Thursday, December 31, 2015

Enjoy it

Had a nice visit yesterday from a student-turned-friend long before the "student" thing was over. He was among the anime-loving that I would hang with... Friday afternoons, I would show anime to the kids, because who could complain about that? There's no tutoring Friday afternoon, there's no "why aren't you home doing homework and studying the day before the weekend," we just watched cartoons and had tea and enjoyed life.

Not a bad Friday afternoon.

He shared some quite powerful changes some of our anime-loving number have gone through; his mom also came over to pick him up, we all talked about some College Things that the college counselors never really talk about when prepping high-schoolers for the change to that particular world.

One thing I told them both was that Guy in a Wheelchair can tell you right away... Things do change. Us MSers will be very quick to tell you... oh boy, do they change.

Tomorrow, it's gonna be January 1, and Pasadena goes whack for the Rose Parade. We may get some sort of airplane flyover, which can be seen easily from across the street. My wife and her mother have in the past actually taken the trouble to visit the parade route, but winter colds have "told" them that watching it via broadcast (webcast, in our case) is the Way To Go tomorrow.

Although I do miss the Goode Olde Days when the folks once in Firesign Theater would simulcast their own commentary over the radio; watch channel X and turn the sound off, listen to radio channel Y and listen to them, and dang it was great!

And here's your brain popper for the morning. Today is the first, and only, December 31 for the next 365 days. Today is a new year. The calendar people want to make a big deal of tomorrow, but today is technically, and actually, the first day of a year.

So, happy new year!

Enjoy it!

Sunday, December 27, 2015


In the "liturgical" church world, it's still Christmas, and will stay that way until January 6th, the feast of Epiphany. It is still a time for joy. Not for shopping or decorating or... you know the list.

Now, who couldn't benefit from that? Y'know... Joy.

A superb Facebook post (sorry, don't have it at hand else I'd point you at it) discussed the difference between "taking" and "giving." Happiness comes from "taking," as in "I wanted This Thing and I got it so now I'm happy." But meaning, meaningful-ness, being meaning-full comes from giving. Giving doesn't just do "poof, now you're happy!" but and you can do it and not "become happy," and yet somehow... it's better.

Giving, even us MSers can do. Sit with a friend. Make tea. Listen to music... listen to your friend. A particular person called the other day, worried about his mother aging and all that comes with it and who is not doing well with it, and he reached out to someone whose life is also going in dark places health-wise (that'd be me), and maybe I could help her deal with it because I seem to be doing better with the journey?

Just listening is giving. The sort of giving that even us wheelchair- and more-than-a-little bed-bound can do with trivial effort... and joy.

My amazing and wonderful wife has her mother visiting for the holidays. We are blessed not just by her mom's boundless humor, and my wife's boundless love and happiness to have her mother here, but mom will do things like pop off to the store or wash a few dishes... the sort of things that give moms happiness just to do. Giving, y'know. Something moms are really good at, the "giving" thing.

Karen takes her mom off one afternoon to see some really really cool stuff here in Pasadena, and a friend of mine comes over to hang with me so they can feel free to pop off and not worry. Said friend I really enjoy hanging with each other, and yesterday I had him go through some vinyl records I keep carefully, including oddities like a recording of Fred Blassie singing "Pencil Neck Geek," stuff I don't even remember hearing, like the one labeled "Tupelo Chain Sex," Rufus Harley playing jazz bagpipes (you should hear him do Windy)... and a recording of a jazz version of Pictures at and Exhibition that as far as I can tell may not exist anywhere else besides that very record. I sent him home with it to enjoy on his record player, which he too has guarded jealously. I make him a cup of tea. I send him off to the neighborhood Starbucks for some ground coffee, which he puts through my French press (I got a lot of fun cooking gadgets), which he loves using and thinks makes a really good cup of coffee.

Zero cash exchanged. Well, I did buy my friend a hamburger for lunch, but he was the one who went down the street to pick up lunch for us both. Cash-wise, I don't think any of this counts.

But you see a pattern, don't you? Meaning comes from giving. Meaning reaches within, in a different and more profound way than just "happy" does.

And this kind of profound meaning is nothing that being nastily MS-ified stops from happening.

So, MS friends, there's your zero-side-effect prescription for the day. OK, I guess there is a side effect...


Thursday, December 24, 2015

A merry Christmas, indeed!

So many of the MS Blog community will, from time to time, talk about their holiday preparations... Got the cookies ready, making some beloved dish for the family, going out to see folks. That sort of thing. The wonderful, and very joyful, magic of the season.

Well, what have I been doing? Besides lying a lot in bed, which ain't too holiday, even if I am occasionally watching Christmas Carol?

Well, let's see... I sent music to churches quite literally all over the country--Virginia, Texas, Oklahoma, Massachusetts, a few more, it's a bit of a blur... Ordered Christmas gifts to be delivered to the other side of the country as well as here at home. Saw a friend whom I can very rarely see in person, who happened to be here in southern California and could actually visit! To celebrate, I made one of his favorite teas--pu erh, of course. Not the stuff of Victorian Hallmark Christmas, but quite nice for cold weather and great for your health any time of the year.

So, I want to gift all of you with some music, my dear readers! The "proper" for Christmas Day, the text you're supposed to use if you're in the formal-liturgy world, is "Hodie, Christus natus best"-- today, Christ is born, today the savior appears.

And so for all of you, here it is, an excellent 2013 performance by a really really really good orchestra and choir.

Have a merry, merry Christmas indeed!

Tuesday, December 22, 2015

Sol in solstice

Today is the winter solstice. Astronomers and astrophysicists and similar folks can tell you exactly when UTC the solstice occurs, but here in dark cold and wet Pasadena... It's the solstice. Given how overcast it is, there's no Sol in solstice, as far as I can see. Which ain't much with this cloud cover.

Many spiritual writers of many pursuits speak of how the darkness comes  so that the light can return.  This is true metaphorically on n anatomical level; you eat only after you're empty, you can't fill if you're already full. Biology and gastronomy and spirituality: When all those tell you the same thing, best to listen.

And so it is with us on the MS Highway. The number of things we have each lost due to this neurological nonsense, if written on just scraps of paper, could cordon the planet. Each of us has lost things that were very, very close and precious to us. And they're all gone.

And yet, the darkness means that light will return. These can be very dark days, sometimes very dark,  yet the promise of light remains with us.

So then, this is what lies before us, this particular day.

Look into the darkness without fear, without darkness within ourselves, and see the light that is already there.

There is a Sol in solstice, after all.

Friday, December 18, 2015

How's that working out for you?

Had a wonderful, wonderful, acupuncture treatment yesterday. For those of you who fear the pain that might (must? or so you fear) entail... First, some acupuncturists hurt a lot. Some hurt a lot. But this one doesn't. There are always points that are going to hurt anyway, and we all have our list of them, but most of the time, there's no pain. Some times the brain interprets the signals it's receiving as pain because it has no other way, but one can train one's self to experience it differently, and it can be quite nice, actually. Except the points that just plain hurt.

We also had a very good dharma talk, about (among many things) what I can call most quickly "keeping grudges." Such-and-such group did me wrong (or so I feel), even thinking about said Group sets me off sullen/mad. I can't quote het correctly, but one of her thoughts boiled down to "How's that working for you?"

Clearly, it's not.

I am reminded of Dicken's Christmas Carol, the exchange between Scrooge and the ghost of Marley. Marley says of himself:
"I wear the chain I forged in life."... "I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it. “ 
Well ... clearly, that's me too.

Another good thought: That was then, this is now.

Today, I am typing in today's way. Today, I am using the music software in today's way. Foaming about how this ain't the way it's spoze to be, this ain't the way I've spent years getting good ta ... the list just keeps going on and on.

So, today ... I'm going to do what I can the way that I can. If a small and easy change will make things better at all, and the change is "makable," make it and keep moving.

I had an idea (for example). Note it. If I have the strength to start it, start it. It really really doesn't matter how much gets done. Just do something. But only what can be done, in the way it can be done.

And really, what does it profit me to wig out over how I can't do it like I used to?

Well, age does that at its own speed, as apparently does my neurological nonsense. And spending what little time I have at raging at those two?

How's that working out for you?

Thursday, December 17, 2015

Then and now

After many sessions of "cutting stuff loose," and more still to come, yesterday there was a moment of wonder...

A record... a VINYL RECORD that has to go on a turntable... was unearthed from the carefully stored record collection. All sorts of records are still there, but I found one that is very, very precious to me.

I'll futz with the color & such, but you get the idea. It's a recording made by the Yale Band in something like 1981. And on the record is a track from their performance of a transcription of Respighi's Church Windows. And on that very track is what may be one of the only if not THE only recording of me playing the BFO, as I used to refer to the Big F... Organ, in Woolsey Hall at Yale.
It was a life-changing performance. Absolutely everything changed that evening. Everything.

I'm having it digitized so I can share it, and I'll share it here when it's ready.

Am I attached to it? Hell yes. But this one time... it's kinda worth it.

It was fun, dammit!

The good part is that nowhere and never do I go into "Oh, I used to be so good at XYZ" and all the regrets left in shards for one to trip over. It was fun, it was amazing, it was unbelievably major, and ... it's over. But None of those things matter. If there's anything I do not need to be attached to, it's how now is not then. And of course, presuming that this makes "now" horrible. Actually, the moment then made now amazing.

And which of us need to live in the world of regret that now is different from then?

Then provided me exactly what was necessary to create now.

Being accessorized with MS was provided then, to create now. If my time with the concert band and the BFO, worked that way, shouldn't the MS Journey?

A very, very trusted friend once said "You needed to get MS."

So, then, this is our mission, not just for us MSers but for us humans...

Enjoy the amazing that is now. Because it is amazing, if you can only see it.

It's right in front of us. Should we not, then... enjoy it?

Sunday, December 13, 2015

Good place to start

Another interesting journey with that amazing whatever-it-is that we call "attachment."

I invited the son of a long-time friend of mine to raid my costume closet. I have (and as you might guess, now "had") a lot of great and marvelously interesting things to wear... Indian kurtas, tails in both black and grey, lots of Renaissance-Faire gear, some really obscure ties. And that's only the beginning... I wasn't a hoarder, but I was definitely a collector and user of fine costumes.

I told this young fellow that although us MSers are encouraged to "never say never," I had to be honest, that there was a mathematical truth to the non-zero probability that I would be wearing all these things again when I got out of the wheelchair, but it would take someone like Astrophysicist Tyson to calculate them.
What was most interesting, on the spiritual path, was what things I was absolutely NOT willing to give away. My opera cape, black with red lining, which I got in high school as a tribute/emulation of Virgil Fox. Notorious cape-wearing organist. My wooden tie (pine, with hinges). My transparent tie with a cow on a beach under a palm tree not on, but in it. My "Romeo jacket," a Ren-Faire classic. The trews that I had made.

I guess it's the ultimate attachment, to want to keep something and have it displayed at your own funeral... My wife offered to bury me in it, but I said that just toss me off the side of the ship or some such will be far cheaper and easier to deal with, but yes, please display my cape and my beloved K-Zildian cymbals at my service. Which at least I don't think about taking with me to the next world, Egyptian-Pharaoh style. At least for them, you paint stuff on the walls for them to get in the next life. Well, that's the vast majority of afterlife goodies.

But yes, I am still quite attached to glories of my past adventurous life.

Thus it also goes on the MS Journey. But often more subtly, maybe sneakily. I used to type 100 words a minute, which meant that when I wrote stuff, I didn't just write it, I "firehosed" the text. Lots and lots of text! Huzzah! Well, given how I [monstrous air-quotes] "type" nowadays, that ain't happening. And that bothers me. Oooh, write a book on my experience with MS, as some have suggested. Not gonna happen. "Just talk it in, edit it later, don't worry about typing," They say... It's not the way I think, having done massive writing on the computer for decades, and every author will concur that the key is not writing but rewriting, which takes typing. And here we are again.

Am I painting myself into a corner? Perhaps, but the typing problem is indeed the way of things, right now. The wheelchair is the way of things right now... things change. Not always in fun ways.

At the end, what am I left with? What is there to DO?

Tell the truth. Cop to your own issues... no need to justify anything, just tell the truth. It's horrible, it pisses you off, it's a hammer-blow to your heart, but speak the truth. At worst, you let the steam out of your head. And who needs to drag a grudge around? Life in a wheelchair is interesting enough as it is.

Yes, indeed... truth. Tell the truth, and tell it with love.

Good place to start, indeed.

Friday, December 11, 2015

Acceptance vs. cop to the truth

A superb discussion post-acupuncture yesterday; my acupuncturist and I were talking about the difference between denial and acceptance.

As it turns out, not counting the national pastime to which I have elevated denial, I don't seem to accept acceptance. I don't really know what it is, and it doesn't really mean anything to me.

But as I told her, what makes sense to me is an old, I think 1960's era term, "cop to." Sometimes, you gotta cop to the truth of whatever it is. But at the core, it's all about truth.

Speaking universal cosmic truth is most often out of my pay scale. But speaking the truth about my internal state... that's doable. Perhaps too doable. Sometimes not so much fun, but doable.

But an internal conversation about my relationship with [whatever] that centers around the truth of where I am in said relationship... that's what's important.

Simple things like "X makes me happy," "X hurts." On the bottom line... we are called to tell the truth.

I am (or so I've planned) hosting a friend's college-age son, who's about my pre-wheelchairified height, to raid my costume closet. There is at least one thing I'm not quite able to give up yet, but let's tell the truth here... There is a mathematically non-zero chance that I'll want to wear it again, but that number is very, very small. Very small. And so, the truth is that it stays in my closet to maintain the delusion of wearing it again, or it goes to someone else who then becomes happy.

And if stuff doesn't get chosen, it goes to someone else. Because overstuffed closet or sharing happiness, really, is that a choice?

That you might want to look at yourself in the mirror and justify its virtue?

Truth. Might as well try it, why not?

Thursday, December 10, 2015

No matter what size

A completely new adventure!

Caregiver extraordinare / wife found me a life coach whose area of expertise is musicians. I've had exactly one session and I'm already benefitting.

One way to sum up her coaching points is that when there's something that's in the way, or something that's in the "can't do it" stack, why not, oh heck, try something you CAN do. Doesn't matter what it is. Just do what CAN be done, and just leave behind that which you can't.

A very good lesson in, among other things, "pay attention." If I'm paying attention, I see what works. Who cares what doesn't? Ram Dass has often written, if you're putting so much thought into how things are "supposed to be," you'll never see things as they actually are.

And things are already better. I have been having successes! Not the monstrous ones I used to, but that was then, this is now, and they were nonetheless successes.

I'll take 'em, no matter what size.

Monday, December 7, 2015

Tradition continues

A new project today! Someone is coming by to chat about music with me... Business-y stuff. It's gonna be interesting... I have absolutely no idea what's going to happen. Just like, y'know, life.

I just sent some music (score and parts, for the performance of said music) to some folks in Tulsa, OK. A couple of days ago, I sent music (again, for performance) to these folks somewhere in Arizona. Great thing, this Internet!

Before being accessorized with a wheelchair, I had been an organist since... oh my, 1973. You can tell I'm a music guy first and a business guy second... I got the music ready and delivered before I go to the trouble of cranking out an invoice. You can really tell I'm not a business guy because I describe cranking out an invoice as a "trouble."

And another project, not as fun on paper, at least... gotta find substitute caregivers for time my wife needs to be somewhere else than within care-distance of me. I'm gonna go to my First Call Guy first, but we'll see where it goes.

Anything else worth reporting? Besides Tung Ting oolong (or "Dung Ding" as this firm transliterates it), which I heartily recommend for pretty much everyone... nope.

But the tradition continues...

No side effects!

Wednesday, December 2, 2015

What a way to start the day

What a great way to start off the day! A couple/three cups of matcha, then I use what little typing power I have to write to the mayor of Pasadena telling him to back off the cannabis-purveyor nonsense.

Apparently, the City wants to discuss removing permission for cannabis purveyors to work here in Pasadena. Not enough people are being "medically helped" by this "medical marijuana" nonsense, or something like that.

I told him that I have MS, I am confined to a wheelchair, cannabis significantly lowers my suffering... and what good does driving off the cannabis purveyors do for Pasadena? For anyone?

State of California says I can grow it in my back yard. But the city doesn't want to OK its sale.

Alas, I did have to say... from my point of view confined to a wheelchair, whoever thinks they are making things "better" are delusional. Drive the cannabis purveyors out of Pasadena, and I or my caregivers have to get it somewhere else. Which I can. And have. And will.

And thus spend no money on goods and services here in Pasadena. Great idea for the city, huh?

Perhaps we haven't seen all the bodies strewn on the streets by medical marijuana because of all the bodies covering the streets from being gay-married.

What a way to start the day.