpler with the walker. One of the "handicap-friendly" restroom stalls was maybe, on paper, barely wheelchair accessible, but it was incredibly difficult to maneuver the chair into exactly the correct position even to make closing the door possible (much less permitting other necessary activities). It would have been no problem with the walker.

Final verdict: Yeah, the big-wheel wheelchair can be (sometimes) convenient, but I want to do whatever I can to make sure I'm not confined to one of those. Really walking would, of course, be best. But one thing at a time.

And hey, if you're not in a hurry, life with the walker isn't really all that bad (considering the alternatives). The "walker life" isn't one that I'd recommend as a choice, but when you don't have that choice... well, you take what you can get.

Good, better, neither; a mystery

So, today, since I had been stuck at home yesterday and kept (let's call it that, for brevity's sake) from going to the place I wanted to go to, I decided today to say a very large "**** you" to the M.S. and take the drive to the library to do some research.

Had a wonderful time. And, I must say, "carrying" 12 books from the stacks to the desks at which you'd be reading them is much simpler when you have a walker to pile them into.

There was some wonderful air at the campus hosting the library; a gentle scent of "generosity" from happy happy plants. Ah, the lovely five-element season of Earth--not here yet, but its spirit is making itself known.

There was one point during the adventure where I was told that I'd have to "walk" (it's only in quotes for me, not for most of the library users) to somewhere outside the library, I still don't know exactly where, to obtain and pay for the magical cards that would enable me to use their photocopiers (in my day there, during my doctoral program, said machines were inside the library, not outside it). When I heard that, I told the librarian as I leaned on my walker, "Go where? Go somewhere else? Where's that? Y'know, sounds like good idea just to copy it down my own damned self." She smiled; she saw my point—and my smile.

I'm not sure what it is about leaving my house that gives me enough energy to function outside my house, and to enjoy it. I spent a lot of time this summer specifically unable to leave the house. Unable to deal with the world. Unable even to deal with the inside of the house, barely able to deal with "walking" across the house to get a drink or use the bathroom. Part of it, I'm sure, is simply deciding to do it, and having no spite or anger within that decision; simply, "I'm going." Part of it is having the energy to declare and claim that outcome; if one can't say "I'm going," to believe that one can go, that the simple doing of the going is already accomplished in the claiming of the outcome as possible to begin, one probably isn't going to go.

And interesting "which came first" question. Acupuncturists are taught that energy follows intention; but there's something different about "intending" to go and "deciding" to go and "committing" to go, and simply saying "I'm going" and reaching for your car keys—even knowing full well that you'll need the walker, that it's going to take a lot of effort, that ADA-ed places are going to be easy and non-ADA-ed places are going to be hard, or even impossible without help.

And yet, this time, I reached for my keys and left. I know that "what changed" was my consciousness, it's hard to say that the neurology was different. But was it? Or wasn't it?

Who knows? It'd sure be nice to know, though, if such things were under my total control. If they were, I'd just decide to not be limited by the lack of energy and go about my business as I always have. One of the lessons I keep re- and re- and re-learning is that "business as always" of the Former Days just doesn't happen any more. And yet, on Good Days, truly amazing (and often fun) things still can happen—even Better Things than happened in the Old (pre-diagnosis) Days.

A mystery.

New adventures in "sort of"

Ah, the "nothing hindering me" was so nice, while it lasted. It's gone, now. Not as gone gone as it has been, but it's certainly more gone than it was last week.

Today, I had wanted to go to some event. Had even planned on it. Sort of, at least.

The building it was to be held in is quite historic. Which means it's about as anti-ADA as they come.

I didn't quite have the energy to leave the house in time to get there early enough to do what it would have taken to get into the building, to the room the event was held in, etc. etc. etc. Plus, once I had gotten there, had I needed to make any kind of bathroom run, I would have had to pull myself up a flight of 8-or-so steps, without the walker, and then once up the stairs I'd have had to wall-walk to the restroom and then somehow manage to make it through the (if you'll forgive the turn of phrase) all-too-intestinal convolutions of the restroom itself. Repeat the process backwards to return to the room in which the event was held.

Would it have been worth it to go to the event, logistics aside? Well, I had thought so... sort of.

But, as you can guess, I didn't go. I was on the edge of going, too-late-or-not, simply for the sake of "**** you, M.S., I'm going anyway," but I wasn't angry enough. So I stayed home. Thought maybe, I'd accomplish something... I did, but only sort of. One thing that needed doing for work, took five minutes or so, now it's done. Hooray.

I'm thinking of going to my old grad-school college library to do some research, later this week. Maybe. The building is gloriously ADA'ed, but there's quite a hike from the closest place I can park to the building itself. And a bit of a drive to get there. I haven't really committed (to myself, the only person involved) whether I'm really going there this week or not.

Am I allowing myself to be defeated? Should I be less quick to give up? Should I be more realistic with my assessments of what's possible? Should I be less judgmental of myself for not being in my hoped-for "no problem for the typical Yalie overachiever" state? Should I be better at prioritizing?

Yes. All of the above are true. In their own ways.

Sort of.

There we go again...

"Doing" (in a good way)

Today, and for the past couple of weeks, I find myself more able to function in the world than I have for quite a while.

I drive to the store. No problem. I take a former student somewhere to do research, then take him to lunch, then take him home, then go somewhere else.

Even last month, that would have been unheard of.

I wrote a couple of pieces of music. I intend to write more; but unlike last month, I think I'll actually be able to. But I might very well actually go somewhere and take care of some business and write that music in the same day.

Wow.

I got some great exercises from my chiropractrix yesterday; she's also a sports-medicine person, she knows all sorts of cool stuff. Exercises that I can do without risking falling over. That'll strengthen my legs so I don't have to worry so much about falling over. And how to pace myself and how to better judge where the "it's good to push yourself" and "idiot, stop now or you'll be sorry" boundary lies.

So I'm going to turn the computer off and go do those. And then I'm going to make tea. And then I'm going to work on music. And maybe, this afternoon, I'll drive to the bank and take care of some business.

Wow.

My ever-changing "normal" for now resembles very much what my old "normal" used to look like.

Comedy like this, you just can't write.

Strange pair

World is changing. We're still in full-on summer, but I feel the coming of the energy of Earth, the energy of late summer. Sympathy is the emotion of Earth.

Last night at a Location That I'll Leave Nameless For The Moment, someone went off on how he was annoyed at how certain people had mistaken Thing A for Thing B and that was Just Not Right.

In an earlier more confrontational life, I might have lit into him, even gently. But last night, I said something that I think he's very rarely had said to him:

"You're right."

I told him he was right; that confusion or no as to the exactitude of Thing nomenclature (I saw the same confusion that he saw), there were things not related to the confusion that those who were confused had to deal with, which took a higher priority for their deliberations, and their confusion had nothing to do with their decision making; but nonetheless, he was completely correct.

No anger, no agenda of slipping revenge in through the back door; no riposte of any kind. A simple statement of fact: he was right.

A lot of things have, and are, happening to me because of the M.S. journey. My muscles--my legs worst of all, but all over my body--are simply wasting away. I'm often unsure whether I'm going to be able to walk, to stand up. To do all sorts of things I've always taken for granted that are just ... evaporating.

And yet... it is much easier, easier than ever before, to not take somebody on, to not contend merely for the pleasure of me being right. And we're not in the season of Earth yet, but I feel its energy, and I find it sympathetic to me, and it's helping me to be sympathetic to others.

Contending simply for a position of "intellectual correctness" is something I've done all my life. I'm not by any means completely "over it," but person to person, face to face, the uncontrollable instinctive drive to contend is fading.

When I talk to students, even when I have to talk to them about things they've done wrong, I find myself beginning with ... sympathy. It certainly doesn't mean that I let them get away with doing wrong things, but I begin with sympathy. There certainly was a reason why they did whatever they did, and sometimes what they need most is simply to have someone listen. The "you did X wrong, and there's a price for that" comes separately; but they certainly appreciate the difference between talking to them and talking about what they did.

Muscle wasting... and ability to extend sympathy. A very strange pair of gifts of M.S., is it not?