Wednesday, December 31, 2014

Fun with barley

The adventures with B-san, or as I've been thinking of him lately, Alan, continue. ("Alan" from the character from The Amazing World of Gumball, the balloon in love with a cactus. The animated Alan has issues... so does mine.
I go into these details not because I'm into "all things urinary," but because my urologist told me that "Everyone with MS eventually goes down this road," so forewarned is forearmed.

So how is the whole thing "supposed" to work, in broad strokes? Kidneys extract what they turn into urine and pass it off to the bladder. When bladder figures out it has whatever amount in it that would be good to send along to the next adventure. bladder sends neural messages to the brain saying "Time to empty!" Brain tells bladder to let it fly (as it were), bladder sends the liquid on its way, and we're all set to start the cycle again. Besides, kinda from a spiritual perspective, urine exemplifies "stuff that I don't need any more," and sending stuff you don't need any more on its way is necessary so that you're ready simply to accept the arrival of next adventure.

For me, the challenges come out of bad wiring. Bladder does what it does but messages to brain are, from the brain's point of view, confusing or even incorrect. Brain tells bladder to do stuff but the messages don't get there and so it doesn't do what brain wants. We in the Cath Club have figured out a way to work around the "there's no way to get bladder to do what you want it to," but the messages sent to brain don't get less confusing.

Apparently, and although I haven't chatted with urologist yet about this, my Basic Doctor tells me that my bladder is spastic (just like so many of my other muscles) which means that it doesn't really expand fully and freely; the other day, I did a nice voluminous cath, lay down, felt Alan screaming at me, cathed again, and again got a nice voluminous cath. Now, if the New Year's Eve champagne bottles worked that way--I'm empty! No I'm not...I'm still full! Have more!--Moët and Chandon would have a very different way of looking at the holiday.

My current approach to the problem is to pay at least some attention to the clock... if I got awakened at 6AM with Alan begging to be emptied, and haven't had anything to drink before, during, or after said emptying, and it's only two hours later, I figure let's try just ignoring Alan's screams. Sure enough, in a few minutes, things cool down, and we're cool again. But that's precisely the way tried to go in the above example of big cath, Alan screams, big cath again, because my version of Alan goes spastic and crumples. I think.
Even as I type this, Alan is whining, ever and ever more insistently. The whole "catheterization" process goes way way WAY more easily when it's cooperative... when Alan welcomes the cath. My GP guy says that the whole plumbing system needs to relax, so that the "screaming" is only sensory not muscular, hence the "cooperative" thing.

And so to come full circle, while I was typing the above paragraph, Alan was most distinctly calling for attention, so I took an "aside" moment to visit the "necessarium" and do the Cath thing, and Alan cooperated and responded happily. Enough lube is important, if you're using coude´ catheters, angle matters too... but nothing trumps cooperation. Happy to play the game urethra, happy to play the game bladder, things go beautifully. And to find the funny in it all, after the initial "emptying," I poke around a bit with the catheter to find the fluid level, and I do, but that level keeps changing. Interior of the bladder isn't like a real balloon, its inner wall has bumpy bits (hold up your hand, flat, palm facing you, and looking at your fingers you get the idea of the "bumpy" of the inner bladder wall, which becomes more "interesting" to work with when the basic musculature is spazzy and thus creates places for fluid to collect and avoid the outlet provided by the catheter. The more things change, the more things change.

And a final note: My doc, who's both in the MS and the Cath Club, says that if you're using catheters like we do, you're going to get infected ("UTI" means "urinary tract infection"), so don't be surprised when it happens. But he also recommends, and because of what this is I can freely share it with you, barley tea. Or, as the Japanese call it, mugi (moo-gee (hard G)) cha.
Has nothing to do with camellia sinensis, the plant from which what we call "tea" comes, and therefore has no caffeine, and for folks like us this is a big plus, it is not at all diuretic. But my doc says it just cleans out the system, which is after all what the whole "elimination" system is all about. If you brew it from scratch yourself from only barley seeds, or if you use a tea bag (very easily found in Japanese markets), the flavor will be different... but it's not bad at all either way (I prefer the "from seeds" version), just be your own tea master and brew it as long as you think you should; the worst you toss it and try again, what with the cost of barley, isn't a big deal. Considering whatever else you may have to struggle with, this ain't bad, brewing barley.

And as they said on Babylon 5 in the episode "Learning Curve"... So ends the lesson.

Tuesday, December 30, 2014

Water

Phone reports that weather service predicts rain, wind, and frost tonight--all three. For me who has become wicked cold sensitive (as opposed to the usual "heat sensitive" that MSers usually are, which of course I also am; I seem to be Schrödinger's MS Patient) this whole "wicked cold" thing is keeping me inside. At most, I wheel myself onto the veranda, smell the air, feel the temperature, and zoom back inside... Although there have been days when I open the back door, take a hit off the air, and wham! Back we go. NOW.

Five-Element acupuncturists call this the season of Water. How he speaks of the Element is positively poetic... Read it, it will definitely send you down an interesting road.

As I told my own 5-E acupuncturist on Monday, I got a very clear "buzz" from Nature, this season... what came at me was the season itself saying, "I've got more important things to do than worry about making things pretty for you." He loved it, and laughed loudly. A really nice smile. And he definitely knows Water people... I guess I was right.

I, of course, am a Fire person. For years, I've just felt squashed by winter. Not a time of heavy power composition... I always used to spend the summer writing music for six-months-later Christmas. but that is the Fire season, after all.

But, as the Five Element folks will tell you, each Element exists within each Element; there is Water within Fire, and Fire within Water. If you just sit in nature and just pay attention, you'll feel it. This year here in Pasadena the unseasonably hot (100-degree days) that hit during the Earth season definitely had a lot of Fire within it, but I could feel it reaching for Metal, even for Water, as the wind changed. Every day is different. Every day.

So, today, I seek the Fire within the Water, yes, but all in all, if you'll forgive me mixing metaphors, I'm dedicating today to just going to ground. My wife is heading off with her mother, K-Mom is going home January 1 of all  things, boy will that ever be fun, I'm here at home and I am going to do nothing beyond as Gumenick says, finding the "dark, quiet pool within ourselves where our essential self-identity resides."

A friend may come over; he may not. I might call a different friend to come over; I may not. And he might not be available anyway, but that's on him. I might make some phone calls; various doctor's offices have called with questions, I need to answer them, but those hardly are places where my "essential self-identity lies."

My "to do" list today is very humble. I will feed myself properly. I will take my herbs. I will deal with the rigors of the Cath Club (next on my list this morning). Yeah there's business to do, but today, by priority is to do only that which strengthens me. As Gumenick writes,

A time for internal work.



Friday, December 26, 2014

Everything

DAMN, I am cold. Imagine being cold, you throw a blanket over yourself. It doesn't work--you're still cold. Toss on another one. You're still cold. Repeat... both "toss on another one" and "you're still  cold."

I'm not really comfortable unless the heater is knocking on high 70's, maybe 80.

At which point, the world gets too hot.

I can't win.

I am, though, beginning to make new discoveries... I almost never feel "hungry," but I think I'm starting to get a grip on "empty...too empty."

I'm starting to work on "eat something during the day." And to do it LONG before I get to the "oh dear, I think being empty for too long is creating problems..."

I was going to lapse philosophical, maybe even quote Ram Dass...

And then... the coughing started.

Me and coughing can be kinda violent. I start hacking violently, not barfy-nasty kinda violent but definitely violent... the keyboard I leave on my lap when I'm doing things such as this flies away, because my entire body spazzes and my knees fly up (hence, knocking things out of my lap), my eyes tear up and my nose runs, and I cough and cough and cough and cough and cough and... this goes on for minutes.

MINUTES.

Eventually, the coughing stops (it has so far, thank God), but now I can't speak. Someone asks whether I need any help, and all I can do is shake my head -- if the coughing has stopped enough -- and a few minutes later, everything calms down. Except I still can't speak.

What's setting this off? Tiny particulate matter... a crumb, a chip of pepper. A slightly overly-zingy bit of juice.

Today, it was pizza that set me off. Amy's, I believe, they do flavorful non-dairy stuff. The crust is delightfully crisp. Except for the "particulate matter makes me cough" part.

This is another reason I shy away from eating... if it doesn't tweak my tummy, it karks out my throat and I spend way way too long coughing and coughing and...

Let's not even get into the "light lung mucus" thing. Which, fortunately, happens infrequently but is not as hideous. Unless I'm lying down when it hits, in which case I can't move it and it's more and more coughing. But at least, when I can clear it, it clears reasonably quickly. But still my legs go spazzy, not always as badly.

But the "eat and cough" experience is one of the thing that keep me away from eating. If the questionable tummy wasn't enough... (One of the reasons I so rarely ask to be taken out for dinner, nowadays. Simply being in a moving car can set off the "unhappy tummy" problem.)

Great. I finally decide to eat something, and it sends me into coughing fits because of a flake of pepper.

And as I'm typing, there goes the coughing again...
He adds, several minutes later.

Everything has a price, it seems...

Everything.

Thursday, December 25, 2014

Just...

I had a visit with some very, very wonderfully dear friends yesterday; A couple; I played for their wedding, and as for Him. I've known since 1985.

I am sorry to report that She has some sort of totally whack brain tumor whose specifics I can't recount, but trust me, it's totally whack.

She hasn't been given A Date for such things, but she has been told that she may not make it for longer than a few weeks. Or months. Or... well, they don't know. Being here on this plane shuttling around in these mortal shells, eventually we all realize that said mortal shell is only good for "so long" before it just gives out, but being told you may have X or Y or Z specific time here... well, that's hardly a preferred technique for raising one's spirit. Especially when both He and She are dealing with a pair of kids, 3 and 5. With whom Every One Of Them had to deal with the Farewell of their dog. And how, being dead, is She supposed to help the kids deal with Mom's passing? Yeah, that's a spirit lifter.

Her experience with her Neurologicals is quite similar to mine... Details vary, as they do for all of us MSers, many of the basics or "big gestures" are the same, but the details are completely unique to each of us sufferers. Especially the "suffering" bits.

Among many interesting things is that She, quite a stellar writer, has had her creative process completely bollixed up by her neurological experience. Like me, a lot of "creative time" was trumped by "I have to sleep  now. NOW NOW NOW." She, like me, goes through what I've been calling "hit the wall." When I hit the wall, I'm done. I'm done, with whatever it might be, and I really really need to go to bed and probably sleep NOW NOW NOW.

But most fascinating was that Her and my internal processes are completely unique. Nowadays, I seem to lapse into fury with not much/no warning... drop something on the ground, which happens a lot, and I start foaming and swearing... not at anyone (I do swear at the Complaining Cat), I'm just venting. Her experience is completely different; she goes to intense places, which are very specific to Her, but she doesn't foam. Many of our Issues seem at some point to boil down to "Give a shit, but don't give a shit," how Jesse Sheldon described dealing with the Theater Tech world, and the myriad WTFs that occur in such places.

I found myself answering her questions about "How do you deal with XYZ?" simply by saying things like "Worrying about the afterlife is above my pay grade." Besides, I got enough to worry about as it is... wanted to say (but thought it polite not to) "Don't you?"

But also at least a little funny is... She makes use of Medical Marijuana AS medicine, and finds it very helpful for Her specific issues. It makes things better. It's a big help. Everyone I know who uses Medical Marijuana as medicine finds it to be quite excellent medicine, and really really helpful. It is truly wonderful, as opposed to things like Tysabri which has been known to turn your brain to mush and kill you. Fails the Hippocratic "First, do no harm" command.

For both of us, the bottom line is the same: The creating/creative process has been completely run off the rails, and we can't create the way we always have; but She and I are Creators, we Create. So: Create something. No requirements for size and complexity, just create something. It's perfectly OK if it's crappy...  Tom Hanks said (speaking of his preparation for the Forrest Gump role) that "You have to suck before you can get good.

So, it's clear what mission lies ahead of me...

Just... suck. But merely doing something is success! So, suck... and smile.

Friday, December 19, 2014

Trying to be helpful

We're having quite the "medical time" with our 18-year-old cat. Yes, 18! Just stroking her back, she's feeling much more frail than she used to, but she's as sweet as she ever was. Hard choices, whether to go to treatment X or treatment Y... with an 18-year-old cat, one is very sensitive to "the cure is worse than the disease" choices.

Which particular principle (cure worse than the disease) has kept me off the standard MS treatments, e.g. Tysabri, which in its day was responsible for quite a lot of "cure worse than the disease" noises. But as Alton Brown has been known to say, "That's another show."

But taking the Cat Journey definitely brings to the fore the simple truth that we all process "difficult to deal with" issues very, very differently. And said difficult-to-deal-with issues are differently difficult, and each of us offering up something we expect will be "helpful" often isn't.

About all we have is what Ram Dass said, quoting his guru: Love God, and tell the truth.

Some of my "helpful" offerings (which often aren't) I think are well-rehearsed delusions... "Well, easy answer, smooth but definitely easy-to-give answer" is first on the list of "not helpful."

I think it's quite safe to generalize and say "Delusions aren't helpful."

I hope that isn't a delusion... I'm pretty sure it isn't...

Trying to be helpful isn't always helpful... sometimes it just gets in the way.

Thursday, December 18, 2014

The fun never ends

So, how're things going...

I have been very kindly ministered to by a friend... not an MSer but like all of us, he has Issues, and we minister to each other for our various Issues.

He has been wonderfully gentle with not letting me get away with stuff, very gentle in telling me that I need to come clean with myself... Very much, a gentle example of "tell the truth with love."

My wife is, even as I type this, taking the 18-year-old (yes, 18!) cat to the vet. We don't think this was going to be The Last Journey, but poor little cat has definitely run the race and soon it's going to be time to make the transition, whether she makes it with our help or not. We don't THINK it's time... yet...but we will see.

God, this has got to be awful for my poor wife... Caring for withering husband, and now additionally caring for a withering Cat Child who has been with us through so much.

And my job, through all this, is to pay attention, love Karen, and keep my f**king ego out of the way. I'm not always good enough to catch myself as, or even better, before, it happens... But that's my work.

Speaking of work, it's time to have a little more food, some medicinal herbs (nice flavor this time, this formula even has cardamom in it, among other things it's supposed to be warming, something I definitely need nowadays) and then some Medical Adventures.

The fun never ends.

Thursday, December 11, 2014

Things do indeed change

Here in Pasadena, it's definitely comin' on Winter, as they say in Montana. (They also say that there are four seasons in Montana: Conin' on Winter, Winter, Pretty much still Winter, and Road Construction.)

Thinking a lot, perhaps more than I should, about life in New Haven and at Yale and its environs... But as a very wise man reminds us, there are many paths to enlightenment, but "nostalgia" isn't one of them.

My herbalist has encouraged me to try snorting small doses of my herbs, 1980's-cocaine-style. It's quite odd (there's cardamom in this formula, who snorts cardamom?) but it's gentle, and it works. Dunno exactly what it does, but it's doing something beneficial.

He also told me to go full-court-press on B vitamins. Megadosing. But he did come up with a superlative research paper about what to do and why. And, a relief, at least we know what B vitamins do. This particular paper is gloriously free of "is thought to" bet-hedging.

I had some matcha this morning on the back veranda... I can take the outside world briefly and in controlled doses. But at least from the veranda I can watch and maybe even enjoy, the promised rain while staying dry. It was quite odd toddling around the high school (former workplace) in a powered wheelchair in wet weather... My knees and shins got wet, because they were basically the "leading edge" of my forward motion. Top of my head of course yes, but nothing like direction-of-motion shins catching the rain. Sort of a Mythbusters experiment gone very, very oddly.


Very simple activities, today. The usual "bathroom polka," additional details of which you do not want, take my herbs in various methods, maybe even make some pickles. Maybe send some messages from the computer, pay some bills (or in this particular case, some more bills, such as the supplies I need to keep myself happy in the Cath Club). Eat. Yes, that needs to be committed to as a "mandatory to do" just like my morning thyroid pill and daily catheterization... because it takes special circumstances likely that to happen in any way... "Go out to eat" I do very very rarely, because getting dressed enough and bathroom-adventure'ed enough, plus being able to simply withstand leaving the house, is a Very. VERY. Big. Deal.

Speaking of which, it's time to have some herbs and try to eat something. The difficulty of bringing myself to do which is very foreign to a gastronaut such as mysel...

But, things change. They do indeed change.


Monday, December 8, 2014

Take what you can get

Time to remind myself about the whole "gifts of MS" thing.

Here's a gift: Simply noticing.

Nowadays, I notice my wife a lot more. She's really amazing, and it is definitely amazing to see exactly how wonderful.

Well, she's really wonderful. The source of the most amazing surprises... among many many many things, her work as a voice actor is delightful. Sometimes terrifying. A typical role in a typical (for her) game:



But her work.... she... is definitely wonderful. In everything she does.

And what's one of the most important things to learn about living with MS? About living with... life?

Take what you can get.

Sunday, December 7th, one of my compositions was performed by St. Olaf as a part of their annual Christmas festival, which has been going on since 1912. Their performers delivered a beautiful rendition of my composition Hodie--I don't have a recording yet of that performance, but I'll share it when I get it.

But it was good. Very good. St. Olaf, in the world of music... a friend of mine in the College Music Industry said that "'Good enough' for St. Olaf is 'holy crap!' for most people." It is a fine, fine place indeed. Go to any church music library, and you'll see the name "St. Olaf" peeping out at you from all sorts of places. Pictured below: Yeah, that's what St. Olaf's Christmas music festival looks like. Probably what the group that performed Hodie looked like.



Take what you can get!


Friday, November 21, 2014

That's hard

Really trying to blog again. More frequently than the GRBs so popular with NGT, if you'll forgive being sprayed by acronyms.

Learning interesting things about my iPhone. 4, I think, maybe... Anyway, leave it connected via Bluetooth to this delightful (in every other way) speaker but ****not**** sending sound through the speaker, or using the phone in any way besides leaving it lying alone doing nothing other than lying there, and the battery level just drops.

Connect it to the SC supply via the cute little square house-current-to-USB adapter that Apple itself provides, leave the phone completely alone (whether or not still connected to the bluetooth device) and the battery-level just drops. Not as fast, yet it still drops. Turn off the bluetooth, and the level still drops.

Connect same phone with no other changes to an Apple device, a computer of some kind. Battery level rises. Very quickly, too!

My conclusion: Like all things digital, phone and its battery like clean power. Computer's power provided by its USB jacks, nice and clean! Everything else... not so much. And bluetooth sucks power, whether it's being used to carry heavy data (like audio with video) or just maintaining the connection. Haven't tested yet whether bluetooth on plus computer powered USB still drains power, but as Alton Brown has said frequently, that's another show.

Spent some enjoyable time with a friend yesterday. We didn't go further than the back yard, but I managed. I was definitely out of juice, but I kept plugging away, just because I thought I needed to. If for no other reason, just to practice.

We've madereservations at a favorite restaurant for Thanksgiving. Since Food-Channel-style Thanksgiving is all about dairy, we're just going vegan. But odd as that may sound, Shojin is always quite amazing, and it's so good, you'd never know it was so good for you!


Been wandering down memory lane, remembering the Goode Olde Days back at Yale with its marching band, and performing in that band at The Game, which is what us Yalies call the Yale-Harvard game. In my day with them, it was hellishly cold, but this year portends much gentler weather. The Game is always played the Saturday before Thanksgiving, and for us Yalies, no other game matters.

Well, they have been doing it since (oh my) 1875. You do the math about "how many times."

And here we go. I've hit the wall... can't deal with this "operating the machine" stuff any longer.

That, right there, is one of the many things I have a hard time really facing & dealing with. It's one thing to have been working for an hour, or hours, and then taking a break. This is different... this is running out of so much, so suddenly, that it's "hitting the wall" not just needing a break. I had imagined looking into poking at doing music!

But no.

And that's hard too... that's very hard.



Tuesday, November 18, 2014

You gotta know...

Things are still going. As I often tell people, things are the same every day, different every day. Just like... life.

Had a good acupuncturing and dharma talk yesterday. One topic was "Hm... This has been bothering you for years." Neither of us has any idea about what exactly is stuck, but boy is it ever stuck. As Ram Dass says all the time, that's where the work needs to be done. Exactly what work... well, figuring that out is part of the work. Although "figuring" may not be the right approach... may be precisely the wrong approach...can't think your way out of a box made of "thought," after all.

Simple quotidian "life" is extremely illuminating, calling light to shine upon the unnoticed and the assumed. The floor that seems level isn't; just sit there in the wheelchair and it starts to drift gently "downhill." Eyes that cooperate with each other makes simply selecting before reaching for something and then actually grasping it a vastly, vastly, simpler task than things get when each eye seems to have its own agenda thus direction.

Using the hands, especially the fingers, with the precision one has always had and is thus used to having... and don't have any more, or so it seems. Fine hand control fades with age, but please, I'm only 44 & a few months, I suppose technically that counts as "age" but my 70+-year-old father is still using a scroll saw, so "age" ain't what it's all about. Duh.

Time to get "morning" tea going for my wife.

And I was called away by a "go to the bathroom nownownow" which did not take moments -- it happened, but an hour, and then quite a while to recover, which alas haven't happened yet.

So, I'll make a cup of tea for myself, then back to bed. I may have a friend come over 1:00-ish... or bail out. Which I am very, very very, close to doing.

But as was said on Steven Universe, in the show Space Race, we are told, several times:

You gotta know when to bail.




Saturday, November 15, 2014

So...

I am so out of the "blogging habit." Well, I'm definitely still here... "Still around," at least.

Not much to share. Weather here in Pasadena is definitely fall, knocking on the door of winter. Reminds me very much of my Yale Days, perhaps just hanging out in Beinecke Plaza, or roving around the outside of Book and Snake, quite an interesting place in itself.


They used to have a refrigerator in the basement with a beer keg inside, nozzle & pull handle outside the refrigerator, mounted within/to the door. 'Course, that was when Connecticut was an 18-to-drink state... I wonder whether the keg is "of course gone," or "of course still there."

Well, I accomplished "something," sitting here at my computer, maybe I'll send another note or so, but I think I'm done, for the moment. Bed is seeming very attractive...

Certainly more attractive as a "comfortable resting place" than what sits outside the front door of Book and Snake

The Grove Street Cemetery, of course.

Not my planned destination, though. For now. So, don't worry!

Saturday, November 8, 2014

Second step promises ...

I have been very remiss in my blogging tasks, it seems. Well, here's how things are going...

It's beautiful in the back yard, during the day, definitely worthy of at least a veranda visit. We may very well have some satsumas in a week or so, pretty much the only plant not totally burned out by the weather.

Saw my herbalist yesterday, we had some very good and necessary words; new herbs definitely are in the mix, too.

Dealing with the computer is a ... challenge. When your eyes aren't working in harmony, it provides a challenge when one is accustomed to using one's eyes in concert with each other and with one's hands... which likewise aren't working as well as one is accustomed to their heretofore quite good work.

And I think I just hit the wall. Time to stop and move to the next "fun" operation, which will itself be followed by lying down.

The step after the "fun" medical one... promises enjoyment; the simple pleasure of just lying down, and listening to some cartoons. Maybe some music.

Off we go......

Thursday, October 23, 2014

If all goes well

Sorry to have been silent for several days, but it has been... a time. That's the polite way to describe it.

Dark days. Crippling headaches, inability to deal with even SEEING food; actually eating it was out of the question.

Plus, to add insult to injury, one of my eyes seems to "like" pointing in its own direction. As long as it's not the direction the other eye is pointing in.

I feel like Steven Universe's "Amethyst," who (in the episode "Indirect Kiss") broke her gem and, in her words, acquired a "googgly eye"...


I recommend the cartoon. Not the googly eye.

Some new herbal treatments. One is easily and safely recommendable... Barley tea, mugicha in Japanese, quite good for UTIs and something you can drink by the gallon without a single worry. Won't even send you into diuretic madness, like some other teas will. Quite important, if you're in the Cath Club and don't want to be kept... busy, shall we say.

Also went to another one, which works for ME but for you, who can say? So we'll leave that one off the table for now.

Made it to Vegas, even, to an international conference at which I presented. Was the opening presenter. No pressure, eh? But I survived. Somehow. Sort of...


But what a trip it was!

And I think I've hit the wall. Time for a bit of computer business, then time to herb up and lie down. And thereafter... who can say? With luck, today will conclude with my attendance at a sake pairing.

If all goes well. Arthur C. Clarke, in the book 2001, said that was a favorite saying among astronauts...

If all goes well.

Friday, October 3, 2014

Maybe five

Man, yesterday really drove the whole "M.S. people need to stay cool" thing home.

So, following doctor's orders to "get out of the damned house," I went on a lunch adventure with a friend. My magical phone had alleged a high temperature of 87, I figured that if I go pushed through the heat quickly and stayed in nice cool roos, I'd squeak through.

Turns out the temp was actually 103, and that's "high in the air" temperature, not the "significantly hotter" of wheelchair height in a world of asphalt.

I was all too close to "completely 100% unable to control my legs in any way," which includes inability to transfer from/to anything, and what passes for "normal" nowadays didn't return until hours at home, lying down, in the air conditioning.

If I go outside today while the sun is up, it'll be before noon... I'll open the door, say "My that's hot," and go back inside. Ten seconds, maybe. At most.

Maybe five.


Wednesday, October 1, 2014

After all...

Life's pleasures nowadays are simple, but definitely pleasurable...

Something I enjoy eating. (Trickier than in days past; this nonsense has gone way beyond "finicky eater." Sometimes even thinking of eating sits wrong.)

A bird I've never seen before, zooming through the back yard.

Smelling the differences between wind off the distant mountains and off the local hills.

Hearing the Song of the City change, from day to night, and hoow each day is different.

Just watching myself change lanes on the Nostalgia Highway... First remembering the Goode Olde Days back at Yale, then years later, a time when I was running the rock band that played at Prep football games. (A reminder to self: stay here, now. There ar many paths to enlightenment, but "nostalgia" isn't one of them.)

The indulgence of watching a cartoon I like, that touches my heart. I've been enjoying Stephen in  Stephen Universe and his relationship to a very dear character, Connie. I think the road has already been laid... I think it's clear that she loves him, and is a worthy co-adventurer.


Some days are for adventures, like going across town to see doctors. Or going within town to get new glasses. Or maybe go to a store. Or wheel by Ten Ren for some tea. Or lunch, even, keeping in mind the "if I'm eating" above.

A successful transfer from anything to wheelchair or vice versa. Sometimes even an enjoyable (even better than a worry-free) one.

Making the cat happy. Always a moving target... But I do what I can. And sometimes I even get a purr.

Which is just fine.  good" doesn't have to be "huge" just to be "good"...

After all, every day is a once-in-a-lifetime experience, is it not?

Tuesday, September 30, 2014

Who needs it?

Had quite a chat (as always) with my primary medical caregiver.

Among other things, not even thinking about "M.S. has done X to me."

Since it doesn't really exist, it can't do anything. And, also of course, there's no one/nothing to rail at, or blame. Although saying "M.S. really kicked my ass this week" does simplify the conversation. (Something I discovered long ago is that people in general don't want details about what's physically going on, they just want an answer.)

But no, I don't go down the Blame Tunnel or anything like that. If I'm tired, I'm tired. If I'm in pain, I'm in pain. That's pretty much it.

If I wanted to go down the "pity path," oh there are many onramps. But I have enough trouble simply using this keyboard, simply controlling my right hand enough to take the cat food out of the refrigerator without having it spill all over everything (a fate which has befallen too much "human food," much less cat food) is enough to deal with.

Bearing a grudge against, blaming, ascribing anything to something that doesn't exist... that, I don't have the energy for.

Who does? Who really needs to...?



Saturday, September 27, 2014

But first...

Oh my, it has been a few days, hasn't it!

I've been giving unquestioned priority to working on this re-arranging of an orchestra+choir piece to wind ensemble (zero strings) + choir. It took a few days to make it work anyway, but things were complicated by what I can only describe as "hitting the wall"... energy, ability to manifest, ability to control coomputer-y things like a mouse (which yesterday, was simply flying out of my right hand, it was worse than "dropping" it), simply poof! gone, time to go to bed now...

Well, I made it. Gonna send one more piece of e-mail, and I'm done. Gonna use what energy I have to deal with some Medical Stuff, and then I'm going to bed.

But first... a cookie.

Because, damn it, I deserve it.

Saturday, September 13, 2014

Gifts await us all

Many thins can be said of the MS experience, but "dull" isn't one of them.

I got asked by this MAJOR university to re-jigger a chorus+orchestra piece of mine into a chorus+wind ensemble, zero strings! The sort of challenge I have heretofore always enjoyed! But nowadays, what I'm definitely not enjoying is shoddy hand control, dealing with the mouse and keyboards so very poorly. Very, very poorly... More info after I survive  the experience and deliver the finished product.

Yesterday, in other news but still speaking about the "hand crappiness"... Trying to write something on a piece of paper, I couldn't control my right hand well enough to put the pen onto the paper, much less control it well enough to write something recognizable as letters, much less as actual words.

Let's not go into the difference in experience between typing 100 words per minute--yes, timed and everything, that's really how fast I used to type--and the left-hand only, often poke-one-key-at-a-time, never look at anything other than the keyboard with occasional "Oh sh-t, I just typed that?" moments in stolen glances at the screen...

But here's the capper for the last few days: A friend of mine e-mailed me yesterday about how his wife has this nasty, nasty, thing growing in her brain which, if she's lucky, is in an operable place and, with today's disco surgery, might actually get removed and her problem solved! A similar thing happened with my own mother... she spent the day in disco surgery, I saw her the evening that she came out of the recovery room and got back to her hospital room, and within a couple of hours after leaving surgery, she looked better. Yes... better!

I haven't figured out how to tell them that, from my particular lane of the Neuological Highway, she's in great shape. Two reasons: they can point to what's wrong, and if they take it out, she gets better.

MS doesn't work that way.

Oh well.

But one never knows... Gifts come in the most surprising ways, from the most surprising places.

And all of us can certainly benefit from saying farewell to that which we do not need, whatever form it may take.

Gifts await us all. In the most amazing ways.


Saturday, September 6, 2014

Koyaanisqatsi

Something I never expected to hear from a dyed-in-the-wool urologist...

I was asking him about my current bladder conflagration... Alan (my name for the bladder, long story there) complains bitterly demanding attention, I transfer (with some difficulty) to the commode and Alan seems no longer interested; I get up to leave, he screams again. I catheterize myself after all this screaming, and get a few tablespoons (not, by my lights, a good use of a catheter, given what they cost and what a f---ing pain in the ass it is to get them delivered to my house); I'm lying down in bed, Alan starts leaking but NOT complaining, I cath and whaddaya know, 400 ml! And let's not even talk about the difference between "leaking" and "gushing."

Urologist says, perhaps a little sadly, "That's how it is with MS. Everybody with MS eventually goes there... All sorts of things set it off. Maybe an infection. Maybe an MS flare-up. Maybe something else, it doesn't take much."

And this is what I didn't expect he'd say, but given what other care providers I hang with, it makes perfect sense...

"Something's out of balance"

Koyaanisqatsi indeed. Life out of balance...

Art imitates life.

Philip Glass - Koyaanisqatsi - YouTube

Friday, September 5, 2014

Why bother

As you may know by now, I am strict about not personalizing MS as an entity, which it isn't, with wants and whims, which it doesn't have because it doesn't exist.

But there's no other way to express it as cleanly or quickly: Last week, it really kicked my ass.

Yesterday, made it out of the house for a real adventure, taking a friend for the first time to a 99 Ranch market, which he had never seen before. "Who needs Vons, this is where to do produce shopping!" he said gleefully.

He was amazingly happy. For the first time in his life, after 30-ish years as a professional chef, he encountered golden kiwi, which is quite common in the 99 Ranch world but for his, he never knew it even existed. It was delightfully sweet. We loved it!

One thing I'm definitely noticing nowadays, perhaps as a side effect of all the mantric meditation I've been doing, pretty much all the time, is being calmer. I still yelp when I drop something, but I'm not holding, nurturing, grudges like I used to. I don't have energy for much, but getting pissed off and railing at something that I know nothing about and can do less than nothing about, I don't have the energy for so... why bother?

A new couplet, I guess... "Doesn't matter" and "Why bother?"

Today's not the day, oh definitely not, but I'm going with my friend to a different 99 Ranch, which has an even bigger produce section, and I'll pick up some unfamiliar (to him, at least) treats.

A very simple answer to the earlier question... "Why bother?" Because it tastes good!


Friday, August 29, 2014

Not much to share today...

The first day in a while that I've even been able to sit at, and use, the computer in the studio. And that, only barely. Someone came by to talk to me while I was typing this, and the time that took added to the challenge of just sitting here. Which I am not, not, enjoying. In the least.

Not much to share, since I've basically been living in the bed. Earlier this week, a friend came by and did me a solid, working on my truck for me. I did him a solid, just by giving him someone to talk to about Some Issues. A good day of mutual support; the first of many, I hope.

MS has still been gifting me... I'm just not always receptive to what I need to see.

Like that's different from, you know, life.

Gotta Google something specific, before my "typing" finally gives out and re-typing stops causing me more pain. Then back to bed. I don't really "watch" things, but I do listen. Actually deal with watching, only occasionally, to catch something really fun to watch.

Like Stephen Universe introducing a new gem fusion, Sugilite. Somone you definitely do not want to mess with.


I wonder what the gems would do with MS? Gotta tell you, spare arms and eyes might come in handy...

Tuesday, August 19, 2014

Time to do The Work

It has definitely been a while since we last chatted... The first time in days that I've had the strength to sit at the computer and type... and I've already hit the wall, having typed three letters and a web page. Dang, it sure doesn't take much to stop me in my tracks.

While I was at my MD/acupuncturist this last Monday, my wife took my wheelchair tires t a wheelchair shop to get them seen to. Folks, if any of you have wheelchairs to deal with, treat 'em better than you probably treat your car. Having the failed tire repaired makes a HUG!!!!!! difference, in the way everything works. Safety, maneuverability, everything gets better.

Can't wait to take the whole device in for a going-over.

Yesterday, I had a very odd acupuncture treatment... summoning the seven dragons, to clear "possession," which I don't even vaguely understand enough to describe but dang, do I feel better after it has been cleared.

And a good "reality check" with my not-quite-unattaching from the past. I was telling him about how I was very clear of My Former Work7place and all my issues with it, and I was asked in precisely these words: "Why do you care at all?"

A very good question... I barely eat anything (a reminder to self: finish this and go eat something, idiot, even if you don't really want to), simply sitting at the computer as I am now takes me down the road of hand-control failure of failed typing or control of pretty much anything, I can't really read (whether its glasses problems or eye/brain problems) and as Professor Farnsworth of Futurama would say, "Lordy Loo..." it's not like what's easily readable on anything is worth reading at all, delusion chasing delusion chasing delusion, a very good way to get deluded yourself. But attachment, insidious attachment...

And besides copping to "I'm still attached," there's nothing else TO be done. As Ram Dass writes, if they don't appreciate you, that's on them, but if you're stuck on being appreciated, that's on you. Time to do some work.

Well, that's definitely a gift of MS. Time to do some work? Well, besides keeping up with the Cath Club, remembering to eat and take my herbs, deal with a few other Unfun Medical Things... what other work do I have to do?

Not "stuff" to do, but work to do? Even if, as I definitely have right now, have hit the wall and need to get back to bed? Well, yeah, eat first, but it is definitely time to pack it in... and, clearly, Do the Work, and let the Work Do You.

Clearly... as Arsenio Hall used to say to start his show, "It's time."


Time to do the Work. Well, the MS Highway does provide many interesting... opportunities, does it not?

Friday, August 15, 2014

Memento Mori Management

Been following surprisingly challenging doctor's orders this week. Simplest way to convey at least one of them is "Dude, get outta the damned house!"

I've gotten out of the house every day for the past week, starting with two doctor's visits Monday and Tuesday. Even tried to go out for lunch Wednesday and Thursday.

Not that it made much difference, for lunch nowadays I basically eat a poker chip or something that amount/size, which at least one of the other doctor's would like to change (zero interest in food means I lose even more weight, given what little I weigh nowadays, that's no good). Hoping to make it to the LA Tea Festival tomorrow.

Doc #2 told me to drink pu erh tea, but be sure it doesn't have mold on it (a characteristic of some varieties). Said mold was a good herbal-istic idea once, but not today. So I got some nice dry stuff right off the cake, zero mold, and the Jedi Tea Master told me that if I treated it correctly, I could get twenty washes from a single "dose" of tea. Very economical, indeed!

Had a surprise visit from a former co-worker, who's still at ... There, shall we call it. Sounds like things haven't changed, in the "makes life miserable" department. That it continues to have been a really, really good idea to bail when I did (might have even been better to bail earlier, but as Alton Brown is famous for saying, "That's another show") and for various reasons, it might very well be a good idea for said former co-worker to bail too.

Taking care of somebody else's business is one thing. Taking care of your own life is another.

Eventually, even I realized that the latter was the superior approach.... especially when it seems that you have to choose only one of them.

As we have all heard, I'm sure, that not a single gravestone either says, or ever will say, "If only I had spent more time at the office." As the Good Book says, their tombs are the fairest white alabaster, but they are full of dead men's bones.

Life is memento mori enough as it is. Middle management making you wish you were dead is a life not worth spending. We only get so many moments... fighting with management's vagaries is not really the best way to spend them, are they?


Saturday, August 9, 2014

New homework

A thought on witnessing and awareness...

Time after time, I see how my right hand is withering. How every day it seems to be able to do less and less... How I type next to "only" with my left hand, fever watching the screen, instead staring at the keyboard because I'm already making enough errors as it is, at least this way (staring at the keyboard) I catch the errors as they are made. Mostly.

But what I don't witness is success. Instead of seeing "I managed to do X" I see "Doing X used to be possible and now it isn't." It's the classic "Is the glass half full or half empty?" question... I would probably be happier to see "I was able to X well enough to achieve Y" rather than fixating on "I should be able to X, I used to be able to X, and now I can't."

Man, attachment is indeed a subtle trap...

Yesterday I found myself musing on My Old Life, at the place I used to work and even called home, and I remembered This Thing... This particular memory used to pull me down the rabbit hole of fury, of offense, of rage; but that particular time, reminiscing was very quiet. "Yeah, I think I am still pissed at that." That's as bad as it got. "Better?" I suppose, and certainly "better" simply by being honest with myself, but I guess I'm still stuck there. Not as virulently as I used to be, but attached is attached, and letting go for real is letting go for real.

It's very interesting what angers me and what doesn't. Being in the Cath Club doesn't bother me. Being in a regular (if you can use that word) relationship with Dulcolax doesn't bother me. Being unable to play or even sit at the organ doesn't bother me like it used to. Being wheelchair-bound doesn't bother me; maybe it's being good at navigating it... But the "hand stuff" is really getting to me. Being unable to type. Being unable to deal with a "piano-style" keyboard, even for data entry, really bothers me. Having problems operating the mouse really bothers me. Having such poor control over my legs that they "pretzel up" and lock each other up when all I'm trying to do is to get them under a sheet, or trying to get them underneath me in the wheelchair (or any chair) really bothers me.

My spiritual advisor would demand not "What do you think," but "What do you feel?" And that, I can't answer. Whatever I feel is buried so deep that I can't even describe it shoddily. Well, that's more work, I guess, and Ram Dass would (probably) suggest that I should thank this difficulty simply for being there to each me a lesson.

And thus MS gives its gifts. There was NO OTHER WAY TO GET YOUR ATTENTION so I had to try this!

And it's gonna keep pissing you (me) off until you (I) learn what is necessary. The neurological nonsense may never abate, but "taking affect" from it, as my Spiritual Guy would say, that's another matter. As Ram Dass would say, that's on me.

So again, MS has set a gift before me. Which is gonna sit there and keep pissing me off until I receive the gift as offered.

Clearly... new homework.

Friday, August 8, 2014

Wonder if...

As Jon Stewart has been known occasionally to say, "I got nothing."

I can barely control my right hand with enough precision to use a mouse, type, tap a button on my iPhone without putting my eye out or dropping the phone on my face or even tapping the "tap here" surface, much less a selected spot on said surface.

Could barely spread jam on a waffle. Without "spreading" it everywhere. The floor, my lap, the napkin, the... everything.

Rocky Mountain MS Society this week has an article about "fatigue."

Wonder if I'll have the strength to read it?

Thursday, August 7, 2014

Gotta have your priorities

Ah, Seth Godin... Yesterday's blog post, about "Analytics without action," was almost the very picture of where I used to work. Except they would gather bad data, badly, creating untrustworthy analytics, whose only purpose was to make Them happy. We've got data, you see! And merely by the having of this data, They were proven Right, which of course was the only reason to gather said data. Who needs to be so scrupulous about data gathering? This proves We're Right, which was after all what We wanted.

I guess I'm not really over my last workplace. Attachment is a powerful thing...

I'm not as violently enraged simply by remembering the existence of Said Workplace, but I've clearly very deeply rehearsed the telling of the story, and although I omit the "You stole [x] from me!" pretty much all the time as I used to, but clearly I'm still channeling the Cosmic Owl, muttering "You messed up."
Not much more to say... I was hoping to do some kitchen work today, making refrigerator pickles, sharpen a knife maybe... eat more before checking out & heading back to bed. We'll see what happens... "Eat more" is priority, so I'm going to do one more thing online... Nope. I feel like I'm hitting the wall, so that'll wait, the "do stuff online" stuff.

Gotta have your priorities, right?

Sunday, August 3, 2014

Quite a gift

Bathroom remodeling proceeds apace. We're down to the final day (or so), installing door moulding, a bit of priming, maybe another handle or so (or other hand-hold fine-tuning).

It rained last night. A few days ago there was a brief thick and substantial mist (San Diego, where my wife was at ComicCon, had by her description full-on Florida-grade downpour, plus spectacular thunder and lightning), but last night it was actual rain. Drops and all.

It only took moments before the plants in the garden began positively radiating happiness. Finally, FINALLY, the sky is watering us. Life is very, very good. Even the back-garden kami seemed to be back, not burned to a cinder by the summer heat and drought; even the kami was happier, from the rain.

Sitting on the veranda last night, it was a truly beautiful evening. The sight, the sound, the smell, even the taste of the air of a late-midsummer-night rainfall, was truly beautiful. California is going through a horrible drought, but last night, the sky was sharing water. And it was very, very good.

I've been reading a lot of Ram Dass recently, courtesy my mighty iPhone. One that really caught my eye was about learning to grieve... about saying farewell, about letting go.

This is something that confronts us MSers very directly, very personally, very deeply. Like humanity doesn't do that anyway. Well yeah it does, but somehow, on the Neurological Highway it's somehow... accelerated.

It was a horrible struggle to let go and grieve leaving my last workplace, without judging or accusing. "You took my [whatever]!" As time went on, it became clearer that no, it was simply time to leave. What they (whoever They are) do, that's on them. Choose the path, choose the consequences... the path They choose is their path, and the benefits and consequences are theirs. Not mine. If I choose to weigh myself down, that's on me... and I do not choose to do that any more. Been there, done that. As Stephen Colbert likes to say, "Moving on..."

But not just watching the end of the train moving away, but actually speaking truth to experiencing the loss, truly grieving... that's different. So many things are gone... my driving. Riding a bicycle, still hanging untouched, and untouchable, in the garage. Let's not talk about playing the organ, that's been something I've been working on grieving for quite a while... Same for playing timpani and drum set, all kinds of percussion... Gone. For now, at least, but for now at least... gone.

Bathroom stuff... standing up to brush my teeth, not always a good idea even to try that, and of course the Elimination Polka, which is doing many things but "getting better" ain't one of them.

"Stopping caring," or as usually happens, saying that you have stopped caring, and grieving, are different. Very different. As past master of Denial in all its insidious forms... Very different.

So, I don't need to swim through the sea of anguish, but to tell the truth with love... and when it calls to me to do so, to grieve with love...

Quite a gift, indeed, should I choose to open my hands and heart, and receive it.




Wednesday, July 30, 2014

Words to live by

Bathroom remodeling proceeds apace. I may take to the bed until they drive me out with their enthusiastic banging or reassuring (for them) AM radio still playing the hits of the '80s, like Donna Summer Disco Madness.

Wife and mother-in-law (that'd be her mother) having fun. All goes well.

I'm not writing music again, yet, in'sh Allah, but I'm sitting up at the moment, at least.

New pu erh tea this morning, courtesy one of Karen's friends. Quite nice, actually!

And I think I'm hitting the wall already, so that's it, for now. Pay attention and go with the flow, valuable words to live by, MS or not.

Tuesday, July 29, 2014

What you can get

It has been an interesting week. Wife has been at ComicCon, having the time of her life--which I am definitely all for, I've never really been a "vacation" type, who goes somewhere just to recharge, so when someone does it (recharges), I'm definitely for it!

Have been very tenderly cared for by Karen's mother, visiting from Louisiana. A godsend, she has been, and we have had quite a bit of fun. Even introduced her to the yummies at Ten Ren, including almond-milk black tea, which she loved! (She's a black-tea person, not the oolong kook that I am. Lord knows, definitely not a fan of matcha. Oh my, no.)

House Guys are rigging the back bathroom to make it more handi-friendly. It's already much more wheelchair-friendly, they widened the door and everything. Although, the more they work on it, the clearer it is that the people who converted the garage into a bedroom/bathroom combo should probably have watched a few more home improvement shows. Several more.

But even things like simple handles and handrails make a huge difference. Huge difference. I'm well out of the "wall walking" stage I used to be in, what little "walking" I do is pretty much my P/T, but I'm able to do it with handles and other things to carry my weight, so as far as "bad" goes, it's actually pretty good.

MD/acupuncture/dharma talk day, today. A fine thing to do in a way-too-hot LA day, when the A/C's may be off while House Guys work on the bathroom, rerouting a wire that runs directly through what's best described as WTF territory. They'll fix that, too, and good for them!

Karen's mom will be with us for at least a week more; it'll be nice for Karen to have some "mom time," as well as providing additional generous care for both me and the house. (Moms always clean amazingly, don't they? A blessing for us all, the gift that keeps on giving.)

Meanwhile, we'll be enjoying the A/C at home, since outside the phone predicts its gonna get up to nearly 100. Which my legs like, but wracks my core; I'm both heat sensitive and cold sensitive.

Well, take what you can get, right? And sometimes, it can be quite wonderful. Surprisingly wonderful... even delightfully wonderful!



Friday, July 25, 2014

If you let it

Hotter than the hinges of Hell, here in Sou Cal. Thank God, every one and each of them, for my humble little window-mounted A/C's.

My handyman-neighbor is working on the back bathroom, to make it more wheelchair-friendly. One of the first things he put in were handicap bars (for support in "walking" from the door to the commode), which were a godsend. Irritated me, at myself, for waiting so long to have that done. Very easy it was, just get the correct equipment and use it correctly.

Why that seems so bizarre a concept for so many people in so many contexts, I have no idea.

Wife is having the time of her life at ComicCon. Quite the amazing place, from what I see from this distance...

I don't go, for several reasons, but a very important one of which is WIFEY NEEDS A VACATION. By herself, without MS-wracked-invalid-husband to take care of. No, she's there to do Her Things in her Own Way by herself. Of this, I approve. Big time.

I don't think I have been on a "take time to heal yourself and just have fun vacation" in years. If ever. I've had fun going paces, but never just cut the strings and take care of yourself and just have fun. Well, I do take the time to enjoy my favorite izakaya when I'm inVegas, but that's pretty much as close as I get to a "treat yourself" vacation.

Must be nice to do that. Should do that more, somehow.

Been reading and enjoying Ram Dass on the web. Many good thoughts to think about, good questions to put before myself. A lot of my own processing seems to call for simply using the Witness. Rather than "that annoys me" or more (too) commonly "They annoy me"... "They" does change an awful lot, just be truthful. "That pisses me off" isn't as healthful as "I see that. I feel angry," because that path will show you where you need to do work.

If you let Them, They can be your teacher.

As can MS.

If you let it...



Saturday, July 19, 2014

Yup; I'm attached

Man, yesterday was a day I do NOT want to experience again.

Lost the ability to control my hands... fingers would just casually curl under, which meant I couldn't place my palm on something to get a purchase of any kind.

About 2-ish AM, somehow managed to get into the bathroom for a quick cath-ing, but then, trying to make it all the way back to the wheelchair, I couldn't raise my knees up high enough to free my feet from the floor, where they seemed to be quite stuck (friction, not stickiness). Somehow made it back into the wheelchair, somehow made it back into the bed.

Earlier that night, I was so unable to control anything and slid out of the wheelchair onto the floor, from which thank God my wife was able to free me and put me back into the bed.

I was mired in a sea of "I can't do anything." Yeah, I've heard it before, don't say "can't," to which I want to reply "YOU try driving this body around at this particular moment, and you'll understand what 'can't' really means."

5-ish AM Morning Cath jaunt... transfer from the bed to the chair, "walk" from the chair to the commode, cath with no problem (yesterday, there was a time I had so little hand control that I couldn't lube my catheter without assistance), "walk" back to the chair, transfer back to the bed. No problem! Problems? What problems?

Yesterday was hell. Today is what nowadays passes for normal. But, at least, it passes for "functional." It's certainly "normal enough" for all practical purposes.

Now, yeah, I know that we who have chosen this incarnation have enough issues to deal with already, man that is born of woman hath but a short time to live and is full of misery and all that. But, WTF? WTFingF?

I know Neurological Nonsense, however it is expressed, is always a moving target... but c'mon, really? Really?

As one of my former students said, while pointing at an architectural oddity...

What's up with that?

Someone on FB has a picture of, maybe it might have been Krishnamurti, who said "I got a lot happier when I stopped minding what happened."

Well, I want to get out of my chair and into the bathroom, and out of the bathroom back into my chair, and from my chair back into the bed.

And if I can't (screw you, sometimes I actually, observably can't), I mind.

That, I definitely mind. I can't empty my bladder without a catheter, that I don't mind. I've been having bowel issues and sometimes need suppositories to "shake things up" enough to get them moving. That, I don't mind.

But I can't get comfortable in the bed? I can't get out of my wheelchair into the bed?

That... I mind.

Attachment is an insidious thing. This journey along the Neurological Way has certainly shown me all sorts of hidden, nasty, attachments. The teaching of which I have welcomed, and still seek ways to free myself.

But getting into bed? Getting into a position, in the bed, that will reduce rather than exacerbate a headache? Getting into and out of the bathroom so I can not die from the urine in an unemptied bladder frying my kidneys?

Yup. I'm attached.

Wonder what the Buddha would say about that?

As they said in the Legend of the Rangers, "We live for the One, we die for the One... but we don't die stupid."




Wednesday, July 9, 2014

... ... long pause ... ...

My kyudo teacher often tells how someone told him, "An hour of practice is an hour of practice."

It's 10:30 in the morning. I wanted to come to my computer, do... well, something... and then maybe write some music.

Actually, I want to lie down and give up. The last time I tried to write music, I made something like four measures. And then lay down and gave up.

Well, to paraphrase my kyudo teacher, four measures are four measures. One note is one note.

And yet, I just want to lie down and give up.

So, what is going to happen? What is ... about to happen?

Who can say? ... ... ... ... ... ... A long pause. Fingers, especially on my right hand, are pretty much checking out or splattering text as I try to "type." Today, I think I'm about at the end of ... trying, and sitting up.

Am I already at the end of ... today, in the land of "doing things besides lying or struggling with the bathroom (something I do all the time I try to use that room... struggle, that is).

So, do I give up for today?

... ... ... ... long pause ... ... ...

Who can say, until we get there? Just like life, ain't it...?

Tuesday, July 8, 2014

For now...

This was a blog entry of a few days ago. You'll understand why the title leapt out at me...

Is "better" possible?

Seth goes on to say "The easiest and safest thing to do is accept what you've been 'given', to assume that you are unchangeable, and the cards you've been dealt are all that are available." He's living in the "business world," but we MSers, we face this question all the time.

It hung me up repeatedly when I was in the hospital, it faces me every time I see the latest cash-cow-du-jour Fabulous New MS Drug. I would ask "And this is going to make me feel... better?" and just hear the rattle of the air conditioner. I hear a lot of things like "X is thought to [whatever]," and I know that's legal mumbo jumbo, but it just torques me off. My reaction: "You want ME to take this, but you don't know what it does?"

I take stuff all the time. B12. Thyroxin. Herbs, herbs, herbs, and more herbs. My care givers tell me what these things do. They know what they do, and more importantly, they know what they do for me. Here and now, as Ram Dass would say. Chinese herbalism is all about this... take this today, because today, this is what you need.

Yup. I've been spoiled.

We MSers, and Lord knows, certainly this MSer, that'd be me, need to accept what we're given. Because the way I am today, is the way that I am. Today.

I try to do it non-claiming-permanent-disability style. Yeah, I can't play organ. Today. Very, very different from "I can't play organ any more" or "... ever again." That's an easy, NLP-class of approach. I try to tell the truth at the time I basically "hit the wall," and once I am quite sure that I have indeed hit the wall, I give up... today.

But that's all I got. To give up... today. But not tomorrow... today, at least.

All sorts of people have said the same thing. Physical therapists, Rolfers, many many folks... There's a big difference between "hurts good" and "hurts bad." If it hurts good--do it. Strive for it. Enjoy it. If "hurts good," after all. But if it hurts bad... stop.

My "hurts" in dealing with the computer to write things like this, or maybe even music... Physically may not hurt bad, but face-planting into "my hands don't work so good," that hurts bad--emotionally, certainly. But when it hurts bad (emotionally), it definitely hurts (emotionally) pretty darned bad.

And I have definitely hit the wall, emotionally (with malfunctioning fingers) and energetically... yup, I'm done. Definitely.

For now... For now and today, at least. But later? Tomorrow? Who can say?

We'll find out when we get there. To "later," that is. Well, Ram Dass would remind us that "now" is all we get. And so, hitting the wall, is what I have.

For now... When "later" gets here, we'll see what happens then.

For now.

Thursday, July 3, 2014

A conflict that demands your choice

I wish I could have just a good-old-fashioned talk with Alan, B-san, the balloon that is my bladder. (Certainly anyone following the news recently has wanted to have a "Really, dude? Really?" conversation with all sorts of people...)

A recent Big-Time anti-smoking campaign, in heavy rotation on Adult Swim and as you might imagine is aimed at teens, features a young lady quoting someone unnamed (but which is eventually revealed as a cigarette) saying "Outside! NOW! (she protests, the "someone" repeats...) Outside! NOW!" and this unnamed entity is described as "so needy..."

Alan has also been needy, recently. He doesn't call for going outside, he calls for a cath. "I want to be emptied! NOW!"


Well, that is his job after all, but there's not-even-vaguely-full, definitely-full, and surprisingly-full, as revealed by the cath process itself. Alan tends in recent days to scream really loudly about having a desperate need to be emptied, but at the end, what gets cath'ed out fits into the category of "I think the bladder doth protest too much," to paraphrase Shakespeare.

If I'm chugging down the oolong, a lot goes in and a lot comes out. That, I can deal with, easily. When Alan is full to a certain point, he is definitely psyched to "enjoy the spaghetti" (one of his favorite foods on his cartoon series) and let the fur fly, as it were.

Issue is, after screaming desperately, he might very well show little to no interest in "enjoying the spaghetti" (getting the cath even to, much less through, the "prosgate," as I phrase it), but still screams about being ready to be emptied.

And so needy, as the commercial describes it.

A pause... Alan desperately demanded attention, but thanks to the charming diuretic nature of the morning's oolong, this was the opposite of a false alarm. A very worthwhile event, definitely "worth the trouble."

You take what satisfaction you can, eh?

Piled on top of that, I have been hoping to do some music stuff, for a change I actually have workable ideas, but my right hand appears to be going on strike. A "sorry, but I can't do shit" strike. I try simply to grasp and hold something, and my hand feels like it fails utterly and horribly and heartrendingly, but when observed impartially, it's merely out of control and completely insensitive. Which isn't "failing," officially, but I find it utterly disheartening; it's so hard to take, even my normally very creatively colorful profanity fails me.


Yeah, in the picture Finn is holding the sword, but if it had been me, by now it would have been just dangling.

I supposed I should "try" to keep going, but I'm definitely on the edge of giving up. Finish here with you, look into one other thing, at least set up starting to write the music, but... I think, hard as it may be, it may be important to try then actually fail rather than just giving up.

And a second after making that decision, my right hand, with which I had been sorta-kinda typing at least a few letters here and there, pretty much just failed. It does, push individual keys, which is what "typing" is all about, it just slid into incoherent mashing. Which my left hand is close to, but thank God isn't nearly as bad. Today... as for tomorrow, who can say?

So, try and fail, or just fail and be done with it? As Glorshon Wars said frequently, a conflict that demands your (my!) choice.


Tuesday, July 1, 2014

Take what you can get

Man, some of my fellow MS-bloggers are so very cheery! This entry starts with a smile!


Cheery, I don't do much, on a daily basis. Although my wife always makes me smile. She's amazing!

I gotta tell you, friends, you really really really want to find someone who practices Classical Five-Element Acupuncture. It's delightfully life-changing... it even makes me smile like that (see above), wheelchair and all.

Four needles can change your life. Sometimes, just one.

They identify this condition they call an "entry/exit block." There are twelve "officials," each with its own meridian, and energy moves between them in a certain order. If the energy is supposed to go from meridian A to meridian B but doesn't, that's a block. You open the block with four needles, two on the exit points, two on the entry points.


Being blocked is no fun at all. What actually causes the block is specific to each person, some seem more prone to certain blocks, my guy tells me that leading up to Tax Day on April 15th, everybody he sees is blocked, but that's another story. Sometimes it's a shock, some times is just being startled, sometimes it's rage, there are all sorts of reasons, but they're always bad. Sometimes very, very bad. Some especially nasty blocks have brought me to the point of full-on suicidal; yesterday's block brought me to a place not that bad, but to a place where dying, just happening to kinda accidentally just happening to die... Well, I don't necessarily want to facilitate it, but it would be convenient... at least I wouldn't feel "being fine with being dead" the way I did then.

Four needles, and life is worth living again. NO SIDE EFFECTS.

Now, there are a couple of Bladder meridian points, next to the sacrum, that My Guy said that his teacher called his "MS points," I'm not personally convinced they do much for guys like me, but it's worth a shot, you know, no side effects and all. I can tell that they do something, but what, I couldn't tell you.

Other points have much more immediately perceived effects.Yesterday, I got Kidney 25 I think is the number, named "Spirit Storehouse," which also improved my outlook!

This MS stuff nobody can address, really, because really, nobody knows WTF is actually up, but vague unhappy-just-to-be-alive, these Five-Element folks can take really good care of.

And what else does MS teach us, no matter what kind of health care we're getting? What does it teach us very, very quickly?

Take what you can get.

Sunday, June 29, 2014

Deal with it

Thoughts on the veranda, this evening, about the MS Highway...

We all know that we're only visitors here, just temporary residents; renters, perhaps even. With years come changes, and saying farewell to our previously ever-so-reliable bodies, one small but beloved bit at a time. And with the gentle farewells, saying farewell may come easier, more gently to us.

The MS Highway is nothing more nor less than absolutely normal human life, but on a different schedule, a different approach. With different purposes, perhaps, even.

Imagine, if you will, suddenly finding yourself on a highway stretching into nowhere, in an otherwise absolutely bleak desert.



There is absolutely nowhere else to go, no other way to go than the way you're going, right here and right now. All you can do is follow the road.

And your absolutely only option is to say: There's nothing else to be done. Deal with it.

And that's life on the MS Highway. Something you always relied upon isn't able to be relied upon. Something you've spent your life doing, suddenly, you can't do any more. Things you took for granted are as good as just-plain-gone. There are moments of extreme beauty, when you realize that your beloved is even more amazing than you could ever have imagined. But most of the experience is with malfunction, forced changes, and loss.

But sucky as that can be, you're still on the highway. And there is only one option: follow the road. It only leads in one direction, where it ends up I have no idea, but there is only one direction: Forward.

There's nothing else to be done. Deal with it.

But that's life, plain and simple. Things change. If you want to stay on the Highway of Life, there's only one direction to go: Forward.

There's nothing else to be done. Deal with it.

That's another story

A simple day so far. The usual Bathroom Stuff (which basically every creature on the planet does anyway, nothing MS-y about that, at least, us MSers just have our own... challenges... with such things). Managed to order a birthday present online for my parents; I had gotten my brother (with whom parents are hanging, doing the Grandparent Thing) some artisinal flavored salts which went over hugely, a tremendous hit indeed, so since they have all been raving about them, I ordered a different sampler pack, dang this "internet" is convenient! Besides, my mother apparently really just-plain-loves salt anyway, so it's win-win. So far. Plus, I'm very happy that as they're living the Golden Life as Grandparents, they're able to show the wee ones that other people's birthdays are important to celebrate too, a "teaching moment" as they say in the trades.


The "parent path" is not one that I chose (or one that did not choose me, as one may want to look at such things), but I do make a dynamite uncle. At least, so I like to think.

Used today's energy so far to order gifts, check medical-supply orders, diddle some other business-y things via the web. And this. Dunno how much steam I'll have left when I finish this, but we shall see.

Still thinking about the disposition of my dear little truck; years ago, I had not just planned, but dreamed, to leave it to the wee ones above, imagining that the older one might be due it by right of birth order, but I further expected that the girl would be the one who fights most enthusiastically to call a pickup truck hers, much to her parents's dismay and laughter, but that road ain't gonna be traveled, as far as I can foresee... Details about truck disposition to follow later, when I figure out exactly what needs to happen.

This particular bit of the MS Journey has been... interesting. Saddening. Frustrating. Withering, especially withering. But also revealing... last night I realized that I still hadn't really bid farewell to some specific frustrations at my former workplace... As Ram Dass might say, if they don't appreciate you, that's on them, but if you're hung up on them not appreciating you, that's on you, and that's what you need to deal with. (You can't fix Them, after all...) I processed some anger and resentment, merely identifying and acknowledging that it just was... and I think I actually feel better today, having done that "inner work."

Well, ain't much we can do neurologically, but spiritually? That we can definitely see to... I can't do[insert very, very, very long list] all sorts of things, but be honest with yourself? That, we can all do. And probably should do more, eh?

Oh, one ting I really wish were available... Neil deGrasse Tyson has been doing incredible work explaining the cosmos with, well, Cosmos, and I encourage you all to watch and enjoy it. The other day, my MD was telling me that one's nervous system doesn't actually cause the bowels to "fire" (start the expulsion process) but rather, nervous system "regulates" (his words) the system, and difficulties arise when said nervous system can't regulate things properly. Ah, if only Dr. Tyson were revisiting the imagined series "Poopage," rather than "Cosmos," we'd really learn a lot about how such things work, or in some of our cases, don't. But I can't see PBS running that series, although given Seth MacFarlane's work on various animated series, I think we have a good chance of getting it created. An unfortunate metaphor, given what I was discussing... but that's another story.

Saturday, June 28, 2014

Time to give up

Still withering. Big time, if such things can be said of withering.

Wrote an e-mail. Gonna try to write a response to the one I received.

I'm not even trying to type with my right hand today. And just had to shoot a few minutes recovering from the meatball typing I do with just my left hand, which does not make me feel good at all.

And just had to use MORE time to inspect and rewrite. AGAIN. Yeah, I know we all make typing mistakes, but I usually catch them faster when I can watch the screen, which I can't do nowadays, because not watching the keyboard as I type makes things worse.

Well, that's it for today, at least here. Quick message responses, and then I give up.

There's not much else to do, right now, besides give up.

Well, better get to it, then... Including, alas, giving up.

Wednesday, June 25, 2014

No fun at all

My herbalist says that MS is spoken of, in his circles at least, as a "withering" disease.

Well, nowadays, that's definitely me.

I'm having really unenjoyable experiences just trying to use my right hand. Hold a spoon. Rinse a cup. Use a whisk to make matcha tea. Use my right hand, and start crying out not in pain, but in despair.



Sometimes I think I'm getting better at making the whisked tea. Sometimes... I just despair.

Let's not talk about typing. Poor hand control is adding at least 25+% of time merely to correct slovenly typing mistakes. I've pretty much given up using my right hand even for hunt-and-peck typing, because I can't even do that well enough.

And now, a snack, and bed. My wife wants to do something with me outside the house today, maybe, maybe, that'll happen, but frankly, I just want to go to bed and stay there.

Not a "primary" gifts-of-MS day, so far. Maybe it is, but I just don't see them right now... all I see is despair.

No fun. No fun at all...

Friday, June 20, 2014

Giving up or letting go

Seems to be "biting the bullet" time of year.

Another of my esteemed MS-blog friends mentioned that she had also let her driver's license lapse, her husband does all the driving for her. I was very pleased to do the driving that I could when I could, because I knew the day would come when I couldn't.

For now, at least, that day seems to have come.

I had hoped to drive my poor little truck for at least another decade,  when I'd pass it off to my nephew (although, honestly, I think he'd prefer a car, I think my niece was going to be the one who wanted a truck). That's not going to happen... I think it may just be time to sell my poor little truck. Time to find someone who wants a pretty darned bulletproof little truck with high-grade hand controls, and let them enjoy the freedom it can provide. I suppose I'll need to put it on Craig's list or something, that's something else to look into, I guess.

I'm gonna need an entirely different vehicle to drive. Assuming, of course, that I can get the driver's license nonsense settled. My truck gets on the order of 20MPG, which ain't much to go on but if all you do is drive a few miles a few times a week, it ain't so awful... my wife's Prius gets, if I can believe its dashboard, between 50 and 100MPG, depending on where and how it's being driven.

Maybe it's time for someone else to deal with 20MPG vehicles. It is a nice little truck, though.

I'm going to talk to my dad about this; at one point, they finally up and sold the 1967 VW bug that was older than my "little" brother. Not so "little" now, college professor and dad of two children. But they managed to let go of a perfectly lovely vehicle, which had been very dear in our hearts for decades.

Because it was time to let it go.

We MSers, we face that all the time, if my experience and what others have shared with me has clearly revealed. Hell, here I am typing only with my left hand, because using my right just gushes with error after error. Is it just bad today, or is it time to just let go?

"Give up" and "let go" aren't interchangeable, but functionally, they're pretty damn close...

There can be victory in letting go... if that's what we choose. There could even be victory in "giving up" depending on what you're giving up...

As they said in The Phantom Tollbooth, it's all in the way you look at things...