Wednesday, April 16, 2014

Crazy and amazing; and "can'ts"

It dawned on me (as it were) last night, in the post-eclipse moonlight. Has nothing to do with said moonlight, which was significantly brighter without the Earth's shadow in the way, but that's another story.

But what dawned on me was this...

The journey with MS is all about control.

Not the "control" that's ripping the political system in shreds... but rather, the most intimate of control, the control over our own bodies.

We MSers each have our own list of personal, intimate "non-control" issues. Walking, or not. Transferring from anything to anything else. Or not. Using our hands, or not. Getting up a flight of stairs (even calling a "flight" one or two steps), or not. The panoply of elimination, or not, issues. Pain, or not. Spasticity, or not. Or all of them. Or some of them. Or combinations of these issues in ways that are different... always different.

Even non-MSers are rife with biological control issues. A huge amount of our locomotion systems (neurology included) are there simply to battle gravity. Which, oh Lord, can we so not control. Pregnancy, we think we can control, but really, how well do we humans do that? We want it to happen. Or don't. If it happens and we want it, we want it to last until baby is ready. Sometimes it doesn't. Baby emerges when it wants to, because it sure doesn't happen on our terms; yeah, there are pharmacological things that tend to work... most of the time. Except when they don't. Athletes, musicians, there are all sorts of us with "personal, intimate, control" issues. But those somehow are perfectly natural, perfectly normal, and pretty much everybody can help (alas, or not) us deal with those.

We MSers, and certainly me the MSer, are bombarded with "Don't say can't." I can't stand up, I might say. I'm told, don't say can't. I can't get up, I can't get down, I can't transfer from X to Y, there are a lot of moment-to-moment "can'ts" that change from moment to moment. We get bombarded with "don't say can't" if any of those problems arise (or collapse, depending on the moment).

At least, the more intimate our "control issues" are, we get a little more space. I can't pee without a catheter, I could very easily say. Thank God, nobody responds "Don't say can't" when you talk about your bladder issues. They don't say that yet, at least.

But all of our MS issues, they're all due to bad wiring. Bad wiring to the bladder, bad wiring to the legs. Even bad wiring within the brain... It's all bad wiring.

And yeah, go tell my nerves not to say "can't" when they want to conduct electrical messages and aren't able to, not because of my attitude but because of biochemistry which is completely out of my or anyone's control, and see how far that gets you.

About the only thing we can control is our thought, and our self-expression. Frankly, though, I don't know if my caregivers will (as it were) care if I say "I can't get up... at this particular moment" rather than just "I can't get up."

The guy I know who has been in the Cath Club for eight years is not going to be very quick to change the way he describes his bladderly adventures. Although, if pressed, he'd agree that it might very well change. My doctor had a patient who had been MS'ed into a wheelchair for twenty-five years... then one day, he got better, got up, and walked out of the hospital. These things do happen, after all.

But not, as far as I can tell, because they were described differently by the person who was affected, disabled, by them.

But, then, what's the bottom line, for us MSers (or just plain humans, for that matter) who have these neurological control issues?

As a friend of mine said he learned from his time in a Zen center... pay attention. Just witness it. Yeah, it failed. Just witness it. Yeah, it ripped your soul in half. Just witness it.

And for something so easy... that's hard enough.

For now. But that can change...

Even when you say "I can't," witness the "can't-ness" and your reaction to experiencing the "can't-ness" of neurological failures.

As Ram Dass is famous for saying, just be here now.

Which, in this crazy and amazing world, in this crazy and amazing life, in these crazy and amazing bodies, is a crazy and amazing place to be.



Tuesday, April 15, 2014

And therefore...

Last night's eclipse was... awesome. I tried to snag some pix with my phone, but the iPhone is not really an astronomical-photography kinda device, and Pasadena is ever so generous with its low-hanging nasty-amber-light street lights, but other folks had much better stuff to work with...


This was a "quiet bucket list" moment for me. I've seen a few partial eclipses, but never a total, and never one that had the dull-red glow that books and magazines had foretold. We had a bunch of city trees in the way, but although I couldn't get a good picture of all three of moon/Mars/Jupiter, we could still see them. And they were all... cool. Very, very cool.

And although I didn't make it up to the vaguely-local Griffith Observatory, I can only imagine that every square inch of lawn was taken up by stargazers, many of whom would have brought their own telescopes, and (I also imagine) would have been complaining about how if L.A. would only have had the sense to turn off the city lights, maybe then we could have all finally gotten a decent view of the sky.

Two nights ago, I was enjoying my nightly look at the sky, thinking about the next night's eclipse, and then thought "Gee, I wonder what it would look like if we had two moons?" You know, the sort of thing those of us who grew up with the original Star Trek series remember quite fondly...


And then I thought, "I imagine it'll look pretty much just like it does now. Except... with another moon."

But looking into the sky with MS-gifted hypersensitivity was a wonderful, wonderful experience. Something about dim light off the Earth shining on the moon (like how you can kinda sorta see the new moon vaguely illuminated just enough to kinda sorta see it) really points out the moon's three-dimensionality. It's not a plate, it's a sphere (ok astronomers, it's close enough to a sphere, just leave it at that for now). It's a neighboring object that's as real as a tennis ball, as real as a bowling ball, as real as the thing we're all riding on, this Earth. And then the other two planets with whom it shared the sky... they too seemed very clearly to be objects, not just dots. (OK astronomers, I know the stars are spherical-enough objects too. Work with me here.) But they were very clearly co-travelers, just like us. They're each wonderfully individual, they're each full of mysteries, they can surprise you with how brightly they shine, and if you're able to look closely, you'll see even more amazing things... undiscovered things.

So yeah, I'm still wracked with neurological nonsense, there are things I really really want to do which are physically, to all outward appearances, still ostensibly within the realm of "possibilities" except sometimes I can't even begin to scratch at them because "outward" may be willing but "inward," at least as it expresses itself with "enough inward energy to sit up and do something creative using the computer," isn't working so good.

But MS or not... just look around you. Really look. And enjoy. Because, as the anime Kino's Journey always began, "The world is not beautiful. And therefore... the world is beautiful."


Monday, April 14, 2014

Let's do that again.

A possibility... something worth further experimentation.

I feel like I'm in a world of "hitting the wall." I seem to hit the wall regularly, sometimes "constantly," and sometimes unavoidably.

Further compounded by my "eating problems." Not "too much eating," more of an "at all" eating. Not experiencing "hunger" as I always used to, I can run for way, way, way too long without eating anything. Someone says that not eating for that long is a bad idea, you need to eat, here's something... and I just push it away, because I can't bring myself to eat much, if anything.

But, I think I'm starting to see an actual "system," or at least a "method," to try. I'll talk to my Medical Team this week, but initial experiments suggest success.

First:

Don't "run empty." And Lord knows, not for hours after hours of empty. One herbalist said don't eat three times a day, eat five, just adjust meal size accordingly.

But I think a good use of my energy is, of all things, snacking. Prudently, but yeah, snacking. I can sometimes feel like "Gee, is that my stomach telling me it's empty?"

But a good, healthy snack. A favorite is daifuku mochi,  a nice size, easy to eat, and (at least, I like to tell myself this) it's a "complete protein" of rice and beans. But whatever, it's tasty and good. So we start there.


Fruit works for snacking (herbalist likes us to keep the sugar in the fruit under control, but a few pieces are just fine). Slices of ham, even, work fine. The back garden is currently gearing up for tomatoes, but as soon as they're available, I'll be psyched to roam about and pick one and enjoy it!

Two huge things that affect my eating; can I "operate" it (e.g., get it to my mouth without bouncing it off my chest, lap, or floor), and is it light enough? Sometimes I simply can't bear to eat without helping myself to certain of my medicinal herbs, but the right food is easy and interesting and yummy, which is the threefer for success. We went to a new sushi bar the other day, which apparently has a yakitori division in the back but with far more on offer than the traditional chicken, but man, lemme tell you, after having had months (years) of "don't ask me to eat that because I can't bear to eat anything" knocked out of the water into "fun and edible" just by a sushi bar... that's definitely a road to follow. Small, tasty, nutritious, easy to handle (hands not working so well nowadays, so "just pick it up and go" is really nice) and fun to eat because it's nice and light even after all that flavor. I'll definitely take that.


So here I am at 3:00PM-ish, when in past days I've hit the wall and crashed and burned and spent the day lying in bed, maybe (probably) sleeping, and instead here we are in the middle of the afternoon and I'm still sitting up and typing (well enough, at least, even that's also been an issue recently) and I am not hitting the wall.

Good change, not hitting the wall. There are a few things one is not likely to say in this MS world, but here we go...

Let's do that again.

Not hitting the wall, that is.

And eating enough of stuff that's good and good for you?

No adverse side effects, there. Yeah, I guess if I gorged myself like a pig for hours and days and weeks, one might not immediately think of that as a "good idea," but considering that the other day I was "standing up" to move from the wheelchair to the car and my pants simply slid off and hit the ground...

I've got a long way to go before "eating too much" becomes an issue.

For now... sushi bar, ho! Ten Ren tea for dessert. Not a bad combination!

"Good" comes in many packages, some of them fancy, some of them humble and small. But "good" is always...

Good.

Let's do that again.