Wednesday, April 30, 2014


Well, we've apparently come to That Time of Year...

Weather Channel says it's 80 here in Pasadena at the moment, but it's gonna go up to 96.

I am become, as I have been for several years, Schroedinger's MS Patient.


I go outside into the heat, and like so many MSers, I don't enjoy it at all. At all.

From the waist up, that is.

Hundred degree heat, I've even been in, and from the waist down, my legs are happy. Very, very, happy.

"Oh, finally it's warm enough!" they say. "How wonderful!"

It's quite the conundrum. Get out of the heat because it makes me feel bad. Get into the heat because it makes me feel good.

Wherever I go, I'm happy. And unhappy. Or something...

Ram Dass speaks of suffering as grace.

Well, sometimes we MSers, we've got a lot of suffering to deal with. Which means we have a lot of grace to...

Deal with?

Now, that's a problem we could all use more of, isn't it...


Tuesday, April 29, 2014

I'd love to chat and such but I'm not sure how long I'll be sitting up. At anything, computer or otherwise. Writing music requires sitting up at the computer. Writing this requires sitting up at the computer. Heck, ordering home-delivered medical weed requires sitting up at the computer.

Which I'm not going to do for much longer since I'm discovering new "I'm in constant pain" pathways.

The last time I had the oomph to write music, I did what I've attached below. Yeah, I might want to tweak the production values a bit on it, but considering how much sitting here typing this hurts... that'll wait.

But here it is. Meditation music; a friend of mine likes to do verbal meditations, I made him an underscore. I hope he, and you, like it!

And then... back to bed. Where, with luck, I'll be in even a little less pain.

Saturday, April 26, 2014

A good combination

I was hoping to  tell you about the wonderful little birds rejoicing in the back garden. I learned yesterday that they are "house finches." Very sweet, and very sociable. They seem to like to just talk. A lot. Which is very sweet... as are they.

To give everyone a break from My Travels With Elimination. Which are ... no fun. For anyone.

Instead, we're gonna talk about ... falling.

Yesterday, I was trying to transfer from my wheelchair to the bed, I might have been occupied with something that I thought was going to cause no problem except it did, and my legs just gave way and I just went down.

Now, here's the thing: How your [everything] malfunctions depends on YOU. Because, at the core, it's your nervous system that's whack, and what does or doesn't work is very ... personal. So there's no real point to looking at why something went south taking you with it. If you see some sort of system of "I do X and then I fall in Y manner," you just don't do X and you're fine.

But the most important part about falling is that you hit the ground on your terms. The bottom line is that the force of the impact needs to go somewhere other than you, and if it does, it does so over a larger area and thus risking less injury.

I spent years in college practicing aikido rolls and falls. I freaked out a physical therapist in the hospital because I didn't stop myself by catching myself on my wrists (which too often ends in breakage) but instead by slapping the "mat" (or whatever it was) and rolling a little bit. "No," I told them, "I'm falling right." But aikido and judo are not so good in the "your support just disappeared and you're going straight down. Or maybe not so straight..." department, which is what happened last night.

So I'm going down, and I'm thinking, "Now how am I gonna do the least damage?" Remembering the Mythbusters doing major falls into soft objects (we let the soft object diffuse the force of the fall, so it doesn't go into us), I know there's piles of stuff and whatnot, and if I don't fall into those, I'm gonna smack my head on something or other and that's not good, and I'm going down into kind of a corner so I've got no room for aikido tricks (we don't practice being thrown into a corner, which often means "being thrown into a wall"), I've got to let the whatever's there take the force and hope for the best.

Well, one of the things I fell into was an aluminum trash can. And, fortunately enough, it crumpled, and that's what ate the force. Yeah, I did get bunged up kinda bad by the rim of the can, I cracked a rib earlier while I was still "walking" by pulling the television over on to me, and this doesn't feel like a cracked rib, but dang, it hurts.

So, I got hurt, but far less than I might have been... which means, I guess, that martial arts, Mythebusters, and blind luck.

Apparently, a good combination.

Thursday, April 24, 2014

Hope springs eternal

Not a good day, and a good day, and not a good day, so far. Pretty much SOP for the MS Highway.

I have definitely made not just peace with, but friends with, Alan (the bladder). Alas, I'm having bowel problems this week, and I haven't yet come up with a good image of, mentally or graphically, whatever entity it is that is both causing and relieving my problems. This is all I got, for now... The "guy" on the right, of course... He seems to have the appropriate attitude about "cooperating" with what will make things better for everyone. Especially me.

I was driven to magnesium citrate as my only option, because whatever issues there are, are far upstream of the gentler, more "mechanical" treatments. Lemon-lime flavor, because it doesn't have any funny-chemical colors.

However, besides magnesium and citrate, it's definitely full of really yucky stuff. Saccharine, for example, which I avoid assiduously. Most of the time.

This is a popular choice for people needing to "clean everything out," for example when doing intestinal scoping and such. I gotta warn you, drink a whole 10 oz bottle at once and get ready to call out "Man the pumps!" when It happens.

I did that once, drink an entire bottle at once. Never again. This time, I took about 18 hours to "split" my way through the bottle. It seems to be working, sort of, but without calling on Hindenburg-esque explosions.

I haven't made my peace with that part of the elimination system, yet. When I get a good image and a name, maybe things will get better. Starting to talk about, and to, B-san as "Alan" has actually made all sorts of things better. Yeah, he still spazzes and leaks, but cathing is becoming downright easy and pleasurable. Ah, if all I needed was a name, I'd have done that long ago. But it's hard to personify, say, your transverse colon instead of your sigmoid or descending colon. At least with Alan, I know where the problems--and solutions and workarounds--are.

Magnesium citrate ("mag cit", pronounced "mag sit," as my MD calls it) relies upon water, getting it into the colon to lubricate things from the inside, as it were. From what I read on the web, and friends, I gotta tell you there is no lack of NON-expert opinion about this stuff, like I need that, drink a ton of water to assist the mag cit; which, by the way, is confirmed by my MD as a good way of helping "things move along" with or without magnesium. Great. Well, I'll be keeping Alan busy and happy, and happy bladder is happy me. Well, it does keep me... busy. Like I need that, he keeps me busy all the time anyway.

Beautiful spring day outside; hummingbirds are totally into the geraniums. And tomorrow... with luck, the 15-plus-year-old washing machine which died monumentally and spectacularly a few days ago, will be replaced by a new one. Wife Karen took an audition this morning, at which I know she was thoroughly excellent whether they choose her or not.

And with even more luck, the mag cit will work, with a little help from wild pu-erh and other oriental herbs, and I won't have to have more of that nasty mag cit stuff.

And with even even more luck, tomorrow, I might even write some music.

Hope springs eternal.

Friday, April 18, 2014

His name is Alan (apparently)

I think I'm starting to rename B-san, "Mr. Bladder," to something far less formal. As I've written before, he reminds me of the balloon from The Amazing World of Gumball. His name is...

Alan. Yup, his name is Alan, the balloon who's in love with the cactus. But that's another story...

As you can see, Alan is not always happy. When Alan's happy, playing the Cath Game is not just easy, it's trivial. This? This, I was worried about even trying? Or so I'm thinking...

When Alan is ready to, well, go, everything is wonderful. If he's unhappy, just... wait. He'll smile again, soon enough.

But one thing he's not at all good at, is telling me exactly what's going on. Full? Empty? Desperate? Bored? Every time I pick a message and act on it, it's not an accurate report of his actual state. I've gotten "Empty me! Empty me! Now now now now now!" screams from Alan, but upon cathing, he gives up a coffee-cup-sized amount. Not a Starbucks "venti" cup, a grandmother-grade-tea-cup size. Then again, there are times where he says nothing, clock says yeah why not give it a try? And upon trying, oh my GOD how much he's been carrying and is so enthusiastic about letting it go.

Is our spiritual life not very much like this? Oh yes, there are things that need to be let go, and blessed as we send them out on their way, with thankfulness for letting go of what we no longer need. But we're always perplexed by I have to get rid of what, now? or I thought I had taken care of that already or I had no idea that was still waiting to be let go or all sorts of things along that line.

The Good Book says, "Pray without ceasing," but it's hard to carry that metaphor into the bladder-catheterization world. We MSers live in the world of "Pee without stopping" or "Pee without starting," or bouncing pretty much instantly between the two extremes. We form new relationships not with pointy things (like Alan's friend the cactus) but with what are basically straws. But, just like friends, once we find the right one, it's quite wonderful to hang (as it were) with them. Heavenly, even.

So now then, how do we deal with Alan? Carefully... he is, after all, just a balloon. But, he does have a nice smile when he's happy. So, don't be afraid... Alan is nice. Just talk to him.

Treat him kindly, with respect, and honor. When he does something right, anything right... thank him. And as Kathryn Kuhlman said at the end of her weekly address to which my maternal grandmother listened (as it were) religiously, "Everything will come out... all right."

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.


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...


Let's do that again.

Thursday, April 10, 2014

B-san the Baloon

Adventures with B-san continue.

For those of you who are not (yet) familiar with my stories about dealings with B-san, or as us anime-fans Japan-o-philes might call him, "Mr. Bladder," a brief introduction: I have more familiarity, as you might imagine, with the specific issues of MISTER Bladder rather than MISS Bladder, so that's where we'll be going today.

B-san is basically a balloon. Think of Alan the helium-filled balloon from The Amazing World of Gumball, who tragically enough is in love with a cactus, but that's another story. Anyway, here's Alan:

That's basically the right shape and tensile strength, for a "bladder analog." Imagine for a moment that the string is a catheter, and instead of a knot that ties balloons off, it's actually going to be a sphincter surrounded by the prostate. Because of the process of catheterization, getting things past that prostate-surrounded sphincter, I call it the "pros-gate" rather than "pros-tate." Gotta get it through the gate before the catheter can work as a straw, right?

B-san, for me at least, definitely has Issues. Sometimes he complains loudly and bitterly over not having really all that much to offer, emptying-wise. (What, you have a mercury-bulb-style thermostat? Pee-o-stat? You yelled this loud for 75 cc's of urine? that's all you got? What exactly is setting you off, I wonder.) Sometimes he says nothing and surprises me with the amount he has been holding.

Without complaining. This time. Not like 3:45 this morning, yes 3:34AM,  when he awoke me very insistently, but produced a Really? That's all you got? amount by the end of the process.

I don't get it.

Nonetheless, as my urologist told me about being in the Cath Club, everyone with MS eventually has to go down this road. So if you're stuck on a road, you might as well enjoy the scenery and do your best to avoid the potholes.

First thing that's gotta be ready for accepting the catheter is B-san himself. Although the tubes don't move around that much, the end of the tube can; B-san can twist about into all sorts of un-catheter-friendly positions. When it's psyched to empty, though, everything hangs in precisely the correct position. So if any Cath Club members have issues just getting the cath started... it may be B-san in a poor position. Wait a few minutes, no matter what he says, and try again, you may very well have a significantly easier time of it.

Right catheter makes a huge difference. A friend of mine has been using the same kind of catheter for over eight years, but what he uses is nothing like what I'm currently using. It took a few tries to find the one that really works well for me, but once I found it, catheterization became simplicity itself. Such simplicity that once I found the correct cath, it was very much a "And you thought this was difficult? You were afraid of this?" moment.

And it's B-san's untrustworthiness that makes it ... challenging... yeah, let's go for the nice word, challenging, to leave the house and go to dinners or concerts of whatever. If B-san is in a good mood, I can wait with no problem. Cath before I leave the house, cath upon return. No problem! But if B-san is in a screamy mood, or if something I've had to eat or drink has gone wicked diuretic on me, maybe I might need to cath while I'm still out of the house. Which is difficult; I need a mise en place to help me deal with all my gear, keep everything clean (as best I can, at least), keep liquids where we want them, under control, and guard against "catastrophic containment failures," as my wife the environmentalist has sometimes been known to say.

Cathing is easy. Dealing with all the cath stuff (equipment & related Things) is hard. Especially when you're trying to maintain cleanliness (sterility, I get only when I'm really careful/lucky... but fortunately I haven't gone down the infected-myself route so things, so far, seem to be working well enough).

Now, your milage may vary and all that, and your urologist will tell you what your urologist will tell you. But there are things that only we who are in the Cath Club can share, but we can only share our experiences... and so, there we are.

And if nothing else, imagine B-san with an expressive face, just like Alan pictured above. At worst, you'll get a smile out of it. You will smile. Which, for this world or Gumball's own amazing world, is a pretty good place to hang out.

And really, Gumball fans, better Alan than Tina Rex, the dinosaur... We got enough problems with B-san the Balloon as it is.

Wednesday, April 9, 2014


One thing everyone with, or who lives around someone with, MS sooner or later (often sooner) realizes, is that their sensitivity has gone way, way up.

Sensitivity to... everything.

As one of my doctor's other MS patients told him, the best thing about MS is that it makes you more sensitive to your body. The worst thing about MS is that it makes you more sensitive to your body.

But there's way more to "sensitivity" than just what we're directly wired to, even with bad wiring.

I'm spending time every day, outside and in, or looking over from the back porch, the back garden.

And a lovely place it is, the back garden. But I'm definitely "working my sensitivity" while back out there...

Hallmark tells us when spring happens, on the equinox of course. My kyudo teacher tells me that in the Goode Olde Days in Japan, there were something like 100 or so seasons. Which works out to a new season every four days or so.

And if you actually pay attention to the seasons, and to what natural world you can reach from wherever you are... you'll very quickly see that the Olde Days were right. Season changes all the time. Maybe not the huge "finally, the spring thaw!" big big BIG seasonal changes, but yeah, every four days or so... everything changes.

Well, actually, every DAY everything changes, but I'm not quite there yet. Getting closer, though...

 And what I'm really, really enjoying, is the smell of the air coming off the mountains. My house is at the bottom of a system of hills, and as much as people like going up mountains so they can see ever so much more from that height, looking up the mountain will show you just as much. Or maybe even more.

Sometimes I can smell the creosote coming off the mountain, something that's very prominent the closer you get, or even if you get into or onto the mountain. This smell is a huge part of my childhood /youth memories of golden days spent at Griffith Observatory, watching the "star shows" or, in later years, Laserium.

Ah, but that smell, so many memories are woven into that smell... which I sometimes can catch a whiff of, miles and miles away from the actual mountains that surround the San Gabriel valley.

Laserium is long gone; so are the "star shows." They have a new and amazing projector, in my youth a Zeiss mark 4, but now they're onto a mark 9, which projects so well that if you have a hand lens or other micro-telescope-like thing, you can see projected images better than you can see them with the naked eye. But there's nobody driving the show like they did when they had to do everything by hand, nowadays a computer shows all sorts of cool images but everything's pre-recorded, shows don't change to match whatever's in the night sky (too complicated to do that sort of thing), and cool as the images are... they just don't sing to me the way the "star shows" did from the golden days of my youth. Planetarium seats are WAY better now, but shows aren't to my taste as much as the "by hand" ones were, and although much of the place has been ADA'ed, I think the telescope (dome on the left, in the Laserium photo above) may be closed to me, the last time I was in there I had to walk up several flights of stairs and/or ladders. Which was, believe me, OK, considering what they'd enable you to see. But ... that was then. This is now.

Oh well.

But just sitting in my home's back garden, wheelchair and all, I see and hear and smell things that I never have before. One of my acupuncturist's favorite prescriptions include "get into nature" and "look for something you've never seen before," and that happens to me daily.

I see new buds on my pomegranate tree; every day I see another one. Oh, this tree's gonna be so wonderfully generous.

I see tomatoes flowering, and even tiny tiny tomatoes, just starting. I see new buds on a Greek basil plant. I see very very happy honey bees looking for nectar.

I hear a bird crying at a nest. It's up too high, I can't see what's in it, but whatever it is seems to have upset this poor bird, because she cries very pitifully at the nest. And then she flies away... A woodpecker was very enthusiastic a few weeks ago. It's not there now. Squirrels chatter and pick at the loquats growing in my tree and the neighbors's tree. My cat is clearly very happy with the catnip my Garden Guy planted for her, wanders outside and rubs her face in it very happily. A few days ago a black-and-white cat I'd never seen before (or since) wanders through and invades my cat's catnip. Which did not please my cat at all.

If I feel like it, I pick some lettuce that's growing in the garden. Maybe even add a few herbs.

But no matter what... just breathe. There is a difference about the air coming off the mountains... as my wife calls it, the breath of the mountains.

There's got to be a piece waiting to be written with a title like that... Haven't quite settled on an exact title yet, much less oh yeah, the notes and rests and all that, and music that's ahead of it "in the pipeline" needing--needing--to be written too... but we'll see. A band piece by Joseph Schwantner that I played in college was titled "And the mountains rising nowhere," it's an amazing piece but it's in a very different place than I am right now. But even in Las Vegas, in the middle of the Nevada desert, I can smell the mountains, I can feel the mountains breathe. And if you drive a few minutes north, you can get into an actual Alpine environment. Truly amazing air, there, only a little ways north of Sin City. Photo is from last October... who knows what it might look like, now?

But yes indeed, dear readers: Seasons are changing. Constantly. MS or not: Go outside and breathe. If you're somewhere that's in some way connected to nature, in any form, go outside and breathe today, and the next day, and the next, and the next.

And see how things change.

You'll be amazed.

Tuesday, April 8, 2014

And then what

Had the usual weekly acupuncturing/MD chat/dharma talk with My Guy. Nothing particularly outstanding, points-worth-reporting wise, although I think (I think) I got a point called "Relax and Joy." Which corresponds with my prescription for the week:

Have fun.

Or, as might be more accurately transcribing what lay underneath his prescription, "Dude, come on, have fun!" Keep out of the dark waters and stay in the sunshine!

I've been reading the blogs of Ram Dass, and as you can imagine, he's very big on "Be here, now"... One recent post, which might be of especial interest to us MSers, was about transforming or transmuting energy.

I'm certainly getting a lot of "Be here, now" messages pretty much right in the face... daily. Hourly. Minute-ly. Remembering the conversation I had with my doctor, years ago, about the wheelchair. Keep out of it as long as you can,  he told me, because if you get in it, you may never get out of it.

Well, I'm in it now. Whether I want to be in it, does not apply. Am I going to stay in it or one day get up and walk away?

My doctor years ago had an MS patient who did just that. A quarter-century in a wheelchair; one day he got better, got up, and walked out of the hospital. Yes, it does happen like that, sometimes. MS being MS and all.

As I often quote Aragorn from the Lord of the Rings, "Who can say?"

As for today... do some "business" things, file some pieces of paper and get them off my desk, enjoy some mochi-centric treats Karen brought us yesterday, maybe have a waffle. Write music. Dunno about that yet... Maybe. Or not. As I'm typing this, I honestly don't know.

Make some tea, I think, is a good place to start. At some point later today I'll go outside and get some sun as well as some air, which here in Pasadena is especially nice today.

iPhone app says it's going to be 90! Or 80! Or something else!

Well, that's the MS highway for you, ain't it? Or, just like life...

We'll see what's going to happen when we get there. And then what?

Be here. Now.

What else do we have?

Saturday, April 5, 2014

Music happened... magically, maybe

Is the music drought over?

Well, I dunno about that, but for the last couple of days, I was inspired to write something and so I did.

Christian Cagigal is an awesome magician from San Francisco way, and he was down here in the LA area to perform at the Magic Castle. Technically he's an excellent magician, but what attracts me to his work is that he knows about theater. How to create a space that has ... flavor.

His props and set pieces are old. Quite old, a hundred (ish) years or even more. His last week's show involved a music box, and as you can see from the pictures above, he likes clocks. He seems quite fascinated with things that time has... passed. One effect deals with the survivors (or non-survivors) of the Titanic, in some effects he'll add a clock or even a metronome.

So I was inspired to write some music. Which I did, even... You'll hear a music box, and a clock, and the sound of time passing or even having passed a long... long... time ago.

I'm hoping to get more writing done today, even. We'll see. Because I have a laundry list of music that needs writing... we'll see if the writing will finally, finally, happen.

As I said, we'll see... but regardless: Enjoy!

Thursday, April 3, 2014

Generosity and water (sky, plants, and fish even)

Could talk about how my hands are losing fine control, as the days move forward; how typing is becoming more difficult (well, correctly typing, that is) with every passing day, and that this morning, typing-wise, is just a mess.

Instead, I think I'm going to go down the spiritual side of the road.

Yesterday, it rained in the afternoon. Yes, here in southern California, where the song tells us (too accurately) that it never rains in Southern California.

It was wonderful. Terms like "petrichor" I suppose are accurate enough, but have no poetry in them... which was overwhelming. Unbelievable poetry.

This picture of my back garden obviously was taken before the rain hit, but it gives you an idea of what I have to look at, from my back porch.

There was a sweet beauty, the garden in the rain. The relationship of the garden to the rain, and the sky, and the air, and the earth, was... gratitude. Generosity. Thankfulness. The garden was palpably grateful for the measureless gifts that were being given in sweetly overwhelming opulence.

There was nothing in the garden's universe but... gifts. Gifts being given to the plants and the earth the plants were growing in; gifts that were exactly what they needed and so much more than they could possibly accept at the moment but their "arms" (metaphorically) simply remained open and they were so happy as they... just... received.

Now we MSers, we have ourselves been gifted with sensitivity, more sensitivity than we ever expected was even possible. And that sensitivity yes puts us in scary touch with our failing/malfunctioning/oddly operating bodies, but it also makes us superlatively sensitive to the simplest of things... the gentlest of breezes, the most delicate scents. So many delights abound wherever nature exists even in the simplest way... the mew and purr of a cat, the perkiness of a lizard (one was sitting very happily on the head of the statue of Buddha who graces the back yard, really enjoying the sun that was out that day), a dried fruit that you always thought would be fine but you had never really tasted properly it until that wonderful day that you really tasted it, a blanket over your legs that warms your legs ever so cozily.

Yesterday in the rain, I felt the heavens open their arms, and the earth open its arms, and the plants open their arms, and all of them, everything and everyone, was blissfully happy. The weather was supernaturally happy because it could embrace the earth with sweet, and generous, and gentle, and abundant, rain. A gift given without reservation, only joy. And the garden was supernaturally happy because it just couldn't get enough of the generosity of the sky... and as anyone with a garden can tell you, plants like rain water better than sprinkler water (happy as they are to get that), and it was as though every time they said "More! We'll take more!" they got it, and even more besides... as the pastor of the Science of Mind church at which I was an organist forty (wow!) years ago liked to end his prayers with a thanks for the world's measureless bounty: "Pressed down, shaken together, and running over."

So this is my homework, even now that the clouds have parted, the rain has passed, and the sun is again shining... take time to be outside, and just breathe the air. You can smell and taste the sweetness in the air... here in the San Gabriel valley, one can smell the wind coming off the mountains in the afternoon, it's as though the rocks of the mountains are breathing. In Connecticut, it was always easy to smell and taste the glory in the air... I can even smell and taste that in the high desert. I used to smell it all the time visiting my cousins in Apple Valley, and on a good day I can even smell it in Las Vegas and vicinity. Because Vegas is also cuddled by the mountains, and only a few minutes north of Las Vegas you can get into the mountains, where in October (which is when I'm most familiar with it) it becomes positively alpine.

So I offer that to you, gentle reader, as your homework. Go outside and breathe. The earth has a gift for you. The generosity with which the Earth offers you this gift has nothing to do with any "disease" or any limitations we have chosen to impose upon ourselves. The Earth has but one word to speak to us:


So, open your arms, open your hearts, and love. Resonate the generosity of the Earth in the warmth of your own spirit.

Probably won't do anything about neuromuscular failings with which we MSers abound, but ... open your arms, and love. Unconditionally.

As Helen Palmer wrote in A Fish Out of Water, "Something may happen. You never know what."

Wednesday, April 2, 2014

We'll see

How do you feel, I am asked.

In a word (well, OK, three): Like a lump.

An uncomfortable interstitial location. Well enough almost to use the computer (like now). For the moment. Was well enough to bathe myself. Today. Was well enough to make tea. Today. But before I started typing this, I just sat there, blearily looking at the keyboard.

Like a lump.

Having to re-invent typing. The standard ASDF-JKL; on the home row presumes that there is a certain degree of control available within the fingers. As does touch-typing. Shows you how old I am, doesn't it, to even remember "touch typing" as a "thing" to be learned and done. Anyway, the more frequently I look away from the keyboard to look at the screen to see how I'm doing, the worse I do, the more mistakes get made. And then I look back at my fingers and mistakes keep getting made. Different ones, at least, but still, control is degrading. If worse comes to worst, I'll probably, probably, still be able to two-finger "type" well enough.


The new Mac mouse is working well, except the ball that enables one to scroll in many directions is so very sensitive that I keep over-scrolling, and then over-scrolling back,  then over-scrolling again.

I just had to retype "over-scrolling" about six times, none of those times (this time) thanks to over-helpful auto-correct. Typing is getting ... crappy.

Off for a snack. If I'm gonna eat less "per dose," I've gotta eat more often. And definitely not "run dry," that story ends badly. Very, very darkly.

Had thought, last night, of musing spiritual on today's blog entry.

Cat is howling and tummy maybe, maybe, is signaling that it wants at least something.

Given how few sensations I get nowadays, best I should pay attention to what little I get.

More later. Or tomorrow. Or even later.

We'll see.