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.

Saturday, November 30, 2013

Latest prescription

My doctor's latest prescription included one very specific word: "Laugh."

So, I thought I'd share one with you! Here's what I suggest that you do: Read the text below, in your best "announcerly" voice. And I promise you, I am all but 100% certain about this, that you (as well as anyone who hears you speaking them) will never, never, hear these words again. For any reason. Anywhere. Ever.

And here they are:
Ask your doctor if sheep placenta is right for you.

Yes, that's a real product. I photographed this on the shelf of a recent Chinese pharmacy. Some places have human placenta on the shelf, even. The most powerful of all Yin tonics, I'm told, human placenta is. Chinese herbalists who use it don't generally tout it very loudly (especially to Westerners, even if they'll quietly label it "placenta hominid") but those who use it, do use it.

But this is the huge difference between the Eastern and Western pharmaceutical approach: The West provides drugs for people, in large not-particularly-differentiated masses. (They won't give MS drugs to "anyone," but they do want to give them to "anyone with MS.") The East concocts formulas for you. Today. Here and now. And be sure to take it now, because in a month, maybe even in a couple of weeks, it won't be appropriate any more, because you won't be the same.

But what about the double-blind controlled study? Well, if you're seeing the right guy, he's living in a world of study, they've got hundreds or thousands of years under their belts in history behind these formulas, where he sees how certain things help people experiencing certain things, and can extrapolate, based on his experience with you, to how those things can help you.

If you're not Yin deficient, there's no point giving you a Yin booster. Pretty straightforward, ain't it? 'Course, that's a qualitative, not quantitative observation, but that's definitely another story for another day.

If you're getting benefit from some drug or other, good! That's the whole point. If you're getting no benefit, why bother? That's not the point, is it?

I used to be on all sorts of "help you pee" pills. They made me nasty loopy, nasty "dizzy" as the sticker on the bottle warned. Caused nothing to full-on malfunction, fortunately, but they definitely caused problems.

Well, turns out, if all you wanted me to do was create lots of urine, how about drinking lots of water, or better yet, this high-grade wild pu-erh tea? Reading the amount that I extract from my bladder with a self-catheter, and how often I have to do it, pu-erh is really good at this. And doesn't make me dizzy, or anything, except happy. Because I like it. And its earthiness is perfect for chilly winter days!

And oh yeah, bowel problems? Things don't like to ... move? Pu-erh is hardly a "man the pumps!" explosive emptier like manganese citrate or the sort of things they like to give you to prep for being 'scoped, but it encourages the system to, well, work. Work the way it's supposed to work. Easily, and pleasantly. And there's definitely nothing wrong with that!

So, go find some good pu-erh (easily available on the web, and if you're lucky enough to find a human at a tea emporium that can help you with it, that's even better), brew it, enjoy it! And laugh. Because c'mon, using tea as both a reassuring beverage and a healthy tonic? Putting the poo in pu-erh?

Ask your doctor if laughing is right for you.

I'm gonna guess that... it is.

And you gotta laugh at that!

Friday, November 29, 2013

Web, music, and overflow

Entering new phases, which are old phases.

And I'm going back to the "sleep all day" way of doing things. So nice to sit at the computer and do some music stuff, even if it's just tidying up some scores and shipping them off for Christmas postlude, maybe. Time to jigger my web site's front page (check it out later today, perhaps I may even have completed the adjustment by then). I had even started work on a Magnificat, maybe I'll get some of that done too? We'll see.

My regular see-him-every-week MD significantly pared down my pharmaceutical load, especially in the "get the bladder emptying" department. "They lover prescribing this stuff," he said, "But for people like you, they just can't help you, there's no point to keep trying." If I want to get stuff moving through the system, all I need to do is drink more tea, which I enjoy anyway.

Urologist talked about the bladder "overflowing"--of course it doesn't actually do that, but for MSers, often what happens is when the bladder gets full "enough," wherever "enough" may be, it starts trying to leak or desperately squirt out at least something. But not to empty, that stuff stays there until you cath yourself.

I can't help but remember Sawajima Mamimi from the anime FLCL, who in the first episode was confronted by a giant something-or-other and kept crying "I'm going to overflow!"
Nonetheless, in the time/energy/whatever currently available to me now, I'm going to jump back to something musical, probably web-site tweaking, and a thank-you note sent via Facebook of all things. Then more music? Who knows...

By then, I may be about to overflow.

Tuesday, November 26, 2013


This is just plain strange.

I'm not "confined to a" wheelchair, but if I want to move further than, say, six inches (not counting "hit the floor" as "moving), I'm gonna use one.

There are things I've been doing nearly all of my life, including play the organ, that I just can't do any more. "Things that aren't working so good" increase in number, and vary, every day.

Working life? Well, that's over. Lots of stories behind that, but the bottom line is... over.

And let's not talk about the various organ systems that are working... "differently" nowadays. Hourly.

And yet, everything has been to put me precisely where I need to be, here and now. There were some emotional/mental/spiritual places that I have needed to go for a long time, desperately needed to go, and what's pushed me to those places?

My current condition.

There are a few things about my life that have never been better, because the place I'm in now took me to the very places I needed most to go.

That's weird. Wonderful. But... I suppose one of the best words is...


(Hell of a lot more encouraging to my fellow MSers than the litany of symptoms and failed medical treatments, I'd imagine. But even if you aren't an MSer, where you need the most to be, the most desperately need to be, is...

Here, and now.

Surprising, no?

Sunday, November 24, 2013

Today's tasks; side effects (?)

An interesting task today. Two, really.

Number 1 is the easy one. Drink a @#$#$-load of pu-erh tea. It often helps the bowels move, and lots of the "help your bowels move" websites sing the praises of drinking a @#$#@-load of water. Besides, the bladder needs practice. I suppose.

And the BIG project: Not look at things, where ever they may reach out towards me (as it were), and not simply say "That [whatever] pisses me off" or "Is a challenge" or "Causes me problems" or whatever. WHATEVER.

Instead, I need to speak the truth: How do I feel?

Not "what does it MAKE me feel," no! Just to simply speak the truth. There "it" is, whatever "it" may be. And then we take "it" off the table. The only question, the ONLY question, is...

How do I feel?

Truth has power, simply by being true. Time to go WITH the flow, not delude myself into thinking I'm playing nicely with reality.

To speak the truth with love.

Because one message I am definitely getting from my... well, whatever body parts are not working as I wish they would, it's very clear what they want.


Does this mean I need to "Love my multiple sclerosis?"


Just to love.

Yeah, I may need [whatever] medical treatments for [whatever] reason, and as the Beatles sang, "All you need is love" isn't quite ... directed precisely enough.

But whatever parts of me there are that are in need... Love is what they need.

So, today's tasks: Keep drinking pu-erh, attend my various elimination systems as best I can, and... speak the truth with love.

I'm thinking... wash your hands, keep the tea water hot, and speak the truth with love, and...

Side effect? WHAT side effects? Besides, you know, truth?

And... Love?

Saturday, November 23, 2013

Metal; releasing

Except for my thyroid pills (which predate the MS crash-and-burn that got me into the hospital, twice), every single pill bottle comes with a "May cause dizziness" sticker. And they all definitely do. Oh BOY do they. I don't know whether to blame the flamingly crappy typing on them, The Disease, age, temperature, or this Apple keyboard which I've always disliked… so I'm hoping to get this out, corrections and all, while I still have energy to sit at the computer. Looks like it could go either way, right now…

Here in Los Angeles, it is finally, definitely, November. And here's the spooky thing… Every time I even breathe the air outside, I go into major Yale flashback. I smell Yale. I feel Yale. I really, really, feel the connection not to Yale that is today, but to my Yale, the Yale that was there in the 80's.

The classical five-element acupuncturists tell us that autumn is the season of Metal; the element that grants the power to let go, to grieve. Letting go is one of the many things that Metal is all about.

And one thing I am noticing of myself, especially at this time of year.. Not only do I need to let go of more things, the things that I need to let go of, I suck at letting go of.

And I feel that I'm not living in nostalgia for the Yale That Has Gone, but I'm full-on attached to it.

And the Metal of the season, especially the Connecticut-ian weather, the very Yale-esque weather, is telling me that I have to let go of it.

I don't know how, yet. And I know that I must.

"Releasing" properly always makes the most amazing things work ever so much better. And now, I have to release this.

I also seem to need to release being able to type without full-on sucking at it, but the Yale that has gone… though the gifts of Yale constantly help me, there are parts of my experience there that I Just. MUST. Release it.

Typing has now entered "no fun at all" and I'm going to finish and go back to bed. But … time to really get into the spirit of Metal, and let go.

Especially because we're approaching Metal becoming Water, and one thing I can definitely feel from the Metal: even IT knows that it's time to let go and say goodbye. Because even an Element needs to know when its time has come.

Metal; mind; improvement

Well, that's quite the combination.

A bit of bladder-related education. I'm currently, and probably will be from now on, in the Cath Club, for proper and 100% controllable bladder emptying. 

But here's the thing: Bladders like mine can, according to my urologist, "overflow." Not literally, of course (oh boy, that'd be "exciting," wouldn't it?) but when the bladder hits a certain capacity, whatever that may be--and unique to each bladder, of course--it'll just start emptying itself. Not completely, just "some," whatever that may be. It might explode with excitement. It might just dribble out. But that's the "overflow," overflowing, but not emptying. At all. So you go for the cath, bring the bladder below the threshold or better yet, down to functionally empty, and poof! Leaks, gone! Exploding, gone! And all that stuff will stay gone, as long as bladder is empty enough to keep it below said magic number. 

And of course, like all things MS, how often you do this is up to you, and your bladder. Every four hours? Every three? Every six? How much [fill in the blank] are you drinking and how diuretic is it? All sorts of complicating factors, but just be sensitive, and when the "Oops! Gotta go THIS SECOND" flags go up, give it what it wants, and reach for the catheter.

Because the Thrall of the Antichrist Insurance Company didn't think I needed the catheters that the MD under whose care I fall and, unlike them, who has watched me void, knows that I need a certain type and prescribed them, of the type and quantity that he as a person who KNOWS ME regarded as important, I'm still waiting for them to cough them up. The Catheterists said it'll be here Tuesday… I gotta do a lot of catheter washing in the meantime, something my urologist says I can do but the catheter manufacturer says not to do. Having tried it, I can get three, maybe four uses out of one, but once these are gone, they're gone, and wheee! I'll weeeeeeeee…….. 

But here's the spiritual thing. I've been doing a lot of intense spiritual housecleaning. Getting out of my soul things that just don't belong there any more... 

Which is what the large intestine does for us all. The classical five-element acupuncturists call this official "the Drainer of the Dregs," which is pretty much what the physical large intestine does too.

And not to put too fine a point on it, I needed to take a pretty severe spiritual "dump," and get some things out of my mind, heart, and spirit.

And here's the weird thing… I suppose not really "weird," but yeah, weird…

I had to be manually deimpacted (yuck) multiple times in the hospital, have had to do it for myself (double yuck), and in the hospital had to have more than a few enemas (yuck again) to get anything out. Nowadays, yes they do have me on stool softeners and that sort of stuff, to obviate the impaction, but since I started really cleaning out my mind/spirit and letting go of things in the spirit of the season of Metal… I haven't returned to "flawless and effortless in every way," but at least I have been able to empty myself without requiring the least assistance. Doesn't always happen at the same time of day, and my GI guy told me that anything between twice a day and once every two days qualifies as "normal," but going at all, without intervention, has been… wonderful. As a floor-mate of mine said in college, "Sex is great, but nothing beats a really good s--t," and dang, was he right.

The Science of Mind church folks say "As a man thinks, so is he." Apparently, as I've just discovered: As a man thinks, so poos he.

You won't find that in the writings of Earnest Holmes, at least I don't expect you will, but at least for me… it works. 

So, change the way you think, and everything will change. Sometimes in the most surprising, and welcome, ways.

Next on the list: forgive my body from "going south" as only MS, and age, and life, can take it. Today I'm able to stand up long enough to turn my computer on, and even with my hands not doing so well with fine motor control, my hands are doing better.

Improvement is... improvement. With no side effects beyond...


I'll take it.

Monday, November 18, 2013

Thank God, even for...

Some things you don't appreciate until you don't have them.

Or sometimes, until you lose them.

Corrie Ten Boom told a story of her sister in the concentration camps saying "Thank God, even for fleas." The fleas scared the guards away, so they actually gave the prisoners some breathing room.

When one's elimination systems don't work right, and one simply can't get rid of what's no longer needed... that's not good. At all.

But when you haven't been able to go for days, and you finally do...

Thank God. Even for poo.

There's no other way to say it.

But today, I am definitely thankful for what has finally gone on its way.

Some things you don't appreciate until you lose them.

But today... Definitely, I am thankful. As well as a few pounds lighter. But foremost...

I'm thankful.

Friday, November 15, 2013


This will easily be my darkest blogging day.

My last conversation with the internist basically recapitulated the words of Jon Stewart: "I got nothing." Or in their case, WE got nothing.

There's stuff we can give you to help your bladder, but they'll only do so much  good if the "wiring" causes the bladder to misfire.

There's stuff we can give you for your bowels, but they'll only do so much good if the wiring causes the bowels to mis-, or in my case non-fire.

I am totally not an invalid... but today, I feel like one.

There will be a gift hidden in this. One gift has been gaining new understanding of my wife and our relationship, that I never would have been gifted had I not been in this immediate condition. I know that I was gifted by being booted out of my former employer, because painful as it was to say goodbye that way, it was definitely time for me to leave. (And from what little I hear of the place, oh GOD was it time for me to leave before "now" happened.) But the gift... I don't see it.


It is clearly time for me to change into something different. What, how, I don't know.


But right now... spirituality and denial in all its forms aside, life pretty much fucking sucks right now.

There are ways in which it doesn't. Those need to be as true as the suckage is. They are. They are. But they're not connecting to my heart, the way the medical suckage is tonight.

Oh, I'll definitely be here tomorrow, don't worry about that! There are some conversations with the "discharge planner" being prepared, and those'll definitely take us somewhere different. Where, I don't know.


But I would sure love to feel less an invalid. Which I don't.


Thursday, November 14, 2013

Happy ending........?

Still in the hospital. Where "this MS thing is different every day" finds all sorts of new demonstrations...

I've been using a "condom catheter" for several days, to get around my bladder's non-cooperation. It's also called a "Texas catheter"... nobody knows why, but many of them say it's a very fitting name. There was a malfunction one day that caused it to become a plug rather than a hose, but thankfully that has been remedied.

One of the neuro's here got me going with IVIG, which I've been tolerating extremely well and that may actually be helping... simply the act of "standing up" is significantly easier than it was before I started.

He's also talking me into going for Ampyra (why the manufacturer's want it pronounced "am-peer-a" than "am-pie-rah," I have no idea) once I'm outta here. The hospital pharmacy doesn't stock it (no surprise there), but he says it'll be easy once I get outta here. And it's oral!

It's not a "disease-modifying drug," it's actually supposed to fix specific things. To use the electrical-system metaphor, if the a nerve's insulation is bad, this will try to repair it; if the core "wire" is bad, that, it can't fix.

And especially reassuring to me, its description doesn't involve "is thought to." I hate that "standard verbiage." HATE it. "So, you're telling me that you actually don't know what it does?"

I told the doc that I live in fear of discovering the new turn-your-brain-to-jello Tysabri, that everyone I know on a "standard MS drug" spends six days wracked by the way it makes them feel but then gets one good day, after which the cycle repeats... infinitely... and the MS never gets better. He says that doesn't happen with Ampyra, and a toxicologist I know who works for a Big Pharma said that he would take it, so I think it'll be OK. (Toxicologist, by the way, described what he did as being a pharmacist who only saw side effects.)

And the very first TV program I saw this morning was the greatest cartoon ever made: What's Opera, Doc? I'm hoping that this augurs well for the rest of the day...

Except the final words are, of course, "What did you expect from an opera, a happy ending?"

Well, I certainly expect one....

Monday, November 11, 2013

Points of need

Well,  here i am in the hospital again. Another meltdown.

I'm currently getting  IVIG. On day two of five, then to get another infusion next month. Web tells me that if it's going to do anything, it'll take a month before we see any cyanges.

Neuro guy also wants me to think about Ampyra....  again, according to the web, it looks like it works, or it doesn't. Makes you sick, or doesn't. Gives you seizures, or doesn't.

Now, I understand that  drugs have side effects for the people they effect on the side. And that there's no  way of knowing whether you're gonna be one of the effected unless you try it.

But none of this MS-drug-crap makes me want to try ANY of them. C'mon people, get a clue! If I went to a restaurant and someone said "You're gonna love this stuff! 'Course, it might make you go blind," I don't think I'd eat there. Or would anyone else... Chef friend of mine said, "We have two jobs: Make good food, and make money. If we don't make good enough food, we won't make any money. If we don't make enough money, we won't be able to make good food."

Now, how would the "MS industry" do if THAT is how they approached treating this disease?

MS is so indivisualistic.... what helps YOU helps YOU. Might it help someone else? Maybe, but we don't know. Might it hurt someone else? Maybe, but we don't know.

In the meantime, the way my bladder and bowels are [massive air quotes] "functioning" is.... not to design specs, let's say. GI Guys are trying various things, including erythromycin. Bladder Guys are trying various things. At least their drug choices aren't rife with  "makes your liver fulminate" side effects.

Yes, "I can't change things" is a very Zen thought, one's attachments are immediately revealed. But here, I'm attached to being able to pee on MY terms. Being able to poop on MY terms. When those are no longer "attach-able," even functionally.... it's hard. DAMNED hard.

And one more thing I'm having a VERY hard time dealing with.... it's the health-care people who aren't willing to accept MY experiences. Physical therapy here, as it was administered to me, once we weren't doing things like chair-to-bed or bed-to-chair transfers, was ANTI-helpful. They were completely unwilling to accept my own need to understand what I was supposed to do before I attempted it; until I knew where my feet were supposed to go and where my hands were supposed to go and I felt safe trying it, I couldn't even START doing it. They just wanted me to follow the directions. Well, dude, if you can't explain it well enough for me to understand the operation, that's on YOU, not on me. And some of the PT sessions didn't help me, they robbed me. OK, so I practice standing for X minutes. Well, that was too long, because now I can't stand any more. For the rest of the day. Sometimes, for the rest of the week.

God damn it, I can tell IMMEDIATELY when something helps or harms me. If something is a proper fit. When I started kyudo, they showed me the Federation style. Bad fit. BAD fit. I moved to muyoshingetsu ryu, and INSTANTLY it was a correct fit. Iyengar yoga, I instantly knew was good for me. And felt GREAT after even the shortest session! Would I do more of it if I could figure out how or where, and didn't need to worry about leaving puddles? Frak yeah! But THOSE PT exercises? Nope. Not a chance.

PT is, I think, geared to help people with muscular problems. Not neurological ones. Nerves have different problems, they need to be retrained into adaptability using different techniques. Muscles, you can build. Make 'em bigger. That's how they're designed. Nerves don't work that way, Get the nerve to fire repeatedly, it ain't gonna bulk up.

You need to meet people at their point of need. Not tell them what they need the way you want them  to need it. The PT people don't have a point of need. I do. Yes, I need to be willing to meet them, but I'm willing to meet them only if they're willing to meet me where I am.

So, I'm presuming I'll be going home by the end of the week. I have a list: how am I gonna deal with bowels, how am I gonna deal with bladder, in ways that won't create a mess that my wife  is gonna have to clean up, unless we hire some sort of hang-out chums whose job it is to clean me up.

And dang  it, I want to write music again. Successfully. Without having to bail out or stain the carpet.

One of our  fellow MSers refers to "it" as "the MonSter," Oh boy, do I see where they're coming from.

Friday, November 8, 2013

"Deserve"; fairness

I'm thinking, my current insurance company seems to have done well enough with the hospital, but to someone in the Cath Club? Not so good...

So my urologist--my urologist!--ordered some catheters for me. Which haven't shown up yet because of course, the insurer has to be positive that I need it. Yeah, the person who watched me void and who helped me to learn how to use the catheter saying that I "need" it? Not good enough, someone in the Insurance Company has to decide that I do, in fact, need it.

I tried calling the cath provider. They say they can't do anything, it's all in the insurer's hands. Can you call and see if we can help this along? Well, I suppose we could, they say, but it wouldn't make any difference. They don't LISTEN once they get into this state, we can tell them anything but they won't care. Like they're giving me a bladder infection, because they won't give me fresh caths and making me reuse my current caths which the manufacturer specifically tells you not to do? Yeah, they don't care about that.

I told the cath company there's a special place in Hell waiting for them... a place where they need to cath, but aren't allowed to do so, because They, whoever They are, don't think it's necessary! Even if the people in the pit are begging to be allowed to do so... nope, we'll decide when they "need" it.

Special place in hell, indeed. Which, I gotta say, I'm quite happy for them to spend a lot of time there. A  LOT of time there. I mean, I do try to stay away from the "deserve" word, being as I know I deserve more than I get, but this is different. This is cruelty, what they're doing. So yes, dammit, they deserve it. They do indeed.

And in context, Medical Marijuana California has places you can call, or just use the web, and you'll get stuff delivered to your door. Often, for free! Using, for example, Goddess Delivers. A wonderful organization, with thoroughly wonderful people, and as far as I know, truly excellent products. And this cannabis stuff can make the pain, whatever pain there may be at the moment, simply go away.

I can get high-grade cannabis products delivered to my door with just a phone call. But I can't get my urinary catheters approved, I may not need them, so the saying goes.

Somehow, I just don't think this is fair.

Tuesday, November 5, 2013

New prescription

Some good and bad to share.

Oh, let's start with "bad" for the moment. I'm all but out of catheters, the sine-qua-non of "life in the Cath Club." I called the people the urologist's office said were "The" cath people. Well, I asked for some, but it's taking a long time because y'know, the insurance company, they have to decide whether I "really need" them, or something like that. I told the cath-company people I talked to on the phone that yes I need them, I'm the one driving this bladder around and they aren't, how can they possibly know whether I actually "need" them or not? There's a special place in Hell awaiting them, I said... somewhere they really need to pee but can't, they could if they were allowed catheters but--alas, they don't "need" them, so they don't get them. Ever. And thus, they get what's coming to them.

A long pause over the phone, and then the cath-company person said... "We'll see if we can fast-track this." YOU are wonderful, I told them.

There was just a knock at the front door (which I can't get at in any kind of "quick" response time, house ain't built in a way to let a wheelchair get to the front door at all), but perhaps there are caths waiting there? We'll see when we see.

That's the yukky. Now the good...

I had quite the dharma talk with my acupuncturist/neurologist/MD/can't-say-enough-good-about-him health-care-provider yesterday. I'll spare you some of the technical details, they were hard for me to hear and they'll not really make you happier, so let's skim over the details for the moment... Some attitude issues (mine!) need truth spoken to (at) them... Something that definitely needs consciousness-raising is the relationship between the cared-for and the care-giver. It's hard to be a care-giver, especially with the MS "moving target" of illness, you gotta care for yourself if you're gonna care for someone else, and I need to care for her more explicitly. Not just in "give her a day off just to hang with a friend" when said friend contacts her and wants to go hang (or the other way around, my care-giver calls her friends to hang with her) but it's small stuff like wanting my choice munchies to be obtained and kept handy (to me, of course) in the freezer, and yet when she says "I'm too tired to go get stuff tonight," I need to find it 100% true in my heart to say "Waiting until tomorrow will be just fine." Not harbor resentment about how there's never enough time to get me the stuff I want when I want it, to find it 100% true in my heart to be able to honestly say "I can wait."

When we're in the world of "I need my fill-in-the-blank drugs so I can take them tonight," that's a different place. And yes, there aren't many things that I actually want, and on some level, damn it, I want what I want since I want so little. But really, does that make anyone more enlightened, to insist on wanting what I want? Well, honestly, being honest about it kinda does add to my own enlightenment, but that's honesty for you.

So that's my important project. Finding truth, love, and compassion about things that, were I not to become compassionate, would make me smaller and unhappy.

I think I saw on Facebook some sort of graphic about "The greatest physician says that the prescription for this problem is love. Someone else says it's not enough, it's not working."

So the doctor apparently says... "Then increase the dosage."

And that's my new prescription. With, I'm anticipating, side-effects that everyone likes!

Thursday, October 31, 2013

A gift / surprise

So when I was in the urologist's waiting room, I chat with a mother and 7th-grade son (the youngest of 3, the oldest is going to be heading off to college next year). So I tell the kid some ways to take charge of his own fate in how one (he) approaches his school work--it was clear that Mom was someone who took No Grief From Anyone, so helping the young one to grasp and use his own power, I figured she'd approve (oh boy, did she ever!) and also told her some of the really cool--and really true--things about walking the "college road" simply and cheaply, and how starting off at a community college was not just a cheap thing, but a good thing... "Tell my brother the college teacher who started at Glendale College, and me who got two degrees from Yale and then a doctorate who also started at Glendale College, that community college isn't a good thing. We certainly don't think so... so yeah, go for it!" I smile, Mom smiles. Everybody is happy!

And here's the kicker... I "shared the shiny" as a friend of mine likes to say; I reassured Mom who's facing the Unknowns of College for her eldest, and worried about how the Little One is going to survive middle school (middle child is safely lost in the fog of high school, for the moment, but what I told her about college will definitely return to assist her). Told the child "You do things the X, Y, and Z way, and YOU have the power." Kid looks bewildered that he might actually have power to control his own life, and Mom is very happy for child to hear this and clearly is definitely going to remind him of this in the years to come...

And the reason that I was able to bring this comfort to those two people on that particular day in that particular place, is because I have MS and an oddly functioning bladder and I needed to talk to that particular urologist on that particular day in that particular place.

I was precisely in the place that enabled me to help people because I have MS. And that particular version of MS, that brought me to that urologist on that particular day.

A gift that may very well keep on giving, that I was able to give because I have MS.

That is indeed a very surprising gift. To be thankful for having MS because it catalyzed me helping other people.

As a friend of mine paraphrased the Grateful Dead, what a long strange trip it is.

Wednesday, October 30, 2013

I got an A!

Where did I get that, you may ask?

A delightful visit to the urologist yesterday. I told him how I'm approaching my experience within the "cath club," about what I'm trying, how/why I prefer what I prefer, how/why I approach things the way I do, and he told me (and here's where I got the "A" from):

"Well, you're doing better than at least 95% of the people in your situation." He not just approved of, he loved, the way I was approaching and solving the problems that came before me, and provided really excellent answers to the questions I was having (I think, actually, that he was happy that those were the questions I was asking).

So what am I left with? Yeah, do things the way you've been doing them, here's how many hours to wait between cathing except I should definitely do it, schedule or no, under certain particular circumstances; how to decide whether or not to wait, regardless of what the clock had to say.

So, yeah I'm encumbered by having become a care-giver specifically to my bladder, but y'know, it's really not so bad, considering what else is wrong and needs working with or around.

And... I drove my truck today! Just to adjust it into a better parking spot, but still... I drove it off the property, did a tiny bit of "drive around the street," and parked my truck in what may be as close to the "best" spot it can currently go. Perhaps tomorrow, I'll drive it around the block and see how that's going. Perhaps in the not-too-horribly-distant future, I'll actually drive my wife somewhere. Lunch, maybe. Or even dinner, who knows? Stranger things have happened. But we'll have to see how that works out... spending all that energy to get ready, then get somewhere, then be somewhere, then.... hmmmm.... Oh, let's just drive it around the block first. Maybe to the bank, maybe to the post office. Those'll be difficult enough.

And "hard enough" is hard enough, by definition. And this life-with-MS thing definitely fits well within the category of "hard enough."

Friday, October 25, 2013

I got nothin'

Today is already interesting and full of just-plain for-the-moment-at-least giving up.

I'm living in what the realtors would call a "charming mid-century home." The good news is that all the doors are perfectly lovely to push a wheelchair through... Except, of course, for the bathroom doors, which are each, and identically, just too narrow. Why the architects decided that one size door would be perfect for every last room in the house except the bathrooms, I have no idea. Probably wouldn't want to find out, actually, the world of h/c-accessibility-things being what they are. The floor is charmingly almost level, so when you let go of the wheels, the chair might wander forward or backwards, as the floor would lead you somewhere. Not annoying, interesting. Sometimes even funny! But the narrow bathroom doors... not interesting, not funny. Well, funny yes, partially because I can still wall-walk (or in this case, sinkboard-walk) enough to make it in there. I'm sure even I could find being stuck outside the bathroom funny, but... Really, I've got more than enough things that I find funny that wouldn't screw me up as much as not having a bathroom of any kind immediatelyu available.

I haven't found the strength to even sit in the studio today, even to use the computer there today. I'm sitting in my recliner with my laptop, handling some business (probably gonna order something online) and then, see above under just-for-the-moment-giving-up, I'm going back to bed.

Today I made toaster waffles for both me and my wife, and some bag tea (we're out of the loose stuff I really like, and we've discussed maybe going out for more, should I ever feel good enough to leave the house for such things).

Weather is beautiful. Lovely and autumnal. I don't know when I'll be able to go outside and enjoy it for more than a few seconds. This afternoon? As Aragorn often said in the Lord of the Rings, "Who can say?"

Still recovering from Magic and Meaning, the convention held last week in Nevada. I really, really enjoyed it, and I think from what I heard from my fellow conferees, so did everyone! Below, a quick shot of me, mid-lecture:

One thing I haven't re-aquired, though... Something that my magician friends all have, in spades: They're driven to create. Driven to create. I used to be. Now I'm not. Now I'm going to bed (really am). I may... may... stay up long enough to have lunch. Which my wife tells me I need to eat. Which I don't want to eat. A conflict (to eat, or not to eat? That is the question), one which repeats basically daily. I'll snag a few herbs and then eat, I guess, my wife's basically correct about "Dude, you HAVE to eat SOMETHING," presuming the "keep living" thing is important enough to pursue.

But I'd sure love to rekindle the "create fire." Don't know how. Would love to, but...

As Jon Stewart has been know to say, "I got nothin'."

Well... I don't.

Wednesday, October 23, 2013

Finally, reconnecting!

I have just returned home from a week out of town; a few days at a magic conference at which I was the lead presenter (no pressure, right?) and then a couple of days at what could only be considered a paradigm paradise in the mountains.

The usual re-re-re-re-re-discoveries of "helpful for the handicapped" Stuff which, when tried by an actually handicapped person (that'd be me), are actually not at all helpful. It took a while to explain to the maintenance guy at one hotel that bathroom doors need to be MUCH easier to open from ***BOTH*** sides; make it too hard, and Guy In The Wheelchair finds himself unable to get into the bathroom (not good at all) or finds himself trapped inside the bathroom (differently not good at all).

The paradisical mountain cabin was just fantastic except the handicap-helping things were significantly UNhelpful. There was a wheelchair ramp into the restaurant, but not into any of the rooms, and the "handicap friendly" room we stayed in had this bed that was so far above the wheelchair that "transferring" wasn't even vaguely possible, and if I didn't have as long legs as I do and can sorta-kinda walk as well as I do, there would have been no getting into the bed at all. Fortunately I was saved from difficulties and disaster, but it was weird and took way too long to figure out...and the height of the bed over the seat of the wheelchair would have caused the PT folks I struggled with during my recent hospitalization to completely lose control of all their bodily functions as they tried to call what I had to do to get into bed as a "transfer."

Hm, what else to share? Still doing just fine as a member of the "cath club," having to kinda-sorta empty my bladder with a straw (catheter), I'm back to the urologist next Tuesday where I'll get my swath of questions answered and who knows what else will happen there.

Most interesting thing about hanging with the folks at my magician's convention was that they do what they do because they're deeply passionate about just doing it, if not doing it life-changingly amazingly. God, I love them. But do I have that passion? I thought I might very well rediscover it when I returned home, but right now, this very second... all I want is to go to bed. Which I'll be doing as soon as I'm done here.

Not being able to walk is one thing. Needing to catheterize myself is another thing. Not having any passion, the kind of passion that sets in motion the changing of the world, if not the universe... that's another thing. And that's the hardest of all.

What's to be done about that passionlessness? Something I haven't tried yet, obviously, because if something I'd tried had already worked, I'd be bathing in my own passion and Getting Things DONE! But I don't... and really, really, don't know where to go.

Except at the moment, where my destination is... bed.

And so I go. With any luck, now that I'm back at home with my homey internet access, we'll stay in better touch. And the passion? We'll see, we'll see.

I hope.

Thursday, October 10, 2013

Little gifts

Negotiating the "side effect" waters...

So the "gift that keeps on giving" from my stay in the hospital is a handful of drugs, none of them MS-specific. A few things that do what, I don't know, but they tell me they're supposed to help my annoyingly-functioning bladder. But whatever it is this stuff does, I do know that it's all very clearly stickered to warn me that it may cause drowsiness, be sure not to drive!

Now, it's one thing to wander around as high as a kite when you're comparison-shopping medical-marijuana varietals, but bladder pills? Not nearly as much fun, I'm guessing (what little "thinking" can happen while buzzing on bladder pills). And more than a little odd, especially when you're trying to do something requiring, y'know, clear thinking...

I haven't had the wherewithal to deal with trying to write music right now, I've only managed to sit at that machine very, very briefly, since I came back from the hospital. But, I am trying to accomplish something! For years, I've attended the McBride Magic and Mystery school in Henderson, Nevada (just minutes away from Las Vegas), and for years I've made presentations there, even being the first presenter at the symposium, a spot I might very well be scheduled for this year! No pressure, right?

So I'm practice-giving my presentation over and over and over, not just to rehearse it but to help me find places to fine-tune the script or to cut, cut, cut! for time. Well, that's going pretty well, all things considered, but what I'm really concerned about is traveling to another state while being in the Cath Club.

We haven't really really really decided whether to do the plane or the car... By car alone, it'll take around four hours, door to door. By air, it'll take a half-hour from home to airport, hang in the airport for at least two hours, flight for one, at least a half-hour to get outta the airport and off to the hotel (maybe longer, depending on what else is going on in Vegas that day) which makes the total time into... uh, four hours? At least?

I think one of my friends also in the Cath Club has done so on an airplane, but I'm kinda ginchy about that, and having to explain to TSA that yes, the betadine IS medical and your web site says I can take medical liquids, and no you can't stick the "am I an explosive" test strip INTO the bottle because that'll destroy its sterility which is the only reason to be traveling with it, but I can squirt it into something else for you to test-strip it, and no, you can't have it because if you take it I can't pee, anywhere, ever, until I can find more of it somewhere which will take MORE time and... yeah, maybe the car's the way to go. Besides, with my wife's new Prius, it'll cost less than flying, the gauge on the front panel regularly reports that she's getting between 50 and 100 MPG, which the airplane definitely doesn't.

So, we'll see. In the meantime, it's back to hacking at the presentation, but in the meantime... Do I feel... hungry? Even sort of? Kind of? A little?

That doesn't happen much. But to this I say... thank you!

Little gifts are still gifts.

Sunday, October 6, 2013

Another gift; another surprise!

I'm really quite surprised how well being in the "Cath Club" is working out. I have shied away from it for quite a while, I definitely shied away from it while I was in the hospital, but now that I'm doing it twice a day, I'm wondering if maybe I could stand to do it more.

Yes, it doesn't suck "that much." At worst, it's "Well, that's weird..." and isn't even as annoying as a rock in your shoe. And it may reveal what's going on during certain "I have no idea what's up with that" bladderisms, who knows?

Considering all the weird crap we gotta deal with, the even weirder crap we all have to do, something that is so UNweird that I'm left with the idea to try it more frequently...

That's definitely a gift. Not in the same overwhelming-spiritual-transformative category that many of the other gifts of this disease come in, but...

A gift is a gift. And boy, am I thankful for it!

Thursday, October 3, 2013

Quoth the Narnians

Another venture into the physical, rather than the spiritual...

So, I'm definitely a member of the "Cath Club" now. Sticking a straw into... oh, as they named a "similar" object on the Venture Brothers, let's call it The Nozzle. You know what I mean.
A few things to share that may come in handy for some of my fellow MSers... especially since my urologist says that eventually, everyone with MS eventually gets full-on bladder "issues" and has to deal with this sort of thing.

First thing: There are several kinds of urinary catheters (plus different models for men and women due to different "roads" needing to be traveled between the bladder and the Outside World—Being a Guy, that's the kind I'm familiar with). The kind that YOU need is the kind that works best for YOU. If the insurance company (or whoever) tells you that they know what's best for you, just throw it back in their face—no, they do NOT know. My insurance company wanted to know if the model I wanted was necessary, couldn't I use kind "X" instead? I told the person at the cath company, if the insurance company insists on using their model cath, they're fucked. They're not "wrong," they're fucked. Because I tried the model they like and it does not work. My doctor is asking for the model he's asking for because we tried all of them and the one he's asking for is the only one that worked.

What else do I wish I'd been told? Everyone tells you "you get used to it," but to my experience, you don't "get used to" it, your urethra stops complaining as loudly—which means it gets used to it—and if you have the right model of catheter, it goes through the Prostate Gate easily and does not hurt when it makes that transition. The wrong-model catheters all hurt, and none of them would go through the Prostate Gate, even when the nurses were doing the shoving. I got cathed last week at Urgent Care, and that definitely was no fun at all... But I'm doing it to myself now, and the straw being inside The Nozzle is still definitely more than "a little odd," but that's as bad as it gets, and going through the Prostate Gate is completely painless, quite a nice surprise, actually, as suddenly all that urine that the bladder was unwilling to void itself without help suddenly finds the exit through the straw and away we go!

So always be gentle but always be insistent, that catheter is definitely gonna go deeper in but it doesn't "need to hurt," if you're doing it compassionately enough. Keep breathing! Take it easy, keep relaxing... relax more with every breath, "ouch" or no "ouch" from the catheter being inside. Keep breathing, keep pushing gently but firmly. With kindness! And when you make it through the Prostate Gate (which you definitely won't unless you keep pushing, and also definitely won't unless you're using the right-for-YOU catheter), bladder finally gets to empty itself, which both it and you have been waiting for it to do!

So, my MSer friends, if you get stuck having to do this, which I'm told you all will eventually have to do... just remember the important things: Use the right-for-YOU catheter, keep breathing, keep relaxing, keep trying to piss around the catheter (helps you make and keep yourself internally "open"), and as you gently but firmly but always compassionately keep pressing the catheter inwards—as the Narnians said so enthusiastically during The Last Battle as they headed towards Aslan's country:
Further up! Further in!

Tuesday, October 1, 2013

Less is...

What a day, what a couple of days...

2:30 yesterday, I had an appointment at the urologist's for practicing my own participation in the "cath club." A friend of mine has been doing it for 7.5 years... quite doable, quite withstandable, very much makes things on the whole "better," once one makes it past those amazing moments of insertion.

I should count myself lucky... NASA's Curiosity crew had to live through "seven minutes of terror," I know someone who was in the control room during those very minutes, and what I have to go through will notin'sh 'allah, take seven @$#ing minutes. Although it might be terrorizing, in its own way... For a while, it'll probably take longer than it "actually takes," especially figuring out the final Prostate Push to get the flow finally moving.

I and my long-suffering wife/driver took a trip to Ten Ren afterwards, got a favorite tea and a dinner, even.

That was yesterday... And now, here we are at The Next Day, and I needed to cath myself, without help. Which I did! Took way too long, but fortunately there was not much suffering. Actually, there was no "suffering," as such. Once the cath made it through the Final Gate, that darned prostate, everything was fine. And fortunately, very fortunately, there was resistance and unwillingness but not pain, as such. Yeah, a couple of moments of "Factory didn't design this stuff to have a rubber tube shoved up it," but I'm already seeing the distinct moments of "This ain't gonna be an issue at all!" and "Here's the part where I really don't want to play this game,"  but it's going to be experiment and practice, not regret upon regret. So far, at least... From my mouth to God's ears, as the saying goes.

From God's mouth to my prostate, I suppose, is how it actually works. I'll take that too.

So, bottom line is, something I've been terrorized by, is a non-issue. What's keeping me from full-blown non-issue status is just practicing, which itself is, basically, amazingly merciful. The worst so far is "Well, that's weird," which for "worst," is none too bad!

Us in the Society of Nozzle and Straw, we take what we can get, however we can get it. Because with a bladder that doesn't like emptying, less is definitely more!

Friday, September 27, 2013

Hoping everything come out OK

Well, it seems that physical issues are on deck for today.

My urologist said that eventually, bladder stuff happens to pretty much everyone who has MS. Bladder gets over-enthusiastic and hydraulic/muscular pressure to get stuff just-plain out goes way up. Or, bladder just gives up, and stops emptying. For my convenience, of course, I get both of those things happening. From the urologist's "empty bladder is wicked better than non-empty" perspective, of course, neither of these really works out well.

Which means, of course, that I'm getting membership in the "cath club." Not as well-known, as well-discussed as the "Slug Club" of Harry Potter fame, but from what I understand, there are a LOT of us in that particular club. As my primary-care doctor told me a little sadly, "We're all men. Eventually, this sort of thing happens to all of us."

Now, a friend who has been in the "cath club" for over seven-and-a-half years assures me that once you get over the just doing of it, which is pretty danged weird lemme tell you, it gets easier. The "big moment" for guys is when the catheter pushes its way past the Big Gatekeeper, the prostate... there's quite the amazing moment that Cleveland Brown would herald by saying "And BOOM there goes the dynamite!" And you're finally and fully catheterized, and the pressure is gloriously relieved. And at the end of the whole thing, you basically don't really mind.  

Or so they say. 

We'll see. More training on the "Robert does it himself" will be Monday at 2:00. We'll see what happens.

'Course the last time I tried to do the training myself, I fainted (entirely normal, in the category of "that s--t happens sometimes," almost never happens a second and immediately-thereafter time, but I'm told there's a trick with cold water on the head and neck that will keep it from happening at all), but the passing out freaked out the staff who was doing my training while the doctor was out of the office (his suggestion to make the most of that "open time") and they called an ambulance and I was whisked off to the ER again. Which story basically ended better than my last trip to that location... but both of those are definitely another story.

So, as the saying goes, I hope everything comes out alright... I really do...!

Friday, September 20, 2013

Jon Stewart speaks

Just a quick check-in, 'cause that's about the energy I have.

I'm sitting up, because the PT folks wanted me (us) to spend as much time in chairs as we could, so we didn't wind up spending so much time in beds. I'm probably gonna throw in the towel really soon and go back to bed anyway.

Had quite the acupuncturing yesterday; left feeling better, and not, and better. Which is typical for post-acupuncture feelings. Today? Better a little. Still wanna go back to bed as soon as I can... doing this with you folks is pretty much all I've got to give.

Next Tuesday, a re-check-in with the PT folks, which I have very little interest in doing, given how a lot of what they call "help" doesn't. Although, to be fair, they were the source of many good tips and excellent suggestions. When the tips and suggestions were good, at least. Thereafter, an appointment with the urologist, where I'll be inducted into the Nozzle and Straw society. (Insert tab A into slot B, and all that.) Which, my regular MD told me, has way more members than most people might think.

More acupuncturing next week. Gotta try to get for him the records of my hospital stay, to answer some of his questions about "t\They told you to take how much of that? Why?" So that he doesn't undo something that's actually worth doing, if he only knew what it was that they wanted to do. I have other follow up appointments, but my phone doesn't know them yet and thus neither do I. They're detailed on some piece of paper, whose location is also unknown to me, but my wife is vastly better organized than I am about these things, she knows where it is.

And where am I now, basically? Wanting to close my eyes and maybe listen to cartoons. Even more remotely, maybe music. But with my eyes closed... I don't like using my eyes much, at all. Have a prescription for new glasses, hope to get to "movable" enough to take that in and start the process. But first things first, e.g., see the urologist & his cronies.

And sleep. Lots of sleep.

Music isn't getting written, I can think about things but I can't take the time/energy right now to type them out. As Jon Stewart says, and as only he can say it... Right now,

"I got nothing"

Wednesday, September 18, 2013


It has been quite a while since I shared with you... since I was able to share with you.

Two Mondays ago, I had an MS meltdown. People have called it an "exacerbation..." I wouldn't know, I don't think I've ever had one. It was certainly a strange one. But whatever it was, it was No Fun At All.

My wife took me into Urgent Care, because I needed catheterization. Urgently, as you could imagine.

For "urgent" care, they certainly attended to me non-urgently. I won't call it "care..." I did way too much sitting around and waiting. Sit in the waiting room. Finally get taken into the Care Zone, to sit in another room for the filling out of forms. Which took a while.

Then I was taken to another room, which at least looked more like a treatment room. But apparently for me, it wasn't, because all I did was sit there. In my own wheelchair. For a long time.

At some point, I heard some Medical Types chatting between seeing patients, as Medical Types do. I wheeled myself to the door, and out into the hallway, where I was maybe 10 feet away from the chatting Medical Types.

I said to them, politely but directly, "Pardon me... They call this place 'urgent care.' I need care urgently. I need catheterization, urgently. If you don't catheterize me NOW, I'm going to kill myself. Or you. Your choice." And rolled myself back into the "waiting" exam room.

In very short order, they came and got me. And catheterized me.

Getting people to understand "urgency" is surprisingly challenging, in a hospital. "I gotta go NOW" doesn't work. "I need a urinal, or you're gonna need a mop. NOW." That works. (I know, I've used that very line, in the hospital.)

Anyway, the urgent care folks, in only a few moments, said "You're beyond us. You need a hospital." So they sent me over (no lights/siren, fortunately), and it was a nice quiet night in the ER, I was the only "customer."

So a few days of various medications, including IVs (they leave a shunt in your arm, because it makes it easier for them to use it, and boy do they use it) some rather nasty manual interventions in the "elimination department," and trust me, you do not want details (ouch), and in three days, they popped me over to the Rehab ward.

Very interesting adventures, in a Big City Hospital, and in a rehab ward, where in many cases "urgent" means "I need to get to a commode" or "I needed to get to a commode but you didn't get me there in time and so now you'll have to clean everything." They go way out of their way to keep anyone from getting to "I've fallen and I can't get up."

Big City stuff: Most of the doctors here don't care about you. They care about your symptoms as expressed by your lab reports, or simple binary answers like "Can you urinate?" They not only have no time to talk to you, they have no interest in talking to you, the human. They only want your data, you the data source. Oh yeah, they call you "the patient."  My own beloved private physician-cum-acupuncturist has only so much time to see each patient, I get that. But the acupuncturists can't treat you, can't even diagnose you, unless they can contact you, the whole person. And you don't get up off the treatment table unless and until you're better.

"Better" doesn't seem to be in the vocabulary of the Big City Doctors I've met here. A couple of them are very much healers, who care about you the human, even if they're working on/through your symptoms. But many of them don't... Punch the card with symptoms & such, that's all they care about, PUNCH they're done, and they wander off. Without even saying "Goodbye," much less "I hope you feel better." There's the forbidden "B" word again...

There's a lot about physical therapy and occupational therapy (which, thank God, thank every god, is a misnomer: I was terrified that it'd be all about "going back to your old job," it's actually about self-care like teeth brushing and bathing) that's very useful. That's immediately useful, to people who have been "accessorized" with the wheelchair like me. Here's how to transfer from a bed to a wheelchair, and back again. Here's how to transfer from a wheelchair to a commode, and back again. Very useful, that. Here's how to transfer to a shower bench, and here's the kind of shower bench you want, and here's how to use the shower-curtain liner with such benches, which stick over the edge of the tub and thus across the "curtain line." Here are ways to approach "where does the cutting board go, when you have problems standing at it, the way you've done before without thinking, in previous years. You can tell immediately that it's a good, and useful, and valuable, idea.

But two things become clear immediately: Physical therapy is about physical problems. They don't do well with neurological problems, probably because their toolkit can't address/improve neurologically imposed problems. How exercise works to increase muscle mass or dexterity, this has been known for millennia. Do this, you get stronger. Poof—done! Like magic!

Well, nerves don't work that way. And, more importantly, if my nerves can't make the muscles fire, the known-for-milennia muscle-building techniques can't work. So, as Steve Jobs was known to say, you have to "think different."

Well, they don't. And if you do... they can't deal. With the thinking, or you.

What has been the most interesting thing about the "rehab experience" is my own process. Me, I need to understand before I try something. And what's most important, if my own direct experience is contrary to their explanation, I need to understand. If I understand incorrectly, I'm happy to change my understanding—explain it to me. Especially More importantly, as Jobs might have said, "explain different." For example, you tell me to do X. To me, X feels dangerous. It neither feels efficient, easy, or safe. I do not dispute your qualifications or training, or the evidence of your senses. But the evidence of my senses does not match what you're telling me.

That, they can't understand. At all. They lock up, just keep telling me to do it because they told me to do it.

And that, for me, makes it a non-starter. Ab initio, as my Latin-speaking scholar would say. "From the beginning." Not just a non-starter, non-startable.

As a friend of mine once said, there is only one "rigor" (rigorous thought process). There isn't a different rigor for music and physics. There is only one. And here's where I and the PTs seem to be, sadly, unreachable.

I love my translator (transport chair cum walker, sometimes AKA "rollator"), and for at least a couple of years has been a close and trustworthy friend.
It has brakes like a bicycle, which when you actuate it, work 100% of the time with zero failure modes. If anything goes wrong and I fall forward, I face-plant into a seat. Or, better yet, catch myself on the seat before face-planting. In walker mode, it can't tip forward and heave me over the front wheels unless you go into flaming-moron mode and try really, really, really, really hard to make it do that. In "real world" mode, it can't happen. Admitting that I'm different now that I was then, it has nevernever, failed me. In any way. Ever.

Well, the PTs don't like it. They like the standard walker. It has a narrower wheelbase, no brakes, no seat.
I hate it. My "walking" speed with it is measurably slower. I've nearly fallen FOUR times, trying to use it. I could tell a detailed story of my point-for-point refutation of its "features" and "virtues," but... DUDE. IT NEARLY MADE ME FALL FOUR TIMES. Shall we go over that again, using those charming "psychological acuity" test materials with nice big, brightly colored numbers?

Truth be told, while on the rehab ward, I'd only almost-fallen twice. In very rapid succession. Which makes their "not listening to me"... better? Because I'd almost-fallen only twice?

So, I really wish they would have connected with me. And here I am, typing this from home (finally!), quite immersed in trying to reconnect with reality. (Took me two days to finish typing this, but at least I did.)

Which is, itself, also quite the story... but as Alton Brown likes to say, "That's another show."