Monday, December 30, 2013

Coming to terms with what "mortality" is all about. Not about the "death" process, of being mortal and all, but about "Well... this is what I have to work with," the reality of the limitations, the capacity, of this fleshy envelope we're inhabiting. For the moment.

Coming to terms with things like elimination. In all its expressions. And issues. And issues with my own anatomy...

Being a member of the Cath Club, I am becoming intensely intimate with (parts of) my own internal plumbing. It's hardly as much fun as discovering how one's genitalia work (c'mon, we all discover that, in our individual ways), but it is certainly... interesting. "Oh my, the catheter seems to be stuck there, but if I partially withdraw it and rotate the catheter and then try to reinsert, it'll slide right past the ... whatever it is... and slide nicely up the ... whatever it is. You know, where it seems to like to stick unless it's oriented properly."

But I have been indulging in very individual physical therapy. Practicing perceiving, and taking control of, internal musculature. Control over which definitely makes catheterizing vastly simpler! So there's an example of physical therapy done my way that helps me. Which seems to be anathema to a lot of physical therapists, but I don't care about that.

Yeah, I guess I do... I guess I'm holding onto resentment about said physical therapists, and medical caregivers in general, not paying any attention to me and whatever state I happen to be in. I talked Saturday with an acupuncturist who told me about how doctors nowadays are trained to keep themselves separated from patients; how they seemed to like clipboards, nowadays, to have something physical that can be interposed between them and the patients they're supposed to be


for. (Ah, there's the "C" word again...)

Yeah, I can care about my wife on the other side of a wall, but my first preference is to get rid of the damned wall so I can actually touch her and care for her. Hand her a cup of tea, even.

But this is a pattern I have seen all over the place... "Get out of my way so I can solve my problem my way." I'll buy that from a heart surgeon telling someone to get out of the way so they can operate on a heart while surrounded by non-surgeons, but man, if your job, if your primary reason to be there is to make that person better, that person's problems are "your" problems. YOUR problem is to make THEM better. Not to change their statistics, but to make them better.

Why is meeting someone at their point of need such an inconvenience? Admitting that someone else has needs that matter, because they know that how they feel matters.

And this is one of the many logs I have to get out of my own spiritual eye... to look at someone who cares about their own needs above all else, and denies the needs of others, and (what really pisses me off) to deny that meeting their needs at their point of need can be a life-changing gift, and to not even acknowledge my own need to meet others and help them transform themselves, and see how they have transformed and value that transformation...

But I haven't quite brought myself to forgive them for caring about what they care about for their own reasons. For not seeing what I see. Has nothing to do with "not agreeing with me," my own annoyance is at people not seeing what I see.

Oh there's an idea. For me to admit "I don't know everything. There may be something that I don't know, which matters very much. And the people I'm annoyed at may actually know these invisible-to-me things. So they're the right ones, not me."

Amazing things, this MS Journey is showing me, about myself.

Which really is "the THING" about MS, isn't it... teaching you things you never realized, about yourself. Yeah, we concentrate on whadamI-gonna-do about the walking or the wheelchair, the car, the diet, the catheters, the (God preserve me from them) DMDs or whatever else we've been given to take today, the reactions of our loved ones to our own situation, watching ourselves saying farewell to... well, pretty much anything, feels sometimes like "everything," that we have (as we amaze ourselves constantly) grown accustomed to, become reassured by, come to take as a "given" part of what makes me into "me..." It seems to be all about lessons.

Lessons that I didn't think I needed, but are coming my way anyway, and given how hard they are to accept... I guess I did need them, didn't I?

I have often said that "Life teaching you lessons works like this.... First, a tap on the shoulder. Next, a firmer tap. Next, a smack. Then, escalations... something right in the face, something falling out of a buildings, you are definitely gonna get hit big by the lesson life is trying to teach you until you learn it. Then, no new pain! Until the next lesson, that is..."

Well, MS is one hell of a lesson. And one hell of a gift, too...

"Here's your gift... learn this, NOW!"

And, it just keeps coming... the gifts. The demands: "Learn this now, or you're so gonna pay." I wish MS were an actual entity, that I could at least ask...

"Could we maybe try something... different?"

Not an option, I guess. As Super Chicken said in the cartoon days of my youth, something that's quite pertinent to the repercussions of our choice to incarnate in these bodies at this time:
You knew the job was dangerous when you took it.

Monday, December 23, 2013


My wife's 81-year-old mother is visiting us for the holidays. I told her a day or so ago that one of the best things about living with The Disease is that it made me more sensitive to how amazing her daughter/my wife really is.

And she really is inventive, and resourceful, and caring, and amazing.

And being more sensitive to her really is one of the best things about living with The Disease.

Not that I'd dump The Disease in a quick second if I had the opportunity.

But I'd keep the sensitivity to my wife. Who deserves to be appreciated for the "wonderful" that she is.

And though I'm quite positive that she'd be just as wonderful if I wasn't wheelchair-bound with her doing all the… well, everything that I can't do for myself. And that she'd be just as happy not to.

But she is wonderful, and will always remain wonderful. If not ever-increasingly so.

The best gift of MS… sensitivity to those who are sensitive to me. To treat them with the care they deserve, and to appreciate them and thank them properly;  they are always so generous and caring.

And if that isn't an interesting challenge… to be ask kind to others as they are to me. And to be kind to others if kind understanding is what they need.

To give generously, to those who deserve it and those who just need it.

The same challenge that we get from, y'know… life?

So, gentle readers, I pass the challenge along to you, whether you've been accessorized by MS or not.

Give generously.

Let's see what happens!

Thursday, December 19, 2013

An interesting question, as I look back at my own internal processes. Which is setting off more interesting questions.

A friend tells me about things that are going on at the place I used to work. I get interesting reactions to hearing the news… For example, "You're doing WHAT?!?!? You could have something significantly better and instead you want WHAT?!?!?" And also, at the same time, a quieter version: "Oh really. You're doing THAT. You could have anything, can you chose THAT. Fine… damn, I sure got out of there in time, having to deal with that would kill me."

Another question percolates to the top: "And the reason that I care about this is…?"

But as various people have told me, I gotta stop paying attention to The Coconut (insert the wooden sound of me knocking on my own forehead), it's not about what It thinks. It's about the heart--no, the Heart, the Emperor of all the officials--and how it feels.

So it's very much supposed to be a "how do I feel" question, not a "what do I think" question.

And what I feel is actually quite interesting..."interesting," being I guess, an "intellect" word not a "feeling" word, so I guess I'm still very much imprisoned by my preference for The Coconut. But thinking about things, I've rehearsed for way too many years, being honest about feelings, apparently I haven't practiced that enough. At all…? Yes, at all.

This was a huge source of dissent between myself and The Enterprise, the faceless, nameless Monster That Never Breathes that actually runs the day-to-day of the organization. I can give you a choice that'll solve all sorts of problems, I say to myself. "Yeah, but we want our option," The Enterprise says. Well, that'll make you happy, but it'll mess up everyone else and cause all sorts of problems and make all sorts of people do all sorts of extra and pointless work, so it's actually a very poor solution. "Yeah, but it's our option, that's the one we like," The Enterprise seems to say.

Tell me what you want to have happen and leave the method to me, which I understand better and which better understanding is why you hired me. "Nah," says The Enterprise, "We know what we want. Our way."

The last word of the Coconut: Well, it seems that only one of us can be happy. Me, or The Enterprise. Do I care whether I'm going to suffer? Or the people I was trying to protect? Hell yes. Do I care if The Enterprise is going to suffer? No. Not even a little bit. The Enterprise isn't a person. The people who regard themselves as The Enterprise, I don't care about either, because whatever they ask for, They won't have to suffer through. So yeah, I suffer a lot, other actual humans are going to suffer (whose suffering it'll fall on my head to address), and them I care about. But The Enterprise and it's pseudo-sufferings? If they're not going to translate into real experiences of real humans… no, I don't give a @$@#$ what The Enterprise feels.

Which doesn't have a lot of Heart in it, does it? "I really don't give a s--t about what The Enterprise thinks is going to befall it, especially because it in truth won't happen," doesn't really fall under the category of "tell the truth with love."

So, what do I feel?

I feel dissed. All that work I did on [fill in the blank] for [do the math] that many years, and there were quite a few of both, just doesn't matter. It's the same problem: I showed you how to do it in a way that solves problems. You don't care. You want a way that creates problems. That creates poor solutions. And not just "dissed"… I resent it. I resent being told (or so I think, at least) that what I did wasn't good. It's not worth repeating or building upon. We have a better idea (I hear that being said). Your ideas, no good. Our ideas, better.

Yeah, well, as may be, but I've been doing this stuff for decades and you've been doing it for… never? But you know more than me, it seems, even though you have zero experience in the consequences of your choices.

Yup. I'm angry. Very angry.

So, there's an immediate project. Let go of the Coconut. Embrace the heart. Tell the truth; especially the truth about The Emperor, the Heart.

Do I need to care? As far as it involves engaging the Heart, yeah, but let's start with telling the truth about how I feel.

One thing at a time… Well, there ain't nothing to be done for my neurological issues, but creating problems by clinging to the Coconut rather than embracing the Heart? That, I can fix.

If I choose to...

It's so easy. And so hard.

Wednesday, December 18, 2013

Non-solution solutions

Seven days before Christmas, it is…

I did manage to create a new arrangement for the choir I used to sing with/for, I haven't heard that it worked (or didn't) but I'm sure it did (or didn't).

I've been playing Christmas Eve gigs for well over thirty years. Sometimes multiple services in one night. Once, a couple of weeks in advance, taped for television to air on 12/24 (but not recorded that evening). 

And this year, I ain't doing anything. I ain't even going to that service, or any other. 

Because, right now at least… as Finn the Human said so eloquently, "I'm done."

And I don't really know how I feel about that. I have gotten so much "juice" out of other places, people, groups, whatever, just giving me complete "go" to "make some magic."

And not only am I dealing with not "getting the juice," but dealing with caring about … not caring.

Again, do I actually not care, or am I in a new-and-yet-accustomed kind of denial?

I don't know.

This week's dharma talk at my acupuncturist, was about paying more attention to the heart than to the head… Head wants to understand, needs to understand, but the heart… just knows. It already knows the truth. It always knows the truth. But it doesn't "understand," that's a head thing. And trying to find head-style surcease from the heart is a non-starter. 

A "no-brainer," one might say.

But that's an interesting call I've been receiving… a lot… to quit trying to get the head to "fix things" by "understanding" them. But instead, to connect the heart--the Heart--to the Utmost Source.

Yeah, that's easy. Except it isn't.

Except it is.

As long as I quit trying to "understand" at it.

Now, that's a challenge…

Except it isn't.

And trying to make it into a problem to be solved by throwing head-style "understanding" at it… only makes it worse. The solution… isn't a solution, because there isn't a "problem."

Never a dull moment, eh?

Thursday, December 12, 2013


Now here's an interesting question… Right now, I'm going through exactly the same symptoms/situation that I did in college. In 1980, I believe… I nearly lost a semester. Spend the day in bed, on my back. I made it out of the room for food and to rehearse in the concert band, as simply playing music (especially that music, the stuff we were going to be performing) was just about the only thing that made me feel good.

Anyway, eventually the sick (or whatever it was that had flattened me) wandered off and I was somehow able to finish the semester. Well enough to graduate, at least.

But anyway, here I am, full-on diagnosed with MS, and having exactly the same experience as I had nearly thirty years before I got The Diagnosis.

So, am I having an "episode?" An "incident"?  A "relapse"? As far as I know, I've never had one, since I don't really know what one is… but if it is, it means I was having relapses of The Disease thirty years before I received The Diagnosis. Which comports with what somebody said about my most recent MRI  ("those marks are the signs of secondary progressive," they told me, which made no sense at the time since as far as I knew I'd never been anywhere but "primarily" progressive, since as far as I knew I hadn't been anything but "progressive" since the day I was diagnosed.

But having had "an incident" years ago comports with my Primary Guy's assessment that I may very well have had MS symptoms long before I was diagnosed… I just didn't see them for what they were.

So what does that all mean, then? As far as I can tell, nothing. I'm quite certain nobody would have given me The Diagnosis in the 80s, since even then I wasn't having any of the muscular-control data-corruption problems that set me on course to The Diagnosis until early 2000's.

And as Aslan said in the Dawn Treader book, "No one is ever told what might have been."

So then, in the meantime, drink tea, meditate, try to write music before I flee to the bed. Which happens much more quickly than I'd like nowadays… Maybe try to catch some sun outside. If there's any to catch; there was first thing this morning, but now it's just gray.

Which I'm sure I could use as a metaphor for my life, about now. 'Cause that's pretty much all I see, nowadays.


Sunday, December 8, 2013

One thing at a time

Days of doing much and doing nothing.

Today I've tossed some laundry into the washing machine. Took some clean towels out of the dryer and put some of them away, stacked the rest on the top of the dryer, who knows? Some of them might get put away too, if I can figure out where they go.

Earlier this week, I made green tomato pickles, which taste like they'll just keep getting better.

And there's the washer alarm… time to dry!

[A brief pause, in our blogging festivities…]

And we're back.

In transferring the clean wash to the dryer, I needed to get out of the wheelchair enough to stand up to reach down into the washer to scoop up the to-be-dried stuff. Which, enjoyably enough, I was able to do well enough! But I did wonder, when it's finally time to replace these appliances, whether we'll just bit the bullet and go for front-loaders that are front-loadable from a wheelchair.

I had dreams of replacing our stove/oven with something with hotter burners on top and a nice convection oven for bread making. Well, stovetops and wheelchairs gotta be executed VERY carefully, and since I've been pushed away from gluten (my herbalist said that gluten may not be air-quotes "bad" for me, but in his words: "You can do better," I'd have to go into non-wheat-flower baking big time, and experimenting with non-dairy baking plus non-gluten baking plus whatever you're cooking with assumes you can get at the correct angle to stir it and form the whatever-your-making which, as far as I know, is delightfully straightforward from a standing position but I'm not sure how to do it from a wheelchair even given tables at the right height for such things, which we don't have anyway, so…

We'll wait on the non-dairy non-gluten baking. And here I was plotting zero-dairy scones as my first try… Which, I may just up and do anyway… someday… but that's for another day.

Pickles I can make, apparently, much more simply than bread or pastries or all sorts of other things. One thing at a time, it seems.

And "doing nothing?" Yeah, that's very attractive right now. I'm hoping to spend time at the computer for the moment, but who knows how long that'll last before I give up and just lie down. And maybe sleep.

Which I do a lot of, nowadays. Lie down, close my eyes, and maybe sleep. Maybe.

So, we'll see how long this "computer" binge lasts this morning. And how far I get on the music I'm working on, I'm trying to get my "concert band" head back on so I can go back to the Big Project that I envisioned over a year ago.

One thing at a time..

Thursday, December 5, 2013

Compassionate conversations

I don't remember who said this, but they called for "compassionate conversation" about cannabis as… medicine! Its "fun" propensities are undeniable, and I have fond memories of waiting in line for the original Laserium at Griffith Observatory, watching people scarfing down doses of all sorts of stuff to prepare themselves for the state-of-the-art light show that awaited them.

What a time it was, what a time it was… (I even remember the above graphic as one of their most famous, best beloved, posters at that time.)

But things are different now, and not just at the Observatory. My state is a "medical cannabis" state, and thank God for that, because cannabis as medicine is doing truly amazing things for me--as medicine.

I was interviewed by a local medical-cannabis purveyor, about my experience with cannabis as medicine, and I think it is definitely worth sharing this with you. If you're in a state like mine, and if you've been "accessorized" with neurological nonsense as I have, it is definitely worth having a compassionate conversation about these wonderful, wonderful, treatment options.
Click the picture below to connect with the interview, and see what you think about what might be a new treatment option for your own MS, should you be seeking such things. And who among us MSers isn't looking for something to make us feel… better.

Wednesday, December 4, 2013

It's a gift

Definitely a "down time."

We're definitely in the time of the element Water, which as a Fire person, I find… extinguishing. Even Fire needs Water, to keep it under control and to nurture its parent, Wood. But it is… extinguishing.

I'm writing a little more music, a little more text. Drinking a lot of pu-erh tea, which I can tell is good for me but as a member of the Cath Club, diuretic beverages have their… costs.

Among said costs are new kinds of false data. As a member of the Cath Club, I can be pretty danged sure when my bladder is darned-near absolutely empty. There are just too many "tells" that there is no fluid in there besides a random drop or two; that empty is, well, empty.

So I finish my visit to the Cath Club, I wash and put everything away, and before I'm even out of the bathroom, the "I gotta go!" alarms start going off. Dude, I'm thinking, you don't have anything to go with, what the hell are you complaining about?

This so encapsulates my entire MS experience… Bad data. Untrustworthy data. External observations confirm condition A, and yet whatever nerves are enthusiastically reporting condition B.

Well, I suppose, I can thank my lucky stars that my nerves are able to report anything. Bad data, we can work with, or around; it's a much better circumstance than what "zero data" would mean.

Yeah, it pisses me off, I wish it would make me laugh more than it does, but hey, I gotta admit…

It's a gift.

A weird one. Sometimes an irritating one. A "Dude, come ON!" kind of gift. And still… at the bottom line, if we really drill down and see what exactly it provides...

It's a gift.

You take what you can get in this life, you know?

Sunday, December 1, 2013


A thought, last night.

Every wisdom tradition on the planet speaks of the importance of forgiveness, yet has little to say about the method to do that. The Buddha taught us that attachment leads to suffering, but beyond "just let go," the method is still kinda... pretty... weak.

Last night, I (re-)encountered my attachment to my old employment. I loved--LOVED!--doing theater tech. With what I could do with and for them, together we could make miracles.

And now I can't. Not there, at least. I've been doing with/for them for decades. And now it's over. The last time I was in the room of the theater, I could feel the dissonance between the spirit of the room and myself. I don't belong there any more. The room itself pushed back against me. And yet, I was still very, very, very much attached.

Trying to "unattach" just wasn't working, somehow. Why? Well, I guess, I wasn't really ready to really and truly "just let go," as easy as that sounds. (Easy. Yeah, right...)

But here's the "something new." Instead of "just let go," I tried something completely different.

Give it back.

So, from whomever/whatever/whereever such things come from... With thanks, I give it back. It was wonderful. DAMN it was wonderful. Really, really wonderful.

And now, I give it back. Whoever/whatever/whereever it came from... I give it back. It was for me; now it's for someone else. I give it back, so that whoever needs it can receive it. The place in which it happened... the Enterprise will receive what and who it needs, to take them to the place they need to be taken. The Universe wants someone else to receive its blessings, to lead it where it needs to go, to teach its inhabitants (student, parent, faculty, administrator, whatever) what they need to learn.

I am not the one it needs. And what I can do... is help it find the one it needs. I give it back, with thanks and blessings, and a prayer that those who need it may now find it.

And some very powerful accompanying meditations, trying to help my heart free itself of all the weight it has been carrying around.

This morning, I'm making tea, and I'm thinking "stage tech" thoughts, and I realize I'm having these thoughts just for fun. Not colored by "how I'm going to save them" or "how I'm going to transform them" or "they'll probably want to know/use/whatever" that I was thinking about. THEY never entered anything. All I was thinking of were... ideas. For fun. MY fun.

A big improvement, this was!

So us MSers (and us humans, in general) all lose things we love. So, instead of fighting with yourself to "let it go," instead...

Give it back. With a prayer that those who need it, can now so much easily get it, because you're not hanging onto it and keeping it from moving on to the next person or people who need it.

It's no longer loss. It's a gift.

Give it a try! A space of generosity is certainly more fun in which to reside than loss, and who knows... You may do some good, without realizing it.

Why not share the gifts of MS? Not The Disease, of course, but its gifts?

Time to spread them around.