Tuesday, July 31, 2012

Method? And patience

The good news is, my current plunge into darkness (of various varieties) was not, in itself, The Disease getting much much worse.

An acupuncture condition... about a dozen needles later, including the ever-so-much-fun CV-1 and Heart-Protector-8 (ouch), and life is worth living again. Although the acupuncturist did say that, from an acupuncture point of view, I was "in extremis."

He said it'd be a few days before the treatment really solidified. I'm definitely looking forward to that.

Traveling the Neurological Highway, there's almost nothing that anyone can do. Nothing that can be done. It's really, really nice when something--anything--can actually make you feel better. And if not better, at least make you feel no-longer bad.

Oh, I wish acupuncture worked on the neurological level. Alas, it doesn't. But it's nice that it does work on the things it does work on. Right tool for the right job, as the saying goes.

Meanwhile, the task before me isn't physical therapy, it's spiritual therapy. It's letting go of the things that need letting go, forgiving the things that need forgiving.

Interesting that my M.S.-imposed physical condition has pretty much removed my ability to do anything besides... spiritual therapy.

Also interesting (as a contrast to the above "interesting") that physical therapy has a very clear method. Do these exercises in this way, your muscles will change in this way. Even neurological "therapy," set these problems before yourself and do them in this way, and your nerves-or-whatever will get better-at-least-we-think/hope-so.

Ah, but for spiritual therapy. One can ask one's choice of deity to do [whatever] for you, and deities being [frequently] benevolent, they will [or so one likes to think].

But even the very, very clear instructions: For example, "Forgive us our trespasses, as we forgive those who trespass against us," requires us to actually do something.

How to do that... that's where the clearly-defined method simply doesn't exist. At least, I don't know what that method is.

But since my current condition has reduced the number of things I'm actually able to do to "the spiritual," I guess my next steps are as clear as they can be, at such times.

Well, that and "Wait for the insurance agencies to make up their minds about [pretty much everything]."

I guess "patience" must be part of that damned "spiritual path" thing, too.

Friday, July 27, 2012

When you sit...

Well, here's an interesting snapshot of how things are right now:

Got out of bed somewhere around 10AM.

Went with my wife to a charming vegan Taiwanese restaurant. Not our usual lunch-and-tea shop... it was very good, plenty of yummy leftovers, but since it wasn't our usual tea shop, of course we went by the tea shop on our way home.

Upon returning home, I lay down, and stayed there for several hours. And honestly, I was ready for bed long before we were done with lunch... merely sitting up in the wrong kind of chair is fatiguing enough to make me want to lie down and close my eyes, if not full-on pass out. It was actually quite uncomfortable, simply sitting in a chair without putting my legs up.

This happened last week at the herbalist's... he was running late, and sitting up in the wrong kind of chair (in his waiting room) was debilitating, so I went outside and lay in the bed of my truck for nearly a half hour, before I was able to deal with sitting-in-the-wrong-chair again.

It's an interesting conundrum... The reason for "I can't walk" is clear: bad neural connections to my legs. The reason behind "I can't deal with excesses of heat or cold" is as clear as anything M.S.-related ever is: Well, that's M.S. for you, it comes with the territory.

But right now... merely sitting in the wrong kind of chair is devastatingly exhausting.

I don't rank a lot of what happens to me on this Neurological Highway as "suffering," but this is starting to feel too much like it falls into that category.

I never considered "going out to lunch" to be a nastily-draining activity. Going out to the right kind of lunch has always been restorative. Until now, I guess...

So many "messages from M.S.," if you want to personalize it that much (a shaky proposition at best) have all fit under the very large umbrella of "something's gotta change." I'm only now starting to discover what a very few of those things actually are... I've clearly got a lot more "discovery" in order, much less "actually making the [long list of expletives] changes themselves."

But, c'mon... go to lunch, and only a few minutes into being there, to be so drained that you spend the rest of the day asleep, and unable to do anything for hours.

A famous Zen principle is "When you sit, just sit." I don't think they had my current situation in mind... When you sit, sit in the right chair, or it's gonna cost you. ... it's gonna cost you the entire day.

("Where's the gift of M.S. there?" I can hear you ask. Fair question. When I figure it out... I'll tell you. But I'm definitely not there yet.

But it will be a relief to finally make that discovery...)

Thursday, July 26, 2012

Interesting questions

I assisted in the diagnosis of a pipe organ, today. There's a nasty, nasty short-circuit somewhere in the control system (which enables the console, the part with the keys and such, to operate the sound-emitting parts of the instrument). The Organ Folks haven't found the short yet... but they're getting closer. There's gonna be another visit to the instrument next week sometime, and with luck, it'll only take a couple of visits to  find and eliminate the short.

How did I help? I laid on the floor, waiting for instructions: "Turn it on!" or "Turn it off!"

Hardly sounds like much, but somebody had to turn the dang thing on and off. It didn't matter that Disabled Guy (who used to crawl all over that very instrument himself, years ago) was the one who was helping... it didn't matter at all how able the guy at the switch was... they just needed somebody at the switch.

It was important, and useful.

I took one of the Organ Guys out to lunch at my favorite Taiwanese tea place. We haven't seen each other in 15 years, it was HIGH TIME to have a lunch and reconnect. And that was very, very good.

Before I left the church, I scoped out a spot I might (in my fantasies) use as a place to record video podcasts from.

It was a very, very good day... for accomplishing things that were meaningful and necessary.

I'm at home right now, and... I'm toast. I feel horrible. Tried lying down—that usually fixes things. Not today. I feel, actually, bad. Quite bad. And I even spent a lot of time at the church, today, while waiting for the call to turn things on and off, lying down with my eyes closed. Apparently, that didn't help.

That doesn't happen all that often, feeling this bad. But boy, do I feel bad.

This is an ... interesting... new place. I'm familiar with feeling fatigued. I'm familiar with feeling disabled. But I don't often feel this just plain bad. And oh, it's definitely not an "I'm coming down with something" bad. It's an M.S.-related bad.

Gonna take my herbs, sit outside, watch Batman (reruns from the Adam West Batman, which I adored as a child), and with luck, go to sleep. And with more luck, to feel better tomorrow.

I really... really... wish I knew what was up, right now. Is it The Disease? Is it Something Else? Would knowing which it was really make any difference?

Well, if "just hang on" is The Lesson right now... fine. I'll do what I can about that. I guess...

Interesting, isn't it, when one finds oneself asking, "Are you really accepting your state and just riding it out, without railing against it? Are you denying it, or preserving yourself by not wallowing in it and 'keeping your spirits up'?" (If I'm actually doing that, which I'm not sure about either...)

Makes you long for the Universe's pee jokes, doesn't it?

Wednesday, July 25, 2012

And the Universe goes for...

Managed to do some things today; didn't manage other things.

Took my wife out to lunch to a favorite Taiwanese-tea place. Tried their "chow mein," which was well prepared and all but flavor-wise, quite boring. Wasn't sure I was going to be able to make the entire drive home... dang, did I need to lie down and sack out.

I just finally managed to finish copying a piece of music into the computer so that, in the future, I'll be able to render it to slides and create a sound-file rendition. I don't think this piece has been heard by anyone in nearly 100 years... so it'll be fun to use this during my talk at CMS in November.

Spent a few minutes outside talking to our neighbor (a very nice person).

I barely managed to type this in.

As to the rest of pretty much everything... I'm toast. Gonna take my herbs and sit outside and see what parts of nature, the world, or my soul, wants to be heard. I spent some time last night doing that (listening), I think that It, whatever It is/was, wanted me to talk to It, so I did. An interesting time, yesterday evening; perhaps an interesting time tonight. We'll see... right now, simply walking outside and sitting in the chair is plenty "interesting." Sometimes a little too "interesting..."

Earlier today, I heard a YouTube excerpt from a Kevin Smith piece about how important it was to spend time with people who don't ask you "Why?" (as in "Why do that?"), but who asked instead, "Why not?" And about how important it was to follow your dreams, and all that (except much more movingly expressed than I just did, it was a very beautiful story that he told).

And hearing that, I thought, "Why not? ... Because, right now, I can't."

I always liked to think that I lived in a world of thought, and creativity, and ideas, and stuff that doesn't need legs or walking or anything to manifest it. Yeah, being unable to use my legs means I can't play the organ, and that sucks big time, but I can still think. And create.

Or so I've always thought. But not today.

Right now... I just can't. I manage if I'm lucky to accomplish something small-at-best, and even that's usually enough to send me to bed for the rest of the day, and leave me in a state unable to manifest and capture even ideas. I've never thought ideas were "physical," but apparently, they're more so than I'd ever thought before.

It's hard... to have an idea, a good idea, a worthy idea, and then be unable to do anything with it or about it. For someone who loves having and living in a world of thought and creative thinking and creative expression and creative creation, to not be able even to think... or worse, to have a thought and not be able to do squat with or about it... that's hard.

One thing that is becoming clear to me, is that I need to do some mental housecleaning, and to completely change the way I think about everything. About everything. About the way I think.

If M.S. were an entity... oh boy, I'd definitely have to say, it's sending me a message. Big time.

I wonder if I'll be able to stay awake long enough to answer the call. Because even getting up to answer a "call of nature" is challenging enough, right now.

Great. I feel that living with M.S. is calling me to make a fundamental change to my consciousness itself, and the Universe goes for ... a pee joke. Can't say that sutra for that long... gotta pee.

Well, it's trying to be funny.

Tuesday, July 24, 2012

Work to do

Oh, the things that have happened since we last talked.

Good acupuncturing on Monday. Good dharma talk.

Got home, was having a perfectly normal, ragingly normal, time of it, and one of my legs just gave out and I hit the ground. Hard.

Really hard. About as hard as I've ever hit the ground, ever.

Fortunately, all that time I spent practicing breakfalls—thank you, Bruce Tegner, for all those delightful how-to martial-arts paperbacks I spent so much time with in my teenage years, practicing the front breakfall—I hit the ground surprisingly under control. Almost did the breakfall properly. Almost... Still, though, a nasty bruise is not a bad cost for "almost" controlling one's fall properly. My doctor (whom I called for advice about reducing the pain, of which there was a ton, and which there still is more than enough) was actually quite impressed; he said most people typically break certain bones when they fall "that way," he thought I got off very easy with just a bruise.

So, considering how much it hurt and the amount of noise it made when I fell... not bad.

Today, a good visit with the herbalist. I've been having a hard time sitting up for too long, and today was no exception... he was running late, it took me too much energy to drive to his office and just sitting in the office for so long was nasty uncomfortable... I had to excuse myself and lie in the bed of my truck, just to lie down and to sun and warm my legs.

Oh, the "fun" of dealing with the different temperature-wishes of my legs and my core. Sometimes, I sit outside to warm my legs, and the heat makes me feel bad, so I go into the air conditioning and feel good—except pretty soon, my legs get too cold.

"Boring," I don't have to worry about.

Even the herbalist said that my current level of inescapable discomfort was most probably as much spiritual as physical, as much the "inner jihad" as The Disease.

Even not knowing more than the minimal details of my separation from my previous employer, he agreed that that's probably got a great deal to do with my discomfort... I told him that I needed to forgive the blind for not knowing that they couldn't see.

He laughed.

I wish I could. When I can... I'll be free. Until then... there's work to do.

The herbalist said very early in our relationship... keep taking the herbs, stay on the diet, and don't give up.

The first two are easy. The third is, I gotta admit... a little too tempting, nowadays.

I'm going to go sit outside, take the herbs, and listen to nature. We're having a very interesting conversation right now, me and Nature... More about that, another time.

Saturday, July 21, 2012

"To-do" list

No creative+music-writing work today. Did, however, do some research, which in its own way requires not just diligence but out-of-the-box thinking. Which, I guess, is a kind of creativity, it its own right.

Spent some time working on this project outside. That was good, until I got too hot. We weren't talking 100-degree "too hot," which isn't all that atypical for Southern California, but I didn't realize how "too hot" I was until I got into the Blessed Zone Of Air-Conditioning. Dang, that felt good; and my second thought, immediately following "OH that's wonderful" was "Gee... I guess I was too hot."

Took a break to drive to the next town to pick up Taiwanese tea and take-out dinner. Tiny flashes of emotion, as I was driving... all tied into my separation from my previous employer. In my head, I think easily, "It was time." And it's very facile to go philosophical about "to everything there is a season" and "Dude, look at how much time you've been spending on your back and how much trouble you've been having with X, Y, and Z, how was it not time?" and Hearing Various Stories About Various Things that made me think "Dude, this was a blessing in disguise, and not-that-thickly disguised, either."

And yet, I still feel anger. Things have yet to be released. Whether they're capital-T "true" or not, whether I'm morally justified to feel that way or not, whether I (giant air quotes) "know" that I (giant air quotes) "need to let them go" or not, they're still there.

And in the very next thought that comes to me is But you're not angry at M.S. for taking what it has from you. That, though, is easy. M.S. doesn't exist. And even if it did, it didn't "choose to take things" from me.

Now, I've been bombarded by inspirational quotes from Facebook friends about letting things go and all of that, yadda yadda yadda, I know all that. I'm still angry. And I'm still hurt.

And yes, I know I'm doing the hurting, I'm causing my own discomfort by not letting go my anger and resentment. If merely knowing that were enough, I'd have let everything go long ago.

And I know that M.S. doesn't exist. But if it did, I'd say this to it now: I challenge you—help me. Help me learn what I'm supposed to learn. You've been a very generous giver of gifts. You've given me many gifts that I didn't, at the time, know I needed, but it always turned out... I did. And I thank you for those. But, I would say to it now, here's a gift I know that I want. A gift that I actually ask for:

Help me forgive. Help me forgive the blind for not knowing that they do not see.

And just because Jesus on the cross said, "Forgive them father, they know not what they do," him having done that doesn't make doing it yourself any easier.

So, as my kyudo teacher said, nobody's going to give you anything unless you open your hands.

So... I guess I've just written my own "to-do" list, haven't I? With only one item:

Open your hands.

Friday, July 20, 2012

We'll find out.

A day of some success, and then... dead stop.

I didn't really do anything even vaguely creative today, but at least I did accomplish something. I'm booked to give a presentation at the College Music Society's convention in November, and (to make a long story interesting) I'll need to convert a pile of orchestral parts into a conductor's score, something that does not exist for the piece I'll be using to illustrate my point. I only have one more part to input (piano), that'll take a while, but then all I have to do is polish and then ... cogitate, on my presentation. Plenty of time, plenty of time.

So, that was the success. However, it came with a cost... Apparently, I can't really sit in a basic office chair any more. Or pretty much any chair with insufficient butt padding and legs not extended. I certainly can't sit in it for very long, at least. Not long at all... Many times, I had to excuse myself to lie down to recover. Spent a lot of "lie down to recover" time, today.

I'm hoping I'll be able to return to creativity, "soon" rather than "eventually." It was satisfying to be able to actually accomplish something, but... the cost was higher than I had hoped.

We know that we're going to have to deal with "different," once we're traveling the Neurological Highway... I wonder if today was perhaps a foretaste of what that "different" is going to entail. I should try to find something to ease the "sitting" challenge... not that I want to spend hours in a chair at a desk, but being able to spend any time in it without it sending me to the bed for recovery... that'd be good. Beneficial, even, given that theoretically, I would still like to compose music again. Or at least, so I think. Judy at Peace Be With You posits some very good questions about dreams and reality.

But now... dead stop. It's time to pack in everything. I don't need to sleep, but I do need to not "cost" myself more. Because the more I "spend," the more it costs, both tomorrow and today.

So, tomorrow and accomplishing accomplishments... It'll be—the same? Different? Both? Who knows?

We'll find out.

Thursday, July 19, 2012


National MS Society's e-mail describes a study suggesting that stress is bad for people with M.S.

No shit, Sherlock. Go find me anyone that stress is good for.

Perhaps both the Society and I are battling a limitation of the English language by using the single word "stress." As one of my magic teachers told me, "There's a difference between unnecessary tension and necessary tension." Ask any serious athlete... you need a certain amount of "stress" to build your strength and your skills.  More than the correct amount causes damage. As one of my physical therapists said, "It needs to hurt good, not hurt bad."

Challenge is "stress." Appropriate challenge is beneficial stress; inappropriate, and more importantly unwinnable challenge, is definitely bad stress. Leaving a job at which you just don't belong relieves stress. Leaving a relationship in which you no longer belong in relieves stress. But if (for example) you're a composer, working on a piece a music isn't stress, it's fun, even if the work is long, difficult, or even sometimes tedious.

So, here's an example of ambiguous (on the surface) stress... Walking with my walker or with my hand on a rail/wall is something that I can do. Walking for too great a distance (whatever that distance may, on that particular day, be) is something I suppose I can do, but I really, really, really, don't enjoy. "Don't enjoy" to the point of knocking on the door of suffering... sometimes ringing up a "cost" of energy that I really, really don't want to pay, because it can be quite unpleasantly high.

I haven't been enjoying eating as much as I used to, and not just because I don't feel hunger pains... Nearly every day, I go through my "internal menus" of things that I could have (and that list is very long in international-cuisine-rich Southern California, even for someone on the zero-dairy diet), but I find nothing in the list that I actually am craving. Add to that ambiguity the cost of simply getting to where the food is, and my enthusiasm for eating goes even lower. Cook at home, you say? Well that also starts with "what do you want," which I can't always identify; too often, I want nothing. And also, too often, it's the "energy" thing... In the Goode Olde Days, I was a very enthusiastic home cook. Still am, sometimes. Sometimes. But not as often as I used to be, because standing at the cutting board or the stove gets too difficult, and the work areas are not at easily-used-by-someone-not-standing heights. Frequently, I'll go to a freeway-close-at-the-right-time-of-day Taiwanese tea shop/restaurant, not just because I like it (which I do) but because it's a very short distance from parking to food. Other places that I have enjoyed... car-to-food distance is too great, so I don't visit them anymore.

Now, do I need "more stress" to strengthen myself? Some more stress... yeah, probably. But it needs to hurt good, not hurt bad. And it's getting over the "yeah, but it's gonna hurt" hurdle that's the hardest part right now. Part of that is a mental thing... Not jumping ("jumping"--again, English limitations, locomotion-based figures of speech describing motion you no longer perform) to the conclusion that "it's going to be baaad, don't do it!" just because it's going to be non-zero bad.

Again, it's a "the way out is through" kinda thing, and embracing the traveling of "the road through"... but the tricky part is finding what road leads to "through" rather than a dark and deep pit, with a very, very, hard bottom. Without falling into the pit, obviously. And I don't think that's cowardice... I think it's prudence. After all, who'd want to run out of gas in the middle of the desert? Fill the tank before you go; or, if your tank doesn't hold enough to cross the desert... take another road. It may still lead through the desert, but it won't lead you to "trapped."

Wednesday, July 18, 2012

To illuminate the way out...

A good acupuncturing and a very interesting dharma talk at my doctor's, yesterday.

Points with powerfully poetic names, which clearly were specifically aimed at dispelling the darkness... Great Deficiency. Long Strength.

He said that people like me, chronic (gleefully chronic) over-achievers, do not do well with having to lie down and do nothing. And especially for people of my particular disposition, my mental/emotional/spiritual composition... "I can't" is something we absolutely hate, especially if it's not an "I don't want to," or a time- or geographically-imposed "can't," but an "I, myself, from the bottom of my being, am unable to..." The land of "I can't" is just plain hell.

But he also stressed to me (in almost these very words) that the way out is through. The road to enlightenment carries us through lands that we want least to traverse... and yet, travel them we must. Traverse them we must. And in traversing them, only then can we go beyond them. As the Heart of Wisdom sutra says, "Gone, gone beyond, gone beyond gone."

And his prescription was, of all things... find the humor.

You folks know how easy that usually is for me, but it has been very hard over the past couple of weeks to find the humor in anything, much less my condition.

But that's his prescription... find the humor.

So, apparently, the way out is through, but to illuminate the way out...

Find the humor. Find the reason to laugh... and laugh.

Well, it worked for Norman Cousins... And, like all my favorite prescriptions...

No side effects! Except... actual, completely real, happiness.

And a big smile.

Who couldn't use that?

Monday, July 16, 2012

Large enough

Today, I managed to stay out of bed. All day.

Didn't lie down once. Only sat in chairs.

As a result, every time I tried to get up, I nearly couldn't walk. Something about ordinary chairs really karks out my legs... if I don't put my legs up, or lie down, regularly and repeatedly, I nearly can't walk.

Not good.

Did get some Overdue Things done today; more Overdue Things to be done tomorrow, and then the Long Drive across the Great Divide (the 405 freeway) to my weekly MD appointment.

A major goal for tonight: go to bed as quickly as possible. And go to sleep, as expeditiously as possible.

And with luck tomorrow... better walking. Even just a little better would be fine.

In Babylon 5, Byron asked, "Where is it written that all our dreams must be small ones?"

Walking just a little better.,, A small dream. But large enough for me.

Saturday, July 14, 2012

Alternation; and the cat

Triumph, and collapse. Alternating.

Triumph: I added a hard drive to my Mac tower. By myself. Without any assistance.

Technologically, it was entertaining... being a techno-dinosaur and remembering horrors of IRQ conflicts and way too many jumpers, something as simple as "Open the case, remove the slider that's there to hold the drive, screw it in using the screws provided that are placed perfectly to mate with the screw-holes on the drive, slide the slider in, close the case, you're done," was so... much... fun! Kids today, they don't know how good they got it. Really, they don't.

In order to get to that point, I had to unplug everything from the machine, slide the tower out of it's case (damn, that tower's a heavy sum-bitch), move the tower to a place where I could work on it (@#$#@-damn, that tower's a @#$#@$ heavy sum-bitch), lay it carefully on the ground, get down on the ground next to it, and open the case. The "get down on the ground" part was actually kinda painful. And difficult. Unhappy-making difficult.

Then, collapse: I had to rest. Bed rest, not just "sit in a comfy chair" rest. Get in the bed, close my eyes, and lie there for at least a half hour.

Then, I opened the case (a humorous aside: I used an Apple iPhone to look up how to open the Apple tower case, it's nice when the members of the family play nicely with each other), put in the disk, closed the case. Hooray! I win!

Oh yeah, need to get the case back in its place... But first, rest. Bed rest. A half hour.

Finally I wrestle the Mac back into its place. Finally get everything plugged in again. Power on, everything works. (A relief! A triumph!)

Then, I had to rest. Bed rest. For a half an hour.

Eventually, I decide that dammit, I want something different to eat. I head to a local eatery ("Slow fast food" is their motto), get a quarter chicken, and because I couldn't control myself, I broke my "no raw leafy greens" diet and had about four forkfuls of red-cabbage slaw. Damn, that was satisfying.

Then, again, collapse: I had to rest. Bed rest. Lie down, close my eyes, for at least a half hour.

To put this in perspective, I've wanted to put this disk into my machine for well over a week. But haven't had the energy to do it. I've got some other stuff I want to do, right here in the house, but don't know that I'll have the energy to do it. The local hardware store is having a "no sales tax" weekend, there's something that needs buying for the house--and has needed buying for months!-- but I don't know that I'll have the energy to walker-walk around the store. Much less to simply get out of the house.

Having NO energy really sucks. Everything takes so @#$#@$ing much energy to accomplish anything... I can't complete things; hell, I can barely even start them. No matter what I do, what I try to do, I'm interrupted, either by my always-full-of-surprises bladder, or the need to lie down and close my eyes. Or both. Or the bladder several times, and then back to bed. (And then sometimes the bladder again. Well, at least at home, the bed's not that far from the bathroom.)

The cat, however, is happy. She gets fed when she wants it, she gets rubbed when she wants it. Sometimes, all she wants is to lie next to me; sometimes she wants to lie on top of my arm.

So... all this fatigue, the depression, the bathroom trips, is this all just The Universe telling me to... pay attention to the cat? Not just to "feed and rub" her, obviously, but to learn from her?

A very interesting gift... no? (Or should I say, "Meow?")

Friday, July 13, 2012

The way out...

Dark days, right now. Really dark. I don't know why... I don't think that anything specific has happened to send me into a funk, but boy, am I in one.

I'm feeling very, very, very unable to do anything. I managed to go out to lunch with some former-co-workers today—I enjoy their company very much, they're wonderful people! But I didn't really feel "into" eating, even the high-quality tea didn't make me feel any better. And I was so tired on the drive home, I just wanted to pull over and lie down. Not "go to sleep," but just lie down and close my eyes.

My route home from the tea place takes me via many food-vending establishments. Why don't I pick up some nice fresh veggies for dinner, I think. Nope. Not enough energy. Maybe I can pick up some supermarket sushi... nope. Not enough energy. At least I had enough gumption not to make a hotdog for myself for dinner, I've had way too many of those recently. Usually enjoyed them, but tonight? Nope. Not really enjoying... anything. Not enough energy to do... anything.

It took a lot of determination to do just this. But "inspiration?" Don't have it.

This makes me want to cry. There are so many things, very simple things, that are, ostensibly, easy to do. Or at least they used to be, before simply walking just to the bathroom took so much effort. I have music that, on paper, I want to write. I have other non-musical things I want to write. Thing after thing after thing, the preparation of each would seem ("on paper," or when you look at what physically is involved) to take so little effort. And I just can't bring myself to do it. Maybe. MAYBE. Start it? Kind of? MAYBE... pretend to start it, maybe. But... to actually start it? Or do it? Nope. Ain't gonna happen.

There are so many things that I tell myself that I want to do. Things that, in the past, moved me, inspired me,  in the contemplation of their doing. But right now, I feel like I can't do anything. Anything.

I sit in the back yard. I just sit and listen (both to the external sounds and what I "hear" inside). Interesting. Thought-provoking. But comforting? Liberating? Inner-transformative?


More accurately, [expletive] no.

Oh, so often I can find the humor in the darkness. One night I fainted and fell on the floor and stuck to the floor and couldn't crawl because I was so soaked in sweat that I stuck to the floor, and I found that... funny.

Which, y'know, when you're stuck to the floor soaking in your own cold sweat, finding your situation funny is actually kind of a nice thing.

But right now... I can't find the Zen-ish clarity, I can't find the dark or light humor, I can't find anything besides darkness. Am I still mourning my job separation? Maybe... Is dealing with the insurance companies's idiocies depressing me? Not at first blush, but it sure isn't making things easier. I wish I could break down into tears and just cry it out... at least I'd get "it," whatever "it" is, out. I wish I could have a master-throwing-his-shoe-at-the-student sudden Zen moment to snap me out of it. If it's The Disease, I wish whatever The Disease is doing right now would just @#$#$ing stop—it can have bladder malfunction, it can take playing the organ away from me, but please just back off the depression. But then again, it if is The Disease, wishing at it ain't gonna do anything...

Sometimes, the way out is through. But @#$@@#$, man, I am so not enjoying the journey right now.

Thursday, July 12, 2012

Insurance. Paperwork. [Expletive].

My, what an interesting dialog today, with an insurer. A very slow dialog, since it's being conducted via U.S. Mail, but a dialog nonetheless.

"Your claim is denied," they said. The letter said little else, but calling them yielded an interesting discovery: Your doctor isn't properly licensed, they said. Expired, perhaps.

Really, I think. I'm quite sure that he believes his license is current and valid...

"OK, I'm going to call my doctor," I told the person on the phone. "Either his license is expired, in which case he definitely wants to know about it, or his license is current and valid, in which case you definitely want to know about it." They agreed.

So, the appeal letter goes off to them. Yes, his license is valid; just in case, here's the number. Just in case there was some confusion anywhere... Oh, I dunno. Just in case. Why not?

We'll see what the next step is... I expect that it'll turn out to have been something stupid and clerical, like a mis-read or mis-copied number, and everything will turn out OK. Or at least move to the next step of "we're going to deny you because" and the next cockamamie reason, which we'll whittle away at in its own time. If it bounces again for the same reason, I'll have to have my doctor dig out his license paperwork and send them a copy with the number, the dates it's good for, and "Yes, this is valid" circled in red.

Ah, if my myelin could be restored so quickly and trivially, simply by filling in the correct paperwork...

Tuesday, July 10, 2012

Another nice prescription

A good acupuncturing, today. And some interesting dharma-talk-cum-medical advice moments.

I talked with him about my current crappy relationship with walking. Short distances, no problem. Just-a-little-more-than-short distances, doable. Long distances, NF way. But that's the way it has been for a while... But today, just getting out of my truck today at his office, I found that simply standing up and getting out of the truck was almost non-doable.

First idea that hit me as I wondered whether I was going to be able to keep standing: Really, how long do I have, for "walking?" I have come to dislike walking more than tiny distances so much, that I long for the "simplicity" of a big-wheel push-it-yourself wheelchair. Or a powered chair. But I won't choose to go down that road—not yet. As I told my doctor, "Much as I want to not be burdened with the discomfort of walking... I'm not getting that kind of chair until I have to—because I'm afraid that once I get into it, I'm not getting out of it.."

He nods. "You're right. Use it, or lose it." He concurs; this is definitely a case where making things "easier" is going to make things worse. I don't think he'd have any issues with a powered chair for long distances, like the one I used to use at the high school where I used to work, but abandoning the walker? Not yet. Definitely not yet.

I told him, "I'm not moving to the big-wheel wheelchair until I try to get out of the truck but can't stand on my own.... I hit the ground, and have to call someone to help me up because I can't do it myself. Until I'm that far gone, I'm not going to give up the walker." He didn't particularly approve of the "falling on the ground" part of that adventure, but he definitely agreed that staying walking as long as possible was the Right Thing To Do.

And another prescription: Get into the sun, during "high sun" hours, 12 to 2. Not for long, and goodness knows not for long enough to burn or damage my skin or anything nasty like that, but get some sun. When he had optic neuritis a long time ago, he started craving sun, and he'd look at the sun with closed eyes. "The sun has much more to give us than just Vitamin D," he said.

The sun nourishes the Heart, in the five-element system. And Lord knows, that kind of support, I can really, really use.

He also said that Gershwin had the right idea about the gifts of summer, in his song Summertime. In our 24-hour always-on, always-accessible culture, nobody takes enough time to just enjoy the summer. To meet the season on its terms. And enjoy it.

A nice prescription, no? Meet the energy of the season, of the summer, on its own terms. Be prudent, skin-wise; don't overheat, be sure to cool yourself off after you've been outside in the heat: but enjoy the sun.

One hell of a nice prescription, no?

Monday, July 9, 2012

The way out...

Yin and yang; darkness and light. But no grey. I'm up, or I'm down; or so it seems, right now.

Got up easily enough yesterday, with the sun. Before my alarm, even! Made it to church no problem--early, even! Sang the anthem without falling over. Went "backstage" to use the restroom, sat down, and nearly fell asleep. (And not because of the sermon... just "because.")

Made it home OK, no problems at all. Sat outside with my laptop and a notepad--yes, one of those ancient analog pen-and-paper things, which at the onset of the project, is actually the superior, preferable, advantage-laden technology of choice. Got a lot of work done. Had a wonderful time, even though it was starting to get uncomfortably warm, even in the shade.

Went inside, lay down, turned on the A/C, went to sleep.

Didn't really have much energy the rest of the evening. For anything. Even for TV watching.

I do kinda wonder where this is coming from... I think I'm starting to move through the grieving process, and of course when you're trying to go "through" you're definitely "in the middle of" it, and as I learned too late in life, sometimes the way out is "through."

And to be honest, even knowing where it was coming from would probably do nothing to ameliorate it, or my experience of it.

But, it's a step (as it were) forward... I'm able to accomplish something. And that's good.

And given the way I "walk"... tottering, grabbing at the walls for support, sometimes lurching off balance in some random direction even when I'm just standing, even standing while holding onto something...

Anything that can be described as a "step," in the direction that I want to go in, is a good thing.

The way out is through. Keep moving, try not to hurt yourself when you hit something. But keep moving.

Even if it's only one... "step."

Friday, July 6, 2012


An interesting day...

Morning dawned. I used to get up at or before the sunrise, certainly "at"; Sundays, I still do, since I need to be at the church for a rehearsal at 8:30. But nowadays... I just lie there. Often I read stuff on my iPhone, sometimes I don't. But in either case, I pat the cat, pull something over my head, and just lie there, and go back to sleep, if I can.

Today, I got up (eventually, and hardly "with the sun"), did a couple of the things I had planned on doing—if that many—but then I picked up a former student of mine, now a rising college sophomore, and I treated him to Taiwanese lunch and tea, and we talked about writing musicals, something that he wants to explore. We both had a lot of fun.

I took him home, went back inside, lay down, pulled something over my head, and went to sleep.

A long-time overachiever, with a very long list of Things I Want To Accomplish This Summer, I find this sort of life... wrong, somehow. If you asked me to justify my opinion of this "wrong-ness," I don't know whether I could... Some of the things I want to do are "overdue" by my own, and only my own, preferences. A couple of them maybe, maybe, could stand to be at least started so they can be handed off to other people at a convenient-for-them time. But said other people are not expecting these things, or even aware that maybe, maybe, I'm thinking about maybe undertaking, much less delivering, said things.

I have left so far behind me, my long-accustomed schedule. My doctor asked me why the "schedule" mattered? Besides whatever do-things-at-a-given-time activities that I actually agree upon, it matters not at all when I do anything.

Joe Straczynski, author of TV's Babylon 5, liked to quote a Zen saying: "Eat when you are hungry, sleep when you are tired. Do this and you will confound your enemies."

Well, I have no enemies to confound—besides the ones I have created within my own consciousness and the existence of which I still fight to sustain. So, since my enemy is "myself," I guess it's high time to confound him.

And of course, that "him"... that'd be me.

Thursday, July 5, 2012

Forty-three pounds

So this afternoon, I'm at the Medical Marijuana Referral doctor's office, and they (as most doctor's offices do) have a TV on the wall, blaring... well, whatever. I didn't really pay any attention to it, until I saw...

A commercial for Ambien. A charming animated character was talking about how depressed she was, and then her doctor added Ambien to what I presume from the spiel was an already extensive battery of anti-depressants, and suddenly--she felt better! A very nice smile, this entirely animated person had. Ask your doctor whether Ambien is right for you, she said as she smiled.

And then... the bad news. An exhaustive list of all the bad things it can do; I think it took longer to list those than the "please buy my" part of the commercial took. For example: In some people, taking Ambien causes them to commit suicide--especially in young people. Or it can just plain kill you, in all these other nasty ways--a very long list of those.

Now, after hearing the legal list of disclaimers, why anyone would actually still want to ask their doctor to give them Ambien, I'll never know.

So then I went in to talk to the doctor about the referral. I told him that I found seeing that list of how-Ambien-can-kill-you at a medical marijuana office to be... unintentionally funny. Tragically funny.

He growled, "Marijuana has never killed anyone."

Now, to be fair, I'm sure that some people have done some stupid things that they shouldn't have done while under the influence, and one of my medical-caregivers tells me that the lethal dose for marijuana has, in fact, finally been identified:

Something on the close order of forty-three pounds.

Not over the course of years... at once. Forty-three pounds. At one sitting. And that's only calculated as the lethal dose--it has never, experimentally, been conclusively established.

I think you'd have to fill a couple of steamer trunks with weed to get forty pounds of it.

So, the journey along the Neurological Highway continues. Seeking new side-roads for relief, and comfort, and perhaps even inspiration, on metaphorical journeys to Ixtlan, Carlos-Castaneda-style.

But not, as you can easily imagine, with Ambien.

Wednesday, July 4, 2012


Calendar says that today is "Independence Day." Independence and dependence have very different meaning, for us on the Neurological Highway.

I spent most of today in bed, not doing anything creative, as I had kinda-sorta hoped to do, once upon a time.

I live around a mile away from a bridge from which a whole lot of Pasadena goes to watch the fireworks over the Rose Bowl. I've gone there many a time before, such as the year-2000 fireworks festival. Always wonderfully spectacular.

But those were the days before I had been "accessorized," shall we say, by the wheelchair/walker. It was always a challenge—I live at the bottom of the San Rafael hills, the first quarter-mile uphill is at a 45-degree angle, not an easy walk when you can "just walk." And definitely with the walker or the wheelchair, it ain't gonna happen. So... no fireworks, this year.

I barely made it to a favorite tea shop with my wife. Going to Taiwanese tea together is something we both enjoy doing. I wasn't really convinced that I was going to be able to do it until I got in the truck and "gave it the old college try" to drive there. I was barely able to use the walker at all, my wife had to push me around in "wheelchair mode."

We're growing tomatoes in our front yard. I can't pick them, because right now, it's too hard to walker down the driveway (downhill can be nasty difficult). I have to ask to have them picked, even when all I want is one.

Right now, I feel like I'm simply not able to do anything. Are there things that need doing? Yes and no; there are creative projects that I want to undertake, some of which have definite due dates in October and November, other stuff doesn't have a fixed due date but I want to do it anyway. Nothing immediately due, certainly. But simply walking around the house right now has become more difficult than ever, I have no interest to drive even the block between me and a local store (walking there when I could "just walk" was easy, but trying to "walker" that far would be a big mistake), even sitting with my laptop to blog is nearly too much to ask.

Acupuncturist yesterday did his best to specifically address my not-at-all-fun-to-be-in state. It sort-of worked, I felt fine when I got off the table, but I feel like I'm back to where I started, pre-treatment, already.

'Course, on the M.S. Highway, things change. A lot. All the time. With no notice, and for no apparent reason.

I will definitely take "independence" from my current very-down state... But today is definitely not "independence day." I'm sorta-kinda independent enough, physically... I can make it around the house without help, dress/bathe/all the "personal care" things that one really hopes never to require help for, but "independent locomotion" is something that, at the moment, I feel like I'm knocking on the door of being freed from.

And that's a freedom I definitely do not crave.