Saturday, February 28, 2015


The same as it ever was, as the song went. Struggling with the computer, with my physiology.

The MS Society is offering some sort of chat/podcast regarding dealing with bowel and bladder issues. It's really very kind of them, but... what they have to offer that actually makes a difference, I have no idea. Just looking at my experience in the Cath Club... They have a way to get my bladder to be less spastic? Really? And how's that gonna work?

A friend of mine has been in the Cath Club for ten years. He describes my bladder as spastic, but his, as little more than a bag. All his does is ... fill up, then get emptied with the catheter. What is it that anyone can offer that'll change that? Besides "stay away from things that make you go diuretic, which causes the whole "bladder filling" thing to happen more enthusiastically. That, and "if you catheterize yourself all the time, you're gonna get infected," and a recommendation to drink barley tea, which doesn't make one go diuretic but helps clear UTIs.

Not much to say today, certainly next to nothing to report. My mind still works reasonably well, a couple of days ago I helped a friend with a resume & other job-search cruft, but using my handsto type  stuff was, well, really unpleasant because of all the errors that my hands were inserting into what I had hoped would illustrate "good stuff" rather than "execrable typing."

Honestly, if I did zero corrections and just left things illegible, I don't know if that would make me feel different or not. I guess it'd just make things worse, to publish my non-capabilities. on't care who "might see it" or anything like that... more about how **I** would see it, and I already live enough with "hand and eyes are going south," I don't need to drive it deeper home.

Speaking of "driving things home," I don't think I can deal with soaking in the sea of failure, hand- and eyes-wise, so we're done for now. Where ever you might be, stay warm, stay dry.

Seasons are gifts to all of us... enjoy them.

Wednesday, February 25, 2015


Had an interesting chat with my MD/acupuncturist/spiritual counselor a couple of days ago. He told me of a friend of both of ours who has, well, something neurological maybe, but the bottom line is, nobody knows what's up and what's wrong. But they do know he's wheelchair bound, very wheelchair bound, even worse than I am (at least I can sorta transfer reasonably enough, much/some of the time); he spends most of his time meditating, I'm told. Well, when he's able to, at least.

But you know, spending the day meditating doesn't have side effects. Enlightenment, maybe, but that's as bad as it gets. Which, really, ain't that bad.

My doc and I spent a few moments looking over what our bodies have decided that we no longer, or regularly, do certain things. Putting me, and many of us MSers, in the "cath club" because our bladders work... or rather, don't. As one fellow member of the Cath Club put it, "Basically all I have in there is a bag."

If MS actually existed, much less was sentient, it seems as if though what it says to us is "This... (whatever it is)... you don't need to do any more." For things like walk or drive a car, it seems quite an off "take it off the table" thing that I no longer need to do... Emptying the bladder, as with all excretory ativities, is more than kinda biologically necessary. but with us in the Cath Club, we can still do it, it just takes... equipment, skill, good luck, and ... cooperation. Certainly, when I'm working with the bladder instead of at it, things go much more pleasantly and easily.

But it is an interesting path... when the highway is yanked out from under you and heads in a completely different, unforeseen and unknowable direction. One magician tells how Teller of Penn and Teller told him, "Tell the truth... and surprise me."
Well, us MSers certainly have a lot of truth to tell... Often, when people ask "How are you?" I want to answer "How much time do you have?" But being surprised... happens both never and constantly.

Which is, I guess, in its own way, very much a...


Definitely a gift of MS...


Saturday, February 21, 2015

Gifts 24/7

Every evening ends with, and begins with, a checklist of "gotta take care of this" items. Quite often "business-y" things... Order thing X, send e-mail regarding thing(s) Y, take care of technological thing Z. Which was one of this morning's "big things." My "piano" keyboard is not being recognized b, well, anything, as far as key-presses (e.g., press middle C, the middle C gets sent to the music software, and a middle C "comes out," playing sonically or getting entered into the music-notation software.

So, I guess I have to contact the manufacturer of The Thing that I think is the wooden shoe in the works. I could bore you with a list of what didn't work, so it looks like I'm going to have to speak to a human. Which I don't mind and would often prefer, but with These People, first you have to pay for the privilege of talking to a human. Well, paying is very very easy (of course) but their computer seems slow about returning to you the numbers that'll let you in the doorway. 

This has been a perennial challenge... I need someone, I often don't care who as long as it's "the competent one," but generally I need something that's basically very simple. On the level of "Can I please have some salt?" and then I get salt. That's all I want, that's all I need, and you, person I'm talking to, is asked to do very, very, little work. To do which, they are often very specifically, paid.

But beyond the "dude. that's your job" annoyance, generally I'm asking very little, which will return me very much. Such as "be able to write music" or "be able to print out music that I've already written." 

So, annoyance. Irritants. Obstructions. These are side effects of MS, but not its gifts. Or... are they?

Looking back to, oh why not, life, and specifically life unadorned by the MS journey, this is pretty much... Normal. Or as how I've put medical events like "vaso vagal," in very simple terms: Sometimes, that shit happens.

Ram Dass writes about these challenges quite often. This is the work that is set before you; "good" and "sucks" may be true in many respects, but at the bottom line, that's the way of it. Wondering what to do about it gets you nothing and nowhere.... especially, given the basic realities of illness and death, there isn't anything to do that'll do anything about them. But as my kyudo teacher says of the arrow shot, you the shooter doesn't "do" it, but you are called upon to be a fully aware participant in the shot. 
So MS is the gift of an arrow; or the gift of a breeze, or a flower. Pay attention to what is in front of you, and be fully aware of it. Accept... even love... the truth it shows you.

And that is one gift that MS gives 24/7...


The state I'm in is the state I'm in. Might as well speak truthfully of it... As my beloved timpani teacher (now of blessed memory) often said, "Always tell the truth... That way, you only have to remember one story." 
Or as Ram Dass often writes, if you're putting all you attention in to how you wish it were, you may never notice how it actually is.

Tell the truth... and pay attention.

Works out, MS or not.

Friday, February 20, 2015

No side effects except...

Thought I might try to write music this morning. I've hung a kleenex over one eyeglass lens, so now I'm pirate-style monocular, which will I hope reduce the issues with my eyes pointing in different directions, Simpsons-eye style.
Which causes its own problems, but it also eliminates some problems, so... well, we'll see.

Came to a realization yesterday about the way I'm addressing challenges with things like "hunger" and the various biological "yes,eating would be a good idea now" signals. For years and years, decades even, I have become used to certain sensations, various bits of the anatomy communicating with me and each other, signaling "eat now." I've had said sensations for so much of my life they've become functionally "invisible," somehow I just decide(d) that it was time to eat and all would be well.

Well, pretty much "wanting" of anything has also left the building, and certainly the whole "what do you want to eat?" question nowadays is answered with vagueness at best, but certainly not a list of yummy possibilities.

Perhaps what might make dealing with this (as well as dealing with me dealing with this, thinking of the travails my poor wife/caregiver has to put up with) is simply a change in language. Right now, my answer to the question "what do you want for lunch (or whatever)" is "I don't know." This is aggressively unhelpful. But worthy of experimentation might simply be "I can't understand what signals my body is currently sending me, so I don't know what would make it happy."

But the next question to put to myself might simply be, "But what do (not "would," but "do") you enjoy, not in general but today, here and now?"

Also interestingly, I don't go into emotional/intellectual/energetic vapor lock over breakfast. I'm always happy to eat something... I used to enjoy oatmeal, but nowadays I've been enjoying basic breakfast cereal. Stuff that's healthy, not the sugar stuff that was the cereal of my youth.
Although I must admit, I've been enjoying your good-old-fashioned sandwiches. Easy for me to make (not always easy to extract stuff from the refrigerator but if I can get at it, actually making the sandwich itself is quite easy). Sandwiches are very "Adventure Time-ian" but they work, and I enjoy them.
And that's very much a  gift of MS.

Enjoy the simple things that you enjoy anyway.

Go have fun. Enjoy something. A prescription without side effects. Except, perhaps... a smile.

Thursday, February 19, 2015

What else is there?

I seem to be running into a common ... OK, I still say "running" which I haven't done in years and as things seem to be going nowadays, I may never again. As to that, who can say? But for now... probably not.

Spent some time talking with my primary-care MD about my bladder issues... or, as I have said here many times, Alan, whom I have named after a character in The Amazing World of Gumball.
Who, as you might imagine from this picture, isn't always radiantly happy.

Anyway, I said that Alan is doing XYZ, is there anything that can be done about it? The answer came back very clearly: "No." Oh well. Should I call the urologist? The answer again came back clearly: "Well, he'll prescribe things that you don't need and won't work, so... No."Oh well.

Saw my ophthalmologist (who is also an MD with some familiarity with MS people because many of her patients are MS-afflicted. Well, she has an idea about this other specialist who may ... may... have something to offer, but ... No. Nothing to be done. Oh well.
Hands aren't quite at the "palsied" point, but they do occasionally shake a bit, I've got wicked temperature issues, I'm stuck in a wheelchair and being able to "transfer" as they call it, to move ones's self from one chair to another, such as from the wheelchair to the commode, is shaky at best. On good days. Which are always different, in the amount of "good" that may be there on a "good" day. And now, all together.... Anything to be done to make the "good" into "better"?

All together now...

Oh  well.

But the big thing is... that's the way things are. There are many things that can be said about this world, but "impermanence" is definitely one of them. We hope things will last. Sometimes they do... for a while... but eventually... they don't. Beautiful leaves grow; them they fall. Rain falls; then the ground dries up. Children grow; they may make children of their own, whom they do their best to help grow. But at some point, they die. And so do we. Things work; then they fail.

So how, exactly, is MS different?

Well... it's not. We may have a better idea about the ways things fail, but we have no idea why the Failing Things choose those particular ways to fail. Or, something that so many of us hope for, to stop them from failing---that way, at least. As Rick said in one episode of Rick and Morty, "I can't cure death."
So, what is the lesson that we (I) need to learn from the MS experience?

The only permanence is impermanence; don't get attached to things that are constantly in flux because, among many reasons, you'll spend all your time trying to stay attached to something that doesn't, well, stay. Or as Ram Dass would tell us, if you're putting all your attention into the way things are "supposed to be," you'll be paying no attention to how things are.

So what do I have, at the end of the day? As Ram Dass's guru told him, tell the truth and love God.

What else is there to do?

Wednesday, February 18, 2015

You never know

So I had this thought earlier today, how I might take care of some computer & business-y stuff, if not this.

Some music would be nice, I thought. And I get... on-hold music from Social Security.

They send me e-mail. You can get cool things on our website, they tell me! Just click here and log in!

So I do. Oh dear, I forgot my user name. Click here and answer a few questions, and we'll remind you!

So I did, and it indeed reminded me as promised. Worked quite nicely! And here's my username!

So I use that to reset my password, which it does (as far as I could tell). Works quite nicely! (As far as I could tell.) Or so I thought, until it tells me something else...

"Account cannot be found." Ah yes, the account-ID that they just sent me. Can't be found.

Hence the on-hold music, which is perfuming the air as I wait. At least the Disembodied Voice does not tell me that my call "is important" to us... To which I've always wanted to say, "If I'm that important, why don't you answer the @#$#$ phone?"

This we are called to find patience. If the elimination problems, difficulties using my hands, being pretty much confined to a wheelchair, I could keep going---which I'm sure you're not interested in, not like I am...

But what nervous system I have, I'm not particularly interested in weighing down with judgements and grudges... So, the air is perfumed with on-hold music. OK...

Well, that's certainly one of the greatest gifts of M.S....

Finding the "funny" in everything. In everything.

And you gotta admit... there's plenty of "funny" to find, if you just pay attention...

And keep smiling.

You never know where you'll find it...

Monday, February 16, 2015

Wait and see.

Sure has been a while since we "chatted," hasn't it...

Using the computer as I am right now, which in other words might be spoken of as "at all," is pretty much undoable. In typing that sentence, I stopped using my right hand... now I'm only using my left. Until that fails too, that is. We'll see where that takes me.

Was trying to find how to bet OFF a couple of services. Their web sites make signing up of "more" simplicity itself. Unsubscribing is pretty much impossible. I think I'm going to have to speak to a human... we'll see if that is still even possible.

Not really perceiving gifts from M.S., nowadays... I'm sure they're still there, but my perception needs work, I guess.

So... we'll see what happens.

Which is pretty much what my day has on offer nowadays... So, therefore...

Wait and see.