Wednesday, July 30, 2014

Words to live by

Bathroom remodeling proceeds apace. I may take to the bed until they drive me out with their enthusiastic banging or reassuring (for them) AM radio still playing the hits of the '80s, like Donna Summer Disco Madness.

Wife and mother-in-law (that'd be her mother) having fun. All goes well.

I'm not writing music again, yet, in'sh Allah, but I'm sitting up at the moment, at least.

New pu erh tea this morning, courtesy one of Karen's friends. Quite nice, actually!

And I think I'm hitting the wall already, so that's it, for now. Pay attention and go with the flow, valuable words to live by, MS or not.

Tuesday, July 29, 2014

What you can get

It has been an interesting week. Wife has been at ComicCon, having the time of her life--which I am definitely all for, I've never really been a "vacation" type, who goes somewhere just to recharge, so when someone does it (recharges), I'm definitely for it!

Have been very tenderly cared for by Karen's mother, visiting from Louisiana. A godsend, she has been, and we have had quite a bit of fun. Even introduced her to the yummies at Ten Ren, including almond-milk black tea, which she loved! (She's a black-tea person, not the oolong kook that I am. Lord knows, definitely not a fan of matcha. Oh my, no.)

House Guys are rigging the back bathroom to make it more handi-friendly. It's already much more wheelchair-friendly, they widened the door and everything. Although, the more they work on it, the clearer it is that the people who converted the garage into a bedroom/bathroom combo should probably have watched a few more home improvement shows. Several more.

But even things like simple handles and handrails make a huge difference. Huge difference. I'm well out of the "wall walking" stage I used to be in, what little "walking" I do is pretty much my P/T, but I'm able to do it with handles and other things to carry my weight, so as far as "bad" goes, it's actually pretty good.

MD/acupuncture/dharma talk day, today. A fine thing to do in a way-too-hot LA day, when the A/C's may be off while House Guys work on the bathroom, rerouting a wire that runs directly through what's best described as WTF territory. They'll fix that, too, and good for them!

Karen's mom will be with us for at least a week more; it'll be nice for Karen to have some "mom time," as well as providing additional generous care for both me and the house. (Moms always clean amazingly, don't they? A blessing for us all, the gift that keeps on giving.)

Meanwhile, we'll be enjoying the A/C at home, since outside the phone predicts its gonna get up to nearly 100. Which my legs like, but wracks my core; I'm both heat sensitive and cold sensitive.

Well, take what you can get, right? And sometimes, it can be quite wonderful. Surprisingly wonderful... even delightfully wonderful!

Friday, July 25, 2014

If you let it

Hotter than the hinges of Hell, here in Sou Cal. Thank God, every one and each of them, for my humble little window-mounted A/C's.

My handyman-neighbor is working on the back bathroom, to make it more wheelchair-friendly. One of the first things he put in were handicap bars (for support in "walking" from the door to the commode), which were a godsend. Irritated me, at myself, for waiting so long to have that done. Very easy it was, just get the correct equipment and use it correctly.

Why that seems so bizarre a concept for so many people in so many contexts, I have no idea.

Wife is having the time of her life at ComicCon. Quite the amazing place, from what I see from this distance...

I don't go, for several reasons, but a very important one of which is WIFEY NEEDS A VACATION. By herself, without MS-wracked-invalid-husband to take care of. No, she's there to do Her Things in her Own Way by herself. Of this, I approve. Big time.

I don't think I have been on a "take time to heal yourself and just have fun vacation" in years. If ever. I've had fun going paces, but never just cut the strings and take care of yourself and just have fun. Well, I do take the time to enjoy my favorite izakaya when I'm inVegas, but that's pretty much as close as I get to a "treat yourself" vacation.

Must be nice to do that. Should do that more, somehow.

Been reading and enjoying Ram Dass on the web. Many good thoughts to think about, good questions to put before myself. A lot of my own processing seems to call for simply using the Witness. Rather than "that annoys me" or more (too) commonly "They annoy me"... "They" does change an awful lot, just be truthful. "That pisses me off" isn't as healthful as "I see that. I feel angry," because that path will show you where you need to do work.

If you let Them, They can be your teacher.

As can MS.

If you let it...

Saturday, July 19, 2014

Yup; I'm attached

Man, yesterday was a day I do NOT want to experience again.

Lost the ability to control my hands... fingers would just casually curl under, which meant I couldn't place my palm on something to get a purchase of any kind.

About 2-ish AM, somehow managed to get into the bathroom for a quick cath-ing, but then, trying to make it all the way back to the wheelchair, I couldn't raise my knees up high enough to free my feet from the floor, where they seemed to be quite stuck (friction, not stickiness). Somehow made it back into the wheelchair, somehow made it back into the bed.

Earlier that night, I was so unable to control anything and slid out of the wheelchair onto the floor, from which thank God my wife was able to free me and put me back into the bed.

I was mired in a sea of "I can't do anything." Yeah, I've heard it before, don't say "can't," to which I want to reply "YOU try driving this body around at this particular moment, and you'll understand what 'can't' really means."

5-ish AM Morning Cath jaunt... transfer from the bed to the chair, "walk" from the chair to the commode, cath with no problem (yesterday, there was a time I had so little hand control that I couldn't lube my catheter without assistance), "walk" back to the chair, transfer back to the bed. No problem! Problems? What problems?

Yesterday was hell. Today is what nowadays passes for normal. But, at least, it passes for "functional." It's certainly "normal enough" for all practical purposes.

Now, yeah, I know that we who have chosen this incarnation have enough issues to deal with already, man that is born of woman hath but a short time to live and is full of misery and all that. But, WTF? WTFingF?

I know Neurological Nonsense, however it is expressed, is always a moving target... but c'mon, really? Really?

As one of my former students said, while pointing at an architectural oddity...

What's up with that?

Someone on FB has a picture of, maybe it might have been Krishnamurti, who said "I got a lot happier when I stopped minding what happened."

Well, I want to get out of my chair and into the bathroom, and out of the bathroom back into my chair, and from my chair back into the bed.

And if I can't (screw you, sometimes I actually, observably can't), I mind.

That, I definitely mind. I can't empty my bladder without a catheter, that I don't mind. I've been having bowel issues and sometimes need suppositories to "shake things up" enough to get them moving. That, I don't mind.

But I can't get comfortable in the bed? I can't get out of my wheelchair into the bed?

That... I mind.

Attachment is an insidious thing. This journey along the Neurological Way has certainly shown me all sorts of hidden, nasty, attachments. The teaching of which I have welcomed, and still seek ways to free myself.

But getting into bed? Getting into a position, in the bed, that will reduce rather than exacerbate a headache? Getting into and out of the bathroom so I can not die from the urine in an unemptied bladder frying my kidneys?

Yup. I'm attached.

Wonder what the Buddha would say about that?

As they said in the Legend of the Rangers, "We live for the One, we die for the One... but we don't die stupid."

Wednesday, July 9, 2014

... ... long pause ... ...

My kyudo teacher often tells how someone told him, "An hour of practice is an hour of practice."

It's 10:30 in the morning. I wanted to come to my computer, do... well, something... and then maybe write some music.

Actually, I want to lie down and give up. The last time I tried to write music, I made something like four measures. And then lay down and gave up.

Well, to paraphrase my kyudo teacher, four measures are four measures. One note is one note.

And yet, I just want to lie down and give up.

So, what is going to happen? What is ... about to happen?

Who can say? ... ... ... ... ... ... A long pause. Fingers, especially on my right hand, are pretty much checking out or splattering text as I try to "type." Today, I think I'm about at the end of ... trying, and sitting up.

Am I already at the end of ... today, in the land of "doing things besides lying or struggling with the bathroom (something I do all the time I try to use that room... struggle, that is).

So, do I give up for today?

... ... ... ... long pause ... ... ...

Who can say, until we get there? Just like life, ain't it...?

Tuesday, July 8, 2014

For now...

This was a blog entry of a few days ago. You'll understand why the title leapt out at me...

Is "better" possible?

Seth goes on to say "The easiest and safest thing to do is accept what you've been 'given', to assume that you are unchangeable, and the cards you've been dealt are all that are available." He's living in the "business world," but we MSers, we face this question all the time.

It hung me up repeatedly when I was in the hospital, it faces me every time I see the latest cash-cow-du-jour Fabulous New MS Drug. I would ask "And this is going to make me feel... better?" and just hear the rattle of the air conditioner. I hear a lot of things like "X is thought to [whatever]," and I know that's legal mumbo jumbo, but it just torques me off. My reaction: "You want ME to take this, but you don't know what it does?"

I take stuff all the time. B12. Thyroxin. Herbs, herbs, herbs, and more herbs. My care givers tell me what these things do. They know what they do, and more importantly, they know what they do for me. Here and now, as Ram Dass would say. Chinese herbalism is all about this... take this today, because today, this is what you need.

Yup. I've been spoiled.

We MSers, and Lord knows, certainly this MSer, that'd be me, need to accept what we're given. Because the way I am today, is the way that I am. Today.

I try to do it non-claiming-permanent-disability style. Yeah, I can't play organ. Today. Very, very different from "I can't play organ any more" or "... ever again." That's an easy, NLP-class of approach. I try to tell the truth at the time I basically "hit the wall," and once I am quite sure that I have indeed hit the wall, I give up... today.

But that's all I got. To give up... today. But not tomorrow... today, at least.

All sorts of people have said the same thing. Physical therapists, Rolfers, many many folks... There's a big difference between "hurts good" and "hurts bad." If it hurts good--do it. Strive for it. Enjoy it. If "hurts good," after all. But if it hurts bad... stop.

My "hurts" in dealing with the computer to write things like this, or maybe even music... Physically may not hurt bad, but face-planting into "my hands don't work so good," that hurts bad--emotionally, certainly. But when it hurts bad (emotionally), it definitely hurts (emotionally) pretty darned bad.

And I have definitely hit the wall, emotionally (with malfunctioning fingers) and energetically... yup, I'm done. Definitely.

For now... For now and today, at least. But later? Tomorrow? Who can say?

We'll find out when we get there. To "later," that is. Well, Ram Dass would remind us that "now" is all we get. And so, hitting the wall, is what I have.

For now... When "later" gets here, we'll see what happens then.

For now.

Thursday, July 3, 2014

A conflict that demands your choice

I wish I could have just a good-old-fashioned talk with Alan, B-san, the balloon that is my bladder. (Certainly anyone following the news recently has wanted to have a "Really, dude? Really?" conversation with all sorts of people...)

A recent Big-Time anti-smoking campaign, in heavy rotation on Adult Swim and as you might imagine is aimed at teens, features a young lady quoting someone unnamed (but which is eventually revealed as a cigarette) saying "Outside! NOW! (she protests, the "someone" repeats...) Outside! NOW!" and this unnamed entity is described as "so needy..."

Alan has also been needy, recently. He doesn't call for going outside, he calls for a cath. "I want to be emptied! NOW!"

Well, that is his job after all, but there's not-even-vaguely-full, definitely-full, and surprisingly-full, as revealed by the cath process itself. Alan tends in recent days to scream really loudly about having a desperate need to be emptied, but at the end, what gets cath'ed out fits into the category of "I think the bladder doth protest too much," to paraphrase Shakespeare.

If I'm chugging down the oolong, a lot goes in and a lot comes out. That, I can deal with, easily. When Alan is full to a certain point, he is definitely psyched to "enjoy the spaghetti" (one of his favorite foods on his cartoon series) and let the fur fly, as it were.

Issue is, after screaming desperately, he might very well show little to no interest in "enjoying the spaghetti" (getting the cath even to, much less through, the "prosgate," as I phrase it), but still screams about being ready to be emptied.

And so needy, as the commercial describes it.

A pause... Alan desperately demanded attention, but thanks to the charming diuretic nature of the morning's oolong, this was the opposite of a false alarm. A very worthwhile event, definitely "worth the trouble."

You take what satisfaction you can, eh?

Piled on top of that, I have been hoping to do some music stuff, for a change I actually have workable ideas, but my right hand appears to be going on strike. A "sorry, but I can't do shit" strike. I try simply to grasp and hold something, and my hand feels like it fails utterly and horribly and heartrendingly, but when observed impartially, it's merely out of control and completely insensitive. Which isn't "failing," officially, but I find it utterly disheartening; it's so hard to take, even my normally very creatively colorful profanity fails me.

Yeah, in the picture Finn is holding the sword, but if it had been me, by now it would have been just dangling.

I supposed I should "try" to keep going, but I'm definitely on the edge of giving up. Finish here with you, look into one other thing, at least set up starting to write the music, but... I think, hard as it may be, it may be important to try then actually fail rather than just giving up.

And a second after making that decision, my right hand, with which I had been sorta-kinda typing at least a few letters here and there, pretty much just failed. It does, push individual keys, which is what "typing" is all about, it just slid into incoherent mashing. Which my left hand is close to, but thank God isn't nearly as bad. Today... as for tomorrow, who can say?

So, try and fail, or just fail and be done with it? As Glorshon Wars said frequently, a conflict that demands your (my!) choice.

Tuesday, July 1, 2014

Take what you can get

Man, some of my fellow MS-bloggers are so very cheery! This entry starts with a smile!

Cheery, I don't do much, on a daily basis. Although my wife always makes me smile. She's amazing!

I gotta tell you, friends, you really really really want to find someone who practices Classical Five-Element Acupuncture. It's delightfully life-changing... it even makes me smile like that (see above), wheelchair and all.

Four needles can change your life. Sometimes, just one.

They identify this condition they call an "entry/exit block." There are twelve "officials," each with its own meridian, and energy moves between them in a certain order. If the energy is supposed to go from meridian A to meridian B but doesn't, that's a block. You open the block with four needles, two on the exit points, two on the entry points.

Being blocked is no fun at all. What actually causes the block is specific to each person, some seem more prone to certain blocks, my guy tells me that leading up to Tax Day on April 15th, everybody he sees is blocked, but that's another story. Sometimes it's a shock, some times is just being startled, sometimes it's rage, there are all sorts of reasons, but they're always bad. Sometimes very, very bad. Some especially nasty blocks have brought me to the point of full-on suicidal; yesterday's block brought me to a place not that bad, but to a place where dying, just happening to kinda accidentally just happening to die... Well, I don't necessarily want to facilitate it, but it would be convenient... at least I wouldn't feel "being fine with being dead" the way I did then.

Four needles, and life is worth living again. NO SIDE EFFECTS.

Now, there are a couple of Bladder meridian points, next to the sacrum, that My Guy said that his teacher called his "MS points," I'm not personally convinced they do much for guys like me, but it's worth a shot, you know, no side effects and all. I can tell that they do something, but what, I couldn't tell you.

Other points have much more immediately perceived effects.Yesterday, I got Kidney 25 I think is the number, named "Spirit Storehouse," which also improved my outlook!

This MS stuff nobody can address, really, because really, nobody knows WTF is actually up, but vague unhappy-just-to-be-alive, these Five-Element folks can take really good care of.

And what else does MS teach us, no matter what kind of health care we're getting? What does it teach us very, very quickly?

Take what you can get.