Relapse, remit, repeat

Occasionally, much better than yesterday. I got the truck in to the referee to get the magical sticker that does I'm not sure what but it's important for the smog test... and, was surprised that the referee, out of the goodness of his heart, did the smog test too! I had feared that it would be a horrible long and (of course) expensive process... but it was none of those! The hardest part was finding my way to the shop; once I got there, things went great.

I drove home, full of energy, thinking about all the things I'd be able to do this afternoon, being full of energy.

Before I was all the way into the house, poof! Energy--all gone! Crash for a couple of hours.

Woke up and dragged myself off to the hospital--don't worry, nothing bad, it's just that it's the most convenient place to get blood work done (I needed a quick little test).

At least, it used to be convenient. I made the long walk to where the blood-sucker lab used to be, only to find that it was now a block away. Schlep the long walk back to the truck, drive the block, find my way up to the blood lab.

The blood lab--the waiting room and the test rooms--looks like the Marriot LAX hotel. Completely over-decorated. And huge. At least thirty seats in the waiting room, and at least ten test/sample-taking rooms, each of which was carpeted (!) and overdecorated. I'm guessing that (a) my insurance won't pay for anything, 'cause it never does, and (b) at least 90% of the cost will be going to the decorators. I'm definitely gonna stop going to medical facilities that are featured on "Pimp That Lab."

I was the only patient in the facility. It took the hospital a half an hour to find a phlebotomist to do the forty-five second one-tube blood draw. (Well, at least she was nice. And pretty darned painless.) Apparently, there's another lab (I'm presuming, not as nicely decorated) where you don't have to make appointments and don't have to wait like I did when you don't have appointments (which I didn't have 'cause I've been going to that hospital's lab for years and never had to get one before). Of course, the people who I first talked to (see above, long walk) could have sent me there, knowing that I didn't know anything and thus maybe didn't know I had to make an appointment, but didn't. Perhaps they thought my spirits would be improved by the decor.

Made it home. Started making dinner, dropped something on the floor--nothing broken, nothing damaged, but quite the noise--and I had to stop and go lie down. I had no idea I'd take so much effect from dropping something.

I'm managing to get some work done--not much, but some, and some that's important, so that's good, but I don't feel like I'm working that well, and as soon as I sign off here, I'm gonna bang down some herbs and crash.

MS-disease-qualification-wise, I think I'm probably primary progressive. I've never had an "attack," whatever that is, and I've certainly never had any sort of significant improvement. But man, if any day was uptown/downtown, it was today. I was doing fine. I was doing horribly. Fine again, briefly. Then crash again.

It's a very rough ride; strange how the roller coaster actually made "progressive" seem easy to tolerate.

Shigata ga nai.

Things aren't going well.

Had a wonderful time at the Huntington art gallery & gardens with my wife and a couple of truly wonderful friends. Saw a really interesting exhibition, enjoyed the Japanese gardens.

I couldn't read the signage describing the objects in the exhibition. It wasn't that my eyes wouldn't focus, I could see the letters quite reasonably clearly. But I couldn't read them.

While at the Huntington, I was using a true wheelchair (rather than the rollator/transport chair I normally use). You know, the kind with the wheels you can push with your hands.

I liked it. I think I like having the higher POV you get from standing, but considering how poorly I'm walking these days--and that's really poorly--I was surprised at how much I enjoyed the big-wheel wheelchair. I think that walking with the rollator makes it easier to navigate the world--your eyes are at "normal" height, you can vary the width of the walker if you need to slide between obstacles, and of course, practicing the walking, as much as I'm not enjoying the experience of "walking," is probably good exercise. But I was surprised how much I liked the "wheel it yourself" wheelchair; something that so far, I've been assiduously avoiding even trying.

I'm having a horrible time simply engaging the world. I couldn't read small-print signs in an art gallery (and they're really not that small print, easily 14 or 15 point at worst), I can't understand directions, I feel like I'm receiving sensory input but that it's just not making any sense, I hate walking, I don't enjoy eating--anything--and I don't want to get out of bed, much less go into the world.

Depressed? Actually, no. I wouldn't call it that at all.

Numb. That's more like it. Incapable of sensation.

There's an expression in Japanese: shigata ga nai. Nothing to be done. It's not about giving up, it's not about railing against anything, it's just the way it is. Nothing to be done.

And that's where I am, right now. I feel like everything is getting worse. And there's nothing to be done.

I'd say "I don't like it," if I felt anything at all.

Beautiful blossoms on the tangerine tree in the back yard; beautiful aromas. The promise of springtime; the promise of new life; the promise of renewal.

Awfully nice to look at. But I don't feel it. Is it true for the world? Heck yeah. But for me?

Shigata ga nai.

Needles (that actually help)

Man, what a difference a few needles make. Acupuncture needles, that is.

And, unlike the experience that many of my fellow MSers with needles, nothing comes out of these needles besides benevolent energy. The needles go in, energy follows, they come out. And afterwards, I feel better.

I'm still feeling the need to take it way easy tonight. Getting ready to drive home, I had fantasies of "getting stuff done." Nope; I can tell that it's still time to rest and let the treatment settle.

Let's hope it sticks.

I'm finding the cold both powerful and penetrating. Now, I'm inside a heated house; at the moment, I'm sitting under a blanket, and soon I'll be lying under a comforter. And still, I'm cold, especially my legs. Yeah, I know, it's just the 40s. When I lived in New Haven, "cold" was in the teens, or even sub-teens. But still; to me, it's cold; worse, it's inescapable. It follows me into a heated home, it follows me under a doubled-over comforter.

At least it's only my legs that are cold, not my soul... my soul really never got "cold," but it has been "dark." Very dark.

Tomorrow, I show cartoons to my 9th graders; I take the truck to the shop to get its computer looked at; and then, three rehearsals. A long (probably too long) day, but with luck, it'll be gentle and long rather than hard and long.

Gentle, I can use, right about now.

Stymied

Things are still pretty low and lumpy.

Really low energy. Not exactly "crash and burn," but definitely "crash," hitting the sack very hard immediately upon returning home from anywhere, and then awake for no particular reason for a couple of hours (at least) starting around 1AM.

I'm hoping that acupuncturing tomorrow will put at least a little spring back into my step.

Was very pleased that I made it to the market for Thai green-curry paste and coconut milk, and (after my afternoon crash and snooze) was able to create a not-all-that-bad curry. The first Thai cooking I've done in a while, it turned out pretty darned good. Only had enough energy to wash one pot rather than all the dishes, but hey! It's better than nothing.

Had some interesting thoughts about "againstness" in my life; "againstness" in many forms. My acupuncturist says that "butting heads" is one of the reasons I keep getting my energy stuck... since I seem to have a lot of time to think (I wake up for no particular reason around 1AM and can't get back to sleep for a couple of hours) I played back some memories of "head butting," trying to find patterns. And what I found was this: my absolute worst spiritual "crash and burn" moments have been when I've been prevented from making a difference. When I saw the way to make things better--I had the ability, I had the vision, I knew what to do and how to do it, and often I had even gotten things under way... and then, I was stopped. Cold. By someone who Just. Didn't. Get it.

What I do best is catalyze changes of consciousness and perception. Sometimes I misunderstand things, yeah, but when I do get it, I really get it, and I can really change things significantly for the better. And my worst "crash and burns" have come when someone stopped me from making things better. And they never explain things, they never tell me how I misunderstand the situation, or how yes I'm right about what I want to do would be good but there's a reason we have to suffer with the imperfection or whatever... they just stop me. And they Just. Don't Get it. They don't get the problem, they don't get what needs fixing, they don't get why I want to do something, and worst of all they just don't get me.

So I'm wondering... is MS now playing the role of the villain who wants to stop me? Who just doesn't get it? Pre-MS life was pretty much abounding with opportunity, those opportunities went away not because of the MS, but just because things come to an end sometimes, and these things just happened to drop off at the same time. But MS doesn't exist, as a separate entity; calling it the villain is just a delusion. But is it really the physical MS-related changes that are getting in my way, or is it those changes compounded upon something else?

Seth Godin talks about not waiting for people to "pick you," that you have to "pick yourself." In "Culture and Value," Wittgenstein said that "A man will be imprisoned in a room with a door that's unlocked and opens inwards; as long as it does not occur to him to pull rather than push it." Living with MS is living in a room with a lot of closed doors, doors that didn't used to be closed. Doors that didn't even have doors blocking the openings. And I've been pulling on them, pulling hard on each one of them, because that's always what has worked before.

Well, pulling doesn't work any more. And I'm living in a state of "crash and burn" because I'm being stymied, being unable to create, to catalyze, by someone who just doesn't get it. That'd be me, of course, who still doesn't "get" how to live with MS.

And, I think, I haven't yet really grieved what I've lost, on so many levels. And until I do that, I can't move forward.

As if locomotor and elimination issues weren't enough to deal with.

Sigh. What a road.

Stuck

This week continues to be very difficult.

My acupuncturist can usually restore a "stuck" energy condition with four needles, very quickly. He did that for me, Wednesday. Cleared a lot of stuck-ness.

I don't think the non-stuckness lasted 24 hours. Maybe something like 16 hours... I think the stuck-ness returned around 2:00AM, and I know I had it when I got up Thursday morning.

This is getting very hard to take. LSD trips can be quite horrible, but at least the drug wears off eventually. The "stuck-ness" shows no signs of leaving. It just keeps getting worse.

It is not, itself, neurological. But it can certainly make the neurological issues worse. Which it is. Walking and standing are, at least today, not working out very well. I stood for over an hour cooking dinner--and dinner was really good, quinoa with lentils and roasted carrots and brussel sprouts, with pan-seared onions and shiitake mushrooms. Good and good for you. And 100% vegan, even! But at the end of cooking, I took a picture to share on Facebook, and I could barely hold up the camera--arms weren't giving out, but legs were. Very disheartening.

Now, I know I've talked a lot in the past about a "creative drought." It's hard to look at what I did for the school musical and say that "I'm not creative." I did the production design, the set design, and the lighting design, all of which I'm very proud of. One of the lighting-design moments was especially wonderful:

I wish I could show it to you in full motion--the sunburst at the back is two patterns spinning in opposite directions. Truly glorious.

And yet, I feel like my creativity is if not gone, it's very hard to access. It took something very special to allow that moment to be created. Pre MS, I could create my own "special somethings" that would create wonderful things at the drop of a hat. Now... I come home exhausted, lie down in bed, sleep for a couple of hours, eat nothing much for dinner, go back to bed, wake up at 2AM, sit and stew for a while, and then wake up at 7 to start everything again. In the pre-MS days, it'd be come home from work and then start creating, creating, creating.

I miss that.

I know it's still "in me," creativity can still happen, but... this "stuck energy" thing has got to go.

And I have no idea what to do to get rid of it. Which, I'm told, is How It Works... nobody knows what causes it, or what clears it. Sometimes, you just gotta grow out of it.

MS, I can summon patience for. Blocked energy... I can't take. I haven't had my energy flowing properly for at least two years ... three, maybe? And I am So. Goddamned. Sick of it.

Which attitude probably doesn't help make it go away.

If it really isn't treatable... if it really is a "growth" thing... there is nothing to "do" for it.

If I had the energy, I'd get mad and swear a blue streak.

Great. Not having enough energy to swear to the heavens, railing against the universe for... not having enough energy.

Comedy. It's inescapable on the neurological highway. Or the human one.

Meeting "now"

A most rocky week, so far. One of the hardest in several months.

The musical of last weekend cost a lot more than I had anticipated. I've been effectively bedridden for three days; walking is on the edge of "not happening." I can still walk, but it really feels like every step is going to be the last.

Got some good work done at the acupuncturist this morning (he fixed a couple of nasty blocks). We had the beginnings of a good talk... perhaps he wanted just to plant the seeds today, rather than plow the fields. But we talked about "butting heads," and how me being in a state of easily-engaged contention was causing some of my energetic woes. MS is all about "againstness," the immune system chewing on things it doesn't need to chew on, the nervous system trying to reroute itself around the damage--there's nothing that isn't againstness in the whole process. The last thing I need to bring to the process is butting heads with friends, with co-workers, with the world, with myself.

And while I was talking to him, it dawned on me that I'm approaching every single problem/situation/moment of my life with the old way of doing things. With the pre-MS way of doing things. And that way... just doesn't work any more.

Really, truly, coming to 100% engagement with "that was then, this is now"-- no, not that entire sentence. "This is now." I can't engage the new without completely changing the way I look at it, because I'm still approaching everything with what has always worked--and "what has always worked" is what's least available to me.

New formula from the herbalist today--actually tastes almost nice, a welcome change. He told me what he was trying to address with this formula, I asked him whether there was anything else to be done, and he basically said no: we have to do first what needs doing first, and until what needs doing first has been done, there's no point in doing what doesn't need to be done yet.

Well, if that isn't a convoluted way to re-emphasize dealing with "this is now," I don't know what is. But, of course, he's right.

And, of course, the week wouldn't be complete without more oddball unintended humor. I was truckless for three days this week (thank heavens it's back now). It was in the shop because the modifications I had done to enable the installation of hand controls weren't done properly.

And what was the problem?

The electrical system, of course. The truck's nervous system was bad.

Life imitates art, but machinery? Jokes like this, you can't write.

Lines in the sand

Survived Hell Week for our production of "The King and I." And survived the weekend's shows. Some of the best stuff I've ever seen on that stage, and I've been somehow involved with nearly every musical production that has been held on that stage since it was built.

And finally, I have a picture of me sitting at something--but not sitting in defeat, sitting down to work. Unlike my favorite instrument (the organ), with these instruments, you don't need your legs or feet to play, and with this score, you don't even have to stand up.

One of the things I like to do after any show is over is make a "next year" list, of things that we definitely want to do again, and that we definitely want to do differently (if not never again). Many of my "next year" items are non-MS-specific--scheduling improvements, checklists that were not followed need to be, minor changes to the lighting package. But there's at least one very-MS-related item: If I'm going to play in the pit again, I need to be at the house-right side of the pit. The conductor insisted that my instruments be located on the house-left side of the pit (for whatever reason), which put me at the opposite side of the theater from where my wheelchair could be parked--you can't get into the theater via wheelchair from the house-left side. I told him that I wanted to be on the right side, he (apparently) didn't care. Well, being on the wrong side of the pit cost me at least five minutes every time I needed to cross the theater through the raked house, walking-crawling through the chair rows (no room to walk through the pit itself). I slipped several times, spectacularly once, and only through blind luck wound up uninjured. Will I play in the pit next year? Very simply: I sit on the side of the pit that I choose, or I don't play. Period. No negotiation.

This is the sort of thing I've found most annoying about the MS experience... I say that I need something, the people I tell that to don't care that I say that I need it, because they want things their way, and so it sucks to be you, don't it? It doesn't help that I honestly don't know where to draw the "can't" line... because often I "can" do whatever it is, after a fashion. I may not enjoy it, it may be difficult, it may actually turn out to be dangerous or a horribly bad idea, but in a very mechanical sense, I "can."

"Can" and "should" are very, very different.

So this is something that I'm still struggling with. Not people who don't want to accommodate me, but my own assessment of the difference between "can" and "should." It has been a struggle to know whether I need to push myself for the sake of pushing myself, and when to "go with the flow" in a less confrontational way. A couple of years ago (while I was still walking unassisted), one of my doctors asked me whether I wanted a cane; I said that I didn't want one because that would be "giving up." He said, "It's not about giving up. It's about not falling over."

Maybe it would be better if I changed my vocabulary for myself, to assess--privately--my options as "Yes I can, but I shouldn't;" but when dealing with other people who want me to do things that I know are bad ideas, to simply say "Sorry. I can't do that." And not give in. No matter how badly they want what they want. Or how pissy they get when they don't get their way. After all, it hurts less for them to be pissy than for me to hit the ground.

An interesting line I've drawn for myself in the sand. I have no problem saying to people that I can't do certain things (like sit in a room for hours) when it's because I have a trick bladder, and there's only so much control I can exert; but somehow, I seem to fear confrontation over saying I have trick legs, and there's only so much control I can exert.

Is it just that people don't mind someone falling over, but they do mind someone leaving a puddle on the floor, and that's why it's no problem to accommodate the latter but not the former? (Sadly.. probably.)

Is it just that I don't like interpersonal conflict? (Maybe. I don't like it at all...)

Is it just another form of denial--that when I draw the line in the sand and say "Sorry, I can't," I need to face the line as much as they do, and I don't want to? (Well... er... ah... if I don't want to deal with asking the question, I'm certainly going to have a hard time facing the answer.)

An interesting road, the Neurological Highway. Learning to walk is easy. Learning how to live... that's the interesting part. The road gives you no choice as to how, or when, you need to face either question.

"Always tell the truth," my timpani teacher used to say. Amazing, how hard we make that, especially when you're asked to tell the truth to yourself.

Hell Week

"Hell Week" is the name often given to the week before a show opens. The final week of rehearsal is given over to issues that were planned to be handled that week (such as "tech" like lighting and sound effects) and that surface that week: things that should have been handled but for whatever reason weren't, things that nobody saw (or could foresee) arising but that badly need to be fixed. It's most hellacious for the tech crew (which I'm on) because all our planned challenges are scheduled for that week, and said challenges fight for attention, sometimes nastily, with the unplanned challenges.

I don't know if life with MS is incompatible with life in the theater, or the perfect preparation for the "hellacious" experience.

Let's see, what sorts have things have come up this week?

• Something I designed, and handed over plans for, in more than enough time to get constructed long before this week arose, didn't (for whatever reason) get built in time for the cast to rehearse with it, or for me to accommodate in programming the lighting. It's still not done, and as a result, the cast (and my lighting) isn't nearly ready enough.
• Another thing I designed, even obtained the supplies to construct, also in plenty of time for this week... just ... isn't going to happen. For whatever reason. Now we have to figure out how to work around that with what we already have on hand. Yeah it'll work, I suppose, maybe, but I had counted on These Things and now they ain't gonna happen and I'm not quite sure how to really work around it and make things turn out as well as they would have, had what I planned for occurred as planned.
• I've had several exchanges with another member of the production staff that reduce to something like this... Him: You're doing X wrong. Me: Not according to what's in front of me. Him: Don't yell at me, I'm just trying to make this better. What I want to say, but never do (because it would take too long and frankly I don't think it would make things better): I'm not yelling at you. But I'm not wrong, from my point of view. The problem isn't you or me, it's that what we know about the situation doesn't match. You don't know what my problem actually is, and how you're trying to help isn't helping, and that's why you're not getting what you want, not because I'm wrong or pissed at you.

So, all this week, I've been dealing with things I was supposed to have but for whatever reason don't, things I was counting on having and suddenly for whatever reason don't, and a lot of difficulty caused first by the correct information not being heard correctly, then by anger based upon bad data.

And I'm physically, intellectually, and spiritually exhausted by dealing with all of this crap.

What part of this is not precisely, and in every respect, life with MS?

Art imitates life imitates art imitates life.

As was said often of the theater in the film Shakespeare in Love, "Somehow, it always comes out just fine. No one knows how. But in the end, it always works out."

I sure hope so. In both the theater and MS.

Easy questions

I had a conversation with a co-worker yesterday... a very nice conversation, and one of the topics was my MS experience (the first time he had ever asked me about it, actually).

I gave him the usual short-but-sweet answers... I mean, who really wants to be deluged by the litany of symptoms? "How is it?" he asks. "The same every day, different every day," I reply (my usual seven-word instant answer).

Then he asks something nobody else has ever asked me: "How does your day start? What's the very first thing you need to deal with?"

That one requires no deep philosophical pondering or explication: "I stand up, and then wonder whether I'm going to fall over--whether my feet and my legs will stay under me."

I talked to another MSer about this yesterday, he had a similar "first question of the day," whether in rolling over he might pick just the wrong angle, or just the wrong something, and summon the spasticity that sometimes afflicts him.

The MS road is one that's fraught with... well, fraughtness, frankly. Sometimes, it's nice to have easy questions that receive clear answers, isn't it?

Dealing with ...

Now here's a quandry... There's This Music Guy that I work with. I'm going to leave out a lot of details, but here's basically the problem: He wants to physically arrange his performers in a certain way. For someone who doesn't have the locomotor problems I do, it's a non issue. It's not a non-issue for me.

I had a talk with him today about where he wants me to be located in this particular performance. I tell him, I'd rather be over there because it's easier for me to get in and out (of the performing space), especially when I need to get to the bathroom. He says that he'd rather have me somewhere else. After all, I'm doing musical-thing A, and that'll work out better if I'm where he wants me. Yes, I say, but I'm also doing musical-thing B, and that actually would work out better if I were where I wanted to be. Well, basically, he wouldn't come out and say this, but the truth of the matter appears to be that he wants me where he wants me, and he doesn't care what I want or why I want it.

I don't mind disagreeing with people. What I mind is when people don't care that there's a reason that I ask for what I ask for. That when I say I need some extra slack, it's not about "preference."

Yeah, could I tough it out? Hell, I tough out M.S., I suppose I could. But what's really the point here? That I need to tough things out more than I maybe want to? That I need to get up the courage to tell people -- politely--that yeah, you want what you want, and I agree that you have good reasons for it, but I need what I need, and I can't do anything about that--can't we find a compromise?

I really don't want to go down the road of "at some point, given the choice between having the fun in performing and having to deal with this s--t, and not performing any more, I ain't performing any more." Because to avoid that choice, I'm going to have to deal with some s--t of my own.

Sure would be nice to find a path that wasn't s--t-encrusted.

Like I don't have enough problems just having MS.

Kick in the pants

One of the first things I came upon this morning was Seth Godin's blog entry about initiative.

A very interesting read, considering that "initiative" is one of the things that, since I began walking the MS Road, has been the biggest change in my life. I used to have a lot of it; now, I have it very differently. Very differently. Very, very, very differently. (Is it gone, or has it merely changed? I'm not always sure... Scratch that: I'm usually completely un-sure. I know it has changed, but it too often feels like it has both changed and left... not just left: fled.)

I followed the links to the entry about his latest book (titled Kick in the Pants) on Amazon, and in Amazon's review, I found this quote:

Poke the Box just may be the kick in the pants you need to shake up your life.

And I thought, "Dude... you have no idea about what 'kicks in the pants that shake up your life' can really be like."

I am constatntly re-evaluating everything. My creative process. My relationship to my creative process. What I really want out of my creative process. My relationship to external drivers of said creative process. My relationship to internal drivers of said creative process. How to deal with lack; how to deal with unexpected absence of things I took for granted as being with in easy, and instant, grasp. How to release things that I want, things that I think I want, things that I have no reason for wanting but somehow can't release.

Kick in the pants?

Oh, that doesn't even begin to cover it.