Monday, October 29, 2012


Lots of time spent "on the rack" since we last chatted. With two exceptions, not a lot accomplished. Unless you count sleeping when you need to sleep as an accomplishment... which, in its own way, I suppose it is.

Accomplishment 1: Attended, enjoyed, survived, the LA Tea Festival. Got some Darjeeling-produced oolong--definitely different from the Taiwanese variety. Got some questions answered about matcha, the powdered tea used in the Japanese tea ceremony. Picked up a new variety of pu-erh, a raw variety, much gentler than the very-processed versions I'm used to.

My wife was very generous about pushing me around in the transport chair, all day. However, she did share that she was not particularly excited about pushing me around a lot (certainly "that much") and if we're going to be doing this sort of thing together, I'll need to provide my own locomotive power. Now, I can still with-the-walker walk, but not quickly, not well (depending on the day), and walking at all causes bladder-activation ... "issues," let's call them. We've chatted about those before, they're not "worse" as such, but they are more fickle, and they make traveling anywhere, even around the house to get a cookie, more problematic. Very problematic.

So, although I do not want to "make the shift" away from my walker to a wheel-it-myself wheelchair, it's probably going to be a good idea to have one available, if my wife and I are going to spend any time "in the world" together for longer than "hobble to the restaurant and sit down." Yes, I can hear the objections: you don't want to stop using the walker, walking at all is good exercise, use it or lose it, and all that. Well, "use it or lose it" translates all too easily to "use it and lose it," where my bladder is concerned. Great. Gotta go shopping for more equipment, maybe... I'll talk to my MD about this when I next see him.

Accomplishment 2: I assisted with the 100th anniversary service of a church at which I used to be music director. Across the street from which, I used to live (sound like Yoda, I appear to). Underneath and inside the organ of which, I spent way too many hours. This church was a huge part of my life, for many years. It's still a nice place, the people are and have always been very nice.

The community is no longer what it used to be; time, change, and the way of all flesh, and all that sort of thing, and it's Just Not The Same as it used to be. Hasn't changed, in many ways; has completely changed in others. And yet, I could see what it is now, what it is no longer, what it has become, and how it is the same and yet different, how it is still "home" but isn't really "mine" any longer, even though the people still love me and I still love them... but it's OK to let it go. Really. It's sad to see it go, but it's OK to let it go. Some parts of it make me very sad to see go, but there's nothing to be done, there are no choices, those parts are just plain gone, and all that's left for us is to make the best of them, because (as the pastors would say), that's good custodianship: make the best use of what you have to meet the needs you have, and meet the important needs first. Period.

And last night, sitting under the moon and thinking about yesterday's evens, I realized... doesn't this apply to the M.S. journey? To our human journey? Things change, whether we want them to or not. Be truthful about how you feel, but also about the way things are, here and now. Be a good custodian; yeah it'd be nice if you could use what you got to make things "the way they were," but that very well might not meet the needs of the way things are, and the good custodian of your treasure will put what you have to meet today's needs, rather than the needs of the past that exists only in nostalgia. And as a spiritual counselor told me once, there are many paths to enlightenment, but "nostalgia" isn't one of them.

But it's hard to speak the truth, sometimes. Especially when the truth is, "Time to let it go."

We're told so often, "Don't give up!" But speaking the truth and releasing the no-longer-necessary is hardly defeat. That's a very important lesson, a very important gift; and I think, a gift that I need to be more open to receive. I received it well, at this recent visit to a home of bygone days... I think there are still a few (more than a few) things that still need to be sent on their way, so I can better travel my current journey. Walker, or wheelchair.

Wednesday, October 24, 2012

Well, we seem to be back to "normal," or at least what seems to be "common." Back to the bound-to-the-bed-for-sleeping-at-no-notice, accomplish-little-to-nothing-because-of-said-sleeping.

Monday I had one hell of a dharma talk from my doctor... it was one of those "necessary"—scratch that, "REALLY necessary"—wicked-long-overdue, completely on-the-mark, but not one scintilla pleasant, dharma talks. I needed it. I deserved it. I am thankful for it! But... I'm still recovering from it.

"Ego reduction" is rarely pleasant. Always necessary, but never pleasant.

I made dobin mushi for dinner tonight. It's a seasonal Japanese specialty, seasonal because it replies upon matsutake mushrooms, which only come out around this time of year. I thought they came out later, but they were in the store last week, so there we are.

I need to start gearing up for two events: A church's 100th-anniversary service, at which I'll be singing in the choir and, it seems, playing the baritone, so I gotta get my lip back for that, and remind myself of how the bloody thing is played... I've got another presentation coming up next month, gotta put that together... and oh yeah, the usual "in the world" things: go to the bank, handle some Money Stuff, go to the oculist's, pick up my computer glasses.

Tomorrow needs to be a full day. If it's like today, I've got maybe two good hours in the morning, and two good hours some other time later in the day. Lots of stuff to do, not forseeing much "awake" time to do it.

Well, if there's one thing the M.S. journey teaches you, it's prioritization.

We'll see how good I am at that, tomorrow.

Monday, October 22, 2012

Good therapy

Wow. Lots of have happened since we last chatted.

Last week, I made a presentation at "Magic and Meaning," an international conference held in Henderson, Nevada (gateway to Las Vegas) under the auspices of the McBride Magic and Mystery School. Participants came from as far away as Scotland, France, and the Netherlands. The photo below features me (on the right) waiting "on deck," as I'm being introduced.

The "Magic and Meaning" conference is something I look forward to for an entire year. It is immensely restorative. And fun. It was full of life-changing moments, often catalyzed by a single sentence.

As to my presentation, and my participation in the conference and related symposium activities, I was very pleased... I managed to hold my current "gotta sleep NOW" phase at bay for two of the three days. The third day, I had to give in a bit to the fatigue—which, alas, has revisited itself upon me since my return home... but still, I made it through the conference. Even made it to a couple of evening events. Which  also, in their own way, offered life-changing moments. Sometimes, a moment of perfect beauty, in a magician's performance... sometimes, the words of a friend... and sometimes an amazing moment, revealed by the turn of a single card.

In summary, my days at the conference... A triumph.

Also while I was there, we took a trip to the mountains just north of Vegas. You'd never expect to find something like this near Las Vegas or the Nevada desert, but it's there. And it's wonderful.

Being in nature is immeasurably therapeutic. There's a difference between "being outside" and "being in nature." Just plain "outside" is nice, yes, and often quite salubrious, but there's nothing like actual nature. I felt... nourished. Restored. Spiritually. Energetically. Yeah, I had to still use the walker or sit in, or be pushed in, the walker in "transport chair" mode. I didn't care. None of that mattered. Just being in nature was wonderful. Is wonderful.

And I recommend that to any, all, my dear readers. Go into nature. Breathe the air. Listen to what it says to you. Listen with your heart. Even if all you do is sit there and breathe... do it. It's very, very, good therapy.

And no side effects!

Except, of course, renewal.

Wednesday, October 17, 2012

Point made

Another HUGE interface with The Real World, yesterday... this time, courtesy the Air Travel System.

Security Theater wasn't more trouble than usual. Fortunately. There were many things I didn't understand... last time I went through, they seemed very concerned that I was using my own wheelchair, rather than one of the airport's, so they spent extra time swabbing it for explosives. Y'know, the sort of places people have long been known to hide explosives... the footrests, the empty bag suspended between the uprights, underneath the seat. Where, to most of us untrained ignoramuses, we'd, y'know, just look, and see that there wasn't anything there, but those highly trained experts needed to run BOTH HANDS over the plastic that was thinner than most windbreakers are, and REALLY REALLY CHECK those pieces of solid plastic upon which my feed rest.

Anyway, so yesterday, I used one of the airport's chairs, thinking that would make things simpler. Apparently not. They were concerned that the SOLID ALUMINUM things that my feet rest on might contain explosives. Or something.

Anyway, the kicker was not Security Theater, but someone from the airline. I had a "preboard" pass, I'm sitting in a wheelchair, an airport-provided wheelchair with one of those bright-red eye-catcher back-handles and all, and he says to me, "Can you go up the stairs?"

My first thought was to say, "Dude. I'm in a wheelchair. What do you think?"

But instead, I said, "If there's a thousand-dollar bill with my name on it at the top of those stairs... yes. Yes I can. If not... you're gonna have to use the lift."

Point made without rancor... and I think he realized precisely what he had asked, and of whom he had asked it... and I don't think he's gonna ask that ever again, of someone in a wheelchair.

Although, you gotta admit... the thousand-dollar bill would be pretty cool, wouldn't it?

Saturday, October 13, 2012


I'm clearly in a "new phase."

The "lie down and listen" phase.

Sounds Zen, don't it? But no. It's "lie down, put a cloth over your eyes, let your iPhone play a favorite cartoon which you've already seen time after time, and maybe go to sleep. Or not. But definitely don't read anything... just listen." Reading doesn't cut it, when it's Lie Down And Listen Time.

Now, this morning, I did that, and was able to get up and actually do things (like this). Couple of days ago, not so much... it was very quickly Lie Down And Sleep. Even more inconveniently, it was get up, eat, make tea, and then go to sleep RIGHT NOW NOW NOW NOW.

Does it mean something? Well, what did M.S. mean to begin with? Nothing. So, this means nothing, too.

I wonder if this is what relapse/remit is like? I don't have that, never have... but certainly, I also didn't have "got to lie down and sleep NOW NOW NOW" before, either. This certainly doesn't fit in to the category of "attacks," at least that I've heard about.

And, even if it is, for an "attack," it is pretty gentle.

Which, I guess, is the way we're prefer to get "attacked" by disease. Gently, kindly, painlessly. "Lie down and sleep" doesn't get much done...

Except, y'know, recovery. Which may be at the bottom of things what it's all about... we'll see. I hope.

Wednesday, October 10, 2012

Accomplishing nothing

I'm starting to appreciate the therapeutic value of doing nothing.

I've been an over-achiever for years. A proud over-achiever. Back when I was still a coffee drinker, we'd call it being one of the "caffeine achievers."

Well, that' don't happen any more.

I handle the business of the home--pay the bills, file what came in the mail, that sort of thing. If I'm feeling especially strong, I load (or empty) the dishwasher. Yesterday, I loaded and (eventually) even put away the laundry.

And that's about it.

I have music to write... Yesterday, I ended the day full of resolve to write it.

This morning, I woke up with the sun as pretty much usual, but rather than lying in bed and enjoying the just-plain-lying-down, I actually got up, and took the car into the shop early enough to avoid the morning traffic. Said car shop is very nice; they employ a person to drive customers to and from the shop, while their cars are being serviced. Who's also a very nice person.

Car Guy took me home. Immediately upon arrival, I went to bed. Slept for three hours. So much for the "morning of writing music."

So, this afternoon, I've handled some Business of the House... paid some bills, gonna file said bills. Emptied the dishwasher. Made myself lunch.

Haven't written any music yet.

OK, so I'm going to go make myself another cup of tea, and then, before I have to lie down again, I'm going to write some music. Some. Any. File this under "@#$#damn it, I want to do this. I'm gonna do this."

If that makes me need to lie down and recover... well, that'll be a disappointment indeed.

But at least something will have been accomplished. But even so...

"Accomplishing nothing"--just stepping outside the house and enjoying the air as the entire "today's activity," just plain enjoying being alive--feels good too.

And us M.S.ers... we need to "just plain feel good" sometimes, too... don't we?

Monday, October 8, 2012


Everything has changed size.

From my point of view, that is.

It began at my 25th college reunion... walking around parts of the campus and saying to myself, "I thought this was a long walk?" It was more pronounced at my 30th last May, and it was something that my classmates all felt... Yale had become "Hogwarts shrunk to the size of a snow-globe." It was tiny. Even from the perspective of someone in a wheelchair (that'd be me), it was ... Dinky.

Same with my former workplace... I drive past it on the freeway from time to time, and I think, that's all it is? It's... tiny.

You never feel like it's tiny when you're trying to schlep stuff from one end of it to the other, I'll be the first to tell you that. And from a fifth-grader's perspective (my age when I first set foot on it), it's huge. Once I had been ... accessorized, let's say, it was too damned big; but with the powered wheelchair, it was just fine.

But now, as I drive by it... it's small.

Once simple home-care tasks have grown. They're all huge. Sometimes insurmountable. "I need to clean up the studio" has always been a bigger-than-fun-to-do task for everyone, but nowadays... it's huge. Too huge. What would have been a two-hour-at-worst job (move that, reconnect that, put the first thing back, handle the needs-doing stuff that was revealed by the whole process), easily done when the proper tunes were put on the stereo, is... completely impossible, somehow. There's always something "in the way" (sometimes very much so, as in "in the way, on the floor, in front of the thing you'd hope to spend  your time on") that needs doing before you can get at the thing you actually wanted to do.

This has always been a problem. This is a problem for everyone, I know... I can't fix the X until I fix the Y, but I can't even get at the Y until I process the Z properly, there are reams of self-improvement/encouragement books offering solutions to the "can't clean because too many things are dirty" conundrum. But not for we M.S.ers, for whom "there's only so much energy" governs, impedes, causes to die on the vine, everything we do.

I forget which Famous Industrialist held this particular rule as the magical principle that revitalized his "empire," but it was just this: Do the most important thing first.

A nice idea. Works fine when there's available energy. But right now... given that I have to drive an hour to my doctor to have today's "killing fatigue" addressed, the most important thing is, I think, going to be... lie down. Then set the alarm so I don't sleep through driving to my appointment.

And needing to lie down, right now, has become "the elephant in the room." From the mouse's point of view, or from the perspective of anyone being battered by its mass, this is ...


Saturday, October 6, 2012

What is "brain?"

A day of "tiny triumph" and ... well, at least I got something done... and ... pretty much dead-stick zero.

A little after 1:00, I headed out to one of my favorite Taiwanese tea/lunch shops. I tend to go there because, not just because the food and tea are good, and the people are nice, it's very easy for me to get from the car to the counter and back to the car.

Today, I pulled into the parking lot, then made the very, very, very long walk down to the grocery store. Filing it all the while under "@#$damn it, I'm going to do this." Bought one, count it one, item: a head of cabbage. Won't it be fun to make and enjoy some cole slaw, since I recently got that added to the "OK" side of my diet. I miss the crunch of lettuce and like leafies, and I've really enjoyed the slaw I've made for myself.

But, I made it that long, long, long way to the store and back to the tea shop.

Managed to get the cabbage into the refrigerator at home.

That was the triumph. Not a big one, but at least in a small way, a triumph. I'm sorry that it ended there...

Because that's indeed where it ended. The cabbage made it to my refrigerator. Where it's gonna stay the night, because I really don't think that I have the gumption to wash it, cut it, add seasoning, and enjoy. Sounds easy, doesn't it? Well, it is indeed very easy... when you've got the energy to do it.

Which... I don't.

I'm suspecting an acupuncturally-easily-remedied condition is behind this. I sure hope so, I don't want to live this way for much longer. It's no fun.

I wish I had something spiritually profound to share with you... I like to think I do, at least some times. Not today...

I'm hoping that I'll have enough energy to stay up long enough to watch the Saturday-night Star Trek TOS. (Last night, I gave up and hit the sack around 7:30...) I'm not sure I do... but it's worth a try.

Tonight, it's "Spock's Brain." Who can forget the line, "Brain and brain! What is 'brain'?"

Well, we often want to say that about our own nervous systems, don't we?

Thursday, October 4, 2012

Pepys's closing words

October is already becoming "backwards month."

Calendar/Hallmark cards/local merchants tell me that now it's fall. Actually, some local merchants have been touting Hallowe'en for several months, I just saw some Thanksgiving decorations in a store yesterday, and I'm expecting the Christmas stuff to be out by next week, but that's another matter...

ANYWAY, so people tell me it's fall. All last week, here in the L.A. basin, temps have been hitting, and exceeding, 100 degrees.

And except when the day is at it's absolute hottest, I take my M.S.-ridden body outside into the heat, and ... enjoy the warmth.

I sleep through the night, get up easily, have a cup of tea, and within minutes, have to go lie down and (it feels like) go back to sleep. I tried varying the morning tea... nope. Doesn't make any difference... Wake up, then have to go back to sleep, seems to be the current "morning routine."

For the first time in weeks, I actually accomplished something yesterday. I'm scheduled to make a presentation at a conference in a week or so, and after being unable to work on it (see above, needing to sleep all the time), I got a huge amount done on the slides.  I only have a little more to do, but the end is in sight.

In the process of making the presentation, I thought of something that nobody ever told me--ever--about  the process of writing and editing one's work, and I thought, "This is great--I've got to tell my students about this!"

Oh wait. I don't have students any more.


Well, as my mother likes to say, nothing is ever lost... I'll get it to my former students, and to the students I have yet to meet, somehow.

But not today.

Because... I gotta go lie down. Now.

"And so to bed," as Samuel Pepys closed his own diary entries.

Hundreds of years later... those words still work just fine. Me, I'll take "still work just fine," just a little later today.

Monday, October 1, 2012

Something wonderful

First day of October... and my phone told me that it got up to 102 degrees today.

At the Japanese market, I saw two foods marked with "X season speciality!" stamps. One, a favorite noodle dish, was tagged as "Summer favorite!" The other, matsutake mushrooms (which I've always thought of as a winter/turn-of-the-year specialty) was tagged as "Fall favorite!"

Well, in southern California where it's 102 degrees at the beginning of October... it's neither fall nor summer. What it really is, I can't begin to tell you. I kind of feel the Metal energy of the season, such as it is in L.A., but L.A. is spectacularly Metal-deficient. Something about this place just doesn't like Metal. One night, I was sitting in the back yard trying to groove on the Metal buzz (always a favorite for me, this time of year), and I got a "flash" that the Metal energy... just didn't have a home. Nowhere to really connect... an interesting metaphor for an Element called "metal." I'll be in Las Vegas in a couple of weeks... there, I can feel the Metal, quite happy. And in the high Sierras, it's very happy. HUGE in New England, is the Metal "buzz." But in L.A.... nope. Sigh.

In other news... I was remembering my mother's first forays into the world of "retirement" (she "aged" into retirement, rather than "neuro'ed" her way in as I did). After having been in the working world for decade upon decade, she said that she had no idea how she's fill "all that time."

I think it took her something on the order of "couple of weeks."

I have a different version of that problem. "How" I could fill "all that time," I can come up with list upon list. I could write a book. Hell, writing a book is one way I could fill up "all that time." But my question is...

... Can I do anything today? There are days I don't get out of bed. That I don't shower. I try to at least brush my teeth after breakfast. Maybe I make tea. And maybe I don't, because it'll involve too much stuff to do before actually getting to the "tea making" itself. Like, y'know, make sure there's enough water in the kettle to brew the tea.

I remember days of my youth where I'd spend the entire morning and at least an hour or so into the afternoon watching TV. Sometimes (sometimes), I'd realize that I was spending way too much time watching Space Ghost and maybe I should actually do something? I kinda wish I was just wasting time, because when I realized that I was "just wasting time," I could turn off the boob tube (or whatever) and actually engage with "getting something done."

Nowadays, I wake up way too early, take my "gotta take it not with meals" pill, go back to sleep (maybe), wake up with the sun (maybe), wake up with the cat (usually), wake up by 10 (eventually). Have something to eat, tend to whatever business needs tending to (stuff like bill paying), check my e-mail... really, not much, it only takes about an hour at most, and... that list of "@#$#damn it, I've simply got to X Y Z today" doesn't get done. Because I need to lie down. Maybe go back to sleep. Maybe just lie down.

Something's ... missing. Something's ... disconnected. Dunno what it is. I sure wish I did... because then, maybe I could find it. Connect it. Whatever it. And actually get done what I want to get done.

Today I got acupunctured... I always need to take the rest of that day really easy. Tomorrow... who knows? Who knows what might happen?

As Commander Bowman said in 2010... perhaps ... "Something wonderful."

Even in a small way... that'd be fine.