Thursday, June 25, 2015

Where's the anger coming from

Some interesting discoveries about myself during my last acupuncturing... Not my Usual Guy, he's off doing Something, so I met a new care provider--who even treated me with a house call! Now, MS or not, when was the last time you had one of those?

But as I was telling her about my "MS experience" and how things were going now, she asked me about how well acupuncture was doing for me.

And that's when Anger came out. No, rage. I was under control enough to not actually roar and/or bellow, but I prefaced this by saying "There's no way I can express this loudly enough."

And then I looked her right in the eye, and said...

"Nothing helps. Nothing."

And yeah, I'm definitely pissed off. Definitely. I'm angrier than Lewis Black.
Nothing helps. Nothing.

The real question isn't "Why don't things help," but "What am I really mad at?" I'm not "mad at MS" or even "mad about MS" or "mad about having MS," it's that nothing works and all sorts of things that I have tried for all sorts of other reasons have been helped in very short order. I'm also hardly mad about "waiting for the cure" or "why isn't there a cure" or any of that sort of thing.

It's that I have been helped so often, so magically, so wonderfully, with so many other things. And now, here I am, and nothing helps.

Nothing. Helps. At all. And if anything does help with anything, it doesn't last. Ever.

(And to respond to the people who always told me "don't say can't," look... It's not about claiming ownership or difficulties or demanding that I stay disabled because I don't choose to look at it and express myself differently, but... You try driving this body around and tell me that I can when, in fact, I can't. Hello, bad wiring? Nerves that don't fire? Which will when I change the way I describe my experience of them? As I've often wanted to say, is it the "you" that you don't understand, or the "fuck" part?" How can I help you? Because you certainly ain't helping me, see above for the  "primary complaint," that nothing helps.)Yeah, my hands are cold even with gloves on, I'm not enjoying just sitting here and typing, I honestly don't know if I can deal with music stuff right now, and boy do I have plenty of it.

But as Jacob asked in Rick and Morty, "Where's the anger coming from?"
Well, that indeed is the question, isn't it?

Where's the anger coming from?

Wednesday, June 24, 2015

Had--no, enjoyed--an acupuncture house call yesterday.

I can never say how much I esteem, care for and about, yes love, my MD/acupunctrist. But... treated [scream] IN MY HOUSE without requiring an hour's drive plus an hour and a half drive back, and getting into and out of the car, and fighting with the bathroom at the doctor's office--every door in the place is wide enough for my wheelchair, but the bathroom is extremely hard to deal with, even for the able-bodied caregiver that was at my house yesterday. Gotta work on how people help me on and off the table, but it was a wonderful experience.

One of the main reasons she came to my house was that she lives under 10 minutes away from me, but her office is on a second or third floor with [scream] ZERO accommodation for the "differently abled," e.g. wheelchair-bound, and being dead-lifted up the stairs ain't gonna happen. My wife was absolutely brilliant at finding a place to set up the table, although after the weather cools down comin' on Autumn, we can do treatments in the back yard, surrounded by birds and flowers.

Which is, to quote Martha Stewart, a Good Thing.

I told her about the heart-warming things I watch on Steven Universe, about how the characters care for and about each other, who ardently love each other... and she told me she felt that warmth in her heart just hearing me talk about it.

MS or not, if you can't connect your caregiver with your heart, and they to yours... get another. You're wasting your time.

Us MSers, we don't really like "sensitivity," because it's pretty much unavoidable, in all its forms, but it is quite an amazing gift. In my last year as a teacher, many life-changing moments were catalyzed by sensitivity; my sensitivity to the student, and their sensitivity to their true, inner selves. But it really is a constant gift, a gift that will enrich my life as long as I'm in this human shell.

A perpetual, constantly renewing, gift. For something occasioned by a neurological disorder... definitely:

Not a bad gift.

Saturday, June 20, 2015

Makes you think of South Park

Took care of many useful and important things, yesterday. Fortunately, not among them were dealing with Obama's visit; his motorcade drove by the street that runs straight up to the Eagle Rock, not something I can see from my house but I could have seen the motorcade with about 30 seconds of pushing me along in a wheelchair, and with about 5 minutes work (thank you, wheelchair pusher) I could have been on the sidewalk along the route. I'm not hung up about seeing Obama, even just sitting in a car, but it would have been cool. Even more cool is that I did not go to my doctor's place yesterday, because the few truly nasty traffic snarl-ups were directly in the places that I have to go through to get to my doctor's office. "Of all the words of song or pen, the saddest are: It might have been" was not for my own set of yesterday's "it might have beens."

Spent some time chatting with a friend who's at a particularly challenging workplace, the classic "manager who mis-manages horribly" tragedy. People apparently leave her office with their head in their hands, all but in tears.

I found myself quoting Steven Universe to him: Sometimes, you gotta know when to bail.
I asked him, "What does she need?" Not "a two by four in the face," although as Marcus Cole said on Babylon 5, "You get more with a kind word and a two-by-four than just a kind word," but this poor person's problem may drill down to fear... and if so, perhaps all you can offer is compassion, the charm of the two-by-four notwithstanding.

But more importantly, to use the words of the Science of Mind church: I bless you and release you to your good. And more immediately, to work without ceasing to get a different job, which will put said poor person once and forever into the soft and fuzzy box labeled "Someone Else's Problem."

Other experiments: My buddy drove me around to some place where I could get my medical marijuana OK signed and sealed, and we took some time to sneak off to the local burger place. We would have gone to the local hot dog place, which does amazing work, but may not have much "inside" room for people like me in a wheelchair, and although it does have quite a beautiful little patio with tables and umbrellas and everything, and I've enjoyed lunch there before, but "charming outdoor seating" doesn't go far with heat-sensitive MSers and temps that on the day and time in question were in the high 90s, thank you Southern California.

But I was pulling at my "vape" device, charged with quality indica. It made the "being driven" around significantly easier to deal with, and when we pulled into the hamburger place itself, I was knocking on the door of "hungry," aided by a few extra puffs. Which never happens, especially after having been driven around all over the place, with a lot of time spent on rough and bumpy roads.

It really is quite amazing stuff. Pretty cool for something that just grows in the ground. There's a reason they call it "weed," because it is a ... weed, after all.

How long has humanity been treating itself with plants it just finds, growing happily and quietly?

And where are the piles of bodies found on every highway in the states that have decriminalized, even legalized it?

Perhaps we haven't found them because they are hidden by the piles of bodies created by gay marriage. Under the piles of hetero couples who have plunged to their deaths from high buildings, driven to take their own lives because their marriages were ruined, ruined, by all those gay people.

Makes you think of South Park.

Friday, June 19, 2015


Ah, the funny ideas we call "hopes for the day."

Maybe I'll work on music? Eh, probably won't happen, just typing this is problem enough.

It's quite possible that a friend of mine may take me out to Pasadena to get some paperwork taken care of. He has his own issues, but it looks like it might happen.


I did a piece of web-based business, wrote a note on Facebook on the topic of "why I ain't gonna be the President any time soon," checked the DWP because I still haven't figured out what their billing cycle it is, it sure isn't "once per month," it may be every six weeks or so but whatever it is I haven't figured it out yet, so I try once a week or so.

Hoping to connect my wife with yesterday's Steven Universe episode, it was both beautiful and tragically sad, something the Steven Universe team is very, very good at doing.
This is something that I want to find a solution for, a "work around" for... the whole "I don't think I want to leave the house, I want to just lie in bed" thing. It does really put one in face-to-face contact with "Now, exactly what is really important, here?" Yes it's true that I have certain physical sensations/limitations/problems/everything, and I'll often tell you (anyone) why I'm stuck at home and why I didn't go "off campus," but it's always a very clear choice between "get up" and "give up." And to make that choice, I need to be really honest with myself with the state I'm in and what will actually happen if I go off-campus. To be honest about the difference between "I think something might happen" and "It's possible, even probable, that something will happen" and "Yes, it's gonna happen, what are you gonna do about it because you can't stop it."

Now, that's an interesting thing the MS Highway seems to be asking of me... After having been presented with the need to deal with catheters, enemas, herbs that sometimes make me go diuretic which changes the way the whole "bladder thing" gets seen to, I am tasked--perhaps even gifted with the task--of one thing:


Wednesday, June 17, 2015

Right tool for the right job

Well, at least I'm sitting at my computer in the studio. Will I use it to do music?

Or will I give up and lie down?

Great. Autocorrect just cost me some time by suggesting a ludicrous correction to a mistyped four-letter word.

I don't think I feel like being "helped" by the computer. I definitely don't feel like providing excuses to the OS to offer "corrections."

This is not good. Just looking at the keyboard and then looking up at the screen is more difficult than usual this morning... takes more time, takes more time, AND is disorienting which is uncomfortable AND takes more time.

I only have so much to give. A bunch of it was just taken by mistyping "only" in the prior sentence.

Am I hung up on "time?" Am I bitter? Actually, no and no. What I am getting hung up on is being prevented from creating. Even if it's as humble as this little blog.

So, creative things I could do... continue working on this big piece for concert band and chorus, dig up and assemble what's needed to do some more CD releases--Lord, does anyone besides my 80-plus-year-old mother even use CDs? But I can get stuff onto iTunes, so a little of each covers more than  just one... I have a presentation to work on (just the thinking-about-it bits, right now, no cut-and-paste PowerPoint or any of that), I have some video-blogging stuff to contemplate, two different ones, neither MS related--and lots of people have told me I need to do an MS book.

Keeping an active mind is not a problem. Even simple things like "scrawling notes," however, are. Good heavens, my handwriting is so bad that I'm not sure I can even play tic-tac-toe without putting an eye out. Mine, or someone else's. My wife Karen has been very properly and kindly been after me to look into help-the-handicapped stuff for computers, which I guess I can do on my back in bed, but defining my challenges and using those definitions to search for things involves understanding what people think about such things because that affects the way they design, describe, and market them.

Looking for an Apple-compatible keyboard with "big-ass keys" doesn't usually get you anywhere useful.

Well, for once my hands aren't too cold to control well enough, so I'm gonna see if wife needs her Good Morning Matcha yet, snag a snack, why not--when you don't get hungry any more, if you feel the vaguest interest in eating anything, best eat whatever, anything, but promptly!

Also on today's "it's easy to do on your back" to-do list, figure out what I might send my own father, and my brother who is also most definitely a father, of 3 and 5-year-olds. They're not the "watch the NBA" kinda guys...perhaps a new Ram Dass book? Or some anime--always a god bet, if you know what to get. But no Naruto. Definitely no Naruto.
The right tool for the right job, y'know... right?

Sunday, June 14, 2015

What else is there to do

My hands are finally warm, this morning. Maybe I'll work on some music!

Or maybe I'll give up and lie down.

This has ben quite the struggle, recently. Not having the wherewithal to "do things" or "be productive" or do something, anything else other than lie in bed.

I mean, I find the YouTube "crash course" videos fun to listen to, and Lord knows I love watching Steven Universe, but right now they're basically only running re-runs, and some shows are only so interesting, no matter how many times I've seen them.
Frybo. Again. Really.

But just "biting the bullet" and launching the application and poking at the music... that ain't happening, right now. Maybe I'll toodle off to see if my wife is awake and wanting her morning matcha, maybe I really will poke at the musicand see what happens, maybe I'll just lie down.

But no Frybo. That won't help. Which is pretty much the SOP for "life with MS," at least as I've been experiencing it.

I haven't really connected to the two most important words in one's life with MS, a constant and very very necessary reminder.

Keep trying.

Don't give up. Keep trying. Even a little bit.

I'm not sure exactly what that gets me, but...

What else is there to do? MS or not...

Friday, June 12, 2015

No side effects

Days are very flat. I spend them in bed. I have, in the past, sat at the computer and done all sorts of stuff. Nowadays... I hit the wall pretty fast, and then I give up.

A day or so ago, I read this publication by some MS Society that talked about bladder and bowel issues. The "bladder issue" talked about all these things one could try, like surgery? Wow, doesn't that sound like a great idea... an example of what not to do. At least, for me not to do, I can't speak of or about the people who make that choice, because I know nothing of them or their experience.

The "bowel issue" said that losing ability to walk, bowel issues, and bladder issues, all travel around together as a team, I guess, but eventually you're gonna "get" to deal with all three.

I had a conversation yesterday with a student-turned-friend who is working on some video stuff, and wanted to interview me about my experience with medical marijuana as an MS treatment. Being the only treatment I've tried that actually dips into "makes me feel better," I was happy to do the interview and will share it when it has been posted.

Right now, as I'm chatting with you, I think about all the things that I could do, like fiddle with my web site, continue thinking about how I need to reorganize it, make some notes, maybe even create some music!

Or I'm gonna go lie down, and give up for today.

This is an interesting gift of MS... coming face to face with choices. I can choose to stay up, face planted in the wall and all, or I can do something else, yeah my "doing stuff" issues come to the fore, but at some point, there's a choice. Sitting at the computer is maybe not an option, but actively recovering rather than just giving up and lying there... that's a choice. One might say that I'm choosing to watch Cartoon Network reruns, but since I choose the ones that make me happy, that's very different from just staring at commercials or shows I don't like; I chose joy, rather than simply occupation. A far better use of my few moments in this issue-laden mortal shell, to select moments of joy, even if they're just stories, but they're stories of love and caring for one another... that's very different.

So, even if I do bail on computer stuff, I can still bring joy. I can make good-morning matcha for my wife. Feed the cat. Rub the cat, if that's what she wants. Doing "contemplating" stuff while lying in bed is pretty much a non-issue, as long as I capture what's worth being kept. Maybe use this "phone" thing to talk to parents and friends, even.

So, that's what's on deck for today. Has nothing to do with "getting things done," but why not start and end with... joy?

Again... a perfect prescription!

No side effects.

Monday, June 8, 2015

Hope springs eternal.

Some amazing things, last week. I'm sorry to not have kept up a little more regularly, but the typing becoming harder kinda gets in the way of well, typing. My little iPhone will do speech-to-text, I suppose I should see if I can do that on my big desktop machine.

Best thing that happened is a visit from a friend of mine from Connecticut. He is in LA to do some Big Thing, but he had some time to stop by my place and chat. I showed him the score I'm working on, we talked music and the crappy state of audio instrumental samples--many people have created piles of "this'll be just fine" turnkeys, which are not only not fine but worse than what used to be pretty much standard.

It was really wonderful to spend time with a "music brother," even if I had really badly hit the wall and otherwise would have loved to have been in bed. I played him some of my music, in the home studio which has all sorts of sound-friendly acoustical stuff in it, and hearing both recorded and synthesized stuff in there is actually pretty fun, even during those wish-I-were-in-bed hours.

Well, that's life and age and such. Things change and not always for the better, but at least with the whole "mortality" thing, offering "oh don't think about that old stuff, this new thing will be JUST FINE" doesn't really work.

Kinda like someone telling you "oh that doesn't hurt." Oh, really...

At least my acupuncturist admits that CV-1 or Heart Protector 9 hurt. Not long, but it'll be worth it.

I wish I could take that attitude with my huge-air-quotes "typing."

Won't take long (well, actually, it does, it takes way too long with all the poking and mis-poking and mouse-dropping and keyboard-in-the-lap dropping and correcting the mistakes that all those cause, which requires its own time and often makes things run longer because all sorts of new errors get introduced) but at the end, it'll be worth it.

Gotta remind myself of that, here in my current MS-ridden state.

Hang in there and it'll turn out to have been worth the pain.

Hope springs eternal.