Sunday, October 30, 2011


In the Five-Element system, Fall is the season of Metal: the element that enables us to connect with quality, but also the power to let go; the element that grants the power to grieve.

And, as the Taoists told us millennia ago, ending creates beginning. Creates it. There can be no beginning until the end ... ends.

Had a "I'm gonna do this, dammit" moment today... I did some laundry, then (here's the "dammit" part) took it, somehow, outside and hung it on the line.

Did some very spectacular Harold Lloyd-esque bounces off the line that I wasn't hanging things from, but nothing hit the ground (including, fortunately, me) and everything is currently hanging happily on the line to dry.

As I was in the backyard, I saw... the workbench that I haven't used since The Diagnosis. The saw that I had bought about a decade ago to build cabinetry with, and that I had built some lovely bookshelves with, but which I haven't felt safe to use, haven't felt able to manhandle lumber onto it or even to the backyard to work with it, since The Diagnosis. The backstop I had used as an safety behind-the-target arrow catcher, that I haven't used since I've been afraid to use the bow, fearing it would push me over backwards; or that I'd simply fall over trying to plant my feet or stand up, even before I drew the bow; or that I'd simply fall over walking to the shooting line.

And let's be truthful: The Diagnosis didn't stop me from using these things, my motor skills had been askew for two years prior to The Diagnosis; but at this temporal distance, it's as good a hook as any, time-wise, upon which to hang The Big Change.

These things have pretty much left my life, but I haven't gotten rid of them, because I'm hoping that one day, Things Will Maybe Be Better and I'll be able to use them again.

Now, that's certainly probabilistically true, but... not much sign of it happening anytime soon.

Or ever. At least not right now.

A scholar of philosophy said that the final creature to fly out of Pandora's box, Hope, is not the cheery little fairy everyone likes to think that it is. He said, it's the worst of the demons. The demon that lets you pretend that a magical fix will happen and Everything Will Be Better and you don't have to do anything to make that happen.

I'm having to deal with the truth that "ending creates beginning" in so many areas of my life, right now. There are some things that I really, really want to be over, so I can move on; and yet, I'm afraid to let them end. Really, really afraid... even though I know, I know, that keeping them will not only prevent the "new beginning" that I hope for, the keeping of these things will make matters worse, and worse, and worse.

Something we M.S.ers are tasked to deal with all the time is the need to let go of The Way It Used To Be. Because it's in our face. Every day. Things aren't The Way They Used To Be, and they never will be again. Because even if The Disease were suddenly removed from us, we've been changed; and we aren't what we Used To Be. And never will be.

And yet, we--I--hold desperately, desperately, on to the dream, the memory, of The Way It Used To Be. And it was never ours to begin with, because it was never real. It was just a dream. Our waking dream; but a dream.

Time to open my hands and receive the gift of Metal. To perceive and experience quality; "to receive the pure chi of the heavens," the specific job of one of the Metal officials.

And to grieve. To face the truth.

And grieve.

Tuesday, October 25, 2011

Needles and Tarot

A very poetic treatment today, at the acupuncturist's; points included the Inner and Outer Frontier Gates, the Gate of Hope, the Great Hammer, and the Spirit Path.

That last one, the spirit path... that's something that I know that I am being called to walk. It's going to be hard... I can tell already. But it is very, very, necessary.

In Vegas, I got a tarot reading from a very, very perceptive person. Tarot is an interesting thing; it's not about "telling the future" or "telling you what to do" or "messages from the spirit world" or any nonsense like that. It's a metaphor, from which you take whatever meaning you see in it. A good reader will show you things to look at, but you're the one who makes the real connections.

And the real zinger cards were The Devil and The Hanged Man. Lots of interesting stuff in both cards, but here are the kickers: Held by the Devil in chains are a man and a woman—but look at how the chains are merely draped around their necks. They could leave, if they wanted to; they're captive because that's their choice.

The Hanged Man is not about "someone being tortured," it's about seeing things in new ways. Yogis do inversions to (among many other reasons) help them look at the world differently; if you're looking at things the wrong way, change the way you look at them.

When the acupuncturist and the tarot cards are saying exactly the same things—time for a change: a big change—the Universe is trying to get your attention. (Another meaning of The Devil—there's a message trying to get through to you and you ain't listening.) Heck, even Tiny Buddha has been talking about listening.

The message is clear...

Time to listen.

Sunday, October 23, 2011

The mountaintop

I'm back in sunny (well, partially cloudy, today) Southern California. Back from my conference in Vegas.
It's hard to come down from the mountaintop.

The mountaintop calls to us; and we climb it, though the path there may be one that we have to make ourselves.

And once there... we are called to return; to return, changed, changed by the journey, changed by the struggle, changed by the call the mountaintop made to us.

Coming down is sad, and beautiful; but sad. Although, as a wise friend once said, "There are many paths to enlightenment, but 'nostalgia' isn't one of them."

And while on the mountaintop, I was absolutely hammered with ideas. Possibilities. Especially ways in which I can give back to our M.S. community, in very new, and very interesting ways. More about those if... If? Shall I commit to them by saying "when"? Yes, I will!

I'll say more about them when they come to pass.

In the meantime, I need to deal with the present. Some parts of that dealing are not at all fun; some parts of dealing with it are made more difficult by scars I acquired in my pre-M.S. past. Forgot about those, didn't we?

We spend so much time dealing with the scars the having-of-M.S. leaves on us that we forget that life itself leaves plenty of those, no matter what organic dis-functions you may or may not be dealing with.

Although having M.S., it does inure us to injuries that we might otherwise have taken. How many times have we heard this conversation in our heads, when someone expresses their displeasure at somthing:

"Bad? You think that is 'bad'? I can't do some things that have been central to my life and happiness since I was a teenager. I fall down with no warning. I need a wall or a wheelchair to do what I laughingly call 'walking'. My bladder has a mind of its own, and a capricious—sometimes malicious—sense of humor, at that. And I don't know from one day to the next whether things are going to improve, or disintegrate, or neither. And you call this 'bad'?"

Man, that was vehement. Guess I need to spend more time on that mountaintop, don't I?

Or to embrace the gifts that it gave me while I was there.

Ah, embracing gifts. We on the M.S. road are asked to learn that particular lesson many ways, aren't we?

Friday, October 21, 2011

Magic and metaphor

Currently blogging at you from a magician's conference in Las Vegas.

They're a very interesting, and unbelievably diverse, group. Baptist ministers. Congregationalist ministers (who were once also working with a hospice). Corporate trainers. Truck drivers. University professors. University presidents. Internationally renowned entertainers; entertainers that are nationally known and are certain to become internationally renowned. One of our number just finished opening for the Republican convention that was just held here in Vegas; he used to be a gondolier at the Venetian. And a university professor—he used to teach at UNLV.

I'm one of their presenters; I have been presenting for years, and they always ask me to give the presentation that opens the conference. No pressure! One of the people I shared the stage with yesterday was with Magicians Without Borders, an amazing organization; the gentleman who presented has himself, according to the United Nations, performed for at least a half million refugees. One of his current projects: teaching magic to children in Mumbai, so they can have a different income source than the sex trade. Amazing, what magicians can do.

No pressure!

But as diverse as we all are, we are all the same. Everyone here has stood on the very wide, very well-paved path of "here's how magic is done"... and they stepped off the path, and walked into the wilderness. Because they sought their path. The path that is theirs, and theirs alone. The path that is calling to them... the path that is waiting for them. And in walking that path, and becoming wholly transformed by that journey into the performer they were born to become, they seek to use their art to bring that same shamanic transformation to others; the amazing magical experience, if only for a moment, of the beauty, the wonder, the... magic, of simply being alive.

The conference is called "Magic and Meaning." Certainly, for someone on the M.S. journey, hobbling through the wilderness as best he can searching for the path that has (to his surprise, amazement, and often grief) chosen him, calling him to shamanic transformation from the life that he knew to the life that it wants him to find... it really should be called "Magic and Metaphor."

And the amazing thing is... all of us are alone in the wilderness, searching for the path that is ours and ours alone. And yet, in that search, we are together; we are never alone, because we're all searching for the same thing. The same top of the mountain—it's just the road to get there that's unique to each of us.

Life imitates art imitates life, doesn't it?

Sunday, October 16, 2011

New paths

Did something new this week: I did a magic trick at my high school's talent show. The kids did the "heavy lifting" of the show; they called in the faculty to fill time while the judges were settling on the prize winners.

The effect I did was, really, about having M.S., but I never used those words; the closest I got was calling it "this disease," and that only once. I did it from my wheelchair, the powered wheelchair the kids are used to seeing me use to trundle around campus. The kids themselves told me that it was OK to do that... and, given the real subject of the performance, it was quite fitting.

But the trick had a happy ending; it was about transformation, and kindness, and love.

It went well, and the audience enjoyed it.

But my wife said that as I performed it, it looked more like "me" than me-doing-magic has in the past. "Like you weren't wearing someone else's clothes," was how she put it.

Is this the start of something new? Well, who knows? But I'm definitely going to follow this path—especially since as a metaphorical path, at least I won't have to worry about falling down.

Monday, October 10, 2011

Comedy, again

More unintended humor. I fell down again today. The second time this week. This time, I was sitting down... I just slid off the chair.

Once I finished the "falling down" process (which fortunately I did quite safely, it's nice to have thick padding under your carpeting), three thoughts came immediately to mind:

1. "Well, I hit the ground again."
2. "I guess I'll need to blog about this, won't I?"
3. Laughter.

I think I want to live in option #3.

Especially funny since I was looking for a piece of equipment that I was going to use to do a magic trick about having M.S.

And I hit the ground while looking for it.

Now, you gotta admit... that's comedy.

Sunday, October 9, 2011

Still grieving

At church today, the organist delivered a superlative postlude. I fell in love with it upon the first three earth-shaking chords. It was precisely my kind of music. I loved it. It was exactly the sort of thing that I would have demanded a copy of, so I could learn it and perform it myself.

And then as soon as that thought hit me... another thought really hit me.

Yeah, that's exactly the sort of piece you used to be able to play. But you can't, now. The organist who would have played that piece... he's gone.


Yeah yeah yeah, I know, I may yet regain control of my legs, one never knows with this Neurological Nightmare, stranger things have happened, yadda yadda yadda. But right now, the truth is... that organist, the organist that I used to be, is gone.

And I'm not sure I'm quite finished with grieving his passage. No tears today, but the truth of that passing, really hit me.

My life is full of new things to do. I'm learning new magic tricks. I'm preparing entirely new lectures for all of my students. I'm actually writing new music. The "able-to-create me," who has been in hiding for so many months, seems to have emerged again.

But that organist, the organist that I've always been... is gone.

And his passing... I'm still grieving.

Saturday, October 8, 2011

Small packages

At my home, we have bottled water delivered (not just because I like its flavor better than what comes out of the tap, but having a few extra bottles around gives us in-case-of-earthquake supplies). We moved from five-gallon bottles to the three-gallon size, because the five-gallon bottle was too heavy for either of us to lift (they didn't used to be too heavy for me, but you know what's behind that part of the story). And my poor wife, for several months, has been the one stuck with loading the new bottle onto the dispenser.

Except today.

I loaded the new bottle into the dispenser. Myself. All by myself. For the first time in many, many months. And, I must say... I was amazed at how easy it was, and how well I did it.

While I was getting the bottle from where we keep them on the back porch, I was thinking about how long it had been since I had been practicing kyudo in the back yard, and then I saw that ... one of the chairs... has a back just tall enough to brace me as I draw the bow. I've been doing nothing but bare-hand practice for way too long; I've been afraid to use the bow because it kinda pushes back at you, and I've been fearing that it'd make me fall over backwards onto a very hard concrete surface. But... just maybe... this might work. I'll try it later this weekend--I may not have enough "oomph" to set up a full-on working target, but at least I can draw the bow.

Accommodations, we discover those all the time. Improvements? How often do those happen? Even small ones?

You take what you can get, when you're traveling the Neurological Highway. And sometimes...

You get presents.

And it's true what your mother always told you: the best things do come in small packages, don't they?

Friday, October 7, 2011

Shoot again

The Joseph Campbell "Facebook fan page" had this quote this morning, from A Joseph Campbell Companion:
"Where you stumble, there lies your treasure. The very cave you are afraid to enter turns out to be the source of what you are looking for. The damned thing in the cave that was so dreaded has become the center."
Well, he was certainly thinking about us M.S.ers, wasn't he? 'Course, for us, the floor gave way and we fell into the cave rather than walking into it. Especially the way many of us "walk." And stumble. And M.S. does seem to have become "the center," usually more often than we'd like it to be.

But it is our treasure.

Learning how to see that truth is harder than dealing with bladder malfunctions, or medications, or the mobility, or a-bility, that is ours no longer.

But it is our treasure. And that is the great "inner jihad"—to own that truth.

Sometimes, I feel like I really understand that. Sometimes, I'm not even close.

But as my archery teacher says, whether the arrow you shot was good or bad... "Shoot again."

So that's what I'm going to do, for the rest of tonight. And, maybe even tomorrow. And after that... we'll see. It's easy to say that I will, somehow it turns out to be hard to do. But we'll see.

Shoot again.

Tuesday, October 4, 2011


I spent some time outside this afternoon, just enjoying the air. Gently moving air, I find particularly wonderful; and particularly so, this time of year.

Autumn is the season of Metal. The "Metal vibe" is especially strong in New England and in the high Sierras--I'm sure it is elsewhere too, but that's where I've felt it most strongly. I've even felt it in the middle of the Nevada desert. Los Angeles doesn't really have the same energizing "wow" that those other areas offer, but this year, I've felt a lovely softness in the air; it has had the spirit of Metal, but very gentle, almost ... tender, on the soft breeze.

Metal is the element that grants the power to grieve.

I happened to catch some travel show on TV this afternoon. The host was in Paris, and he took us to the church of Saint Sulpice, and we heard that incredible organ that they have. The organist was really digging into the console (mechanical action, five manual organ, all five manuals coupled together, you have to dig in), and he was playing a piece that I had learned, and played, when I was at Yale.

And I started crying. Really crying. The first time I've really cried since The Diagnosis. The first time since I really cried over what I have lost, because of M.S. disability.

I remember the organs at Yale--especially the one that has the same kind of action, and is in the same kind of stone building, as the one I just saw on TV. I remember the feel of the keyboard, the "snap" as you press down the keys and open the valves that let air into the pipes, the crispness of the air within the church, the almost-tangible "feel" of the organ's sound filling the building, and its delicious reverberation.

I remembered playing for the funeral of Maya Hanway, a dear, sweet girl who killed herself during our senior year. I played a Bach prelude and fugue in e minor, something with some crunchy harmonies, because I felt like we were all struggling with both what she had done and her loss and we needed to come to speak the truth of that struggle. And yet, the piece ended in triumph, with a beautiful E major chord.

And I heard that piece in my head, as I had played it, in that room, on that organ on that day, and I knew...

I had to say goodbye to the organ. Yeah my hands still work fine and on the right instrument I can still do functional things without using my feet, but... the organ, as I have known it for my entire life, as an instrument I can just walk up to and suddenly work miracles with... to that, I need to say goodbye.

If my legs start working again will I go back to playing it? Well, hell yeah... probably... but I've been hiding from this moment, clinging to "now, we really don't know if the leg-control issues are permanent, blah blah blah blah deny deny deny deny..." ever since my legs started going south.

But it—whatever "it" is, in my relationship to the organ—is gone. And so is everything that I had associated with it--especially, the ability to instantly connect my heart to the manifestation of spiritual transformation through music. I could put my hands and feet on it, and let my heart sing through it. For me, the organ was not about "performing" or "playing the instrument," it was about transformation, it was about catalyzing emotional and even spiritual transformation, through the sound of that wonderful, wonderful instrument.

And I need to say goodbye to it. I think I'm all "cried out" for the moment, but I share this with you to help me make this goodbye real.

The trees lose their leaves so that the new ones can grow—there'd be no room for new life if the old, useless ones hung on and took up all the space on the branches. Life creates death, but death creates life. And that new life cannot full arise and come into its own... without that death.

So my task now is to really and truly, fully and completely, say goodbye to my old life with the organ. What new creation will grow on the branches, once the old leaves have fallen?

That's for Spring to worry about. Right now, it's the time to express, and to live fully within the truth of, the power of Metal.

Sunday, October 2, 2011

That Question

Oh, I had such plans for today.

I intended to hit the store, come home, write music, and make dinner (with enough left-overs for lunch tomorrow).

Got everything done, surprisingly enough; especially surprisingly, given that I pretty much ran out of "standing up" ability just as I was finishing the dishes. Unfortunately, getting "everything" done doesn't include the "write music" part, which was the thing I had hoped to do the most. Sacked out for a few hours this afternoon, which I guess I must have badly needed to do. Which I suppose is reasonable enough, given that I'm feeling out of musical creativity again.

This has always been the hardest-to-take part of the M.S. experience. Ever-increasing decrepitude of the body is easier to accept; I've been greeting that since I turned 20. Not that I've been fading rapidly or anything like that! But one experiences "I used to be able to do that in such-and-such a way, and I can't any more" throughout one's entire life. But until the M.S. hit, I've never been robbed of creative energy. "Out of ideas," that's normal, that's par for the course. But unable to have ideas? Being robbed of the power even to have ideas? That's a gift of the M.S.

I suppose the real lesson here is un-attachment; un-attachment to "the way things were." Certainly, I have created some interesting and creative things since the M.S., and enjoyed taking new roads. But the old roads... I wasn't ready to give them up. I'm not sure that I'm being called to give them up entirely and expect that they'll never return... isn't that just a different kind of attachment? Attaching to the loss, rather than giving up the possession?

'Cause "getting rid of the M.S.", that ain't going to happen—not that the M.S. can't change, or anything like that, but I can't through some sort of "doing" make it disappear. But changing my consciousness? That's another matter.

And being called to change one's consciousness—the human condition, too. And as I've often said, M.S. is nothing but the human condition, writ so large that we can no longer pretend that it ain't happening to us.

And so, where does that leave us? The same place that we were the day we came home from The Diagnosis, or from a marriage, or a birth, or a graduation, or a death, or any major life change... The place we were when we first heard That Question...

Now what?

Saturday, October 1, 2011

The line

I can still stand. I can stand at the sink to do dishes, at the counter and stove to cook. Although I walk very unsteadily, I can. I can walk from bed to bathroom, from house to car, from car to office at school (where my powered wheelchair awaits me), and from office to home. From car to doctor's office.

For a while...

But there's a line, somewhere. If I've been standing too long, walking too much... suddenly, everything plunges onto another line, a line of failure. When I've been standing too long—however long that may be, I'm sure it changes from day to day, and I have no idea how much time "too long" actually takes—suddenly, my "standing" is ready to fail. I can feel my legs simply wanting to give out from under me, and I feel like heading for a chair or the bed immediately is the only sensible option—because the next place I'm going is the floor.

When I remember, I do deep knee bends. Twenty five is a safe number, thirty is the target—just crouch and rise. Very simple (to most people). But there's a line there, too, and if I cross it, I may not be able to walk very well the next day, much less the rest of the evening. Can I tell that it actually has built up muscle tissue in my legs? Oh yes, it has been wonderful in the doing of that. But although it is increasing my strength (when I remember to do it, at least) and my strength once built does indeed stay with me, "the line" doesn't seem to move.

More dedication to leg exercises is definitely called for. I hope that in talking to you folks about it, I may have a bit more stick-to-it-ive-ness in continuing the exercises.

But when I do the exercises and my muscle tissue is rebuilt but it doesn't feel like it makes "the line" move, I am not exactly "encouraged." Certainly I perceived no improvement in walking steadiness, even when I could tell the muscles were coming back.

I wish there were something as glibly easy as Yoda's "Do, or do not. There is no 'try'" to fall back on. "Well, if you do it, you get some good out of it, even though it doesn't make any difference in the things that effect you the most" just doesn't rank high in the "powerful motivational sayings" list.

"Do it and at least something worthwhile happens, don't do it and nothing worthwhile happens." Right. It's easier to convince yourself to practice playing scales on whatever instrument(s) you're supposed to be learning. Those suck too, as far as "fun" goes, but at least you can tell when they've helped you.

"It's better than nothing."

Oh, that's the trick. I feel so ready just to leap up and take on the world!

Ah, if I could only do it without falling over. Pretty much the best I can muster is struggling up to stumble to the bathroom.

But, I've got to admit, being able to do that is definitely "better than nothing." Take what you can get, right?