Theater organs; Adventure Time; and the Grateful Dead

This is a long entry.... But for what was from beginning to end a quiet and often fun event, it was a big day.

Today marked the end of an era. Quite possibly the very last time I'll ever sit at the console of the Mighty Moller organ at the Pasadena Civic Auditorium.

After forty years of being a commencement organist, it's over.

Strictly speaking, it was over last year, which was my final performance. (You can hear a sample of some of my music that has been heard at this event here and here, I'm at the organ console and conducting from same. I don't remember whether I was using the pedals when the recording was made, and if neither I nor you can tell... well, that does say something, doesn't it?) But today, I passed the torch to another organist, taking him through the stops and divisions of the organ (which, for those of you who know anything about "church" or "classical" organs, has absolutely nothing to do with anything you're familiar with; theater organs like this one are a completely different species).

Time was, when I'd crawl into the chambers and up the ladders and do some touch-up tuning myself. Today, I was very nearly totally unable even to get onto the bench. Organs are not really built for people with next-to-no control over their legs... Well, of course there are all these pedals and such, but it took a huge amount of effort, plus the assistance of a strong friend who's even taller than I am, just to get me onto the bench. I don't know if the picture reveals the desperation with which my right hand was keeping me from falling off the bench, but trust me, there was plenty of desperation.

And if anything needed to be driven hammer-blow-style into my head to reassure me that yes indeed, I had made the right decision to hand off this gig to someone else, well—today certainly did... It took at least a minute by the clock just to get onto and off of the bench, and that's a minute each time, not total. God only knows what would have happened if I had tried to stay there, and play the instrument, and conduct from the console (which has been the way I've done this gig for years).

It took quite a bit of effort just to do anything with the expression pedals, The boxes started closed (makes the organ softer), I opened the boxes (makes the organ louder) just so my friend could hear things better; and that's about all the control of "expression" I was able to provide. I don't really consider "on" and "off" as "expression," Baroque terraced-dynamics notwithstanding, and damn if there's one thing you probably ain't gonna play on this organ, it's Baroque music. Well, not for long, at least.

Now, everyone who cares for us MSers will talk a lot about "not giving up" or "if you believe you can, you can, even if not today" and all that sort of thing. But for many reasons, foremost of which is my.. I think I need to use the word disability, it was time to say goodbye to this gig, which I've been doing since 1973.

If my legs come back to "under control" can I play the organ again? Of course. Could I do commencements on this organ again? Oh heck yes, I've done gigs for colleges there that now are holding events in the Shrine Auditorium because they outgrew the Civic. (The last gig I did for them, which I think was the last they ever did in the Civic before they moved across town, took ten minutes on the clock to get all the graduates into the building.)

Hell, I've even risen out of the pit on the elevator that the console sits on, playing music from The Phantom of the Opera in full theater-organ mode. I have quite a history with this instrument.

I think my relationship to "being done" would be different if I had decided that I had had enough fun, time to pack it in, it's been a good run but it's OK to move on to something new. However, the decision was made for me.

Legs (at the moment) are, from the "playing the organ" point of view, completely worthless, even worthless to the point of not being able to get onto—and stay on—the console. This particular gig involves a lot of stress and adrenaline-charged-creativity, which frankly lives more in the world of "Use the Force, Luke!"... which right now, I could maybe summon if there were simply no choice—the building's on fire and people will die unless I, of all people in the world, don't play the processional—but the way I'm feeling nowadays, assuming that I would be even vaguely able to do that is...let's call it imprudent.

Had a wonderful time with my organist-friend to whom I'm "passing the baton," he really enjoyed (and was very thankful for) the "here's how to use the organ for the music that I wrote for the show" session, I very much enjoyed  hearing, and using for (so "quite possibly" to be "all-but-certainly") the very last time, this really amazing instrument,,, It is what may be the world's only touring pipe organ, it has been all over Europe, it has quite the amazing pedigree, and it has been and always will be my friend.

Could I pull strings and, at the right time of year, get into the Civic and play it again? Yeah, maybe, probably, but I ain't gonna even contemplate such things as long as my legs are in the state they're in today. I mean, c'mon, I can't even get onto the bench without a lot of help, it's on the edge of dangerous to even try to do that.

So it's time to say goodbye. I've handed it on... I'm done. And before I left the Civic, I wheelchair'ed my way onto the stage, and said, in the words of Finn the Human in Adventure Time... "I'm not coming back."

I suppose I could have quoted Milton, or scripture, or some sutra, but Adventure Time said it best.

I'm not coming back.

And I needed to say that. It was time. Is it "Goodbye forever?" Who can say?

But for now, at least... it's over.

But it was one hell of a ride. As the Grateful Dead sang...

What a long strange trip it's been. 

Please forgive my prolixity, but... taking the irrevocable steps in saying farewell to forty years of performance is quite the bidding of "goodbye." And I gotta be honest with you... I'm still processing it.

Withering; life imitates Pandora

I have been able to find the light in pretty much everything, so far.

I know the light's still there. Really, I do know that. Actually, I can tell that it's there..

But right now, it is so hard to find.

Contributing most right now to my struggle for the light is my leg malfunction. Should I more accurately call it non-function? Remember Jake Sully, the hero from Avatar, when he was in his wheelchair? And the struggles he had simply to manipulate his legs?

I'm just about there, right now. At least, in terms of leg-usability. Usability without using my arms to re-position them, at least. If I didn't have bones in them, they'd basically be rubber.

Strictly speaking, there is still much that I can do with my legs. I still can wall-walk around the house. Sort of. For very, very, very short distances. Which are getting shorter and shorter and shorter. Is "sort of"  becoming "not"? Well, I won't go there, I certainly won't claim a future of even-worse disability, but it is daily more tempting to do so...

My wife reminded me of the day we got The Diagnosis, and the neurologist in 2007 said "Well, in a decade or so, you might need a cane, or something like that." Well, he was wrong about that, it would seem.

Oriental medicine has been known to class the M.S. experience as a "withering disease." And if I had to sum up my experience at the moment, that's the word I'd use: withering.

New prescription for today, and the foreseeable future: Viparata Karani, the "legs up the wall" pose, assisted by Iyengar-style props.For ten minutes to an hour. And, meditation. Of any school.

As for the yoga: presuming that I can actually keep my feet up the wall, which I guess is good physical therapy for its own sake, I'm sure that it'll be good for me. And no side effects, except losing control of my legs and having them strike something nasty or, in the process of fully experiencing leg non-function, getting more depressed—which seems to happen every time I try to do something that requires the use of my legs and at which I fail.

And coincidentally, so at least I have something positive to share... Another no-side-effects assist that I can share with you: Recently I've been living in the state of "constant queasy," both before and after eating, apparently because of not eating or because of actually eating. There's no path involving "don't do that" that makes things better. Oh well. But, a bite or two of candied ginger, thank you Trader Joe's, gets the "queasy" very quickly under control. Ginger is a long-time well-known seasickness cure (illustrated very disgustingly by Mythbusters, so disgustingly that I'll let you find it yourselves rather than providing a link), and dang, does it ever work.

Why am I going through this "withering" right now? Dunno. How long is it going to last and where's it going? Dunno. Just like life, ain't it?

But dang, I would be very, very happy to let Eywa take care of this for me.

... different.

More discoveries, about my own process...

You know what I miss?

Cooking. We've talked about this before, something that takes standing at the cutting board and the work-zone and the stove, especially for high-intervention cooking like wok cooking. And we've not discussed the "outdoor" cooking zone, at my camp stove that runs something like 10K BTU, significantly higher than the indoor stove and much better for wok cooking. Using that involves carrying all the stuff outside, then cooking outside, then carrying the stuff back in. Right now, at least, can't do that.

And here's the big surprise... I miss cleaning. Yes, cleaning. Standing at the sink to wash dishes... Putting clean dishes away. Much as I've griped about "dishes" over the years, I miss being able to clean them. Anything that involves "standing" risks turning my legs to rubber or falling over (or both), or starting to fall over and having to grab something, anything, to stop the fall. Which means maybe dropping breakable things. Or the knife that's sharp enough to do serious damage if it falls on my foot. And as challenging as controlling a collapse-fall is, getting up off the ground is, nowadays, one of the most difficult things to do. I know... I've tried it. And damn, it's hard.

Carrying anything anywhere, like a pile of dirty clothes or even clean clothes. It's hard enough to carry a half-full tea cup while I'm huge-air-quotes "walking," I rarely fill the cup more than half full because I don't want to spill anything while I'm lurching or tottering, which happens all too frequently.

Perhaps the vacuum will actually act like a crutch/cane, helping me to stand... or perhaps it will facilitate falling over, since it is after all on wheels rather than designed not to slide over the floor while you're leaning on it. But straightening up the room, getting stuff off the floor so everything's nice and clear of the vacuum? Now we're back to carrying/lurching/tottering/falling over, and when we're in that world we're in the world of grabbing stuff out of desperation and accidentally pulling stuff over (e.g., the TV that I pulled over onto myself and cracked a rib in the process), which puts more stuff on the floor, and now the problem is worse.

And reading stuff about "easy ways to spiff up your home"? What I'm wondering now is whether it's time to start thinking about having a bathroom completely redone to remove a bathtub (which is almost too hard for me to step into and out of, safely--if at all) and add "grab rails" and convert today's tub into a shower-while-seated facility. Right now, I'm hanging hopes on physical therapy, and the variability of the M.S. journey... hopefully, this is a bad-walking time which, just as it arrived without warning, may also leave without warning. You never know. I'm "functional" right now, and yes that's large-air-quotes "functional."

But, of all the odd things to miss... cleaning. Go figure.

As with all things on the Neurological Highway, the Apple mantra "Think different" is called upon, to create "Do different." The Science of Mind folks would say, "Thoughts become things." So, if you think different, things become different.

So, I guess to combine all of these, we come to... "Live different."

Which is what all of us, MS or not, are called upon to do, aren't we?

New challenges

Well, things are ... different, nowadays.

I won't say "changing" because that implies they (whatever "they" are, the aforementioned "things," I guess) have some sort of direction, that they're ceasing to be exX and becoming Y. Well, I have no idea what the target of "becoming" might be and given the "differences," I have no flipping idea what may be "changing." But things are definitely ... different.

I am definitely experiencing physiological differences... whether they've been there for a while and I'm just now noticing them, or I'm noticing the differences are they're happening for the first time... well, I don't know.

But it is definitely an experience. WOW, is it an experience.

I'm really trying to do at least a little music writing. I may be found something (as it were) that'll take me onto the next step, in the writing process, and that was good. It's gonna take a lot of work 'cause it's gonna take a lot of notes. But after working a while, I had to stop, for a bunch of reasons. When will I be able to resume this? Tomorrow, definitely... at least, that's my imagination. Dream. Hope.

I'm increasingly worried about simply "going somewhere," about leaving the house. I have an imagination/intention/dream/hope to leave the house, get into my truck, and drive "all the way" to a store which, fortunately, is enormously wheelchair-friendly. But my legs are so shaky/weird/different—oh heck, let's just call it different—that I am fearful about using them outside of the house for any reason.

Hell, I'm on the edge of afraid to use them inside the house, for that matter. I made a point earlier today, filed under "dammit, I am doing this," of going to the backyard vegetable pots. They look great. I think they'd like a little water... I also think they'd like a little mulch, but that's gonna involve one hell of an adventure (get a friend, go to the outdoor-stuff store, pick up the mulch, take it home, had aforementioned friend load the mulch into the backyard and if possible, into the veggie pots). Doesn't sound like much in the Old Days, but given how little control I have over my legs, and how worried I am becoming about going into the world... it's big.

Before I can conquer the "going into the world" thing, I need at least to clarify my state, my capabilities... to see exactly what things are a fear-filled response, and which are prudent. But the first thing that is necessary is observation, followed by honesty, and (a word I've spoken of before) copping to the truth of my current capabilities.

None of us "know" what's going to happen. Most of us can be more-than-reasonably certain that when they stand up, they'll keep standing. And that when they stand at something, they can keep standing at something, as long (within reason and practice) as they want to.

I don't fall down often. But I have. And I would have fallen down more if I wasn't as good as I am at availing myself of nearby support. Which I have inside my house, in most places that I reach for it.

Which I don't have outside the house.

You see how the fear builds so very easily.

Now, if I do things (whatever those "things" are) correctly, even in my current state the fall-probability is significantly reduced. .Much of the work at physical therapy has been in things like simply standing up, or transferring from the wheelchair to another seat (on various kinds of seat), and back. In the controlled environment of the physical-therapy sessions, the probability of falling and injuring one's self is significantly reduced. Therapists are very careful to simplify the environment/situation so that the only thing you have to worry about is completing the assigned task. It's a wonderful place to learn, to practice.

Outside that environment, I cannot control the "variables" like I can within the environment. Often it's very easy for me to get into the "do it right and that eliminates possibility of disaster" headspace (which is a nice thing about "do it right"), sometimes I get into the head of "Oh well—guess we can't deal with that." And sometimes I get into the "moan with frustration and/or despair" headspace, and I'm also too often knocking on the door of "let's just give up to start with" space.

Sometimes the best I can do is just live fully in whatever space I'm in. To be truthful about what's happening and what I feel.

New challenges every day. On so many different levels.

Homework

Learned a bunch of stuff about The Disease (and my expression of it) yesterday and my MD/neurologist/acupuncturist's.

He says that The Disease seems to have changed radically in the years of his practice. When he first started training in such things, he said that all this "bladder stuff" simply didn't exist. Some patients may have had them, but common? Rampant? Nope. Not on the radar, as a "happens to lots of people" problem.

Likewise "cognitive issues." Not a problem. Again, someone may have had them, but as a "general" or common symptom, nope.

He's amazed to find how many MSers have bladder issues. Lots of them, apparently... and "cognitive issues?" Yup, they're all over the place, it would seem. Although for many of his patients, there's stuff they forget but the "clear" thinking is very, very clear. Dangerously clear. As though it might have even been amplified by The Disease. A gift of M.S., as it were...

Now, the "having problems with names," he at least knows where that comes from. If you have lesions in a certain part of the brain's corpus collosum, you have name-remembering issues. At least that's clear. But why so many people have bladder issues nowadays, but "many people" didn't used to... that, he doesn't know. And, probably, neither does anyone else. Given the ads for bladder "control" drugs and appliances, which are also rampant nowadays, bladder issues may not be the exclusive fault of The Disease... but that's another question.

We talked about some of the issues I'm dealing with, nowadays; "sensory ataxia" is one of the fun Greek medical words he tossed off. What's there to be done about that? Well... nobody knows.

But one thing though, is clear, and actionable, and will improve one's life experience, the "experience of being alive."

Healing the spirit.

Classical five-element acupuncture is very big on this, there are many points that are very much intended for just that purpose. (And many of which I got yesterday.)

So, friends who tread the Neurological Highway, this is another treatment with no negative side effects, of which we can all freely, and copiously, partake. Yeah, getting needled by the right person in places like the Kidney meridian point "Spirit Storehouse" do have their advantages, but we all know what makes our spirit vibrate in its own special happy place. at its own special "happy frequency."

So there's my homework for today. Going to lie down for a while (yup, "that" is back again) and then I'm going to try to be happy, why not?

Labels; winning moves

On Slate.com today, Temple Grandin had some very interesting things to say about psychiatric diagnoses.

Now, she's living in a world of dealing with psychological disorders, many of whom may very well have neurological roots, and much of that does not have anything to do with the Neurological Highway that we MSers travel.

However, one word rises to the fore, and I think speaks very clearly to the MSer's challenges:

Label-lock.

I'll let you draw your own parallels between Grandin's and your own experience in interacting with the medical profession, or the Medical-Industrialist Complex, depending again on your own experience.

But another thing Grandin speaks of is a patient's condition being "on a continuum." The patient's state is not a click-you're-one-disease-label, click-you're-a-different-disease-label, it's a continuum.

I saw this very thing (not label-lock, but "perception of continuum") at my last physical-therapy session. My therapist said that in many ways, I'm a spinal-damage patient, classic symptoms of someone who has had very traumatic spinal injury... except for the things that I can do. I've got next-to-no proprioception below the waist, I've got very poor control of my legs, especially my left leg--except, I can "temple" my feet around something the same way Montgomery Burns "temples" his fingers before he says "Excellent." Which a nastily-damaged-spine patient would probably be completely unable to do.

This perplexed my therapist. There are so many things that I can do, which given the number of things that I can't do, don't seem to make any sense. Both the "cans" and "can'ts" taken together do not create a nice, easy-to-deal-with, label-lockable situation. Oh yeah, certainly I can be rubber-stamped as "having M.S.", but what does that mean, in terms of what should we do about it?

Well, it's auto-immune-something. Or so they say... Misguided/misbehaving  immune system. OK, fine. So now what to do we do? Trash the entire immune system? I don't think so. As Finn the Human (of Adventure Time fame) said to some creature who was threatening to drain his life energy, "My life energy? I need that!"

So, let's unlock the labels. There is no "I'm an MS sufferer and therefore I ..." lockdown that we need to impose upon ourselves. The label has its uses, but it's just a label, it's just a tool. And as anyone who actually, consciously, uses tools will tell you: The right tool for the right job. It doesn't matter how nice that hammer is if you actually need a caliper.  And as Grandin said in his Slate article, "Label-locked thinkers want answers. This kind of thinking can do a lot of damage." And c'mon, we're damaged enough as it is, already... who isn't? Grandin's arguments against labeling are specific to specific situations, and his arguments may not align with our situations.

Then again, they may. Because in Grandin's own words, "This kind of thinking can do a lot of damage."

Well, we can't fix the medical profession or the Medical/Industrialist Complex. But we can fix ourselves. As the computer in War Games said...

Giving up; ear wax

"Giving up" comes in many flavors. From many causes? Perhaps, perhaps not.

A couple of days ago, having just learned new and quite wonderful "getting up" techniques, I had used the New Technique to stand up, to rise from a chair in the back yard. It was a wonderful experience. One of the easiest "stand up" moments I've ever had, MS or none. It was, in a word, beautiful.

A couple of nights ago, I was sitting in the same chair in the back yard. The ground was precisely as hard as it was the Afternoon of the Perfect Standing Experience, absolutely everything was precisely the same, except... me. For "whatever reason," and at the time and to this moment I have no idea what that reason was, I didn't do the New Standing Technique. Somehow, I wasn't able to commit to it. And before I was even halfway into the "standing" position, I was grabbing for support, grabbing for "plan B" in advance of needing to go for plan B. Or worse.

I managed to get out of my chair without injury or embarrassment or anything externally discommoding, but... it was a real "Peter suddenly sinking in the water" experience. "Wherefore did I doubt?" is indeed the question, and I couldn't, and still can't, answer it any better than Peter could.

But I'm definitely knocking on the door of "giving up." I've got no confidence in anything, I've been promising myself for days that I will write music, but right now, I don't know that I can. Just trying to scoot myself around the back yard in my transport chair a few minutes ago nearly brought me to tears, in the middle of the back yard because I very nearly couldn't get from the middle of the back yard to the door-to-the-house edge of it. I tried to get up and sit at my music-writing computer earlier today, I couldn't, I had to go lie down again... I'm writing this on a laptop resting in my lap just because dammit, I want to do something besides lie down in defeat. I may... may... try to make myself some tea. I may... may... go back to the "music writing room" and see if something can be made to happen. I may... may... just give up and have some medicinal herbs and hope that they will, at least, bring me a little ways out of this darkness. They don't bring me back to "getting stuff done," but they are pretty good about at least bringing me out of darkness. Most of the time. Often. Sometimes. We'll see.

Maybe I'll try to do some tote renshu (pronounced "TOE-tay REN-shoo," bare-hand practice) in the back yard; at least when you're working with "no" arrow, you don't have to worry about accidentally letting something with a point on the end fly over the fence and stick itself into God knows what. Maybe I'll try to make some tea. Maybe I'll go back into the "music writing room" and at least try... but I'm in a place where that's the least attractive of all the "maybe's."

Which is, of course, why I definitely should try it... or why I definitely should not try it.

A physical therapist once told me that all physical work needs to "hurt good." Because if it hurts bad, you're just damaging yourself, but hurts good means that you're not damaging yourself, you're recreating yourself.

And which will this be? Guess I won't know until I try it.

But even facing "starting to think about trying..." doesn't "hurt good."

And "not accomplishing" things that for days I have wanted to accomplish definitely doesn't "hurt good." So, it hurts both ways, the doing and the not doing, the trying and the not trying. Makes the choice "easy," don't it?

Perhaps I'll give up. For today. But only for today. Which means I'm not really and truly "giving up," is it?

Is it?

We'll see which "flavor" of giving up this turns out to be. Perhaps my response will be, as Dumbledore said as he tried one of Bertie Bott's Every Flavour Beans, "Alas! Ear wax!"

Improvement; aikido; shalom

My my, Things have been Happening.

I've shared much of my "I gotta go sleep now now NOW" experience of current days. Well, a recent visit to my herbalist has been just what was needed. He tracked it down to allergies & other random crap in my lungs (as well as a few other things, but mostly allergy/lung crud) and gave me a formula specific for those.

Instant. INSTANT. Improvement.

I'm not 100% "out of the weeds" yet ("weeds" is how chefs describe running into trouble in the kitchen, a politer way of expressing it than the French "dans le merde"), but things have definitely improved.

I'm sorry I can't share my miracle formula with the community, being that like all Chinese-medicine herbal formulas, it's for me, not for "people." Just because I need a dose of hoelen, in concert with eight other herbs, doesn't mean that you will. Or that anyone will. But dang, taking medicine that actually makes you better, and no side effects... Nice. Very, very, nice. And this formula doesn't even taste bad, which is usually all that passes for a "downside" for these formulas.

In about 1/2 an hour, another physical-therapy adventure. I don't know what's on the therapist's agenda for today, but I will put in a couple of requests; her suggestions for handling "collapse like an imploding building" falls, and once one is (for whatever reason) on the floor, how to get up. Compounding my neurological issues are simple "physical atrophy" issues, muscle weakness through disuse; which definitely needs addressing, and as the proliferation of gym memberships testifies, basic exercise can do amazing things. But my condition being "my" condition, I need to find "my" solution. It may have components of basic good-enough-for-any-and-everyone solutions, but there's gonna have to be customization to put whatever is required into the realm of "doable by me," since "doable on paper" doesn't really work for me, all the time.

Which thoughts recall some interesting adventures with one of my physical therapists. Very very nice person, unbelievably knowledgable, very capable and gentle. But, I think, we both have not just "accepting," but "trusting" to do, on each other's behalfs. I do know that she knows what she's doing, I do trust her to give good direction and good advice. What I need to "trust" is that indeed, she knows more than I do, and she may not explain things in a clear (to me) or friendly (to me) or nurturing (to me) way, but to trust her first, and have concerns about [whatever] after giving things an honest try. What from my point of view she needs to accept, and trust, is that my perception of my sensations is accurate. If I say "this isn't possible" I am not speaking in universal and unchanging terms, I mean that right now, here and now, [whatever] isn't possible, in the way she has requested. She understands and has communicated very well the idea that "The number one rule is, if it hurts, don't do it," and whether something hurts or doesn't is true for me and believed instantly. But "I can't," she doesn't always really hear. Perhaps if I preface such things by saying "Right now, here and now, I can't," maybe she won't click into one of her scripts, "If you believe you can't, then you can't, and if you believe you can, you can," which is very true but whenever we go down this road, I'm talking about perception, not belief; I perceive that here and now, I can't.

She has scripts. So do I. When we're in "script mode," we're not really listening to each other. I can't change her mode, but I can change mine, and I can work with, not against, her script.

An aikido practitioner once showed me an exercise involving changing your own position; he said that technique shows you how the first step in the encounter was to "see things from your opponent's point of view." And my own instruction in aikido, decades ago, began with this: your first job is to protect your opponent.

Something that patients and health-practitioners could both practice. To begin their interactions with shalom... as Gene Scott translated it, "Cessation of against-ness."

East meets West, indeed.

Yet

I wonder how many choices we (I) make because of fear. Not fear of "something bad happening," but as Seth Godin puts it, trying to stay away from fear.

Some cautions are sensible. Can I get into Place X if I'm trying to do with a wheelchair? Does Event X assume that I'll be sitting unmoving in (some kind of) a chair for X amount of time, and does that X time-value exceed what my bladder can withstand, will I be able to bail out of the confines of said place in enough time to get to the bathroom before we're in the "puddle" stage? And oh yeah, does said place X have bathrooms accessible to me, especially me not only me-in-a-wheelchair, but in a hurry?

Friends don't help with "helpful" suggestions. "Oh, it'll be fine," they always say.

My immediate reaction is "You don't know that." My calmer push-back-at-my-friend reaction is "You don't know that it'll be no problem. I don't know that it'll be an insurmountable problem. We don't know. We have no way of knowing."

Even if I use the calm "push back" commentary, I usually get "But with a place like such-and-such, they've got to have those problems solved." And this is where things start to get ugly, because inevitably I want to, or actually go through with, saying this: "You haven't tried to deal with things that were labelled as 'handicap accessible' like I have. What they say is accessible and what is accessible are different. And they don't have to really 'handicap' it unless they cross some state-drawn line with remodeling or repairs, and if they haven't crossed that line... they haven't really 'handicapped' it. I've seen it done poorly too many times, too many ways, in too many places."

But at the end of the exchange, it ends the way it started. They say "It's going to be fine." I say, "It's going to be bad."

And the only way to be sure is to try it.

And that's where the fear comes in. Or, as Seth puts it, the fear of fear. My friends don't want me to miss out on something cool. I don't want to be stuck in a chair with a bladder that's about to cut loose and, as it were, nowhere to go. Besides the floor, courtesy of running down my leg. And my choice always seems to be, "Give up before we even try."

So, then... what am I to do? Well, it depends on mood, I guess... I went to a show in a Hollywood theater that was, like so much that's "old" in Hollywood, about as handicap-unfriendly as it gets, but I knew before I went that there was a bathroom that I could get to with my wheelchair, and within the theater I took a seat that I could get out of if I needed to make a break for the bathroom, and the folks who worked the theater knew that I very well might be in distress at some point and we had agreed upon what I'd do in case of (that kind of) emergency. There was no fear, no place for fear, because everybody had agreed upon (and most importantly, I had agreed upon) something that I knew would work.

As it turned out, nothing bad happened. And that was definitely good.

But when are concerns prudent, and when are they fearful? What enables me to say "F**k it, I'll deal with it" rather than "F**k it, I'm not going even to try to deal with it"? And when are my "concerns" in truth "fears,"  are they fear of disaster—exactly what disaster? What will be bad enough to be a "disaster" rather than just something stupid? Or as Godin says, is it fear of being afraid?

I don't know. Yet.

Therapy adventures; new answers; new questions

Had a good physical-therapy session yesterday. I'm getting along much better with my therapist, who is VERY knowledgeable and very kind (and I think she may even have The Disease, to complement her DPT, Doctor of Physical Therapy). She does seem to have a bit of a "script" for each activity, a "here's how I explain things," which I'm sorry to report, as a technical writer and teacher for thirty-plus years, doesn't always actually "explain" things. But I've figured out how to non-confrontationally ask for, and more often than not "supply," the true "explanation," and knowing what she "actually wants to happen" makes it very easy to make what she wants "actually to happen."

Given that she's notorious (from my point of view) for giving inexact instructions, she's very quick to jump on me for (in her point of view) overstating my disability. For example, I might say "I can't stand up" but she will immediately say "But, you can." OK, so then I go to "Yes, I can get to my feet. And I can stay on them. But not for long." She then says, "How long? Two minutes? Four? Ten?" And then we're in the Battle of Speculation, I tell her I don't know, she says well it's gotta be one of those, what is it, I tell her it depends, it changes, it's never the same, she presses me for some sort of elapsed time. I pull something out of my butt, she's got an answer, she's happy.

But I think this is a good call for all of us who navigate the Neurological Highway (using whatever means are available to us) to clarify the way we describe our condition(s). For me, rather than say "I can't stand," which is an overstatement and thus incorrect (and very self-limiting), it's more accurate to say "I can't stand long enough to do X, Y, Z in location A." For example, rather than say "I can't stand up" or even "I can't stand up for long," it's more accurate to say that I can't stand at the cutting board long enough to make dish X, because to do that I need to prep A, B, C, and D in the following way, and then cook it using methods D, E, F. Now we have something to talk about, to find alternatives. Does A/B/C/D need to be prepped standing at the cutting board? Usually, because of the tools I use and the layout of the kitchen, yes. Are there alternatives? Let's talk... The entire exchange thereby becomes a search for new alternatives, not simply shutting off the future by claiming the disability, by saying "I can't."

So there's an experiment for all of us (M.S.er or not) to try... Instead of "I can't," take the next step: "I can't in this specific way." You'll immediately create an opportunity, because that turn of phrase claims the opportunity to discover that there is another way.

If the definition of insanity is to do something the same way and expect a different result, doesn't that imply that the definition of sanity is to do something differently and expect a different result?

It's worked for other people, in vastly different circumstances. Why not give it a try?

Relax and joy; herbal alternatives; Fire (yes, capital-F "Fire")

Last week was very much a "low." I have a list of physical therapy "homework" (exercise homework, not "memorize" school-style homework), which I've been kinda vaguely sorta doing, but this week I've spent a lot of time just lying down. Sleeping sometimes, eyes closed and listening sometimes. But as the coffee cups have said in the past, my get-up-and-go has got up and went.

A good acupuncturing today. Points specific to getting the energy moving, points specific to just plain enjoying life better: Triple-Heater 12, "Relax and Joy." The BlueHeron Wellness newsletter describes this point this way: "When the solid frozen water of a river thaws and gives way to fluidity, we experience a release that can energetically be expressed as 'relax and joy'."

Heard some interesting stories about successes with medically-employed cannabis, from some other "neurological" types. One of them tells that a very specific strain of cannabis indica—and this relief only comes from this particular strain—one puff, only one puff, and facial spasticity evaporates. Immedately. Another MSer reports that a low dose of a particular brand of oral cannabis makes the vague pains that periodically beset him disappear. Sometimes, for longer than the perceived "cannabis effect" lasts. And a medical researcher with whom I'm acquainted tells me that cannabis reduces inflammation (which we MSers suffer from) and actually helps rebuild nervous tissue. 

As well as, of course, the well-known hunger-encouraging and mood-uplifting effects. As a chemotherapy patient said after weeks of nausea, grief, and starvation, immediately after taking a few tokes and laughing for the first time in months: "Anyone who doesn't think a doctor should be able to prescribe this deserves to have cancer."

Now, I hasten to emphasize that different states and different doctors have different opinions about the World Of Cannabis, and I hasten to emphasize that I am not encouraging any of my dear readers to up and try it. But from what I am hearing from people whose reports I trust, this stuff definitely fits into the category of "What's good for YOU is good for YOU." There is no single magic whaddayacallit that indiscriminately fixes everything... But clearly, like all herbal medicines which are administered in their herbal form without the intervention of the Pharmaceutical Industrialist Complex, there's more to it than most of us think. There is no unitary one-size-fits-all anything, as promising as individual stories suggest or, certainly, Big Pharma's promises. I've been working with Chinese herbalists for years, decades even, and with them, I have always seen the same pattern: This herb does [X] in general terms, but for YOU, I'm using it to [something specific for me, today].

So, what's next for me? Physical therapy tomorrow afternoon; writing music in the morning, if I'm fortunate, energy-wise. What am I working on, musically? The depiction of... a storm. Not a metaphorical one, albeit my familiarity with such things... a real storm, waves crashing on the ocean. 

How's it going? (The creativity, not the storm.) The creative process is an interesting one... We spend a lot of time in a state of  "How about this? Nope. How about that? Nope. What about this? Hmm... I might be able to make that work, but not like this... Right idea, wrong implementation, let's try something else..." Actually, I find none of this discouraging. Inability to stand at the cutting board and stove long enough to prep cook, and plate things? That, I find discouraging. But if I have the energy to create, the Heart Fire... "not getting it quite right, yet" is not at all discouraging.

But, when you're writing a storm, that takes a lot of notes, and all that note-writing, that isn't "discouraging" as such, but it does take a lot of energy. Just the "sitting at the machine" takes a lot of energy, much less the squeezing of notes onto the page. Sometimes, more energy than I have.

But finding alternative routes within the creative process, when the creative Fire is burning... 

That's OK.

Now (repeat)

Ah, good intentions...

Thursday, I had an excellent PT session with a new PT'er. She gave me some wonderful new exercises, including one which functionally (to all external observations, at least) is pretty much the first of the "eight steps," the hassetsu, of kyudo: ashibumi, setting the feet. Again, kyudo as specific therapy for MS and concomitant complications. Except for PT, I also do it "backwards," from the hassetsu point of view, stepping away from rather than toward the target. Gotta exercise muscles on both sides of the body, and all that.

So, Good Intention #1: Do physical therapy.

Also on the list: write some music. A couple of days ago, I think I came to a "oh, that's how to do it!" realization about this one movement that I still need to write. Now, I have what I needed to really begin. Hooray!

Good intention #2: Really dig in to the music that I've been hoping to write. Finally, I can.

Oops! Nope. None of those are gonna happen, at least not right now.

I'm being mowed over by the "Go to bed now now now now now" demon.  I will first try to assuage said demon by siting outside in the sun, enjoying the warmth and the air. And if that ain't good enough, I'm going to bed.

Oh well. Those intentions were good, though.

More news... with luck, different news, next time. Because the beast cries most persistently... I must go to bed now now now now now.

I dunno how "merry" that is for the "merry month of May," but it is a nice day outside. All the windows are open to let in the lovely, fresh air. The perfect thing for ... going to be. Now now now now now.

Belief; scripts; reminders

A very interesting First Experience of the New Physical Therapists, yesterday. I have another appointment tomorrow, with someone else of a different specialty--a "gait" person, I think.

I do like the Tuesday therapist. A very nice person, I think she may be "one of us" (a fellow MSer), I think that's what I heard... Whether she is or isn't, she's a very nice person.

She does seem to be running off a bit of a "script," I'm sure she's done this very First Physical Therapy With MS Sufferer time and time again, but I tend to be "off script" for a lot of what she has planned and practiced saying.

But, this script/off-script dissonance was not without it's interesting moments...

I was having a hard time with one of the exercises, and she told me, "You need to believe that you can do it. You need to believe that you actually have control. If you believe that you don't have control, you won't ever have control."

But I said, "Belief has nothing to do with it. I never get as far as 'belief.' It's 'observation.' I try to do something; I don't have control. I can tell that I don't have control. I don't need to believe anything. Belief doesn't enter into it; it's what I perceive."

She, of course, is right; if you believe that you'll never have something, odds are that you never will. If you believe that you don't have something, odds are that you'll never notice that you actually do.

But I'm not believing that I don't have control. I'm observing that I don't have control.

Now, what may be the common truth that underlies us both is that "don't have" is an overstatement; even a mis-statement. The truth is that I do have control, just not the control that I have always, to this point, called "control." And this is different how from the "lack of control" that I felt when learning how to play musical instruments? The area of my life with which I have a great deal of practice about not being "in control"?

The difference is that when facing Whatever Instrument and playing it badly, I was in complete control. I just didn't know what was the correct thing to do, I didn't know what the correct way to do things was.  And always immediately under the surface was a single word: now. I can't play it correctly now. But if I work at it, I can. (Except for the things that I don't seem to be able to do because I just don't seem to be wired for it. I'm a better timpanist than a xylophone player, I'm a better organist than a jazz-fusion drummer. Or was, at least, before the onset of the neurological nonsense.)

And here is where the common-truth between the two of us lies hidden. Part of it is a deficiency of language; it's not that I have large-air-quotes NO control, it's that the control that I do have is significantly lower than I am used to, and compared to that prior experience, I term to be at the level of "might-as-well-call-it 'no' control." Now, is there a belief hiding there, somewhere? A belief that I have "no control?" Well, "no" may be too harsh... but from my point of view, it's at the level of "might just as well be 'no' control, for all the good it feels like it does me, or--more importantly--the good that I can do with those limbs."

"Wicked limited." I'll try that next time. Oh, this might be better: "Unpleasantly limited." Because, let's be honest; the crappy control is indeed unpleasant.

Do I "believe" that this is permanent? No, I have no reason to expect that to be true, although somehow I think that forcibly calling it "temporary" is a different kind of "intruding belief." State of permanence has no bearing, impact, or effect of any kind on the state of "now."

Should I use a more accurate turn of phrase? And do choose not to be self-limiting? Oh yeah. Quite so. And this was indeed a good, and welcome-post-facto, reminder.

But "belief"? Unless you're going down the road of "If you only had the faith the size of a mustard seed," let's stay away from "belief."

She and I both need to stay away from the road of "belief"; the Neurological Highway has its own divots aplenty, no need to add more.

When she went there, I didn't like it... but yeah, the more I think about it: Good reminder (even if that's not precisely what her script had called for).

Well, I told you I was off script... But, that's my happy place... being an outlier. After all... I do it so well, neurological nonsense or not.