Saturday, September 29, 2012

Interesting gifts

Spent the day with a friend who's struggling with "I'm on the wrong road." Many... most... of my Yale class- of-'82 chums reported a similar problem... either "I'm in the wrong job" or "I'm working for the wrong people."

We M.S.ers, we have all sorts of stuff to deal with, physiologically/neurologically... if there's one thing we all share, it's increased sensitivity to—well, pretty much everything, and having just lived through it myself, I know all about "I'm on the wrong road" dissonance.

Personally, having to completely take myself "off the board" and go on disability, certainly came with a lot of issues that demanded (still demand) processing... but we do get a kind of permission to "press the reset button" because of our neurological-ity. It isn't necessarily easier, but when you're "accessorized" the way we are, when you say "Look, I just can't take this any more," it's somehow OK, because you've got The Disease.

But I've had friends who were (and alas, are) destined to come down with some sort of disease (fortunately not necessarily neurological, of course), because they were in such horrible dissonance with the road they were walking. That they felt they had no choice but to walk. Lady Adira, a character in Babylon 5, said that we say to ourselves that "we have no choice" to comfort ourselves with a choice we've already made, and aren't willing to change... and bad choices do cause a great deal of very, very painful dissonance.

Walking ANY highway is an interesting thing. We M.S.ers, we're gifted with especial sensitivity to any highway we travel... to every highway we travel. We are also gifted with societal/familial permission to say "I can't take X" without being somehow condemned for "lack of stick-to-it-ive-ness" or whatever. Somehow, we're permitted to say "No. Enough!" in ways we couldn't without the assistance of The Disease. Yes—the assistance of The Disease.

And yet, when you're on the wrong road, it hurts just as much, Disease or no Disease.

This gift... is a very interesting one.

Monday, September 24, 2012


Two things to talk about, today.

Thing 1: I spent the day with some organ builders, looking at an organ that I used to play, and that I (along with one of said organ builders) helped renovate. When I was last an organist at that church, it was working; it isn't now. The expert assessment of the instrument, about it's cause for non-playability:

The electrical system is bad. In another word, its nervous system is bad.

Well, I certainly know about that. Art imitates life. Or, more precisely in this case, life imitates life.

Thing 2: I spent some time yesterday talking with another friend from Long Ago. I first met him in 1985 when he was just a 9th grader; he's now a father of two, he has both a Ph.D. and a J.D., and a whole bunch of other very impressive accomplishments. He, apparently, had the same contretemps with The Academy as I had with my now-former employer, and we both had a great deal of sympathy for each other. And many a story that ended "Yup. I know what that feels like."

But one thing he said to me, I really want to share with my fellow M.S.ers: I told him that I was sad about what I was no longer able to do, specific thing upon specific thing upon thing that I used to be able to do, but for long list of reasons specific to each Thing, my experience of The Disease was preventing me from accomplishing said Thing. And how I felt that I wasn't able to—and there are the words I used with him and that I use a lot, nowadays—"accomplish anything."

I told him about a couple of other things I was involved in at the moment, and for which in my (I suppose I must be honest, perhaps at least a little over-inflated) opinion, I wasn't doing much (again, my words)...

And he stopped me, and said, "You're still making a difference."

So these are my words of encouragement for my fellow travelers on the Neurological Highway. "Difference" matters to the person for whom the difference is made. Your—my—opinion about its size means nothing. My friend still remembers one sentence I said to him, years ago, I don't even remember when I said it (but he certainly does); and he stressed how much difference it made to him, and that I was the only person who ever said something that encouraging to him.

So, my friends... pardon my language, but fuck this disease. You are still making a difference.

Your, and my, misbehaving nervous system is an irritant, but it means nothing. The difference that you make in someone's life is precisely the difference that they need made for them. The size of the difference that you perceive, the means and methods that you (I) use now, are different than they were, and that's where we get hung up. But none of those matter.

What we perceive as what we do for others doesn't matter.

The difference we make in their lives does.

Friday, September 21, 2012

Narrow escape

Took a quick jaunt down to the Rose Bowl today, to watch the space-shuttle-shuttle flyby.

Well, unfortunately, it wasn't as quick as I'd hoped... of course the "bladder alarm" went off, while I was sitting in the car, in the just-above-comfortable heat, waiting for the Magical Moment to arrive. That'd be the shuttle flyover, not my bladder, of course.

So, it's not crowded, but there are quite a few people around, and I think, Great... even if I use my P-cup and do it in the car, there are all these people around...

And then, it dawns on me: Every last person here is staring up at the sky. I could take my clothes off and lie naked in the bed of my truck, and nobody would ever see it, because they're all looking up at the sky, hoping to catch sight of the shuttle.

So, I make hasty furtive use of The Cup, praying desperately that this moment is not going to be the time the shuttle flies over and I miss it because I have to pay attention to what I'm doing...

Success. No missed shuttle flyover. I feel great about making it through this moment of challenge.

And then...

It happens again.

Apparently, B-san (Mr. Bladder) doesn't like committing. I thought you were done, I think... Nope, he says, I've still got a lot to give... and I want to give it now NOW NOW!

So, Furtive Desperate Use of The Cup, take 2... and again, I get away with it. Everyone's still looking at the skies. And I don't miss the space shuttle flyover.

A narrow escape. But a successful one. In not that many moments, the shuttle finally flew by, and it was totally cool. I was especially surprised at how... dinky it looks, when compared to a 747. And a final note—apparently, it took a long time to get to where I was waiting because it was flying by the Hollywood sign and the Griffith Observatory, time after time. Now, I'll admit, that's definitely a fantastic photo, you can catch it and many others on the web, but still... JPL and Caltech helped get, and keep, the bloody thing in the air, they could have done multiple flybys for them, too. After all, it's only fair.

But, their delay was my blessing, in my Battle With The Bladder. A small and quiet triumph, but a triumph nonetheless.

But the most fun of it was... it didn't just "fly by" where we were... it buzzed us. Dang, it was cool!

Wednesday, September 19, 2012


I had a wonderful dinner last night with a friend that I've known since ... oh my ... 1978. And oh my, the roads we've traveled together... and even though our ways have since parted (she spends a lot of time on the other side of the planet), we're still just as connected as we've always been. And, I'm thinking, always will be.

We've both had our own, oh let's call them "issues," with the bodies we're driving our consciousnesses around in; I've had  (am still having) the whole M.S. adventure, she's had vision issues, diabetes, even a heart attack... but both of us are still laughing and plowing forward as best we can.

She had wonderful words of encouragement for me. Especially over my departure from the teaching, and working, world. In short, she said to me:

  1. You needed to get out of there (my last place of employment). It wasn't just "time to go," I needed to go.
  2. You have a lot to offer. Always have, always will. And now, given what you've gone through, you have even more to offer.
  3. Honor what your body asks of you. Don't worry about what it "means," it doesn't "mean" anything. Just honor it.

Number 3 has been especially hard... there have been things I've wanted to do, and plain old fatigue has been stopping me. How I become so fatigued, I have no idea, but I am, and have been, and continue to be. But don't worry about it. It doesn't "mean" anything, it just is. Honor it.

And, something I was reminded of hanging with her last night, and I think it's a good call for all of us to  remind ourselves, "I gotta get this crap outta my way, and then I can go live my dream" is something we all share. It's not a very comfortable place to live, but it's a very human one. And if you feel that... you've got a lot of company, my friend.

So, I pass along to you the reminders she shared with me:

  1. Honor what your body asks of you. (After all, you need its help, here in this life, you better be nice to it.) Its needs are its needs. They don't "mean" anything. They just are. Honor them.
  2. You have a lot to offer, and today even more so, because of what you've lived through.
  3. And laugh. Nothing pops an over-inflated ego as wonderfully as laughing at yourself; nothing pops that lead balloon that is weighing down your soul like a good laugh. 

It's important enough to say it again: honor your body's needs, know that you're an even better resource for yourself and the world right now because of what you've lived through... and laugh. 

Always... laugh. You'll always be surprised at where that will take you.

Monday, September 17, 2012

Even small quantities...

It's amazing, feeling the change of seasons. Southern California doesn't get Fall the same way New England does, even the same way Nevada does... I can feel the autumnal energy in the air in Las Vegas more strongly than I can here in Pasadena. But we've definitely turned the corner, we're heading to the Next Phase... the season of Metal. Metal... is my friend. Has always been my friend, has always been a very special friend. I can use a friend like that, right now. (Who can't?)

A good acupuncturing today. Nice poetic points... the Gate of Life; the Spirit Storehouse; Constricted Muscles—well, that's not particularly poetic, but it's supposed to relieve constriction not only in the muscles but in the spirit—and one of my favorite points, the Intermediary.

Leg muscles are weak, and showing no signs really of any kind of improvement at all. Standing is especially difficult... sometimes, emptying the dishwasher just plain takes too much out of them. My legs do not enjoy standing for long at all, and they're given to tottering and sometimes they come very close to collapsing under me. One of them often does... fortunately, I haven't dropped anything or hit the ground yet, and with luck, won't. But I come much closer than I'd like, too often. Way too often.

But, at least I'm getting stuff done, this evening. Rather than even attempt creative work, something I'm not quite ready for at the moment, I proclaimed it an evening of Handling Stupid Stuff. Fill out some forms. Find and if possible photocopy the other forms the aforementioned Forms are requesting. Empty the dishwasher and, if enough leg strength persists, take something out to the trash. The whole point of this is to get said Stupid Stuff out of the way so that maybe, just maybe, I'll be able to do something creative tomorrow. (I do have to call someone on the Other Coast tomorrow, about one of the Forms, but that'll be one of the only Stupid Things that'll eat my creativity time tomorrow.)

On the list of Not Exactly Creative Things That I Still Gotta Do Tomorrow is also... pick up some B-complex vitamins. My doctor is going to get me some injectable B12, but he says I need Other B Stuff. Which, fortunately, I won't need a needle for. Yes, I know I see an acupuncturist all the time, and you do NOT want to hear about where he has to stick me sometimes, but at least the pain stops when the needle is removed, unlike an injection that can continue hurting for a week. Or more.

And... if I've got enough energy... while I'm looking for B vitamins that aren't full of crap (it's quite hard to find "nutritional" supplements that aren't full of additives that, at the bottom line, are basically just plain crap), I'd like to pick up a carrot so I can make some namasu. I picked up the necessary daikon at the Japanese market on the way home from the acupuncturist's... this stuff is wicked easy to make, especially when you have a mandoline to do all the hard stuff (julienning the veggies), and it's much better for you to munch on than salt and pepper chips, much as I like them. And, for those of you inclined to international cooking, you can use it as a sandwich garnish, it's a nice addition to bahn mi, or heck! You can just put it on a hot dog instead of sauerkraut.

Y'know, I've spent years on the zero-dairy-ever-and-that-means-ZERO diet, and I'm not exactly enjoying eating a lot, right now ... haven't enjoyed eating for months. When you find something you can make and actually enjoy eating, even in small quantities... that's nice.

And who knows, maybe tomorrow I'll create something. Having not been able to do that for weeks now, several weeks, far too many weeks... creating something, even in small quantities... that'll be nice.

Friday, September 14, 2012

Hope is nice

Not many changes since our last chat.

My "retirement" (not exactly the word that precisely describes it... oh, to save time, let's just call it "departure") from my previous employer has gone public in their quarterly newsletter, and now I "get" to explain it further to people who want more details. But that's OK, it needed doing, and I think I'm over a lot of the resentment that I carried with me about said departure.

I've been trying to walk when I could, to take whatever "exercise" I can, but I still spend a lot of time in the bed. It's down to "I need to spend a few minutes lying down" rather than "I need to spend a few hours lying down," which is good.

I'm still on a "non-creative" streak, alas; I'd rather be writing music, presentations, anything, but time gets sucked up with "doing business" or "twiddling technology" and then I have to lie down for a while (see above), all of which is annoying. Yeah, I get stuff done, but not what I want to do.

But, as with M.S. itself, that's life, ain't it?

Plans for this afternoon: My parents are in town, we're going to go to our favorite Taiwanese Tea Shop, and I'm going to treat my mother to How Tea Is ACTUALLY Made; she's a teabags-are-just-fine type, I expect there's going to be a lot of "Well! Would you look at that!" and other Fun Things Moms Say, but I'm sure it's going to be, at the end of the day, fun. Then, dinner at our favorite "vegan sushi" place. It's so nice to be on a non-dairy-for-any-reason diet but still enjoy a restaurant where I can eat anything.

And with any luck, I won't have to interrupt the proceedings to lie down for a while.

Perhaps... there'll be pictures to share, the next time we chat. And with even more luck, there'll be a "next time" for us to chat.

Hope is nice. No matter how it manifests within us. And if things work out... they'll work out.

They always do.

Tuesday, September 11, 2012

Gateway to...

Currently chasing down vitamin supplements, rather than pharmaceuticals. I've been told by both my herbalist and my acupuncturist/MD that I need to start chasing down an alphabet soup of vitamins.

My MD was explaining how B12 metabolism works; it is, of course, like all things metabolical, sophisticated and complicated. Many failure points, at which "pernicious anemia," B12 deficiency, can easily arise. Which, interestingly enough, was something my MD was considering was actually at the root of my problems, before I got The Diagnosis via gadolinium and The MRI. Which he thinks may yet be part of my larger-scale "Problem" with a capital P, and which diagnosis is also pointed to by my herbalist.

B12 needs folic acid, a nutritional pair; you don't want them out of balance, says my MD, if you're taking B12, you gotta have folic acid. Which is in all sorts of things, the "folic" is linguistically related to "foliage," it's in leafy things.

And, surprise surprise, according to Wikipedia, folic acid is also in ...

... you're not gonna believe this one...


If there's one thing I'll say about this particular stretch of the Neurological Highway, it takes you by the most interesting pharmacies.

And no, nobody has been telling me that I "need to drink beer."

But still, getting your ass injected with B12: gateway to beer.

As a story idea, I couldn't sell that even to Adult Swim.

But, then again...

Saturday, September 8, 2012

For once...

Not at all usual for me to "double-post" on one day, but I had to share this one with you.

So, my herbalist says I need B12. Sublingual (under the tongue), he says, will be just fine. And so many micrograms, once a week, every week.

Very easily doable. Trivial. Instant success, easily achievable, easily achieved. Another no-side-effect win/win solution.

Or so I thought...

Poking around a few places that sell such things, I very quickly find many different brands of sublingual B12....

Each one of which... is laced with milk. "Lactic" something, or sometimes plain and simple, full-on milk.

So, here's the thing: the very doctor who said "You need sublingual B12" also said "No milk of any kind, for any reason, ever."

The thing he asked me to take, is delivered along with the thing he told me not to take.

This, by me, is paradigm "not win/win in the least." The very antithesis of win/win.

It's very discouraging, trying to get Western nutritional supplements without some kind of extraneous crap in them. Especially milk, which seems to be in everything. I found "milk" listed as an ingredient in one brand of potato chips. I mean, come on man, I've made potato chips, myself. Slice the potato, bring the oil to the proper temperature, drop the potato slices in the oil. When it's done you take it out, put it on a rack to drain, salt it, and eat it. Not rocket science. And no milk required.

Y'know, a lot of people say a lot of things about "medical marijuana," but at least they're straightforward with you. You want marijuana? They weigh it, you pay for it, you're done. The only thing in it is the plant.

For once... finally... no milk!

Is that the only place where I can avoid the seemingly inescapable stealth milk?

How the mighty have fallen... into the milking bucket.

It just might happen

Yesterday was interesting, in many ways.

One of my favorite activities at the high school at which I used to work was Friday afternoon Anime Club. I figured, what parent is going to be so uptight that they'd object to watching cartoons on Friday afternoon, after the school was closed? None of them, that's who. And oh, the fun we had! We only ran things with literary value... Never Naruto, shows like Gankutsuo, Serei no Moribito, even Ouran High-School Host Club. And at the end of last year, we'd finish with some nice tea, usually oolong. Delightfully civilized, it was.

And for the first time in twelve years... No Anime Club. I spent the day on the 101 freeway, going to and from my herbalist. Fun-wise, hardly a fair trade. But, at least I didn't have to go through any nasty emotional stuff... It was really just a "Huh! No anime today. Wow..." quiet moment. 'Course, putting one's attention into the 101 freeway does dull whatever bitterness might have been there.

Although it was a good visit at the herbalist. He's not a "dharma talk" person like my acupuncturist/MD, but we have fun anyway, and I learn all sorts of amazing stuff from him. He reeled off a long list of actual medical benefits offered by cannabis (oh, I wish I had written them down, they were quite amazing, and quite a respectably long list), and some interesting tidbits about vitamin/mineral supplements. For example, our bodies use magnesium in hundreds of ways, but one of its best-known effects is as a laxative--except if you're magnesium deficient. If you take the usual "laxative dose," but you don't get the usual laxative effects, it means your body's putting the magnesium to other uses, appropriating it before it gets to the "laxative" point.

Other "fun" activities yesterday: I suppose one could stretch to call it "exercise," I traversed the lengths of an electronics store to pick up an early birthday present for my wife. Walked, I'm guessing, around 150-170 yards--it's a big store. Challenging and much more difficult than I'd like. But I made it.

Today's agenda--Taiwanese tea/lunch with a friend whom I haven't seen in WAY too long, and afterwards upon return home, write music or work on an upcoming presentation. I want to move back into a "creative" space, enhanced by--not impeded by--my M.S. experience. If I can stay awake long enough, post-lunch... it just might happen.

I'll let you know.

Wednesday, September 5, 2012

We'll see...

A nice, gentle, acupuncturing today. Most of what we talked about was my doctor's daughter's wedding that happened just last weekend (many others there called it "perfect" and "best wedding ever," always nice when the attendees agree with Papa about things like that) and how to approach some Western-medical issues I'm having.

I think I'm ready for another memento mori moment... I just heard that there was an article in the school's general-community/alumni newsletter about my (and a couple of my former colleagues') departure. I'm hoping that, when everything's said and done, I laugh.

I laugh at passing out and hitting the ground, I laugh at my bladder's misbehavior... if I'm lucky, I'll laugh at this, too.

Earlier this week, I was actually starting to get the "music writing" thing back underway. The "creative" thing. Today's acupuncture treatment was (among other purposes) aimed specifically at getting that working again. We'll see what happens tomorrow...

Hope springs eternal.

Also on the "prescription" list... exercise. Try this particular gentle self-massage. Drink more water. Take more magnesium. Drink more water. Create. Enjoy what the season gives. Rinse, lather, repeat, as the saying goes.

Hope springs eternal... we'll see what happens tomorrow.

Sunday, September 2, 2012

Memento mori

Well, here we are, the Sunday before Labor Day. About the time when Target used to run ads featuring happy adults zooming through the isles, followed by gloomy children; the soundtrack happily sang, "It's the most... wonderful time... of the year!"

More than half of my life (I just did the math, 65%), I've been in, or working for, a school. These first days of September were the last moments of freedom before It started. And the starting up of "It" was always... somehow... what I had lived for, even though Its starting also marked the end of the glorious summer.

Because as taxing as It could be,  It  was when and where the magic happened.

Well, things are definitely different now. 

I borrowed the auditorium at the school at which I used to work last week; they weren't using it, and I needed an "empty stage" as a backdrop for something I was videotaping (more details on that project as the project becomes more sharable). It was convenient, I guess, but the place absolutely radiated the message "This isn't yours any more." (I also got a few distant echoes of the message "It never really was yours," another grim reminder of How Things Change.) At one point, I was exiting the auditorium and saw a box of strangely familiar stuff, and I realized "Oh! That was all my blah-blah-blah stuff! Person X actually did take  everything I marked as 'his' out of my old office."

And that's when it really hit me: I don't need to be here any more. I don't want to be here any more. This place isn't mine any more, and it never really was. If I needed any clearer message of "Your time is up," it was right there: A box full of my bones. (Metaphorically speaking, of course, but that's how it felt.) Memento mori, indeed.

Time for a change. Time to welcome the life I have now. Yeah, I couldn't make the fruit salad this afternoon without sitting down to cut the fruit, but I made it. And I made lunch and dinner yesterday. And I made a special effort this morning to get a pizza for lunch while I was shopping for tomorrow's-lunch groceries, and of all things, had a beer with it! It is, after all, Labor Day weekend...

And my labor this day is specifically suited for me, here and now. 

Time to welcome it.... because that's what I have. That's what's here for me.

And it's time for new magic, for different magic. It's definitely time for the magic to happen...

Here and now.