Saturday, May 30, 2015

Make it good

Man, what a week it has been.

Oh, where to start? Oh, I know: A couple of days ago, I hit the floor again. My legs just gave out while I was trying to transfer from the commode back to the wheelchair, and thankfully I was able to moderate the collapse, so there was no injury. And apparently there was also no emotional injury, either; it was an intense moment, but I never went into self pity or anguish or anything like that... I just repeated a mantra, looked around to see if there was a way to pull myself up, or for that matter, anywhere (there wasn't), got myself comfortable as best I could, and just enjoyed being there.

I didn't even call for help. My wife was, I knew, finishing up her shower, she wasn't gonna be able to hear me anyway, I figured that she'd be back to the bedroom in reasonably quick time, which she did, so I figured why make her worry and scream for "help!", she'd be there soon enough anyway, why not just meditate and enjoy being on the ground?

Well, wife did indeed show up in a very short time, she was puzzled that I never screamed for help but once she got there, we called a neighbor, and in very short order I was gently picked up off the floor (it took both of them, definitely superior in every way to the "only one person picks you up" method), gently returned to my wheelchair. Where I had to just sit, for several minutes, to just come back to calm and comfortable.

But on balance, for a "hit the floor" adventure, it was pretty good.

Yesterday, I was taken to a restaurant that, in earlier days, was a monthly if not sometimes weekly place to visit; a very beloved place indeed. And vegan, even! A vegan sushi bar, who'd have thought it? Even were met by some Yale friends, both of whom participated in Karen and my wedding, so it was indeed a nice dinner.

On paper, at least, it was very had to deal with the "going there," especially hard to deal with the whole "being driven in a car" thing, some of the roads required are not exactly mirror-smooth, to say the least. I didn't get "carsick" as such, but there were several moments of "better hang onto that cup, just in case there's a carsick explosion." No worse than extra-enthusiastic burping, fortunately, and even more fortunately, by the time we arrived at the restaurant everything had gone back to "just fine," and I was actually even able to eat something once we got there. Not a lot, but at least something, and that was indeed a triumph. And the food's about as healthy as it comes, which is also a triumph in the "keep Robert fed" battle.

In neither event, fortunately I never went down the road of "Does this mean that some other thing [insert "thing" here] is... over?" Big shudder... Well, as any of us who travel the "life" highway have found, Things Change, sometimes, and that's all there is to it. The "being driven somewhere" thing, I've got to come up with some sort of way to make that easier to withstand. I have for years and years enjoyed simply going places, taking "gastronautical" adventures for foods of other countries, which are very easy to find here southern California--what do you want, Little Tokyo? Little Armenia? Little Ethiopia? Little India? Cantonese, Szechuan, Taiwanese, and oh Lord the Taiwanese tea shops... The list just keeps going on and on and on.

I used to drive us, even myself, to such places. Well, driving myself has been gone for at least two years, but nowadays, even being taken is troublesome.

I really don't know precisely how this is going to pan out.

Just typing this, this morning, is something I used to do easily and even gladly, this "typing" thing. Don't think I've got more than a few sentences left...

Well, we don't have much time here, on this little planet; none of us do.

So, I guess, what time you have...

Make it good.

Wednesday, May 27, 2015

I give up

It has been a couple/few days since I checked in. Using the computer is hard, my hands don't feel like cooperating with my requests to type.

Took four tries to hit the letter "c" and push the key down enough to input the letter.

I managed to de-fubar my computer, all it took was a new keyboard. WTF, Apple? And keyboard people? Please play nicely together....

With keyboard back, I tried to go back to music writing! Got some stuff done! Now, it took me SIX tries to type some word in, I kept hitting completely wrong letters, one after another.

I don't know how long I'll keep doing this. I'm close to giving up.

Considering how many tries it took simply to type "give up," because I kept hitting wrong letters one after another, over and over...

Yeah. I give up.

I haven't really been giving up, the way I do today, until recently. I could, I suppose, go into details, but... Not today. Might be different tomorrow, but right now...

I give up.

(Don't worry, the worst I'll do is lie down and watch my iPad play cartoons or something, but given how many weeks, months? I haven't been able to do music stuff, but now my computer can, but I can't...

That sucks. And I don't even have the wherewithal to come up with a cartoon that encapsulates giving up.

Well, just one:

Friday, May 22, 2015

I'm done

Ah, Los Angeles. Many things can be said about it, but one of them is not "nice and warm," at least nowadays. We're nearly to June, and mornings get to 60 degrees if we're lucky. Not quite the "get an ice vest to keep cool" as in earlier times.

But also, earlier times are indeed earlier. They're not now. Thank goodness I have something more specific to this weather: long-sleeved shirts, sweaters, and a blanket to put over my legs.

A friend of mine came sort-of by to visit; driving all over LA wasn't in the cards, so it was go there or don't visit, Alas, I didn't, this person is very very dear to my heart, I'm sorry I missed the visit, but with last night's state, it wasn't in the cards for me, either.

This person has, let's call them "issues," with particular people; the specifics aren't relevant to this discussion, and you should be glad I'm not sharing them, because they're not so good...

This predicament reminds me of the End Times in my last workplace. Many things could be said, but one of them is about the value of leaving when it's time; overstaying is a bad idea. The devil we know is always preferred to the devil we don't, but as I've found time and again, usually for painful reasons,  staying when you're supposed to bail out ends much more tragically than one hopes, or (certainly in my case) even imagines.

As Stephen Universe clearly told Pearl, "You've just got to know when to bail."
Even though it can be sad. Which, in my experience, it often is.

"Bailing" isn't available to us MSers, at least in tossing the MS out the window and "moving on," as Stephen Colbert used to say.

But MS doesn't muddle our consciousness the same it does our... well, whatever it is that it has karked up for each of us. So for us, "bail" is about old ways of thinking. Noticing that we're creating problems for ourselves. Letting the devil we know go before the devil we don't know introduces himself... which usually turn out badly. Sometimes very badly.
It's kinda like going into the dentist and crossing the Rubicon, telling them "Yeah, it's time to pull that tooth" or "Go ahead and drill" or, well, you can imagine and probably have already had this very experience, or one effectively the same.

And it's surprisingly easy... two simple words are all that's needed:

I'm done.

Or, as a member of AA told me that he says if someone offers him alcohol,

I think I've had enough.

Certainly, those who think (quite correctly) that I need to change something, can speak of it all they want, but everything changes when my mind changes... Everything changes, everything changes, when you come to a personal realization that it's time to cross the Rubicon and own one simple truth:

I'm done.

Wednesday, May 20, 2015


When I left the acupuncturist's on Monday, my hands were wonderfully warm. Would probably have made typing more pleasant, more correct, more doable! And maybe even more fun!

Yeah, that didn't last a day. Hands are cold again now; I keep trying to warm them, which feels good when I do try to warm them, but they stay cold.

This MS thing is rather a drag.

To put it politely.

Which is probably one of the only times it has or will be referred to "politely."

If we really let fly with how we really feel about it... as Dr. Seuss once said, oh the places you'll go!
Probably not what the good doctor was thinking about. US MSers probably have something... different to be the place where we want to go.
I am scheduled to go see a friend from Yale, a 1982 classmate, who's visiting from Somewhere Far Away (hard to keep track of where she is, she's a continent hopper); it entails quite the drive, surprising that I foresee it with such trepidation. I used to go the distance, the route, between there and home daily. It ain't that easy, any more, simply to be in a car.

My music was played at Yale's 314th commencement. It's going to be played at a local private high-school's commencement, a gig I played for FORTY YEARS and can't any more. Organs were not intended to be played by people in wheelchairs. The whole "pedal" thing, y'know.

I would have written new music for the class who's graduating that day, because they were my last class there and we had time after glorious time in the Anime Club, watching stuff that was within the category of "literature"--A favorite, Gankutsuo, is modeled after the Dumas' Count of Monte Christo.
No Naruto. Never Naruto. Gag...

Well, I've hit the wall. I'm going to spend a few moments trying to figure out how I can get the OS on my computer to cooperate with everything that I've been using to write music for years, which was put "off the table" by the OS getting "better" and thus, chock full of "improvements."

I hope it's something as simple as "plug the USB cable into another jack on the computer" rather than spending two or three days installing a new (actually old, several releases old) version of the OS. Friend of mine has to do this all the time, he's working with people who are using very specific versions of very specific software, which can only be run by ver specific versions of the OS. Makes you long for the simplicity of Windows XP.

But, no need to go down THAT road this morning, I'm dealing with new kinds of spasticity that makes my legs twitch and kick, usually into empty space, while I've got something really really spoilable in my lap.

And there it goes, as I sit and type. I got enough "typing problems" without knocking the mouse and the keyboard off my lap and one the floor.

So I'm gonna check out now, while my legs are sort of kind of under control.

Again, the limitations of the English language... almost nothing below my waist is controllable, much less "under control." Clearly, us MSers need a new language to work with.

A change in consciousness that is evidenced by the new language. Interesting, cool, even.

If it works. Well, changing consciousness definitely changes everything, but a new language would certainly be...


Tuesday, May 19, 2015

You get the idea

Wheeled into the computer room. All set to blog away! Except now that I'm here, my hands have gone wicked cold and all I want to do is go back to bed. And not type, because at the moment, it's taking way, way too long and I keep typing badly, which doesn't make me want to keep typing.

Wow... I just put my hands on my face, and they feel as cold as they would if I had been using them to burrow through shaved ice for an hour.

A good acupuncturing yesterday. Got a point that is named something like "Path of happiness..." well, more happiness, I'll certainly take. But doc at one point told me, about something I said to him, "That's self pity."

Honestly, I don't know what that is. Really, I don't. Love, hate, impatience, anger, closed-heartedness, even self-delusion, I understand. Pity, I kind of understand, but I don't know how self-pity applies in this situation.

"Oh, look at my woe," is self-pity, I guess, but that was not as far as I could tell where I was. My legs get knotted up sometimes, because they can't move particularly well, and sometimes when I'm trying to move my legs for any reason, they twist and knot up and, being that I can't move them, there's nothing to do except keep trying, call for help, or give up and live with it; the latter of which doesn't work for me, because somehow I completely wig out when my legs lock and maybe my mind/whatever just freaks out and gets stuck. Knotted and immovable, just like my legs.

I don't get into a space of "Oh, my poor legs, my poor life, so cruel now!" Much simpler, really; basically, I just go into the world of "Oh, shit!" And it pretty much ends there, because my brain locks and all I can do is say "I'm stuck." Which I don't know how to map to "self pity."

Now: Having one's brain lock up on something that's completely uncontrollable and really, truthfully, without any moral, intellectual, spiritual... anything, they're just locked and uncomfortable/inconvenient. But hardly worthy of completely locking up and wigging out.

As Ram Dass says, I've got some work to do there. He and many of my friends use the word "witness" to speak of nonjudgmental observation. "Why yes, I'm doing that." And it ends there... you do whatever you do, and you just quietly witness it.

As Rick of Rick and Morty often says, "Don't judge."
So that's my work for today, and the next, and the next, and ... you get the idea.  Witnessing practice is easy, just witness things as they happen; the trick is to stay out of my own way and catch myself when, as Dennis Leary sings so eloquently, I'm an asshole.

Clever cartoon image commenting on that particular song, not supplied... Not necessary.

You already get the idea.

Sunday, May 17, 2015

Look up, don't give up

A dark place, I'm in. I am far from "time to end it all" and the usual nastiness that such invokes, but I think I'm just... done.

I was so proud of how I sat down to type this to you. Fingers barely work, and what passes for typing has error after error after... I usually catch most of those, but I don't always. I had always expected that writing words and music would always be available, who needs to be out of a wheelchair to do that? Nice idea, but it doesn't always work.

I need to research, probably with help from the MS Society, some assistive aids for the computer--keyboard, mouse, speech-to-text stuff, which my phone can do but not always well, which means I need to expend more labor to use the labor-saving software.

Still working on the music-writing issues. I have some "is the lens cap on" things to check, which I can no longer see to myself because I can't get out of the wheelchair to fight with cables, but I may be able to get Wife to give it a try. But mucking about with hardware and a truculent operation system, I hardly regard as "therapy."

I am cold cold cold, constantly. My legs, usually only and foremost my right leg, have moved into thank God not "constant," but "regular" pain. Right leg especially goes spastic and kicks; I can erase both of those with the right varietal of medical marijuana--it has to be the correct variety, I have not that much interest in "just getting high," but use the right kind and POOF pain goes away and stays away, for quite a while. Pain comes back, have another hit. Ah, if the standard Western drugs were only so good; I got one in the hospital that was supposed to kill pain and spasticity, which it kinda did, but not at all well, and it took too long to kick in and gave up too soon and the bottle said no, I had to wait in spasticity and pain for several hours before trying again, which would do me no good then as well as now.

Or I can smoke some weed and I'm set for hours.

Yeah, like I'm going to ask for the Western meds because they're "better."

I don't think so.
And I'm hitting the wall; gotta check a couple of things and then back to bed. My hands are so very, very cold... I rinse them in nice warm water, hands feel great, I dry them off, and try to type, and... they're cold again. Too cold to type.

There are too many handicap-helping things in the world. A better choice is to look them up rather than give up.

Look up, don't give up.

Works well for many situations, no?

Saturday, May 16, 2015

Deal with it

The end of an era. Happens a lot to us, um, humans... Things change, says the guy in a wheelchair who used to be an organist (can't even get on and stay on the bench, nowadays).

Yesterday, I sold my truck; it has been a very good friend since something like 1996. Almost 20 years, I guess. Got it hand-control-ified, new transmission, new engine. Worked like a dream.

It's still in the driveway, but it's gone when its new owner picks it up. Perhaps I'll snag a pic before he does.

The lesson behind this is that over a year ago, its time had come; I probably could have operated it, but there was no way I could get into it. Before I got into my current state, I could heave the wheelchair into the bed of the truck, "wall walk" (is that "truck walk?" same idea) to the cab, get in, and go. I made many a trip to Ten Ren in the day, but at the end, I was having to have their own staff help me out to my car, because I couldn't deal with the stuff I had specifically gone to Ten Ren to get.

Now, here's the real bottom line: I still have the truck in my driveway, I had even owned it until mid-day yesterday, but neither of those things would have been true if I had dealt with what was going on at the time, which is still going on right now. I'm fading; my herbalist told me that in Chinese medicine, MS is called a "withering disease," because the people who have it, wither.

Yup, that's me. Withering.

The real challenge we face is speaking the truth of what's going on now to what looks like is gonna happen whether we will or nil, without proclaiming, claiming, disability.

I was always really torqued off by the physical therapists who thumped the table and very proudly said "Never say can't!"

Well, dude, there's a reason I'm in a wheelchair, because at the moment, I can't walk. Whether you don't like me saying that does not effect not being able to walk. I didn't say "I'll never walk again," but the truth is "TODAY, I can't walk" whether you like "Can't" or not.

We disability-encroached-upon MSers, we gotta deal with the whole "can't" thing as it comes upon us. For example, I'm in the Cath Club right now; pretty much everyone understands the value of prompt urination, but I don't empty so well any more (not counting the whole "spastic bladder" thing)  and as everyone knows, "I want to go to the bathroom NOW but I'll deal with it later, maybe" is a story that doesn't end at all well. As a fellow Cath Clubber said, I'm just backing it up into my kidneys. Which are not really built for such things.

But the lesson of saying farewell to my little truck has been, basically, deal with it. You may or may not have to do something, but if nothing else...

Deal with it.

Friday, May 15, 2015

A nice place to start

Just a quick check-in.

It's actually raining here in Pasadena (CA). From time to time, at least. Lightning and thunder and everything, last night. Definitely cold cold cold.

Took all of this morning's pills (yum, not), made myself breakfast.

Stuck my hands under warm water to make typing easier. Warmth lasted a couple of minutes, maybe. Now, I'm back to "barely able to type." Typing crazily brings me to an Unhappy Place; I've definitely got some work to do on my attitude, because I have no idea how to make my hands work better. Oh well. Back to bed, in a very, very few moments.

My task for today:

Be here now. Sure, I may need to do business-y things like see if a bill hasn't been paid yet, gonna switch pillows to make sitting up in bed easier. Otherwise, it's a simple prescription.

Be here now.

A good place for any of us to start.

Thursday, May 14, 2015

Ain't life amazing

A medical metaphor.

I have, as any who follow this space have read, issues (the polite term) with B-san as I used to call him, with Alan as I call him today, my bladder.
Nothin goopy to follow, and anything medical I share comes straight from my MDs rather than (shudder) Google's bounty of ... helpfulness.

So apparently I have this UTI. Both my MD/neurologist-turned-acupuncturist and my urologist tell me that UTIs wreak havoc on MS. UTIs are problematic anyway, add MS and things just go all wack.

So, they're gonna give me some antibiotic; my regular MD tells me that the prescribing person needs to know exactly what bug is UTI-ing you, and that's how they pick the antibiotic. If you're allergic to something, TELL THEM IN ADVANCE so they don't just reach for what you're allergic to. My Guy told me that some of the common antibiotics patients don't like, but his back-pocket everyone-usually-likes-it antibiotic turns out to be just the thing to get rid of my UTI, so later today (I hope) I'll be giving it a go.

Now, of course I could drone on about how different the world would be if there was a test for MS and the exact wrong thing was located and pop a few pills and ta da! All fixed!

Hell, if we're imagining how wonderful things would be, I'd like a monkey's paw to work miracles with. Ah, what three wishes would I choose?
Probably cause more problems than I expect, so we'll deal with that when I get one.

Anyway, the metaphor. The UTI is caused by some bug or other that just needs to leave your UT. It's very clear, just get rid of that and everything will change. To what? Who can say? But "removing wrong" is definitely a fine course of treatment.

For life.

How much karma, how many delusions, how much that is simply unforgiven, is karking up the spiritual plumbing and need to be released?

Including forgiving yourself? Doesn't matter what for, but there will be something very specific that will treat this and allow you to "pass it" to a not-inside-you destination.

Personally, if I could do so, I'd ask to get off the bladder-as-metaphor curve here on the MS Highway, but deal with what you gotta deal with here and now, that's pretty much the only choice I have.

Or has anyone. Or anything. Anything living, that is.

Ain't life amazing?

Wednesday, May 13, 2015

A noble gift

Neckties and noble truths.

I have in a pile--and let's be honest with each other, everyone has piles of something, somewhere--and in my closet I have more. A lot more. A lot more.

Time was, I'd wear them all the time. My job required "grownup clothes," the most conspicuous item being a tie. For which you got upbraided for not wearing. I used to go to the Magic Castle all the time, and it likewise requires grownup clothes with ties and such, for evening wear (evening being most of the time that it's open).

I don't wear them anymore. I don't wear grownup clothes any more. I don't go to the Magic Castle any more; being a hundred-year-old manor, it sure ain't ADA.
I was pondering what I might do with said ties... Maybe give them to my nephew, but he's only 5 so it'll be a while before he needs them. Maybe give them (or at least some of them) to the son of a friend of mine from Yale; this lad used to do things like dress up as Dr. Who (the most recent ones) or Stephen Colbert, so I think he'll like costume stuff. I have other costume stuff that'd he might like, clearing out the costume closet is for another day. Another project. Not this one.

But of course, I don't want to give them all away. The Jerry Garcia-designed purple tie. The wooden one, which I used to wear regularly to the Magic Castle. The didn't care what the tie was, as long as you were wearing one. Same with the hollow plastic one which contained a cow standing on a beach. Sorry I can't get a picture for you, but it's cute and funny. And c'mon, you're forced to wear a tie, so the one you wear has a cow standing under a palm tree on a beach. F--k with me and I'll f--k with you; not a "noble" truth, but one that gets invoked when I get pushed to hard. Maybe I'll keep a couple of others, the white tie to go with the black shirt, something somber for funerals (other people's, thanks for asking) and maybe one that I "borrowed" ("liberated") from my own dad, who also has lots and lots of them.

"Minus two or three," he says with a grin.

And the plaid one, the district tartan from my maternal grandfather's region of Scotland. My brother has a kilt in the "hunting" version, which is green and orange and brown and such, a really nice design for him, but the tartan makers from whom I got this tie said they'd make a woman's skirt but they would not make a kilt out of it; even by Scot's "ugly tartan" standards, this one absolutely reeks, as though it might have been designed by Red-State Americans to celebrate their homeland but still, red white and blue! (Gakk...)
And here we come to the Noble Truths; specifically, impermanence and attachment.

Us MSers deal 24/7 with "Things have become... different, now," and for anyone who doesn't really really know that the world is impermanent, look at the clothes that a child used to fit in, things you yourself used to wear, for people like me the wheelchair you've now been relocated to, the car you can no longer drive, lots and lots of "impermanence" things. Just go outside and look at plants, and you'll see that things change. All the time. Nothing is permanent. Nothing.

And, attachment? I can't bring myself to let go of a necktie. Now, let's each of us think about things we're "stuck on," or "stuck to," or that we work very hard to ensure that they stick to us... Compare those to a necktie.

You--anyone-- who are not willing to give up rage, fussing, delusions of all kinds into which a lot of work may be put. Not willing to give it up. Well, that's attachment!

I'll admit, I sometimes like being full-on "taken care of," I like to do the things I want to do and I'm attached to simply being able to do them, and things like misbehaving machinery (computer problems), hands that can't type well or even use a mouse, being stopped from creating music hurt. Because, I guess, I'm attached.

"Acceptance" sometimes rankles as a word. So, I'm supposed to not walk and give it up? I can't drive, I give up missing all the things I used to do when I could?

And somehow, I've always found that hard... the "does that mean I have to give up?" thing. As Ram Dass says, if you put all your effort into thinking about how things are "supposed to be," you'll never see how they actually are.

So what am I supposed to do? Ram Dass says his guru told him to love God and tell the truth. A simple statement of truth may be all that's called for...

Today, I'm not driving. Today, I'm in a wheelchair. Today, I'm not typing well.

The MS Medico's would say, that's ok (I think they'd say that, not that I care) because I'm not claiming and declaring the permanence of disability. And I'm not really saying ... anything, besides what's there anyway. Today. Here and now.

Hard to not "accept" being in a wheelchair when you can't just get up and walk away. Although my doctor tells me he once had an MS patient in a wheelchair for 25 years who one day, got up, and walked out of the hospital.

MS is impermanent. People that I know have actually seen that truth. And for any of us MSers, wouldn't that be a noble truth?

And which among us MSers is willing to fight for our own disability, the way we're so often willing to fight for our many other attachments?

Not me. Well, as far as the disability goes... I'm working on the other bits that are still with me.

Does that make the impermanence of MS into a noble...


Tuesday, May 12, 2015

All you can give...

I'm sorry I have so little news; my hands are not working with the keyboard so good, pretty much barely at all... this much is about all I can do.

A friend calls me yesterday. Asks me how I'm doing, do I have any interest in working again?

I have interest in not being in pain. I have interest in being able to interact with the world through my computer. I have interest in supporting my wife, who supports me marvelously. Who is [long string of expletives]-ing amazing. Go hear hear voice at You may hear her on a video game you already own, who knows?

The only one of those I can do anything about is the latter. And I can't do much of that besides send her love.

And if that's all you can do, if that's all you can give...

Then, go for it.


Sunday, May 10, 2015

Gifts come in many ways

Happy Mother's Day to those who have earned it, through hard labor and love upon labor and love.

When I was an organist for the Episcopalians, this day was referred to as one of the "Hallmark holidays," not counted in the days we actually cared about, liturgically at least.

I sent some e-mail, I'll probably do some bit of "business stuff," making sure bills are paid and such. When my wife gets up, I'll make her some tea--she loves her morning matcha, it's good for her--for both of us, both as a gift and as a beverage.

My biggest concern: Sneezing or coughing or spasm-ing or whatever, sending up my precious (and expensive) tea powder into a cloud. Which is not good.
And no, I don't do it the way it's pictured above, which is wrong wrong wrong, but you get the idea of what might happen to that nice green power it you send it into the air. As Pops of Regular Show would say, "Bad show!"

Maybe today while I'm resting in bed, I'll watch some YouTube of some particular thing that usually needs help (more on that in another discussion) and maybe identify "Ah... That's where they're going wrong!" and do some thinking. Which works lying or sitting. Usually.

Call my parents, with my Mom a Happy Mother's Day, which is I suppose especially happy because the tropical storm near where she lives in South Carolina isn't about to come to shore at her.

Sometimes, gifts come in the most amazing ways.

How are you being gifted, today?

Friday, May 8, 2015

Hard enough for anyone

Art imitates life imitates art imitates life, it seems.

On Salon this morning, I read a discussion about Black Widow in the new Avengers movie, and one sentence immediately leapt to my attention:

"We assume that bodies are standard issue, that they’ll do whatever we ask of them, whenever we ask it. With any complication or miscommunication between what we want and what we get, there is a profound sense of sabotage..." Libby Hill, Salon on-line magazine. 

The full article will give you context and has zero to do with MS, but assuming our bodies are standard issue, except they're not and never were, but we do often look for something/someone to yell at.

Which is made more complicated by MS not really existing, so there's not really anything to yell at. At least with Ebola you can sneer at a virus; people who practice Oriental medicine regard MS as "the name you Westerners give your symptoms."

Last night, I thought it would be a good idea to get some "idea stubs" recorded, a computer version of "get stuff on paper" but since my handwriting nowadays is nearly unusable, in both the reading and the creation of the writing, it's computer or nothing. Except this morning's "tying" (monster air-cools there) and the seemingly unraisable temperature of my hands from their cold and unworkable state is making me want to just bail. 

Which leaves the little stuff that I thought it would be "good for me to do" undone. Not what I had hoped for last night.

No, I'm gonna quit this and see what the nearly-19-year-old cat is squalling about in the next room. I can't focus on much, especially when I'm trying to read, the state of which is nearly at the air-quotes "read" level, but I can at least see if the cat's dish is empty. Which it usually isn't, but she surprises me sometimes.

Wife is mooing at the cat. Cat is squalling at God knows what.

Time to go.

Our problems should all be so good, eh?

Figure out what the cat wants.

That's hard enough for anyone.

Thursday, May 7, 2015

Six simple words

A guess, and a gift.

Here's my guess. About an analog to MS in the non-weirdo-neuro world. Even MDs think nerves are weird, the Chinese millennia ago referred to the brain as a "curious organ." It has always been, and probably always will be, essentially a mystery.

But anyway... The analog is: Migraines. My MD calls them "allopathic," which is the fancy way of saying "we have no idea why they happen." People who have them know what sets them off or helps them live through it, but they're still a mystery.

My poor wife was migrained horribly yesterday. The day before was a day of glory and triumph, she did Really Cool Thing with Really Cool People on the  Voice Actor Road, and it was as nice as nice gets. On Migraine Day, she was toast.
What often helps--matcha, chiropractic treatment, massage, a few other things that usually work--none of them did. She spent the day in bed with the blankets over her head. Thank goodness that the day ended, the migraine went away, and she was happy and sunny again. Today, she is totally happy, and has gone off to a Women's Success Circle which she finds very supportive and inevitably makes her feel better in as many ways as "better" can feel.

And here's my guess: Such is the say of relapsing-remitting MS. Which I don't have, I have the "it only gets worse, and keeps getting worse, it never gets any kind of better ever" kind of MS. Oh well... anyway, things are bad and there's nothing to do about them and everything you try fails and eventually it just goes away. If you're lucky.

But if I'm right, this may be a way for us MSers to explain our road to non-MSers quickly, and more importantly, gently, compassionately. Really, who wants to hear details about what actually has gone south in our daily lives? Even among ourselves, MSers who know all too well what it means to us, and people who care about our adventures on the MS Highway, I use cartoons to talk about Alan, B-san, Mr. Bladder, without going into details about exactly how my adventures in the Cath Club go.
I have not found a suitable cartoon to illustrate my other excretory adventures, and I'm pretty sure that you are too, so as Steven Colbert used to say, moving on...

But now, the gift.

Speaking now for MSers like me, or pretty much anyone else like me, who is in the gentle administrations of a loving caregiver, has very little to give to one's caregiver who needs care given to them. But the gift I have, the gift we all have, is... compassion.

People as august as the Dalai Lama have spoken extensively on compassion, but it is expressed simply. I do the best I can to not need my wife to shift into caregiver mode; I feed myself, I keep the cat fed and happy as best I can (which, as those of you who are Cat People know, is not as easy as it sounds, but we do our best, being only human), make as little noise as possible so if she's asleep at least she stays that way as long as she needs to (which was all day, yesterday), nothing is said about anything besides "How are you?" and "I love you."

Six small words may be the greatest gift we can give to anyone.

"How are you?" "I love you."

And this is definitely a gift MS has given to me... to find and live within a state where my own physical nonsense does not get in the way of compassion, of generosity, of love.

Simple words, and despite what seems to be afflicting people in the news nowadays, very simply done. Many people use the catch-phrase "let go and let God," and I don't have as sound-bite-y a saying, but...

Get out of the way and let God do the work you can't. God's better at it than you are, anyway, being God and all. And to start, how about those...

Six simple words.

Tuesday, May 5, 2015

The right time to bail

Every day starts with a plan. Question asked: What's most important to be accomplished in the morning, while my hands work best for typing & such....

Today, place Mother's Day order, do this (what you're reading now), send another e-note. Later today, call American Express and see if my card's OK, because a friend of mine who's supplying my website has had a problem applying charges, so I gotta see if it's stuck at their end or his. Have some more food, what I had for "breakfast" may not have been enough.

Southern California, weatherwise, is wack. It was a cold winter. Then a too-hot spring. It seems to be winter again. Today. Weather Channel app says it'll be warm again, RSN (real soon now), but really really really it will, soon. Really.

Really. We'll see what happens when said warmth arrives. IF said warmth arrives.
Thoughts on "retire"... a word I have both familiarity with and apparently an objection to... when I use it about myself, that is.

When I went to the educator's conference in Texas, I had a name tag that said "RETIRED." In large, easy to read type. Well, I knew I was "the composer," of a piece performed by an outstanding All-state choir, but I never really settled with "retired." Because I felt like that verb was used in a very transitive sense... I felt at the time that I had been retired. Or perhaps, just to get you to feel it better, I got retired AT. Yeah, I definitely went along with it, in no small part to make the administrator's lives easier, said administrators having their own issues with my dissonances with The Enterprise, and Who Said What and Who Did What are officially off the table for today's discussion.

But I had always envisioned retirement as a triumph. Like a graduation; I did my work, I got a robe and a diploma to show off. I do so love academic robes/
Especially when they're purple.

But "retirement" to me was at the bottom line, as far as I had always imagined it, my choice. Whatever it is that I've been doing for however long, I got to decide when I was done. And it was a time of honor, of being honored, just like a graduation. Many of my mentors have retired this way; a couple of them tell me that every once and a while, they get called by their former workplace to bail them out somehow. One of said mentors-become-friends got an "emeritus" title, he's Director of Music Emeritus.

I think, I am pretty sure, and definitely hope, that I'm over my "separation" from my former workplace. But I received no title, no thanks, no congratulations.

Because my once-colleagues are all aging, the institution looks like it's gonna have a rather sizable crop of retirees comin' up on it; I suppose I really do wonder how the institution is gonna handle being in effect, forcibly remade, because All These Important People will be leaving.

Mostly, I expect, by their own choice. But we'll find out.

But let's look at said by-choice retirement... Besides merely having had enough and I'm done, thank you very much, what else is involved? Not being able to do things because the body doesn't last forever and things fail and you just need to deal with it.

Well, that's the MS Experience, ain't it? Things fail. You just gotta deal. Or, as Greg Universe told his son Steven, "Sometimes you gotta bail."
Which was definitely the situation in my final workplace days. Nobody gave me a title, nobody ever asked me for help in any way. even to answer a question.

Which, at the end of the day, was OK too. I had been, after all, retired... gentlest way to put it, I suppose. But from what little I hear nowadays, I got out of there just in time; things have Definitely changed and it's just fine for me to be uninvolved. At all. Nowadays, I sit on my veranda looking at the back yard, I lie down, I listen to cartoons and sometimes even watch them. I type things like this, which takes wicked longer than it used to. I make tea. Lots of matcha, but sometimes dark oolong, or Big Red Robe (a new addition).

And at the end of the day, that's ... OK.

Because sometimes it's definitely the right time to bail.

Sunday, May 3, 2015

Take what you can get

Some magician friends wrote recently on the power of nature. It is wonderful for pretty much all of us... there's power and beauty in nature, and even healing!

This is one of my doctor's favorite prescriptions: Go into nature.

Of course if you've got "real" nature, like the Everglades or Yosemite or any such place, those are the best... But unless you're stuck in the New York City subway or somewhere like that, nature is everywhere.

Ram Dass writes extensively about "be here now," and one of my own rituals is to simply say to myself, "Where am I? Here. When is it? Now." And then... breathe, and smell the air.

A moment of quiet beauty. And healing, especially healing the spirit.

So; go thou and heal.
Right now, I just want to lie down, listen to cartoons, maybe sleep. Oh yeah, Alan (the name I've given my bladder, after the balloon in the Gumboil cartoons) is about to call for a trip to the Cath Club. I did my business-y work this morning, sending stuff to people whom I hope will help me de-bollix my main computer but I expect won't help at all, so I gotta call somebody and spend more money to get my machine de-bollixed. If he can.

I presume I'll have to bring it to zero and have all sorts of stuff reinstalled.

MS by now should have brought me more than enough experience with "Things are different now," and certainly I should be used to "You THINK you made this better, but actually you've not just made it worse, you've destroyed it," you know, the whole unintended-consequences life-is-very-different-now "surprises." Well, that it has...

And I've hit the wall, so I'm going to get a snack and go to bed.

Although, as much as one can say about the MS Life, snack and bed have their own charms.

Take what you can get, right?

Saturday, May 2, 2015

Culinary metaphors and the power of "when"

Saw the sunrise this morning! Well, sort-of sunrise, there are all sorts of trees between me and the actual rising of the sun, but it was still a beautiful moment.

Did the Morning Ordering via the Internet, headed here while I still have typing abilities (which ain't much and ain't gonna last, I fear), plan (hope) to make my wife's Good Morning Matcha, squeeze the last typing into some e-mail, maybe will communicate with These People regarding my misbehaving computer--they are free to call their latest OS something poetic like "Yosemite," but from my experience, it should be called "Clusterfuck."

There are a lot of things in this world that are offered as a "help," but turn out to be quite the opposite because, as a friend of mine puts it, they know what they want, but they don't know what they're doing. And to be fair, people only solve their problems, those being what they think they understand. Which they usually don't. And then things get worse. But that's another show, as Alto Brown often said.

I see a few really quite encouraging entries on my fellow MS Blogger's pages. The grandkids are coming, we're getting ready for a nice dinner, the more-than-occasional Issues with things like wheelchairs or other medical interventions. Hmm, what is it that I do, nowadays?

Answer e-mail, order things, make my wife matcha or other teas during the day, send messages to a friend of mine who is not on the MS Path but has more than enough "humanity" issues, including getting out from under the thumb of people who were basically making his life worse--fortunately, he escaped those travails and is now in a very, very good place, employment and "doing things" wise. From what I hear, he is doing something he is very very happy about: He is the chef at an "old actor's home," and he is making people very, very happy (as well as doing the Lord's Work in making the kitchen safer).

But, "doing things" in the Outside World is not what I'm called on to do, right now. Would I maybe like to do some things? Yeah, I even have things I've been considering doing for many months. But said things do take a lot of "getting things together" work, which is it's own "doing," and since I very infrequently have enough gusto to feed the cat, there ain't a lot of gusto to do all sorts of things that will make something else doable.

Think meringue; you can do amazing things with it, and it's reasonably easy to use it, but you gotta do a lot of work just to make it.
And if for whatever reason you can't make it, you can't work with it because it doesn't exist yet.

Ah, the MS "Meringue world"... interesting, no? Culinary parallels... very much in the model of Hell's Kitchen, more often than we'd like. The "hell" part especially.

Ah the things to do... I wouldn't mind putting a couple of CD's together, I even have much (if not all) f the music & stuff that's necessary, but it involves sitting at the computer for quite a while, which isn't always fun (odd pains and inability to work my hands well enough to operate the computer, irritatingly or not). Well, when I do have something to report, I will.

And you can tell that I would truly like to do it, because I describe it happening by saying not "if," but "when."

Even that is a powerful commitment.


Friday, May 1, 2015

Live with joy

Morning work takes many forms... the usual bathroom stuff, making tea, first day of the month so pay the mortgage, pay the car loan, fiddle with my music web site to make the front page show stuff that's suitable for today, May 1, or Beltane as the Celtic calendar calls it.

Chat with you, and two-ish hours after getting up, I've hit the wall already. I think I'll snag something to snack on, and call it "done," for the moment. Probably won't touch the computer again until tomorrow.

Well, yes my iStuff is a computer, but typing on it is odd, and typing and I don't seem to get along like we used to, but you know what I mean.

Some medical things to share... My urologist told me that UTIs can exacerbate MS-supplied physical sillinesses, and that I should--and this suggestion I can share with you, with anyone--drink more water.

Now, with the bladder issues I have already, asking it to deal with more liquid doesn't strike me as a quiet, inconspicuous change to its operations, but except for that, it's good for me so why not.

Although as Urinetown does remind us, it's a privilege to pee, but looking at my stack of catheter boxes, gauze, povidone wipes, lubricants, and all that and just imagining what that pile o' stuff costs, it puts that musical's songs about "paying to pee" in a different context.
I don't think the authors of the musical's book had us members of the Cath Club in mind.

But my current experiences certainly put new meaning to the word "important." Things like your elimination system... those things are important. If your elimination system stops helping you, you die. Or at the very least, feel very very unhappy. Being properly nourished is important--actually, as soon as I save this I've got to go eat something. Because if you don't eat, you die. Eating is important.

The Chinese called them the Four Necessities: Food, clothing, shelter, medicine. They're definitely necessary. If you don't have them, you die.

"Have it or die" is pretty much the epitome of "necessary."

Ram Dass writes on the difference between wanting and desiring, and there's certainly a very interesting world in the realm of "making life worth living," and one can only imagine what people like Ram Dass or the Dalai Lama or Buddhist after Buddhist adept would say about what it is about the whole "worth living" concept, and I use medically prescribed herbs to pull me out of darkness and back to the light of "life worth living," but it's a very useful place to take one's self, to really observe, to even witness, feeling "not worth living" and then feeling "worth living."

Personally, I find "worth living" a significantly more enjoyable place. So, make the choice; and, if even in the most humble, quiet way...

Live with joy.