Afraid

Been going down some major philosophical roads, recently...

And, of course, becoming intimate with more malfunctions. Hands don't work so good, right now, typing on this particular keyboard at this particular moment seems to be working better than other keyboards, at other moments... MD sometimes says it's just age, but this, he says is The Disease.

Great.

And as I was sitting outside groovin' on my "yummy" medicinal herbs, I suddenly realize that...

I've given up. I don't treat MS as a being, like "it" does something or "now 'it' wants" or "now 'it' insists," or personifications like that. But I realize that I don't plan anything, any more. Anything. Perhaps because...

I've given total control to It. The entity that doesn't exist, that we all call "this disease."

But I've given up. And given up to It. I've given control to It.

No wonder my "Planner" official is unhappy (see the five-element acupuncturists for more info on that particular official). My Planner official may be unhappy for entirely different reasons, but the Planner can't plan because ...

I'm afraid. I'm afraid of all sorts of stuf, but I'm specifically afraid to plan anything.

Yeah, I can spin reasons (let's be honest, justifications) enough to choke an ox, but basically... I'm afraid.

So, that's the Inner Jihad to fight right now. Fear. Something I have to fight even to admit, for far too many things.

But I'm afraid.

Of... It?

Perhaps, perhaps... but afraid?

That, I definitely am.

Potter-isms

Reading some of the Harry Potter books, I came across a product of the Weasley twins joke shop...

U-No-Poo.

From my point of view, nowadays... that ain't as funny as it might have been, once upon a time. 'Course for me, it's more precisely U-No-Peristalt.

At another point, Hagrid tells Harry that witches and wizards stay in hiding because if they didn't, people would be after them seeking magical solutions to their problems. "We're best left alone," he says.

Wizard doctors have things like Skele-grow that fix broken bones. They might also have developed an MS cure, who knows?

Should that be the case... just this once... I could sure take a quick visit to St. Mungo's, couldn't you?

Witness

The MS Highway has definitely been taking me down some very introspective paths, recently...

The five-element practitioners will speak of today's season, the season of Water, as a time with the power of "emphasis." Now, as a Fire guy, Water doesn't sing to me, ab initio, but oh yes, there's definitely a reason for the season.

And definitely one of the gifts–yes, gifts!–of MS is becoming much more sensitive to... everything. Everything. Two nights ago, I was sitting outside just to "groove on" the air and the season, and I could feel the Metal within the Water. For me, Metal (especially during the fall) has an almost electrical jag to it. It thrills me. It supercharges me. And yes, even in the season of Water which extinguishes Fire, I felt the Metal jag.

And yesterday, again sitting in the back just to groove on the air and the season, I got an Earth jag; the Earth within the Water. Earth is the mother of us all; it loves all of us, it loves every living thing, equally... the love of a mother that loves you more and more and yet, loves her other children more and more. And yet, it is still the time of Water, and I could feel that it was not simply the Earth vibe, but the Earth within the Water (each of the elements has the other elements within them).

I'm also going within and seeing things about myself that aren't... pleasant. At all. As the Cosmic Owl said to Finn on Adventure Time, "You messed up."

And in the story, he had. Oh BOY, did he ever.

And so have I. And part of what is becoming my regular practice of sitting in the back enjoying my medicinal herbs is to tell the truth. Simply to tell the truth. Doesn't matter who hears it. Or if anyone hears it. What matters is that I tell the truth, unfettered by anything. By anything.

It's a useful practice... Especially if your habits tend to be thinking "and then THEY did [x]" or "THEY hurt me by doing [x]" or "THEY don't appreciate me" or, basically, "THEY" followed by anything.

But, really, although THEY do things that interface with YOU, what matters is what YOU did, and felt. So, we take THEY out of the equation... and just tell the truth. No conditions, no justifications, no explanations, no nothing but the Witnessed Truth.

I feel...[x].

What happens next... Is what happens next. But when you have seen through the eyes of the Impartial Witness, and seen yourself with those eyes... Everything is different.

Everything.

I'll give you a quick example... moving out of "ego" mode into "witness" mode changes things puddling around the house in a wheelchair. Ego sees something sitting on the [doesn't matter] that's not in a convenient place for Ego. Ego says "That's in the WRONG PLACE." Heck, if  could manage the humor of the South Park movie as Kenny was on the operating table, and one doctor shouts out "That doesn't go there!" I would at least be laughing.

But the Witness says... nothing. The Witness just witnesses. At most, it says... "It's there."

Right place, wrong place, that's from Ego's point of view. But the bottom line is... it's there.

Definitely a challenge for dealing with all our MS Malfunctions and interactions with the world and devices and institutions and and and and... But our first job is simply to witness.

And tell the truth.

And why is that... hard? Ummm... Because that's our choice? We chose that path?

As the Cosmic Owl would immediately tell us:

You messed up.

And as my kyudo teacher so simply and eloquently said, so very often...

Don't do that.

A good reminder.

The Emperor and the Coconut

The MS Highway is littered with metaphors...

OK, like many of us MSers, I have elimination problems. Physiologically there are all sorts of details and causes, but at the bottom line, elimination is about getting rid of stuff you don't need. Now, we have to fight simply to be able to do it... membership in the Cath Club, for instance, and learning new ways to use that and that (more details, if you cant guess them already you don't want, trust me) to get other elimination systems to actually eliminate.

And our frustration is, to put it quickly... we can't get rid of the stuff we no longer need.

And now look not at the body, but at life. At our spirit; at our heart (or as the acupuncturists call it, the Heart).

We are weighed down with things we don't need. Our ego which constantly clamors to be satisfied, our insatiable egos.

There is no catheter to drain the ego. There is no laxative, no suppository, to drain the ego.

For these, we need to change our minds...

And oh yeah, we should probably let go of that, too. My doc/acupuncturist/spiritual advisor told me yesterday that what I really needed to do was get into my Heart (yes, capital H) and out of my head.

The coconut (as another friend likes to call it) is not the emperor. The Heart is the Emperor.

Quit listening to the coconut.

That's one of the most important things to eliminate. And like all MSers, we need to retrain ourselves to eliminate differently.

So, among my many would-be projects, the one that needs to rise to the fore is ... elimination.

Pay attention to the Emperor. Live in the Heart.

And, although it does do reasonable things  at times... GET OUT OF THE COCONUT.

Thoughts from (for) the Cath Club

Some thoughts from a member of the Cath Club...

Now, gentle readers who are Guys, I begin with the words of my doctor: We're men. Eventually, we will all need to face this.

Guys, if I can speak for Us while I'm speaking for myself, we are relieved if not grateful that we don't have to deal with the things women have to deal with. Breast-mashing mammograms. Having one's hoopajoop prodded and plungered. And of course, menstruation and (shudder) pregnancy. Oh, it is such a blessing to not have to deal with those.

Said women probably feel the same about us and our catheters, as well as other Issues we have with our biological hardware. I know women have to catheter themselves sometimes, judging from the range of products available via the internet, but their devices don't have to travel as far as ours. Or deal with getting past the prostate—the prosgate, as I've taken to calling it.

The physiology of The Nozzle and its connection to the bladder is not as fixed and immovable as it is in the anatomical models you see in doctor's offices or biology classrooms. Here's the way it really works, and why we have problems with it... Imagine an unpoppable water balloon, filled with water why not. It is glued to a rope that comes directly out of (goes directly into) the valve through which you inflated the balloon; in our model, that's the prosgate. The balloon and its rope goes at the bottom of a paper grocery bag, which is then filled with other stuff (none of which will ever pop the balloon, that's important for this particular model). The other end of the rope runs through the bottom of the grocery bag, but doesn't tear the bag (again, important for this particular model).

Now, slosh the bag around. Stuff inside it moves, and jostles the balloon and its attached rope. The balloon never comes free of the rope, but the angle at which the rope connects to the balloon, and the precise direction that the valve of the balloon points changes a lot. A lot.

Which is what makes catheterization tricky and/or annoying. From the outside world to the prosgate, it's definitely a direct and (with luck) unblocked path, but direction? Shape? Who knows? But the good news is, the right-for-you catheter can work its way through this ever-changing path and go right where it's supposed to go, without difficulty or (we hope very much) any pain. Right cath, right technique, zero pain.

Zero. Remember that (and take refuge in that promise... I know I do).

So anyway, anyone wanting various versions of "how to catheterize" can find them elsewhere. Easily. Too easily. What I want to share with you is what I've learned so far that's not under the ever-so-easy-to-find "how to" umbrella, so that you won't have to take the time or have the "fun" I did learning them.

Here's the first of the Really Big Things...

There are a lot of catheters out there. You'll see sometimes them marked with a measurement in "Fr.", which for whatever reason is read "French," but functionally means "inches." They come in various types and designs. And the promised First Big Thing is...

The one that works for you, works for you. Period. When you know what works for you, don't waste your time with the rest of them, because they're not the one that works for you. Once you finally find the one that works, stick with it. Doing said experimentation might not be fun, it's "not so bad" but still kinda frustrating; that's completely normal and just remember, if it fails, IT failed, but YOU didn't.

Now, visualize the bag with its protruding rope. The angle at which the balloon joins the rope has changed. And you can't see it, the bag not being transparent. And now you see why this can be so annoyingly tricky.

The catheter that works for me, that I'd also recommend pretty much anyone should at least try if the first one they tried with you didn't work so good, is one with a "coudé" tip. I've tried one from Bard, which is my "B" choice, but the one I'm really enjoying right now (and "enjoying" comes directly from ease and comfort of insertion through the prosgate) is from Medline (don't try to order this by phone directly from Medline, I tried, they won't help you unless you're on their "business" list--although once I found whatever website did let me order them, it became simplicity itself).

The hook at the end is what makes this a coudé catheter. And don't worry, it's not like dragging a hooked finger across your everything, it's nice and soft and comfy. There's a little knob at the opposite end that you can use to show you which direction the coudé bit is pointing; once you get a chance to look at and fiddle with (outside The Nozzle), you'll instantly see how it works.

And Big Thing Two, also a Big Secret to using these things: Goop and angle. Lube the bejesus out of the tip (a trick I learned in the hospital) and generously for the part of its hose that's going to be inside your hose (urethra, I mean), sufficient lubrication guarantees comfort. And with the right cath, it is comfortable. It is. Really!

As to angle... if the tip is pointing in the right direction, it's going through the prosgate. If it isn't, it isn't. And if it isn't going in, it's because the tip hasn't found the bladder sphincter, the prosgate. Pushing harder does nothing besides hurt and cause damage. If you see blood, you've caused damage and pushed too hard. Don't do that. Really.

Now, this panicked me earlier this week. It's not going in, I can't make it go in, catheterization failure after failure. Four, five times in a row. Very concerning, to say the least. I went to the urologist to talk to him, he said that yeah he could scope me, but basically I just wasn't finding the prosgate and that's why the catheter wasn't going into the bladder. Using the right catheter made beaucoup difference!

This morning, I was using one of my preferred catheters (I chose the "B" version, for whatever reason) and it wasn't going in... rather than be concerned or panic, I remembered the magic formula: More goop, correct angle. Pull it all the way out, goop it up to beat the band, try again. When it wouldn't go through, pull back a little, twist a little to change the angle, try again. When I realized that I was basically using the cath tip to "find the hole," it was just a series of try/pull back/twist/try again until I could feel the tip starting to nose its way "into the hole" and once it did, it was simplicity itself to cross the prosgate.

But really... use the right cath, and everything becomes easier. Everything. Everything.

Wow, "the right tool for the right job," especially when you're sticking a straw in... the Nozzle, as they said on the Venture Brothers.

But to sum up the big tricks... more lube (as Mythbuster Jamie Hyneman would be the first to tell you), and then, when you're running into problems even finding the prosgate, change the angle—or, to paraphrase Steve Jobs of blessed memory:

Cath different.

Need; enjoy the trip

Today's entry may seem more "boogah boogah" than usual, even by my standards.

Yup. It is. So here we go, anyway...

Neil Degrasse Tyson described himself on a Bill Moyers show as having been "subpoenaed by the Universe," to walk the path of astrophysics.

I was "subpoenaed by the Universe" the other night, just sitting in the kitchen taking my medicinal herbs, with some ... amazing thoughts. They pretty much flattened me, even sitting in a wheelchair.

My doctor/acupuncturist/spiritual-advisor had a few years ago told me, "You needed to get MS." 

Now, having MS the way I do has ended my time (for now, at least, and let me say here and now that "for now at least" should be included after every "can't" in this paragraph because MS changes constantly, but I'm omitting saying that just to save space... let's abbreviate it FNAL, why not) of playing the organ, something I've been doing since I was five, even when all I could do was sit on a living-room chair and poke at it while organ music played in the background. My piano teacher once said that I was always playing the organ, even when I was playing the piano. Now, try as I might, I never could play the Gigue Fugue even vaguely close to the way Virgil Fox could (listening this clip on YouTube, even before the organ started playing, I began weeping at the beautiful things Virgil was saying, and the tears began gushing when the music started...) I wish I could say that I had studied with him, or that he was a friend of mine, but my life was forever changed by this wonderful, wonderful man, sequined buckles on his shoes and all.

I can't play drumset any more  or tune timpani with pedals, or stand behind percussion instruments and thus play in the percussion section (FNAL). I can't sing in church choirs because I can't walk up stairs to get into the choir loft or stand while I sing (FNAL)... There's what seems to be a constantly expanding list of what I can't do FNAL. 

Plus, looking back at the transition from my working life to my disabled life, there were several people who were... foci of dissonance, let's say politely, all of whom like me were convinced that they were the ones who were Right. Personally, I think my track record suggests that I had a better chance of having been at least a little accurate, and I sure like to console myself by adding "worth listening to" to the delusions that chain me to the past, but that's definitely another story.

Yeah, those delusions that chain you to the past are even so much better than acknowledging the truth...

So here's the spooky bit...

I needed to have those people frustrate me. I needed them to be the ones to get me out of my old life, and to break the chains that tied me to it in precisely the say that they did. With all the pain that accompanied the separation between me and not my "home," but my chains.

I needed to say goodbye to the organ and percussion and church-choir singing. I had pretty much come to the "I'm through with this" point, but it's a very different experience to meet a transition with "I'm done" and "You're done."

And the really spooky bit is...

All of this is precisely why I'm here. In this incarnation. To be frustrated. To have my dreams torn from me. To have my oh-so-comfortable life shredded.

I was at that school during the years I was working (or not employed by but still assisting them) there, specifically to help certain people, especially certain students. Very specific students, I was specifically there to help; I helped everyone that I could, but some of them, they needed me. They were at that school specifically for me to help them. And now, I'm no longer working there... because today, I'm not needed there (whether I like to think I am or not). Every time I say "Oh yes I am," I forge a new link to the chain that binds me, Jacob-Marley-style, to my own delusions and to my memories of the past.

Everything, for each of us, was for our own evolution. To become the person we needed to become. And what we needed, then, was the path we took to learn what we all needed to learn. Then... today, we need what we need today, not back then.

The people who frustrated me needed to frustrate me. I was there specifically in order for them to frustrate me. They needed to be the ones who were Right. They need to be precisely in the position they're in, to (as I did, and as we all do) reap the fruits of their labors. And to learn from them. And if they do, or don't... not my problem. I got enough of my own without worrying about them getting their "just desserts." As a character on Babylon 5 said, "Just think how horrible a place the universe would be if you actually got what you deserved."

And that's why I, and yes they, all came to this incarnation. To learn what we need to learn. Whether it was (is) convenient for me or not.

Now, how/why did we get put here? Whose choice was it, God's? The Universe's? Spirit's? Our own? (Some people like to say that we choose our parents...)

I have no idea. That's above my pay grade. A friend has told me "I've been born and died before, I just don't remember the details." And besides, I'm not in this incarnation to debug the incarnation machinery or assign credit or blame, see "above my pay grade" above. I've got enough to do just living in this MS-ridden incarnation, and MS or no, to help those who need me to help them, and to be helped by those who need to help me: In whatever way I can, in the way that is needed for me to help or to receive help, to make this a more beautiful, loving place. As for the rest of what I don't know anything about, I'll get the answers...

When I need them.

And hell. one more example? Treat? Again, poking around YouTube for it, I hear just the first chord, and the tears begin flowing... the Fantasy and Fugue in G Minor. Bach fugues often get names among the Music Folk, such as "the Little," "the Last Judgement," "the Wedge," things like that... this one is "the Great." Virgil told us that once, when the fugue began, he began astral projecting and flying around the room.

And when I heard him play it this piece live, with his amazing light show, for the first time... so did I.

And so may you.

Enjoy the trip!

Thoughts, and too damn many notes

Well, I had to get the gloom and doom off the blog's front page, so here's something different.

We're going out to lunch with some wonderful friends, today. A charming dim sum place that gives you choice of tea to go with your meal (jasmine? oolong? pu erh?) and, I think, not so much if any MSG.

We'll see how well that does. I can only sit up for so long, nowadays, very different from my 15-to-18-to-20-hour work days. The latter of which, you can be sure, I do not miss.

Still got to get back to writing for band... I think I'm getting closer to that. A thought was that maybe "warming up" with smaller works mightn't be such a bad idea, I'm poking around looking at maybemaybemaybe some texts from Hildegard von Bingen (composers do love using the works of lyricists who lie in the public domain, which given her dates, definitely contains the work of Hildegard).

You can see why I think "warming up" might be something worth considering... here is just a few measures of the Big Project that I'm currently working on (wanting to work on, praying to be able to work on):

This is a preview of one movement; the original concept for the whole work was that it have four movements, each with its own dramatic theme and accompanying unique musical stylings. This movement is about a storm. Storms take a LOT of notes. A whole lot of notes. You can also see why someone who can't sit up for long has ... difficulties... writing music like the above.

A lot of notes.

If I were living in the compositional world of "Writing 'Come to Jesus' in whole notes," that'd be another thing. (And oh yeah, for you not-that-technical music folks, there are still instruments not shown that kinda flew off the bottom of the screen, and each line often carries the notes of two parts, so instead of sorta-kinda-roughly around thirty parts, we're looking at around sixty parts. And there are the instruments like the organ that take three lines, and the percussion section which has a trailer-truck full of instruments which may take multiple, or many, lines.

Takes a whole lot of notes to write a storm for a big band.

Just in writing about this, I've developed a headache, and I'm already unhappy about "sitting too long." Doesn't augur well.

Plus, of course, we're hoping to have lunch with friends this afternoon, which will require more... uh, I dunno, sitting?

I did some "stay uncomfortably active and engaged with the world" yesterday around the house, just poking around, so I wouldn't be going from zero to long-time-sitting at today's lunch with no "warm up." Today, plan is talk to Garden Guy who's coming by in a half our or so, who thank goodness doesn't need my supervision (or "help," for that matter), and then three hours later, off to lunch. That's the plan, anyway.

Although, in my current world, "plan" doesn't always work very well, because my condition is such a moving target. Is it "hope" for lunch? "Wish" for lunch?

The Science of  Mind church says, "Thoughts become things." So, for today's lunch, and all other activities, let's start simply with ...

Thought.

Clusterfuggery

Oh my... well, let's see...

Nothing makes me feel better. 

Nothing.

Spasticity and pain have sometimes been 86'ed by the correct herbs, but if they're not correct for today, or correct for what's wrong today, they don't do much, if anything at all.

Oh, what else?

I can't pee without catheterizing myself. If I've tried "too soon" after the last time, I can't even get the catheter in all the way, much less "through the prosgate" as I call it (the prostate sphincter at the bladder).

I can't poo without pu erh tea (no connection, as far as I know) to get things underway, if it works at all. Which it hasn't today.

I can't walk. I can barely wall-walk.

Other things that I'd love to use to pleasure my wife, I can't. The system doesn't work. At all.

I'm in pain, either most or all of the time.

I'm cold, either most or all of the time. So cold that I shiver so much that it makes catheterizing difficult. 

I try to stand up to brush my teeth, if for no other reason, than to practice standing up at the sink while I'm brushing. Which I can do... sometimes. I'm gonna head for that, when I'm done here.

I can't play the organ or piano any more. You need your feet, you see, both instruments have pedals for different purposes. I have sat on an organ bench just to poke at it or to make use of the "auto pedal" feature so I can have a pedal register available via the manuals. Designed with pianists in mind, I think. Anyway, I nearly fall off the bench every time I sit on one, unless it has a back, which lots of organs don't.

I have a connection who has a connection to someone who would let me poke at the organ in Disney Hall. A real mufu organ, from what I know of it and the builder. I don't think I can get at the console, I may fall off the bench, and I can't play the pedals, at all, even to stand on one note (required for the opening moments of the Toccata in D Minor, one of Bach's most famous organ pieces, which in the past I've played for screaming four-thousand-person audiences. But even to try it out, I probably can't.

Often, I can't bear to eat. If I try, I can't eat much. My wife and I are hoping to have lunch with some friends later this week, and I don't know if I'll have enough energy to actually enjoy it. 

Oh yeah, I forgot. Just sitting in my wheelchair, in any chair, is often quite uncomfortable. I have no idea why. Or, more importantly, how to make it stop hurting (see above, "constantly in pain"). Which especially sucks because if I want to write music, I need to sit in a chair so I can use the typewriter keyboard and the piano-style keyboard, one with each hand, for data entry. And oh yeah, I need to have the energy to actually do the music writing.

Which nowadays, I generally don't have.

I've tried a medical-herb combo that one doctor says "don't do that one" and another one says "do more of that one." Right, specialists with diametrically opposing suggestions.... just what I need, especially within the context of "constantly in pain" which I also don't need.

Yes, gentle readers, those of you who have been with me a while know I can often find the spiritually-uplifting truths hiding in the challenges of the MS Highway, to find the true gifts of MS.

I'll take them any time. But between you and me, dear friends, I don't regard elimination problems and constant pain as a gift.

Damn it, there is a gift hiding in here somewhere...

Boy, I am SO ready to discover it. If not to full-on enjoy it. 

It's definitely high time for that!