Tuesday, March 25, 2014

Art imitates life

Question is asked, "So how do you feel today?"



But things may be improving...sort of... kinda... who knows?

I had some remote Qigong work done this weekend. It definitely did SOMETHING, but what it was, I have no idea. Still working, maybe... see above, under "have no idea."

But, no adverse side effects. We like that.

Took care of some over-the-web business this morning. Might head to the bathroom to transact some  Bathroom Business, might get a quick snack to transact some Nutrition Business, might head to the bed to transact some Lie Down And Do Nothing Business.

Or all three.

So many of my fellow MS bloggers tell of so many rich adventures, even if they're only "inner" adventures, before which my Feebles seem to pale. But, as has been often said, the real jihad is the internal jihad, and each of us gets a custom-designed internal jihad placed before us, whether we're into it or not.

Which, I would presume, most would not. Oh well.

So, that seems to be it for now. No music. Snack, bathroom, bed.

Maybe I'll treat myself to an online Rick and Morty. a new series on Adult Swim.

The characters of which show are definitely doing the "internal jihad" polka. Some with more success than others... Morty's dad (on the left, in the picture below) has a humongous internal jihad, at which among so many other things he seems utterly incompetent, which makes him face-plant into reality very often, and very painfully.

Which actually, tragically enough, makes MS seem ... merciful.

Art imitates life, eh?

Saturday, March 22, 2014

REALLY facing loss

This is a hard one, to write about.

All of us MSers pretty much get a face-plant into "this body eventually stops working the way we had becomes accustomed to."

So now I'm in a wheelchair. So now I'm in the Cath Club. So now I can't raise my wheelchair into the back of my truck so I can't drive places without help at the end of the journey. So now I can't deal with eating anything unless I have the right medicinal herbs to help my appetite.

We can all go on for hours. And not just MSers, all of us who have come to this incarnation eventually "get" to deal with such things. For too many of us, to "deal" with such things.

But something really slapped me hard... fine control over my hands, today it's especially my right hand which has always been my first choice for "fine control."

Try to use chopsticks to pick up something. I used to be really, really good at chopsticks. Apparently, not so much today.

Try to use a spoon to feed yourself. It feels like I'm going to lose all control over the spoon the second I pick it up and try to use it.

The mouse and the piano-style keyboard, for writing music on the computer. I can almost not use either. Lord, I tried to show somebody how the finale to Widor organ-symphony 5 worked, and could barely operate the keys even badly.

I drop things all the time. "Oh, why don't I just throw all this stuff on the floor," I find myself saying. All the time.

I tried to fold a shirt that I had just somehow put through the laundry, yesterday. Didn't work.

Tried to pick up a piece of cloth to wipe my glasses. Almost couldn't.

OK, I can just hear the trying-to-be-wellwishers saying things like "But no, you DID very nearly fold it! See, that's a triumph!" Yeah, well, I don't feel that way.

My legs took quite a while to "give out." I'm hoping that I can get them back a little closer to functional, for things like "stand up and take that off the shelf without dropping it," but things like playing the organ? I think that's ... over. Which, unless something radical changes, it is. And although that was painful, losing playing the organ, it took a while to get to the "can't get there from here" point, and the line in the sand between "you can" and "you can't" took a while to draw. Which maybe, maybe, made things a little easier. A little easier... maybe.

But this "hand failure" is coming at me so fast that I'm just watching independence and accomplishment vanish... even for small things like "mash up the avocados to make guacamole," which my hand was nearly unable to do. Nearly unable to even stir the avocados.

And let's not go into "what do I think," the better question is "what do I feel?" I feel... and this is the hard part... well, I scream when my hand fails, I think I feel fear. Terror. About what, doesn't matter; what I feel, does. I feel...

Terror. And loss.

Now, long ago when I started this blog, it was about gifts. About learning things. About finding the new, even the funny.

I haven't found any of those things. Yet, at least. Is there a gift there, waiting for me to discover it? I say "yes" very quickly, but truth be told, I ain't there yet. I feel terror, and loss.

Which maybe is the gift. Telling the truth. Witnessing the truth, no matter what it is, no matter how terrifying it may be or how much grief it brings me. Because facing those things may be the gift it has for me.

Just because people like Ram Dass speak very soothingly on loss, or that "everybody has to deal with it," doesn't make things easier. (That one, I've always been infuriated by. Yeah, everyone has to deal with it, and that lessens MY pain... how? They're suffering TOO. And that's supposed to make me feel better... why? Everyone in the room has a grand piano sitting on their face. That makes the piano sitting on my face weigh less... how? That makes my face feel better... how? Other people's suffering does not lessen mine. If it lessens YOURS... good for you.)

But this loss... I can't get through by "living in my head." This, I've actually got to face, and deal with.

Is that the gift?

... mmmaaaayyyybe...... ....  ............

Thursday, March 20, 2014

Layers of truth (and Truth)

Types of truth...

There's simply accurate, like 2+2=4 is simply accurate.

There's what I'm calling today "shallow truth," like a snap judgement or a rehearsed response. Something just kinda "snaps out" when you're asked to answer a question (such as "how do you feel today?" or "when person X does Y, how do you feel?"). Sometimes one speaks from one's own memory of ... whatever... but sometimes what you're really reacting to is not the specific question or moment, it's something that underlies the moment or question but that hasn't been processed yet.

Shallow truths are often clouded by emotions about other people or circumstances. You think you're talking about [whatever you think you're actually talking about], but actually, what's really bothering you is something different.

Deep Truth--yes, capitalized--is very simple. Three words, usually... "I feel [feeling]." And that's all. No "they," no "you," just "I."

Very powerful, Deep Truth is... and especially powerful in how liberating it can be.

You don't need to tell someone, like a pastor/priest/counselor. Nobody needs to hear you. (You can address such things to whatever spiritual being you like, depending on your own faith traditions and paths.) Actually speaking these Deep Truths is powerful, even if all you speak them to is the wind. But  what's key is that you "cop" to them. You really, really, just... admit them.

Sometimes you need to force yourself into (and thus out of) the corner, metaphorically... You can find yourself railing about "Damn it, They (whoever "they" is/are) did X and that was just WRONG!!!!" but then, you stop yourself; and you ask, "But how to YOU feel?" And here, "you" is actually "I," but a little separation, even if it's only metaphoric, sometimes helps.

But it's hugely liberating. "Person X did Y and that's just not fair, what's wrong with them?" That's not liberating. "Don't judge," as Rick of Rick and Morty often says. But if you come back to yourself, and force yourself to come clean with "Yes, but I feel... [whatever]," and you go really inside yourself to reach that Deep Truth... That is liberating.

So that's part of my internal struggle, nowadays. Sometimes, it's easy... and how do I feel about having to use this catheter to empty my bladder? I really like this catheter is about all I have on that particular topic. I truly don't think I'm imprisoned by my membership in the Cath Club. But I've still got chains wrapping my heart from my former employer. When I can really drill down to the "I feel...[specific feeling]" level, I can feel the chains unwrapping. I actually felt some major back muscles relax and the way I was sitting up completely change, my Heart not only spiritually opened, but my chest opened and let the Heart breathe, metaphorically speaking.

This is all part of the Witness; being truthful, Deeply Truthful, to and with one's self. To cop to what your process actually is.

A good thing indeed, MS or not, the Witness.

But yeah, Deep Truths. They have power. And, as the Good Book says, the Truth will set you free. And good book or not...

It will.

Wednesday, March 19, 2014

I ain't got...

Acceptance, and denial. Well, that's humanity for you.

I get things from various MS Societies. They often offer "Living with MS" sessions, which I suppose for those who are helped, are miraculous.

I've never tried one yet.

I didn't go to a friend's musical yesterday. He's very proud of it (he's a producer rather than a lyricist or composer, but he has something to do with it, certainly), my wife made the show, she said it was charming. We had all hoped I could go. My wife had even called the theater to make sure it was wheelchair-accessible.

Now, it turned out that like most Old Places in Hollywood, it of course was NOT wheelchair accessible, time was when I could hobble up three steps well enough... but, hobbling down is/was another matter, and stopping the show to help the cripple down a few steps so he could then undertake the next challenge (the bathroom), that wouldn't have been good. At all.  So, I suppose it was in some ways good not to go.

But those issues were all discovered later, before the decision not to go was made. "Decision"? Yeah, I suppose it was. I was toast. I guess I'm back in the "sleeping all day" mode, we'll see what happens today, but none of the MS Society's offerings seem to offer help with the state of "I ain't got SHIT."

Well, I'm certainly not in denial about that. I am in a struggle over spend energy on something that's "good for you" but that itself is very energetically expensive and yeah, maybe it was good for me, but now I'm even more depleted than "I ain't got shit" and what am I supposed to do with that?

I accept having to shove things up various orifices to assist with basic bodily functions (see membership in "the Cath Club"). That doesn't bother me. I can even accept needing to go to particular medicinal herbs simply to be able to eat; some of them are very good at encouraging eating.

But when I get to the "I ain't got shit" stage, am I "accepting" it? Denying it? I don't think so, not the way I've denied way too many things in my past... but the Zen-like bliss of enlightened experience of life, no, that ain't happening either, as much Ram Dass as I read. Which, by the way, I recommend you do too.

Did some morning e-mail. Got one more that just arrived, to delete (an invitation to an even that I definitely ain't going to, disease or no disease, but that's another story). Maybe I'll go outside and groove on the sun. Maybe I'll try to write some music.

Maybe I'll give up. I dunno if that counts as "denial," but it's definitely not "acceptance." But giving up does have its appeal.

Because, right now... Basically, if something energetic doesn't just pop up and make everything magically better...

I ain't got shit.

Wednesday, March 12, 2014

Hard, and easy...

Man, Monday and Tuesday, what amazing oriental-medicine treatments. I'm still reeling from them.

And more than a few well-earned and well-deserved "Dude, do THIS" moments.

Time for a change, in many respects.

This is, I think, the secret path of the journey with MS... it puts you into direct contact with "Dude, you have SO got to do THIS" issues.

Many face-plants into the truth. Many face-plants into "you THINK you're telling the truth, but that's not the real truth..." and not letting me wiggle out until I had come to that very real truth. Capital-T Truth.

There's the truth from the ego, which we tell ourselves is the truth, and there's the truth from the Heart, which is the Real Truth.

Which the ego tells us is scary to face, but when we face it, it's not scary, it's ...


So, give up and lie down or try to do something creative?

One of the "Dude, you have SO got to..." moments involved facing the "doing" of creative work. You have to sit up at the computer or whatever, even if sitting up is no fun at ALL, and do it any way.

As best you can, while you can.

Which, after all, is the call placed before us by..... life.

There's MS stuff, and there's "life stuff," and they're not the same, except when they are.

Oh, that's easy to follow, isn't it?

But we always return to "tell the truth, with love."

Hard enough. And easy enough.

Sunday, March 9, 2014

Who can say?

I had planned, hoped even, to write some music this morning.

To write a significant and moving blog post.

Actually, I think I'm going back to bed.

Will there be more blogging today? Will music get written?

As Aragorn often asked in Lord of the Rings...
Who can say?

Sure, I could choose to do stuff.

Well, I did that already. I chose to do creative things.

However, I'm going back to bed, choices or not. How long will I stay there, today?

Who can say?

Thursday, March 6, 2014

One moment of perfect beauty

The phrase "Dammit, I'm going to do this!" comes to us all, MS or not, but to us MSers, it has a different use (not just a different "meaning").

First off, though, whatever it is, it needs to be possible. "Yeah, I'm gonna get up an walk around the block the way I used to for so many years..." Yeah, that ain't gonna happen. Today, at least, MS changes all the time but that way? Not so often...

But sometimes, "dammit, I'm gonna do this" actually helps. It doesn't have to be big, or "significant" to anyone else. But it is for you, and you make it significant just by trying.

What's "doable" changes. A lot. Often in very unwelcome ways. But sometimes... dammit (or when I'm really stoked about something, it's "God damn it"), I'm gonna do [whatever], but I am gonna do it.

Could be simple, like "write a blog entry" (like this one). Could be simple, like "send e-mail to that friend," or MMS him the thing I meant to message him yesterday. Or the day before...

Sometimes it's bigger. Dammit, I'm going to take that [whatever it is] out to the trash cans. Sometimes, it's bigger in the just-doing-ness of it, as in "dammit, I'm going to go outside and pick a tomato," but going outside involves taking the wheelchair down, and then more importantly up, the ramp, which is a superb and generous ramp but hardly zero-effort.

Sometimes, dammit, I'm going to lie next to my wife and stroke her hair and enjoy just being with her. Doesn't seem to be a "dammit" thing, but when you're using outdoor plants to treat your neuropathic pain, you've got "I have no idea what it's up to" bladder issues, or other issue upon issue upon issue, even simple things slide into the "dammit, I am going to do this" category.

Sometimes, it's energetically expensive. VERY expensive. I had a "dammit, I want to go to the store and shop my own damned self and get whatever the bleep that I want for whatever reason" adventure, at which I ran out of juice for the shopping adventure about halfway through it, and although I did get stuff that dammit, I wanted to get, having zero energy and zero lists meant that a bunch of stuff just didn't get obtained.

Oh well. Another trip, maybe? Yeah, I guess so, but I gotta be willing to put THAT MUCH energy into just shopping, I dunno about that. Today, at least.

Today. An important word for us MSers, maybe it's a little NLP-ish, but it's important for us to say "I can't deal with this TODAY" rather than just "I can't deal with this." Less limiting, I think. I hope...

And it's more truthful. TODAY, I can't deal with it. As true as true gets, if "today," you can't deal with it. Telling the truth is always important, even in small ways like this one.

And a final thought, shared with me by someone who does kundalini yoga. A particular guru was on his deathbed, and one of his followers came up and asked, "How are you?"

The guru answered quickly: "Why do you ask me this? I'm fine. My body sucks."

And speaking of truth... how true is that for each of us? Sometimes, it's very true for me, sometimes... not so much. But it's very important for me especially, in my own MS journey, not to conflate the two. Again... speak the truth! Sometimes, I'm doing great! My body has issues, but me? I'm great!

When I am. And when I am, sometimes as they said on Babylon 5, it is "one moment of perfect beauty."

And one moment... isn't "each moment"... really and truly, a moment of perfect beauty?