Deal with it

Thoughts on the veranda, this evening, about the MS Highway...

We all know that we're only visitors here, just temporary residents; renters, perhaps even. With years come changes, and saying farewell to our previously ever-so-reliable bodies, one small but beloved bit at a time. And with the gentle farewells, saying farewell may come easier, more gently to us.

The MS Highway is nothing more nor less than absolutely normal human life, but on a different schedule, a different approach. With different purposes, perhaps, even.

Imagine, if you will, suddenly finding yourself on a highway stretching into nowhere, in an otherwise absolutely bleak desert.

There is absolutely nowhere else to go, no other way to go than the way you're going, right here and right now. All you can do is follow the road.

And your absolutely only option is to say: There's nothing else to be done. Deal with it.

And that's life on the MS Highway. Something you always relied upon isn't able to be relied upon. Something you've spent your life doing, suddenly, you can't do any more. Things you took for granted are as good as just-plain-gone. There are moments of extreme beauty, when you realize that your beloved is even more amazing than you could ever have imagined. But most of the experience is with malfunction, forced changes, and loss.

But sucky as that can be, you're still on the highway. And there is only one option: follow the road. It only leads in one direction, where it ends up I have no idea, but there is only one direction: Forward.

There's nothing else to be done. Deal with it.

But that's life, plain and simple. Things change. If you want to stay on the Highway of Life, there's only one direction to go: Forward.

There's nothing else to be done. Deal with it.

That's another story

A simple day so far. The usual Bathroom Stuff (which basically every creature on the planet does anyway, nothing MS-y about that, at least, us MSers just have our own... challenges... with such things). Managed to order a birthday present online for my parents; I had gotten my brother (with whom parents are hanging, doing the Grandparent Thing) some artisinal flavored salts which went over hugely, a tremendous hit indeed, so since they have all been raving about them, I ordered a different sampler pack, dang this "internet" is convenient! Besides, my mother apparently really just-plain-loves salt anyway, so it's win-win. So far. Plus, I'm very happy that as they're living the Golden Life as Grandparents, they're able to show the wee ones that other people's birthdays are important to celebrate too, a "teaching moment" as they say in the trades.

The "parent path" is not one that I chose (or one that did not choose me, as one may want to look at such things), but I do make a dynamite uncle. At least, so I like to think.

Used today's energy so far to order gifts, check medical-supply orders, diddle some other business-y things via the web. And this. Dunno how much steam I'll have left when I finish this, but we shall see.

Still thinking about the disposition of my dear little truck; years ago, I had not just planned, but dreamed, to leave it to the wee ones above, imagining that the older one might be due it by right of birth order, but I further expected that the girl would be the one who fights most enthusiastically to call a pickup truck hers, much to her parents's dismay and laughter, but that road ain't gonna be traveled, as far as I can foresee... Details about truck disposition to follow later, when I figure out exactly what needs to happen.

This particular bit of the MS Journey has been... interesting. Saddening. Frustrating. Withering, especially withering. But also revealing... last night I realized that I still hadn't really bid farewell to some specific frustrations at my former workplace... As Ram Dass might say, if they don't appreciate you, that's on them, but if you're hung up on them not appreciating you, that's on you, and that's what you need to deal with. (You can't fix Them, after all...) I processed some anger and resentment, merely identifying and acknowledging that it just was... and I think I actually feel better today, having done that "inner work."

Well, ain't much we can do neurologically, but spiritually? That we can definitely see to... I can't do[insert very, very, very long list] all sorts of things, but be honest with yourself? That, we can all do. And probably should do more, eh?

Oh, one ting I really wish were available... Neil deGrasse Tyson has been doing incredible work explaining the cosmos with, well, Cosmos, and I encourage you all to watch and enjoy it. The other day, my MD was telling me that one's nervous system doesn't actually cause the bowels to "fire" (start the expulsion process) but rather, nervous system "regulates" (his words) the system, and difficulties arise when said nervous system can't regulate things properly. Ah, if only Dr. Tyson were revisiting the imagined series "Poopage," rather than "Cosmos," we'd really learn a lot about how such things work, or in some of our cases, don't. But I can't see PBS running that series, although given Seth MacFarlane's work on various animated series, I think we have a good chance of getting it created. An unfortunate metaphor, given what I was discussing... but that's another story.

Time to give up

Still withering. Big time, if such things can be said of withering.

Wrote an e-mail. Gonna try to write a response to the one I received.

I'm not even trying to type with my right hand today. And just had to shoot a few minutes recovering from the meatball typing I do with just my left hand, which does not make me feel good at all.

And just had to use MORE time to inspect and rewrite. AGAIN. Yeah, I know we all make typing mistakes, but I usually catch them faster when I can watch the screen, which I can't do nowadays, because not watching the keyboard as I type makes things worse.

Well, that's it for today, at least here. Quick message responses, and then I give up.

There's not much else to do, right now, besides give up.

Well, better get to it, then... Including, alas, giving up.

No fun at all

My herbalist says that MS is spoken of, in his circles at least, as a "withering" disease.

Well, nowadays, that's definitely me.

I'm having really unenjoyable experiences just trying to use my right hand. Hold a spoon. Rinse a cup. Use a whisk to make matcha tea. Use my right hand, and start crying out not in pain, but in despair.

Sometimes I think I'm getting better at making the whisked tea. Sometimes... I just despair.

Let's not talk about typing. Poor hand control is adding at least 25+% of time merely to correct slovenly typing mistakes. I've pretty much given up using my right hand even for hunt-and-peck typing, because I can't even do that well enough.

And now, a snack, and bed. My wife wants to do something with me outside the house today, maybe, maybe, that'll happen, but frankly, I just want to go to bed and stay there.

Not a "primary" gifts-of-MS day, so far. Maybe it is, but I just don't see them right now... all I see is despair.

No fun. No fun at all...

Giving up or letting go

Seems to be "biting the bullet" time of year.

Another of my esteemed MS-blog friends mentioned that she had also let her driver's license lapse, her husband does all the driving for her. I was very pleased to do the driving that I could when I could, because I knew the day would come when I couldn't.

For now, at least, that day seems to have come.

I had hoped to drive my poor little truck for at least another decade,  when I'd pass it off to my nephew (although, honestly, I think he'd prefer a car, I think my niece was going to be the one who wanted a truck). That's not going to happen... I think it may just be time to sell my poor little truck. Time to find someone who wants a pretty darned bulletproof little truck with high-grade hand controls, and let them enjoy the freedom it can provide. I suppose I'll need to put it on Craig's list or something, that's something else to look into, I guess.

I'm gonna need an entirely different vehicle to drive. Assuming, of course, that I can get the driver's license nonsense settled. My truck gets on the order of 20MPG, which ain't much to go on but if all you do is drive a few miles a few times a week, it ain't so awful... my wife's Prius gets, if I can believe its dashboard, between 50 and 100MPG, depending on where and how it's being driven.

Maybe it's time for someone else to deal with 20MPG vehicles. It is a nice little truck, though.

I'm going to talk to my dad about this; at one point, they finally up and sold the 1967 VW bug that was older than my "little" brother. Not so "little" now, college professor and dad of two children. But they managed to let go of a perfectly lovely vehicle, which had been very dear in our hearts for decades.

Because it was time to let it go.

We MSers, we face that all the time, if my experience and what others have shared with me has clearly revealed. Hell, here I am typing only with my left hand, because using my right just gushes with error after error. Is it just bad today, or is it time to just let go?

"Give up" and "let go" aren't interchangeable, but functionally, they're pretty damn close...

There can be victory in letting go... if that's what we choose. There could even be victory in "giving up" depending on what you're giving up...

As they said in The Phantom Tollbooth, it's all in the way you look at things...

More than "enough"

An interesting bit of self-realization yesterday.

We had someone over to look at and fix our washing machine. A lovely fellow he is, he has sold us various appliances, all of which we're happy with, and when he fixes them, they stay fixed. a nice hip-pocket fellow to have handy.

So the washer is misbehaving in its (at the time) messed-up way, and my wife and I tell him how the washer has been misbehaving and how nice it would be if it stopped that. He fiddles around with it for a while, and POOF! Fixed!

Hours after he had left, for some reason I start musing over my dissent-ridden years at my former employer, and I remember how people would insist upon ways of doing things that I knew would not only not work but would cause problems. Has nothing to do with the outcomes They sought, I could have easily guaranteed the goals being attained, but They insisted on problem, extra-work-creating, failure-creating, means. All of which They caused--work and failure and worse.

And I'm thinking about Appliance Guy, and I realize that I told him the final outcome that I wanted but I did not insist upon the means to achieve it. Why?

Because I don't know how to fix washing machines. Let me say that again:

I don't know how to fix washing machines!!!

And I certainly don't know more about washing machines than a guy who has been fixing all kinds of them for thirty frakking years.

Which, during my last years There, was as much as or more than I had been a Computer Guy. I knew more than anyone else There did. People would occasionally tell me that they knew I knew more than anyone else there did.

But that didn't matter, because They knew what they wanted and how it should be done. Their Way, of course.

And as I thought, there was no hostility, no anger, no stuck-in-my-craw anything, I just realized...

They didn't know that They didn't know.

Well, that does sum it up. The blind don't know they're incapable of perceiving color, but the wise further know that they (the blind) have no business picking paint chips or carpeting or clothing based on their color. The unwise will do... whatever it is they do, including raising a fuss about what they can't perceive.

And my big realization was... yup. That's  the way it was. But as for now, I'm just here, now. How They are now is their problem. To quote Summer and Morty in Rick and Morty...

Doesn't matter.

Between Adult Swim and Ram Dass, there are new realizations every day. Yeah, this morning I managed to spill flax seed all over the kitchen floor, but then, and even sweep it up. And believe me, sweeping the floor while sitting in a wheelchair is ... interesting... But doesn't matter. I did it.

Simple is enough, when all you need is "simple." We MSers can grouse about what we can no longer do, but if simple is what you need and that's what you can provide, simple is enough.

And we don't really need more than "enough," do we?

What dreams may come

Dreams are the most amazing things...

Two amazing dreams last night. First, a very simple just-stand-and-pee dream. I wish I had as spectacular an "event" as was provided by Spider Dijon on The Mighty Boosh...

By this character's own admission, there's a reason that he's called "Spider"... I have been called many things, but this is not one of them. 

Anyway, back to the dream. Not as spectacular, by any stretch (as it were) but as effective. 

A second, and simpler dream, same day (by now, it is day): I am standing--yes, standing! Next to the bed, and I say to my wife, "This is what I really hate about MS. Right now, I'm standing. I'm walking. Now..."

And then the cat mews, and I scoot myself down to the wheelchair, and struggle from the chair to the commode. I guess I'm awake, then. Sigh...

I scoot along with less trouble than I often do, but I struggle still, and definitely I'm still wheelchair-bound.

What dreams may come, what dreams may come indeed...

Who'd have imagined...

Decisions, decisions...

So we get this notification from the insurance company that insures our vehicles that my driver's license has been suspended. Would have been nice for whoever did the actual suspending to let me know, I would imagine. Well, as you can imagine, insurance company doesn't like underwriting people with suspended licenses, and All Sorts Of Issues now demand our attention.

I haven't been behind the wheel of my truck for somewhere between six and nine months. I haven't even tried to get into my truck for months. Truck has hand controls, which I've always thought were superior to foot controls, for years. I don't, and never have, even tried to operate foot-control vehicles also for years. 

I have no idea who thought I had done something meritorious of license suspension. My wife thinks it was Some Medical Entity who told the DMV that I had Some Medical Problem and thus, my "driving privilege" as DMV likes saying, needed to be suspended.

How to get the suspension lifted is equally dense and unclear. Especially because nobody seems to know what it's about. It's the Usual Big Government Agency Thing... see the right person, get the Right Forms Filled Out The Right Way, problem disappears. Alas, though, the antithesis of "easy."

So basically, since I don't drive nowadays, mainly because the Glory Days of hoiking my wheelchair into and out of the truck by myself, and getting around the outside of and getting into and out of the truck are, at least today, ain't happening, so for the foreseeable future, it doesn't matter whether I have a let's-me-drive license or not.

So... I think I'm gonna just keep the underwriters happy, take myself off the insurance, which means I'm not covered if I drive, but since I don't drive, what matters it? When it seems doable to go struggle with the DMV, we'll see to that, then.

Thank God for my wife driving me places. And for the friends that fill in for her when she can't do the driving.

Instead of automotively roaming the world, I will sit on the back veranda, smell the air, and listen to the birds. Go back to bed and meditate. Simply repeating mantras, as Ram Dass discusses, is changing my life vastly for the better. Will I write more music? I hope so... We'll see about that. We take each day as it comes.

Just like life, right? 

And so, I can't get myself into my truck to cart me off to the Taiwanese tea place. Someone else has to do that for me, which means they do it with me. And that's definitely a nice option!

And if none of that happens, I sit. I listen. I smell the air. Maybe I call friends or family on the phone.  My wife is a constant source of joy for me, and when she goes off to have fun with her friends, I rejoice at her joy; when she goes off to perform, even just "acting over the microphone" instead of "trodding the boards" on stage, I rejoice. Yeah, I have body difficulties and annoyances, who doesn't? God willing, I write music, but whether I do that or not, I meditate.

And all this, all things considered, isn't a bad life. It has been an amazing life, and it keeps getting more interesting, just in new and different ways.  Given that much of the "interesting" is specifically thanks to living the "MS life," Actually... it's quite a good life.

So I don't drive, nowadays. It's still quite a good life.

Now, medicinal herbs, lunch, bed and meditation. Maybe some oolong tea. Not "the good life" as most people imagine it, but it is very, very good, MS cruft and all. If someone would have regaled me with the list of what I've lost, I wouldn't have imagined you could even call this a life, but... Yes, it is a good life. A wonderful gift of MS.

Who'd have imagined?

You never know...

An amazing place to be, right now.

If MS were an entity, I would say that it had brought me to a very very amazing place. Since it doesn't exist, there is no "agency" to ascribe to it, but I am in a very amazing place, MS and everything.

Fortunately, through a combination of prudent investments, help from experts to survive the Various Kinds Of Insurance world, the gifts of the Spirit, and/or blind luck, depending on how one sees such things, I've got a house and medical care and the ability to support my wife in her endeavors (who helps me very sweetly in my own, when she can).

The job that I had for years turns out to have been bad for me. Leaving it was one of the best things I could ever have done, and my doctor/acupuncturist/spiritual advisor wondered why it took me so long to get out of it.

Typing, right now/today/this moment, is no fun at all. Use my right hand for anything, I spend more than half of what little time I have sitting at the computer just correcting WTF errors. Even using only my left, I spend nearly that amount of time with error handling/correction. Some days I try to write music... then bail, because manual coordination just ain't there. Or sitting at the computer ain't there. Or something else Medical needs dealing with now now now...

If MS were an entity, I would be stuck on things it has taken away.

And what do I have left?

Pretty much all I have the "anything" for... is working on the spirit. Meditate. Chant mantras. Just sit, perhaps not Zen-like but Zen-spirit-like, at least. Make tea. Look at the birds, the bees, the flowers, the... Everything of Nature, and specifically to seek out seeing things I've never seen before. As Emerson said, get my bloated nothingness out of the way of the divine currents.

The great jihad is the inner jihad. Yeah, instead of fighting with The Enterprise at my former workplace, I seek enlightenment, and enjoy the gifts that Nature gives.

A better pursuit, really... And MS and all, it's actually a nice life, living in pursuit of the Spirit.

Give it a try. You never know what you may discover.

A mighty gift indeed

One of my health-care providers likes to quote another of his MS patients, who says that the great thing about MS is that it makes you more sensitive to your body. The bad thing about MS is that it makes you more sensitive to your body.

But I will tell you, practicing sensitivity, just sitting and watching and listening and telling the truth to yourself about yourself, that has effects too...

And here's what I'm noticing more and more, every day...

The wonderfulness of... my wife.

She has had "caregiver" thrust upon her, which she has taken on with good cheer and good spirits, but every time I see her, it's... wonderful.

Some days, she's amazing; some days, she's radiant. Some days... she's both.

And this is definitely a gift of MS, to be showered every day by how [your favorite enthusiastic expletives here] wonderful my wife is. A couple of days ago, she was working on I forget exactly what, but man, her mighty mind was in 5th, 6th, maybe even 7th gear. Phenomenal, she was! IS!

So that's your homework for today, fellow MSers and all of us who "trod the boards" on this earthly stage... to see how wonderful the people right in front of you can be, and are.

As Rabbi Hillel said, "Go thou and study."

And, by the way, my wife doesn't look like this. She sounds like this; she is, after all, a voice actor.

But around the house, she's much nicer. Much nicer.

One look at that smile, and whatever the MS is doing that day... just disappears. Because that smile, oh that smile...!

She is a mighty gift, indeed...!

We'll see

It's amazing what I miss, and don't miss, now that I'm wheelchair-bound. Many of these things went the way of all things mortal, long before I was fully "accessorized" by the M.S. effects...

Organs. I used to play all sorts of organs...

The Ruffati organ at St. Andrew's Presbyterian Church in Newport Beach, CA. I played that one a lot. Was also the first church at which I had to turn down an organ gig, because I couldn't deal with the pedals. At least the bench had a back so I couldn't fall off. Backwards...

First Congregational Church, Los Angeles CA. The largest organ installed in a church in the world, Makes a wonderful noise, it does; please enjoy my festival improvisation on that very instrument! I was for a while their "first call" sub, when they were between salaried organists; I understood the instrument well enough that with very little notice, just tell me what the hymns are this week and with a couple of days of registration tweakage/practice, I was all set. Just add water, instant service! Oh, those were the days.

I don't necessarily miss "being an organist." What I miss is being able to walk (yes, walk) up to the instrument, sit down at it, and just play it. And have fun. There are all sorts of quite glorious instruments here in LA, the Rosales organs in various locations, some really awesome instruments in unusual "what a wonderful surprise that you guys have one of those!" places.

None of these instruments can be accessed except by ordinary non-MS-style walking. The First Congo organ requires steps. And, if heaven forfend, you want to use the console at the back of the church, you gotta go up a whole bunch of stairs. I always used the front console, I never even tried the back one, I've never even sat at it. I'm sure they'd let me in to it, but... you gotta be able to get to it. Which, today, I can't. (And by the way, for those people who don't like me saying "can't"...  screw you. I've tried. I can't. As Dick Cheney is often quoted on Family Guy, go f--k yourself.)

So, why bring this up? First... I just found the photos on my computer, I figured I'd share them, what the heck. But being wheelchair-bound and stripped of a long-beloved way of life doesn't necessarily equal "regret." Such is the way of all flesh... things change. Or as some MD's concurred with my sporadic "vaso-vagal" near-fainting experiences... Yeah, that s--t happens, sometimes.

I still can, or at least I like to think I can, compose new music, if I can sit at the machine long enough to confront the composition process. But, today I've gotta do some cascada sagrada, a long-favorite herbal formula made out of what's basically just tree bark. What's precisely what's gonna happen is not clear, but I expect everything will come out all right, and I'm sure you can guess what I'm talking about, you don't want more details and honestly, neither do I.

So, off to sneak some lunch, then cascada myself, and meditate. Maybe work on music? We'll see what cascada has to contribute to the day... Who knows? We'll see.

That's pretty much the two most-often said words by all of us MSers, in ever so many contexts...

We'll see.

But as I always remind us, and myself, that's life, though, isn't it?

Magic words

A new way to look at "compromise."

My last place of employment was not so good at this. Certain People wanted things done Their Way, even if it was clear to an impartial observer (should any have been asked for their input, which they never were) that A Different Way was actually more beneficial to everyone. Except, of course, the Certain People who regarded Their Way as the Only Possible Way. Whether it actually worked didn't matter, because Getting Their Way was paramount.

Now, let's be honest, how many of us is that true for? Different details, but similar Rightness Of Your Way whether facts portend otherwise? Facts, don't annoy me with those, My Way is Right, after all...

But there's a different way to look at compromise...

When we compromise, we win.

Has nothing to do with who's or what's right. But remember that magic word, "we"...

When we compromise, we win.

Well, yes, "you" don't get everything you wanted. But I am reminded of a very sweet moment from the new Adult Swim show Rick and Morty where someone asks Summer something that's clearly asking her to pick sides, and specifically the side of one particular person. In this scene, Summer just smiles, and says...

"Doesn't matter."

When a Care Giver is doing their best to care for you, and there's a way they want to do things for whatever reason, and it's probably not your way, but having things be your way... that's important for things like "I need stuff from the pharmacy by this date/time" or "I need This Particular Medical Equipment at this particular time or Bad Stuff might happen, " but for just ordinary quotidian life stuff, change the way you think. When we compromise, we win. As for the details, remember those two magic words...

Doesn't matter.

Those five words...

I'm getting battered, as all of us MSers do, with suggestions about how This New Whatever is Just The Thing. Latest treatment for MS! Sometimes, people even tell me they know MSers who are taking it and reaping rewards! But mostly, I'm battered by It's The Latest Thing.

Open any MSer-targeted publication and you'll see little else.

There's this one particular Thing, not the Latest MS Drug Du Jour but it's been around a while and the ads are ever so enthusiastic (as they always are). And this one's oral, not injected! Hooray! Well, yes, sometimes when you take the first pill it kills you but it hasn't killed that many people, so far. But it's oral, not injected like all those other MS drugs! And except for the maybe it'll kill you immediately, which it hasn't done to that many people (yet, or as far as we know, at least), it won't make you feel sick like those other MS drugs. But you still have to take it every day for the rest of your life. But it's oral!

Fine, fine, be that all as it may... will it help me?

Silence.

But it's oral!

Silence.

It's based on a natural chemical, they say, it's not synthetic, it's just been... fiddled with--no, I mean improved! And it's oral!

Doesn't kill that many people (they say quietly) but it's oral! And this guy over here, some of his symptoms have abated!

Fine, what does it cost? Well, they can't tell me.

I am getting so insert your favorite string of obscenities here SICK of those five words.

Well, we can't tell you.

I call the local pharmacy and ask how much said drug costs. Well, they can't tell me, my doctor has to ask for a pre-approval (whatever that means) and then they can tell me how much it might cost but insurance may or may not pay for it. We won't know until the pre-approval (whatever that is) goes through. Checking on the web it says it's nearly $100 per pill. Per day. For the rest of your life.

But, will it help ME?

Well, we can't tell you. Why don't you try it? If it doesn't kill you immediately, which it doesn't for everybody but for some yeah, but we think it probably won't kill you, probably, and then you take it for a few months ($3,000 per month, basically) and maybe you'll see an improvement. Or not. But, it's oral!

This isn't a help to the diseased. It's a cash cow.

Here are some things you'll never hear...

Ask your doctor if huang qi (that's Pinyin, pronounced "hwhong chee") is right for you!

That's astragalus, which has been used in traditional Chinese medicine for thousands of years. It grows in the ground. It's a plant. You want it, grow it yourself, or take it off the shelf of pretty much any Chinese grocery store, it'll be in the "herb" aisle, it's a few bucks for a bag with a few ounces in it. No "cash cow" profit motive there.

Ask your doctor if sheep placenta is right for you!

Sheep placenta you'll find on the shelves of many Chinese pharmacies. Sheep grow them. While they're growing sheep. Same with human placenta, which makes differently "entertaining" label copy, but it's there too. We grow those too. No "cash cow"profit motive there.

Ask your doctor if cobalamin is right for you!

That's Vitamin B12. Every red-blooded animal on the planet makes that for themselves. Some of us are bad at it, so we need it. You can get it off the shelf pretty much anywhere that sells such things. No "cash cow" profit motive there. And it's oral. Sublingual, actually.

Ask your doctor if cannabis is right for you!

You ain't gonna hear that for a while. But it's a weed, that's why they call it "weed." You can grow it in your back yard, or on your back porch or in your kitchen, in a sunny window. It is, and has been for years, the largest cash crop in California, and Colorado is currently finding that actually, it pays for itself. Hard to find profit motive there, at least on the scale of $100 per day for life, but as the Colorado public schools are finding out, there's enough money to share, certainly. But I know quite a few people who tried one joint and realized it was either a good idea or a "feh" idea, and for the cost of one joint or pipeful, it was a cost-effective experiment. But, the people have voted: Those whom it helps know that it does because they tried it and it actually helped them. But it's oral, right?

You won't hear that about the latest glossy-ad drug being touted in the MS publications, the massive number of "I tried it and it helped me" users. Which I don't hear from the MS Touted Drug Du Jour world. Well, yes, they did find a lethal dose for cannabis: forty-plus POUNDS, all at once. It'd do you in just by falling on you.

Now, I don't have it in for "derived from stuff" pills. Aspirin comes from willow bark. It works fine, and the per-pill cost is miniscule. Even if you've got a heart thing and need to take it every day. Tends not to kill you on the first pill, too.

I'm not categorically opposed to Western medicine; it has its uses. And abuses, and misuses. Just like life, y'know. But if all somebody has to offer at the end of the day are Those Five Words...

Well, we can't tell you.

Then we don't have anything to talk about, now do we?

Zen walking; indirect gifts

My kyudo shishou (pronounced "shee-so", the "ou" is just a long "O", and as he translates it, it means "mentor") has a blog just about the Zen of walking, at Zen Man Walking.

Another friend of mine summarized what he learned living in a Zen center as simply "Pay attention."

Well us MS [huge air quote] "walkers" really need to pay attention. To everything. Don't pay attention, and you may pull the TV off the shelf onto yourself and crack a rib (I did) or you may hit the ground and wind up crushing a wastebasket which may have cracked another rib (which I also did) or you may hit the ground and require the help of another person to drag you across the room to somewhere you can pull yourself up (which I also did).

For me, certainly, not paying attention... can end badly. Even when I am paying attention, it can end badly. But, as I'm paying attention as it ends, at least it ends... interestingly. Because every time I hit the ground, it happens differently. Not always a lot differently, but it's unique. Pay attention, indeed.

But in my [huge air quotes] "walking," I pay very close attention. Feet press against the ground. Sink into the earth, not by bending your knees but simply by sinking into the earth. Knees apart, keep them over the feet. When it's time to sit back down, keep the feet oriented correctly so that they catch/hold weight best for the direction I'm traveling. Or, if things ain't going so well, fall backwards into the wheelchair in "just the right way" so it, not the floor, catches me, and hang onto the Right Things to help guide my weight as it falls backwards, under control as best I can, into the wheelchair.

Pay attention, indeed.

And something else came to me this morning... from where, I don't know, Spirit? My Angels? A "leading," as my mother used to call such "visions"/impressions that came from... who knows where? But the message was simple.

Tell the truth... to yourself, about yourself.

As I'm typing this, I keep trying to use my right hand. In not much time, I stop using all five fingers (I'm on forefinger and thumb, right now), and shortly I stop using my right hand altogether.

I don't like this at all. I don't like making so many typing errors simply because my right hand mashes the keyboard, out of my control. I don't like being unable to express myself because my muscles have stopped working properly (or properly enough to express myself over the computer).

So, tell the truth to myself. I'll try to share it with you, since we're in the Blog-o-space...

I feel sad. I'm not finding my way to full-on "mourning" my loss of control, but sad... yeah, I'm sad.

Is there a way to work around this, to get some kind of device that lets, helps, me express myself? That, I don't know... yet. I hope to, someday soon. But right now... I've pretty much hit the wall. Did some business, made some tea, did the "bathroom thing" which is always an ... adventure, let's say politely... Is the pain starting? Is it time to bail? Dunno about that yet, but I have some small amount of (yuck) typing to do, I will make myself some tea and oh it's 12:30 maybe I'd better feed myself because body needs it but I really don't enjoy it much (as I've mentioned before, this is something that ain't worked out well so far) so I don't eat much and then I get weaker and other things happen and... well, no use going there today.

Today is commencement at the school for whom I used to work. They're using my music, but I'm not playing the organ. Second year in a row of not doing it, after forty years of doing it.

Well. the leg pain might be starting right now, it'll definitely have kicked in by showtime, and the last time I tried to sit merely at an organ--that organ in particular--I nearly fell off.

Don't need that. Hitting the ground and falling off things, I can do at home, see above... So, the show is happening without my direct personal intervention.

And that's fine by me. There may be, in circles I can only guess at, some differences of opinion about the [air-quotes the size of the Hindenburg] "correctness" of stuff I did for that school, but one thing everyone can agree on, I handed "my stuff" off really, really well.

An indirect gift of MS, it would seem.