Saturday, December 31, 2011

Ending; beginning

It's the last day of 2011. Seems mandatory, almost, to make a year-closing blog entry.

OK. So where are we?

I still have M.S., and it still seems to be getting worse.

I have no idea what the "income" side of the future holds. That, not the M.S., terrifies me.

Hardly seems like a "closing moment."

And here's this: tomorrow is the only January 1 of the year. The next day is the only January 2. Every day marks the beginning of a year.

So, each and every day marks, year-wise, an end: and a beginning.

So then, each and every day: happy new year!

Why not?

Thursday, December 29, 2011

Sensible vs. honest

Today was a "I just want to lie here" day.

I didn't want to read, I didn't really want to watch anything, I just wanted to lie down, in the bed, under several sets of blankets in a vain attempt to warm my legs, and sleep.

Usually, I've only had these "I need to stay right here, in bed" days when I was acutely ill. Usually, this time of year, by an invasion of what the Chinese medical system would call two of the External Pernicious Influences. Usually, an attack of Wind and Heat.

I've been completely Wind/Heat-attack free this year, for the first time in a long time (might be the new herbal formula). And, since I've got "progressive" rather than "relapse/remit," I can't really call this an "M.S. attack." Especially because it's nothing like what I've read (and been told) "M.S. attacks" are like. I just... want to stay in bed. Under the blankets. And sleep.

'Course that doesn't last all night. Last few nights, I've been very awake between 2 and 4 AM. Twitching. In terror, in fear for how I'm going to make it next year, income-wise. That has been a very interesting confrontation of lack of faith; to lie there shaking, and the "sensible mind" says "The proper road already exists. It always has. You just need to find it." and the "honest mind" says "I know that. But I don't believe it. If I did, I wouldn't be so scared."

The M.S. Journey has brought me into very sharp confrontation with my inner flaws/demons/choices. As the Islamic saying goes, the inner jihad is the great jihad. And I know from kyudo that one of the first things you gotta do is to get out of your own way. And offer yourself. And open your hands.

But I'm still scared. Terrified.

A very interesting gift of M.S.... A disease that's neurologically all about "againstness," as the immune system is chewing pointlessly, and harm-creatingly, on your own nervous system; that is bringing me into direct confrontation of my own self- and ego-imposed againstness. Againstness that I'm fighting so hard to maintain.

Ah, for a funny herbal formula that'd help address that againstness. Can't imagine how it would taste, though... Good? Foul? Both?

Tuesday, December 27, 2011

Looking into the wind

I don't often feel "disabled."

Has my life been changed, by this disease? Or as the Science of Mind church used to call them, "Dis- Ease?" Heavens, yes. Scratch that—[string of expletives] yes. Are there things that I just can't do any more? At least at the moment? Repeat string of expletives, twice—yes.

But I don't often feel "disabled." With that specific label.

But I do... today. Right now, I feel disabled.

Walking at all... Getting out of a chair—Everything minor and "normal" is much harder than usual.

I performed at a Christmas Eve service last Saturday night, and nearly fell over every time I tried to get up. And nearly fell out of my drum stool every time I sat on it.

At left, a picture of me, behind the timpani, at Oneonta. Before the Christmas Eve service.

And before a long series of "almost falling over" moments. And moments, during the service, that I avoided falling over and having all sorts of loud equipment joining me on the floor.

Well, I thought as I narrowly avoided disaster during one hymn, That'd sure put a new meaning to the singing of "Silent Night," now wouldn't it?

I don't really want to get out of bed. I'm trying to start a "I can do most of the work this project will require from a comfy chair" web-based project, that when I started working on it, I thought would be fun and fulfilling. Well, there's no reason that it won't be either of those things, but all I want to do is lie in bed under the blanket.

I feel like I can't do anything, any more. Being terrified about my future, having decided that there's just no choice and I have to leave the employment that I'd always told myself (and anyone who asked) that "I never have to look for another job," that (except for the parts that were killing me) I'd always truly loved—and parts of which I still truly love—plus the "squashing" effect Winter always has on me, plus the squashing effect that the current battery of M.S. Malfunctions are having on me...

I'm feeling disabled. And you've read my blog, I know I go dark every once and a while, but I do spend most of my time in the spiritual world, and I always think that the M.S. Highway is a spiritual one. And I still do.

In the book of Matthew, Jesus was walking on the water; he calls to Peter and tells him to walk on the water. Which he does! ... Until he looks into the wind (in some translations, he looks down at the water, but he always looks away from the face of Christ); and he is afraid, and he begins to sink.

I know just how he felt. I have, many a time, been commanded to walk on the water. I truly feel that now, I have just received that very call.

And I'm looking into the wind. And I'm afraid. And I'm beginning to sink.

M.S. is a disease that is full of the most surprising gifts. And as much as it has pissed me off, it hasn't failed me yet, in that regard.

If I'm brave enough to open my hands, and reach out...

I wonder what gift is trying to find its way into my hands, right now?

Friday, December 23, 2011

Lying down

I am SO tired.

Tomorrow, I have to play timpani/percussion, and sing, at a Christmas Eve service. The chairs I will have to sit in are not going to be comfortable or easy to spend an hour in.

But since I'll be stationed behind the choir... I actually could get away with lying down; nobody would see me, not even the organist. On the floor. It'll be cold, nasty cold, 'cause the floor is stone, but... lying down. That might be nice. Or necessary.

Hope it doesn't come to that.

I've been working at (poking at, sometimes) Possibilities For The Future. It's been interesting going in new directions, going to new places (mentally). But exhausting. And although a lot of the ground I've been traveling has needed traveling, right now I ain't really going anywhere besides the Land Of Learning About Things, rather than the Land Of Accomplishing Things. And I suppose learning things is accomplishing things, even knowing the maxim that "all writing is rewriting" doesn't mean that when you're metaphorically rewriting, and rewriting, and rewriting, and not visibly heading towards the finish line... it's hard.

Especially when you're tired and vacation time is the time that, theoretically at least, you're supposed to spend your energy on recovery.


Well, all I feel like I want to do is lie in bed, and I keep coming to the "I gotta lie down" place both physically and emotionally, so whaddaya think? Maybe tomorrow I'll stay in bed until it's time to put on the tux and head down to perform for Christmas Eve. They're playing a lot of my music, both arrangements and compositions, so it should be at least a little fun. I hope. I should be getting recordings (oops--gotta not forget to take the recorder!) and I'll post them here, if they come out OK.

And I make it through the service OK.

Well, that is one of the gifts of M.S. If it teaches you nothing else... it's how to make it through the hard spots.

And really, looking back at all I've lost, and given up, and the rough road I've walked (and continue to walk) and the physiological failures/miscues/unwelcome surprises...

Making it through one Christmas Eve service?

Yeah. I can do that.

And as I do my best to make the seating comfortable enough—and certainly, if I do have to make use of the "this is my chance to lie down" opportunity... you know, I'm going to smile. Because, as I say very, very often... comedy like that, you can't write.

And smiling at yourself while you're lying on the floor... that is definitely a gift of M.S.

Thursday, December 22, 2011

Lying down

Interesting days, these last few days.

I'm on vacation, thank goodness. So I don't have to have the alarm get me out of bed at 7:00AM for a while. Not that the cat doesn't have enough ideas about when it's appropriate to talk to me and ask for rubbing, but at least I don't have to get up.

And I'm very grateful for that. Because I'm having an awful time simply being out of bed, not to mention getting up and walking around. Today, I had so many wonderful ideas about "I really should work on project X," something that wouldn't take any physical labor, it'd just be typing into a machine or (now here's an idea) actually writing something on a piece of paper with a pencil.

But no. When I was finally able to get up, I made a Japanese tamago-yaki omelette, fried up some mushrooms, grated some daikon and added it to some natto. A lovely Japanese breakfast. Except before I was done, I was afraid I wouldn't be able to keep standing through the whole cooking process. I wasn't able to make the tea. I had to get off my feet, before I hit the floor. And that was getting way too close for comfort.

Several times today, I had to retreat to the bed. Because merely "sitting down" wasn't enough. I tried sitting down. It didn't work. I had to lie down.

I've been doing a great deal of thinking about "Well, I'm leaving my job in a half year or so, what am I going to do instead?"

When those thoughts are interrupted by "Crap... I gotta lie down. NOW. Before I fall down," it does give some poignance to the planning process.

Well, the very good news is... I don't have to answer the question today. Today... I can just lie down.

And y'know, on the M.S. Highway... Even a small kindness like that one, is a kindness. And I'll take it. Gratefully.

And now... (You knew this was coming...)

Please excuse me. I gotta lie down.

Saturday, December 17, 2011

Five minutes

Y'know, I've been doing the "Chinese herbal medicine" thing for... decades. It'd take a while to figure out how many. But decades. Many schools; Eight Principle, Three Treasure, and the unique but wonderful system of my current herbalist.

Herbalism isn't really designed to turn corners fast and hard, except when it's applied to acute and desperate conditions. It's more of a "slow banking turn" approach to changing your state from sickness to health. And I've always found it to be effective, trustworthy, and (aside from occasional "tummy music") side-effect free. Its effects have even amazed Western MDs, who were shocked that something with no side effects could work as well, and as fast (or faster), than their pharmacopoeia.

But with M.S., it's a different task. My current herbalist is trying to clear up all sorts of junk that's karking out my immune system, and try to get it to quit cross-reacting to a dishearteningly long list of things that are all-too-common in today's world. It's going to take a while to get to the "repair" phase. And, alas, we're not there yet.

He's been quite successful in slowing down the "getting worse," but getting better? Not yet.

Although last night, for about five minutes, I was walking around the house not clutching walls. Walking not briskly, but not tentatively... very nearly... normally.

Did it last? Nope. Did I need some help this afternoon, my wife very sweetly and kindly pushing me about in my transport chair. Oh yes. Is it going to happen again? Well, it's possible, but... who knows? Certainly not me.

But those five minutes... ah, those five minutes. They were... wonderful.

And in for we who travel the M.S. highway—even for all of our brothers and sisters in this world who aren't traveling on our neurological highway—wonderful is... wonderful.

And there's nothing wrong with wonderful. Even for five minutes.

Thursday, December 15, 2011

Cold cold COLD

I love my herbalist.

He spent nearly an hour coming up with this month's formula. This month's set includes cordyceps (finally, something with a side-effect: it's a performance enhancer, it's banned by the Olympic committee because it increases oxygen uptake in muscles, among other things) and licorice, something I've gotten in many a formula before, which adds quite an odd flavor to the formula. I gotta tell you, though, it beats the taste of gall bladder and turtle-shell-wax that my old Eight-Principle herbalist used to give me. He diagnosed some autoimmune oddities this month (and they're very odd) and he summed up his experience with M.S. patients this way: "This thing is damned complicated. All you can do is keep peeling the onion, and eventually wear it away."

And he suggested a specific herb to take nightly, because it actually helps your nervous system. (At least, he says it'll help my nervous system, and that's good enough for me.)

He hopes this formula will do something reasonably soon (and it may be doing something already), but he gave me directions on doubling (and tripling) the dose if certain changes don't arise in a week.

And I'm hoping that one of those changes will be in cold-sensitivity. I live in Southern Freaking California, where winters have always been deliciously, unseasonably warm. Now, it's New Haven CT that's unseasonably warm. When I was in college, I left LA at 80 degrees, and landed in New York City where it was 8. Today, New Haven is warmer than LA. And... I have enough trouble walking, even with my walker. The temperature is making it harder.





Insert your favorite expletives, shouted angrily at the heavens


The "hot-water test," the old stand-by for diagnosing M.S.? Bring it on.

Monday, December 12, 2011


Winter is definitely not my season. Never has been. I do love Christmas music, and making Christmas music, but winter... I do not love.

Now, if I were able to take winter completely off... to do less, to spend more time in bed, maybe more time in warm baths (having a bathtub that I could fit into would, of course, help), to do the sort of thing that nature intended us to do in the winter—that being, of course, less—I might like it more.

But "less" doesn't seem to be an option. Right now, at least. So, I take what "less" I can. I didn't go to the store on the way home, as I usually like to do, because the cold (and today the wet, quite rare here in L.A., even in the winter) is making walking, even in a heated house, more than usually difficult. Make that very difficult.

Winter... squashes me. Makes it very difficult to start new projects. That's more of a ... season-of-spring kinda thing.

But I can't wait that long to start some new projects. Again, "less" doesn't seem to be an option. Well, at least a little less, it's gonna have to be, but it's gonna be as little "less" as I can make it.

Well, we do what we can. When we can. As we're able. Again, the human condition.

And the M.S. Highway.

Saturday, December 10, 2011

Music; voices; the Question

A very clear indication that crossing my employment Rubicon was the right decision...

I can just sit down, any time I want to, and start writing music. And music... just flows. Easily. And beautifully. I've been living in Creative Drought Hell, for at least three years—maybe more—only extracting a few drops here and there, when it used to come in a Ten-Commandments-Parting-The-Red-Sea-grade flood.

But now, if I want to create music, I just sit and write. And write. And write.

'Course, with the decision to change your income source comes the closer-every-day deadline to find a new source. And, sad to say, with the M.S. has come very, very clear indications of roads that can no longer be taken. But, I must say, some of those roads, I've spent way too much time already, and M.S. or not, I'm done with them, so being unable to re-travel them because of The Disease... well, that is a gift of M.S., isn't it?

We M.S.ers, we confront so much sorrow in the face of the long list of "what you can't do any more." But each time that this very firm (and, we think, uncaring in its firmness) voice tells us "You can't go that way anymore!" there is also a sweet and gentle voice—one that is hard to hear, given the shouting of the first voice—that is softly telling us "No... go this way, instead."

So, that is my new mission. Yes, I'm going to be doing some homework, calling the M.S. Society with some logistical questions; talking to my creative/supportive team about some ideas we're kicking around; and whenever possible, definitely writing some music. But my real mission is to listen. Now that I've stopped the internal noise of struggling in a fight I never should have been having in the first place, I can listen for the voice of the Universe; listening for the answer to the question that all of us M.S.ers whisper quietly, and often shout angrily, all the time:

"OK... What now?"

There is an answer, for each of us, for all of us; and for me. And to hear it, all I have to do...

is listen.

Friday, December 9, 2011

Big difference

Wednesday, I crossed the Rubicon; I told my employer that this would be my last year with them. I'll always be a member of the community, we both want that, very much; but after this year's over, I can't work there any more.

It was very hard to come to—and even more so, to act on—that decision. But now that it's done... I haven't felt this good in a very, very long time.

I still can't walk without a walker. Even with the walker, every once and a while I come way too close to falling down. I've got a lot of let's-not-talk-about-them below-the-waist dysfunctions. Oh, I can go on and on with the "what's not working" list...

And of course, there's gonna come a time, I'm gonna have to come up with a way to replace that income, and exactly how that's gonna happen has not yet revealed itself to me...

But I feel better. M.S. and all, it's a very, very, VERY big difference. To feel ... better. Who cares if the physical isn't better... I feel better.

And, y'know...

I'll take that.

Thursday, December 8, 2011

Three moments

Three interesting moments, today.

The first: I was talking with a psychologist, and was asked, "When you got The Diagnosis [capitalization mine]... did you ever ask 'Why me? Why did this have to happen to me?' "

"Actually," I said... "No."

"NO?!?" she asked, quite surprised.

No. Not on the day of The Diagnosis, and actually, never since. Have I been pissed off at it? Yeah... Grieved because of it? Not enough, but yeah... but asked, "Why?" Honestly, I really don't think so. The question's just never come up. I told her, I'm an organist—I've never asked myself, why do I play the organ? Why would I? I just do.

"Well, I guess it's just not in your psychology," she said; and, I guess, that was that. I suppose it didn't mean as much as she thought it might. Well, M.S. is full of surprises, but I hadn't thought they would extend to other people.

Thing two: I was telling one of my students what I frequently tell seniors who are applying to college. There's nothing you can do to make them want you. You can make them not want you; but you can't make them want you. And if they reject you, just remember... if they don't want you, you don't want them. I have never in my life ever been proven wrong on that. And I've often found out after the fact just what a blessing it was to not have been sucked up into whatever it was, because the situation I avoided turned out worse than I ever imagined. So don't worry: If they don't want you, you don't want them.

Hours later, I realized... no wonder I've been suffering for so long. I forgot my own advice. It was clear that they didn't want me... why was I trying so hard to buck the tide? They didn't want me... and clearly, given how much I suffered, I actually didn't really want them, either. I was right, and didn't even know it; and also, didn't listen to my own words of comfort. Physician, heal thyself, as the saying goes. This made me feel even better about my decision to cross the Rubicon yesterday.

And the third thing: I'm at a gas station on the way home after the day's adventures, filling up the truck, and as I'm standing at the gas pump, my bladder starts yelling at me, "I gotta go! I gotta go! I gotta go! Now now now now NOW!!!"

Great, I think. Ambulation triggers micturition—or at least, it claims to. But doesn't really. Or does it? Bladder clearly doesn't know, but I'd sure like to. Hell of a system. What will it think of next?

And then, I think... A day of realization, of moments during which important changes of consciousness "click" into place, and we end the day... with a pee joke. Well, I don't ask "why," but sometimes I want to ask, "A pee joke. Really—that's the best you can do? Create the starry heavens and all life, and ... you go for the pee joke."

That's funny. Chalk up another one in the "humor you can't write" column. But, after all that I've gone through in the last couple of days, I end by laughing at myself... Even on the M.S. Highway, that's a good way to end the day.

Wednesday, December 7, 2011

Againstness; openness; and gifts

A major removal of "againstness" from my life, happened today. "Againstness" being what we on the M.S. Highway are mired in, neuro/immunologically speaking (definitely on those levels, among many others), and reducing againstness is devoutly to be sought, whether you're sharing the road with us or not.

This is my herbalist's first tool: stop throwing things at the immune system that make it go "wacko." Before you can start fixing things, you've got to stop messing them up.

So, I took a big step today. I told my employer that this chapter, my full-time employment in this particular role, is at an end. Not on-the-spot quitting, but that this is going to be my last year in this role, and when this school year comes to an end, so does this chapter in our journey together. I want to remain a part of the community—and I think the community very much wants me to remain a part of it—but "the enterprise," the faceless, nameless, non-human entity that keeps the organization qua organization alive, doesn't want me; and truthfully, I don't think it ever has. So, it's better for it, and certainly for me, to remove this dissonance between its hopes and mine, its expectations and mine, its desires and mine. Time for this chapter to end; if for no other reason... because only this way, can another one begin.

I feel better than I have in months. Years, even. Do I do good there? Yes, I do. And always have. But for the humans, for the young people... not for "the enterprise."

I'm not saying "goodbye forever." But I'm changing our relationship. And, I think that both I and "the enterprise" are happier.

So, what's next? Actually... I think that's the fun part. Never... never... has the Great Machine of the Universe failed me. Something big has happened... and that very "bigness" had precisely the right power, direction, and timing, to create a new chapter in the Great Adventure. And, that particular chapter was exactly what I needed. And, I think, exactly what the Great Machine needed for me to do, for it.

I've actually seen some evidence of my encounter with M.S. being of this nature. But, even after The Diagnosis, I was still hanging on to My Same Old Life. When that Same Old Life was trying to leave me. Much of it had, but I was doing my best to not let all of it go. Because... I was afraid.

I've been living a "Gethsemane moment" for years. Christ's plea in the garden, "Take this cup away from me." But even Christ eventually realized that it was time to stop fighting; finally, he was willing to say, "Not my will, but Thy will be done."

And it only took him one evening. Me, I've been making that prayer for years... not about M.S., but about not being willing to face the choice that I knew I needed to face, and that I haven't been able to face until today.

And face it, I did. With calmness; and honesty; and sincerity; and open-heartedness. And kindness. And even forgiveness. It was a beautiful hour, an hour of telling the truth... with love.

And facing this thing that I've been so afraid to face, I faced... with precisely the things that living with M.S. has strengthened. I never would have been able to face the truth of this moment, and the truth of having to face this moment, and to face both of those with open hands and open heart, had I not been "afflicted" with M.S. And spent the time I have on the Neurological Highway, and being changed by not by the neurological malfunctions, but by the journey.

They were truly... gifts of M.S.

Amazing thing, this "disease," isn't it?

Tuesday, December 6, 2011

Tomorrow, I will be taking the first step of a Big Change. A Very big, Big Change. And, only the first step. But it's a Big Change. One that has been overdue for far too long.

More details tomorrow. I'm sharing what I am, right now, to bolster my courage. Because I have to do it. I've known that I was going to have to do it for a long time, and I haven't been willing to cop to the truth that my heart, and the entire Universe for that matter, has been trying to tell me.

My kyudo teacher once told the class, "Nobody will give you anything if your hands are clenched. Before you can receive, you have to open your hands."

I need to open my hands.

One of the gifts of M.S. is sensitivity—given that I was already too sensitive for my own good before The Disease hit, you can believe I'm really sensitive now. Which means that when I take the leap... the fear before the moment of the leap itself is going to hurt even more.

But, as Eustace said in The Voyage of the Dawn Treader, of the way Aslan pulled off his dragon's skin, "It hurts like billy-oh when it's coming off, but it feels so good once it's gone."

The change is upon you—that's the first thing we have to deal with, as M.S.ers. The change has already happened.

So, what do I do now?

Oh, I dunno... how about...


Easy to say, ain't it. OK, then... with you, my friends, as witnesses:

It's time to do it.

So... here we go, then.

Sunday, December 4, 2011

Warmth, in the middle of devastating winter

I commemorated the Storm That Trashed Pasadena another way, this morning: I composed a new anthem for Oneonta Congregational Church, an arrangement of Gustav Holst's carol, In the Bleak Midwinter.

You can guess from the title why I was immediately drawn to this text, given that the church (as so many still are) is without power, which means no organ, no light, and no heat. And yet, even if we can't warm the body, we can warm hearts, and warm the hearts of one another.

Some of my dear readers may not follow the Christian path; but this music is for you too. Not because I want to convert you, but no matter your spirit path, the last phrase speaks of what you can give, no matter what other roads your life takes you down.

And it's something that all of us M.S.ers can give, because for all the malfunctions that beset us, this is the one thing that no disease can ever touch; because it is beyond the limitations of the world.

Friday, December 2, 2011


For days... weeks... I have been going back and forth on "where I'm supposed to go," career/employment wise. Many doors have been closed by the M.S.-related physical changes; some have been closed simply by age (even though there's a "come on, you're only 51, what's this 'age' crap?" factor, but it's there anyway); some have been closed by choice, brought on by experience and, as I occasionally like to think of it, wisdom provided by suffering and not wanting to suffer again. Some roads I've traveled, and have been glad to have traveled them, and am even more enthusiastic about not going down them again. You know what I'm talking about... we all have invisible "combat medals" that we won by surviving the battles that made us who we are today, and that we So. Don't. Need. to win more of.

Earlier this week, Pasadena was devastated by higher-than-gale-force winds. People went without power (myself included), streets were littered with broken branches, sometimes entire trees were felled by the wind and left strewn about the roads. Or, sadly, crushed entire houses. One thing was very, very clear; the planet is bigger than you are. Compared to the planet, and the forces in play on the planetary level, you ain't nothing. Planet doesn't even know you're there. And when you see just how small you really are, it's hard to get your own knickers in a twist about "You don't understand, this is really important" when whatever it is has nothing to do with life, or health, or home, or simple survival.

Really... I just saw a tree that's older than both of us uprooted and hurled onto the ground, dozens of yards from where it has been growing for decades, maybe centuries. There are people not all that far from us who no longer have homes or food. And you're telling me that making sure that this form is filled out properly, or justifying this argument you're making about some mental model of yours being superior to someone else's, is "important?" Really? Really?

And the evening after Pasadena was hammered by the wind, I performed at a concert celebrating the lives of AIDS/HIV victims, in support of the Pasadena Pride Center. They spoke of loss, and courage; and what really connected with me was what they said about the Pride Center. They spoke of young people who wondered whether they were "normal," whether it was "normal" to feel the way they felt—who were unclear about even what it was that they were feeling. And they spoke of how important it was to have a place for people to talk, and to be reassured that they weren't "broken," but that their orientation, their feelings, their questions, didn't have anything to do with their worth as people; whatever state they were in, for them, it's normal. And they're normal. And they're worthwhile, they're beautiful, just because they're people. And what's really important... is to be true to yourself. To be true about yourself, to yourself. Because you are who you are.

Don't we M.S.ers need to be true to ourselves about ourselves? That for us, where we are right here, right now, is now "normal?" That whether all the equipment works the way it used to or not, we're normal, and our malfunctioning equipment has no bearing on our worth as people; and that we have things to offer, we have things that we were born to offer, regardless of the state of our nervous systems. That we're normal, and we're beautiful, just because we're people. I'm beautiful, and worthwhile, because I am me. And the way my nervous system works has nothing to do with that... and it never will.

Lemme tell you... watching the wind rip the city apart, with a power that absolutely dwarfed anything that I've seen, that I am, and that I'll ever be; and then hearing people talk about life and death struggles with diseases, and with the life or death struggle simply to accept oneself, because it's definitely no life if you can't live a life that loves yourself as you are, as you were born to be... well, that puts wrestling with "how am I going to deal with this 'job' thing" in a different light. Do I need to deal with it? And with how M.S. affects my career choices, my employment future? Of course. Not to deal with those questions is the height of foolishness. But... are they that "big"? On the scale of the forces the planet itself wields? Really? Really?

Have my questions been made easier to answer? Also no... but they have been made a lot smaller. And maybe that alone will make them easier to answer... We'll see.

Monday, November 28, 2011

A win, in my book

So I'm at school; I drive my motorized wheelchair to the elevator and push the button. Nothing happens. I ask a student to go upstairs and push the button there. Nothing happens there, too.

And I have a class waiting to be let in, outside the locked second-floor classroom door. It's cold, and I don't want the kids to suffer in the cold.

So I somehow drag myself up the stairs and wall-walk to the door, and let them in.

The comedy hasn't even started. I go for my cell phone, to call the facilities director to get him to see if he knows anything about/can fix the elevator. The call won't go through.

I have to wall-walk my way to the door. Then totter out to the wall of the second-floor balcony that extends around the building, and place my call from there. Fortunately, it does go through. He says he'll come and look at the elevator. Repeat the process, backwards, stumbling across the balcony back to the door, wall-walk back to my chair.

One of the students looks a little concerned. I tell her, "It's comedy that you just can't write. I mean, if I wrote this in a sit-com, people would say, 'That would never happen!'" She smiles. I also say, "Y'know, when a two-year-old totters across the room and careens into the wall, everybody laughs. A fifty-year-old does it, it's not so funny." She smiles. The concern of the kids assuaged, I wait for facilities guy to look into the elevator.

It was an easy fix, he went into the machine room, cycled the power or flipped a switch or something, and everything is working fine. He gives me the good news, and heads out... of course, leaving me sans wheelchair, stuck on the second floor. I let the kids out a couple of minutes early so I can deal with the struggle down the stairs not during the rush between classes, struggle down the stairs, and pop back into my wheelchair.

And that was only the first hour of the day, of the first day of the week.

"Uninteresting" is a view that the M.S. Highway never provides. Actually, I considered it a victory—I kept the kids from worrying.

I was massively inconvenienced. They were concerned. I laughed at the inconvenience. They laughed with me. As far as I'm concerned, that's a "win" in my book.

Saturday, November 26, 2011

Smiles, tightropes

Today, I have come across some interesting commentaries on "approaches;" on "paths."

Judy, M.S.-haikuist extraordinaire, today writes about "smiling it away." She's right, the best attitude in the world isn't going to make the M.S. give up and go away. It's not a cure. And won't ever be.

But, if you're smiling, how much power does the M.S. have over you? Yeah, I can't do all sorts of things, but if I have quality of life, and a smile, how much does it matter? Does it affect me--hell yes. Does it change the way I go about my daily, weekly, monthly, yearly, entire life business? Hell yes. But if I'm smiling, if I'm enjoying the journey anyway... I'm enjoying the journey. Wasn't the one I had anticipated, probably isn't the one I wanted, but if I'm enjoying it anyway... isn't that all we get, no matter what road we're obliged to take?

And author and professor Michael Cisco has begun a new daily exploration of Kafka's Zurau Aphorisms. Today, Kafka speaks about "the path" not being a tightrope suspended high above the ground, but a rope suspended just above the ground. I'll let the author(s) discuss these ideas, but especially in the context of the M.S. world, Kafka's idea of "a path you can trip over" has a very interesting meaning.

Personally, I find Zen more comforting, but the M.S. Highway is always an... interesting... journey. And so is Kafka's idea.

Friday, November 25, 2011

Pleasant (!!!) surprises

One of the odder gifts of M.S. Definitely falls into the "humor you can't write" category.

I was driving somewhere the other day, when I realized...

... I love these hand controls. No—I prefer these hand controls.

Yeah, I can't sip at water or tea while I'm driving—given the unpredictable, idiosyncratic, well-nigh-impossible-to-decipher behavior of my bladder, that's definitely a gift, right there— yeah, activating (briefly) the windsheild wiper is a little tricky, yeah I can't pat my wife affectionately while I'm driving, because both hands are 100% occupied with operating the "mission-critical" operations of the car, 100% of the time.

But, I gotta tell you... it's easier. More comfortable. And, dare I say, it might even be fun.

Life with M.S. is full of surprises. And those surprises are sometimes surprisingly enjoyable.

Now, that's funny.

Thursday, November 24, 2011

Chains; gifts; thankfulness

Still pondering the life-changing change that needs to be made in my life.

Awright, a little more detail will make this work more easily. It's work. I'm wondering whether it's time for me to work somewhere else.

That would definitely be a life-changing change. Huge change. Massive, reverberating change.

And there would be things I definitely wouldn't miss. Ever.

But there also would be things I would very much miss. The bright smiles. The laughter. The amazing "aHA!" light that goes off in the eyes, on the face, in the very soul, of someone who has just experienced that beautiful diamond thunderbolt of changed awareness.

And dammit... that's my quality of life we're talking about here. And I ain't ready to give that up.

There are things that need to be different. Hugely different. A massive, reverberating difference. But the place that has to start, is me. Because I can't change my environment. That's been part of the problem—I've been trying to change it. And I can't. It doesn't want me to change it. Or anybody to change it, as far as I can tell.

In an earlier post, I talked about the meaning of the tarot card "The Devil." And how the "prisoners" are chained by choice. By their own choice. As Marley's ghost said of his chain in The Christmas Carol, "I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it."

M.S. is all about "against-ness." Immune system that's going nuts and chewing on itself. Nervous system trying to work around the damage the immune system has caused. The sufferer trying to figure out what signals his nervous system is sending him are true, which are false, which to trust and which to disregard—which choices themselves can be incorrect, because the "target" is always moving.

And here, I'm suffering from self-imposed against-ness.

I didn't go for conventional Western M.S. therapies because the first thing their manufacturers tell you is that they're not going to contribute to your quality of life—sadly, they'll probably rob you of it, about the only thing they can actually guarantee.

And damn it, quality of life is all I have.

So why have I been working so hard to rob myself of it?

I've got a ways to go on this. There's still a lot of processing yet to do.

But I gotta tell you, I don't know if I'd have come to realizing this but for the experience of walking the Neurological Highway. The M.S. road.

And I know that the next turns this road is going to take are going to involve sharing some of the gifts of M.S.

Lots of things to be thankful for, this Thanksgiving, it would seem. And things to get out of the way of the world trying to give you things to be thankful for.

An interesting road.

Wednesday, November 23, 2011

Farewell to pumpkin pie

Thanksgiving break started today. Tomorrow, my wife and I have Thanksgiving dinner with my parents.

Being on the "no dairy of any kind—ever—and that's at least three underlines under the 'no' of 'no dairy' " diet, the Thanksgiving holiday is completely different now. Your basic, traditional, Thanksgiving meal is Dairy City.

Butter on the mashed potatoes. Milk in the mashed potatoes. Sour cream in the mashed potatoes. Baked potatoes? Make that butter, sour cream, and cheese.

Butter on all the vegetables. And, used to cook the vegetables.

Cream in the gravy. Which, cream and all, was finished using the French "monter au buerre" technique—in other words, add butter. Of course, the mirepoix using which the gravy was started was sauteed in butter, too.

Condensed milk in the pumpkin pie. Whipped cream on top of the pumpkin pie.

And, like so much else in my life since I started the M.S. Highway... Gone. All gone.

But, to be honest with you... playing the organ, that I miss more than eating pumpkin pie.

We're going to a vegan Japanese restaurant tomorrow. Nice people, nice food, no dairy, somebody else does the dishes.

All things considered... especially given what I've lost, in my journey down the Neurological Highway... At worst, that's three out of four to the good. And really, given what dairy does to me... that's four out of four.

Saying farewell to pumpkin pie... not so bad, really, all things considered.

Monday, November 21, 2011


Well, I wish I had something poetic and spiritual today, but it's symptoms.

I'm cold. Really cold. Even given that Southern California thinks that 60 is cold, when it gets into the 40's and 50's, it's well past "cold enough" for me, thank you very much.

Walking, still... vaguely... works. Sill very rare falling down, fortunately. But there are times when I am gearing up to stand up, or just sitting, when my legs have the same control that a ventriloquist dummy's have. Which is to say... nothing. Lots of flopping.

The security guy at the school where I work, a former Marine, has a spare key to my car, because he offered to drive it from the parking lot to the curb--so I wouldn't have to make the walk to the lot. Alas, today, I guess something came up, and he couldn't move the car for me and the car was still in the lot when I wanted to leave the school, so today, I had to make that walk myself.

Rough timing, from office door to car door, including time required to put walker/transport chair into the back of the truck: about 12 minutes. When crossing at the crosswalk, waiting for the signal, and stepping off the curb when the light turns green... I can't make it all the way across before the signal turns red.

So yes, person who asked me the other day whether I "needed" the electric wheelchair to get around campus... yes. Yes I do. Watch me make that walk from my office to cross the street to get to the handicap spot in the parking lot, and see if you really, really, want to ask that question again.

I was so exhausted from the day, and from that "walk," that I didn't go to the banks like I've been planning on dooing for more than a week. I've got checks burning a hole in my pocket, and I didn't have the strength to deposit them. That's expensive fatigue.

Was hoping to do some music work when I got home today. I was way too tired to do that. Maybe a little tomorrow... we'll see.

Still doing thinking about the major life change I'm contemplating. What I'm hearing from the universe is "Yes, do it," but the actual doing of it is gonna be scary.

Well, there's a gift of M.S. for you. It does present you with s--t you gotta deal with, doesn't it? And you practice dealing with it, because what else are you going to do?

Practice doesn't make perfect. Only perfect practice makes perfect.

And for all the practice the M.S. road has been giving me, in the "dealing with s--t you gotta deal with," somehow... it isn't getting any easier.

Looking at what all this "practice" has bought me... still, some things that I find hard are still hard, and things that I find easy have always been easy. The struggle against falling down, sometimes losing the struggle against falling down, bladder control issues... those are easy.

Now, facing, reducing, accepting, my own ego... that's hard.

I wonder what the Buddha would have done, had he had M.S.?

Probably about the same as what he did anyway, actually. Now, there's a lesson for us all. And especially, for me.

Saturday, November 19, 2011

Taking a step

Judy, M.S.-haikuist-extraordinaire, has some very thought provoking things to say about "Yearning to emerge." Her work always speaks to me, but today, it's especially powerful.

I know how she feels. Just look at the photos on this site: Organist, percussionist, archer.

Not any more. (For the foreseeable future, at least.)

And yet, I recall a card I got in a recent Tarot reading: The Devil. What's especially pertinent to me right now are the two people in chains.

In chains... really? Look more closely: the chains are only looped around their necks. They're not really shackled; they could remove their chains easily. If they wanted to, that is.

So I'm currently facing a major "chain-removal" decision. A major, major change, expressing itself most visibly in my place of employment. It won't be implemented immediately (I'm under contract, which I don't feel like escaping from, and I'm sure neither do they) but there are decisions to be made. And plans.

Which, I think, I'd better start acting on. Even in a small way--but I need to take steps in completely, completely, new directions.

Ah, locomotion metaphors. "Taking steps." Considering that I feel like I'm on the edge of not being able to walk at all, "take a step" has a very special meaning.

And now that I think of it... especially considering how hard it is for me to walk, "taking a step" has a very special meaning. It takes more commitment than those who walk easily might think.

So, then, my immediate course is very clear. Time to put the blog down for the moment... and take a step.

Wednesday, November 16, 2011

This time... NOT funny

Just had to get this off my chest.

I have a powered wheelchair to help me get around the school where I work. To give you an idea of the basic size of the campus, five round trips from my office to the administration building is a mile. Which, I guess, makes a single round trip something along the lines of, uh... let's call it around 350 yards. Three and a half football fields.

The powered wheelchair is the only thing that makes it possible to get around the school. I got enough problems with a trick bladder as it is, if I had to struggle with my walker while struggling with the trick bladder, well, as we used to say in the I.T. world, there would be "undesirable and unpredictable results."

Today, somebody actually asked me if I needed the powered wheelchair.

I chose one of the least aggressive things to say. "Well, it takes me ten minutes to get across the street," I said as I pointed at the parking lot. "It would take me about a half hour to get from one end of campus to the other. [Class periods are 43 minutes long.] And after using all of my energy simply to get around campus, what energy would I have left to do what's really important: help the kids?"

I figured that "tempting fate by walking with the trick bladder, when it's on the edge of cutting loose" wasn't the road to take.

But... come on. Have you ever seen anyone in a wheelchair and even thought to ask, "Do you really need that?"

I gotta tell you... I hit the ground at 2:00AM and I find the humor in it. A co-worker asks me if I "really need" the powered wheelchair... and that... I'm sorry, but that's not funny.

But there's a lesson in it. A gift of M.S. Another one I'm not exactly sure how to open... but there is a lesson in this moment. We'll see if I'm willing to learn it.

Monday, November 14, 2011



Things aren't getting easier. Why that should surprise me, even a little... I don't know.

An interesting day, at work. A seminar for all us teachers. Some interesting things were said. Some things that were not said were also interesting. And were quite revealing, in their own way.

Of the many interesting things that were said (and unsaid) and that were revealed by the presentation (and were also revealed by some questions the presenter was unable to handle), the most interesting were questions that only I heard, because they were raised by my own "inner voice."

People have told me that I would be good at being an "inspirational speaker." Well, I do hope that in my role as a teacher, I'm inspirational, on many levels, so that's a match. But I looked at this presenter, and I asked, "Do I want to be like him?" And the answer "NO!" came back loud and clear--but then again, there were things about his presentation that were also definitely not what I would have wanted to do whether I was touring to do them or not, so that question was clouded by the presenter not doing precisely what I would want to do.

I was at a meeting at school. Surrounded by my colleagues. I like and respect them. It's an honor to be counted amongst their number. I absolutely love working with the students--they're my best therapy. And I asked the voice whether I wanted to keep being here.

I got two answers:

"Yes. You belong here."

"No. You don't belong here."

Well, THAT was helpful. Especially because the "No" was louder than the "Yes." Well, that raises another question: If not this, then what?

"Now what?" is a question that gets raised by the life with M.S., isn't it? Thrown in your face, even... isn't it? And it's going to get thrown at me until I answer it.

Well, I can't answer it right now. This, I can answer: Why am I bringing this up on an M.S. blog? Which is oh so very often "covering" the Neurological Battle, the challenges that neurological malfunction puts before us, the losses we must face, the choices we must make.

Well, those last two are definitely where I'm at. Where the M.S. Highway has brought me, sooner than I wanted to deal with them. It's just like life, that way, ain't it?

In the TV series Babylon 5, the aliens called "The Shadows" always asked the question, "What do you want?" That's the question that I feel is being put before me. My beloved magic teacher Eugene Burger says, "How will you know that you've gotten what you want... if you don't know what it is that you want?"

And, truthfully, I can only sort of answer that.

Great. That's another duel I'm having with the M.S. Highway, over and over, ever and ever: Confronting the state of "sort of."

So then... here I am. As much as I'm getting tired of confronting "sort of," I'm definitely not into confronting "Now what?" Or "What do you want?"

There's a gift of M.S. Questions you can't walk away from. Just like the human condition.... except, pretending that you can't answer them, that's the first thing that's removed from our lives.

Interesting "disease," isn't it?

Saturday, November 12, 2011

Sensations; amazing gifts, indeed

Interesting sensations, over the past few days. Physical, meteorological, energetic, even metaphysical sensations.

A sensation of temperature: My legs are cold. Cold. Cold cold cold cold cold. I don't know whether it's the environment's temperature, or the endothermic temperature I'm perceiving them as having, that's causing this, but using my legs at all is more difficult than ever. Standing up was always a bit of a "trick," but now it's a challenge. And not one that I'm always sure I'm going to overcome."Not falling" is becoming a moving target.

A sensation of ... Lord, I don't know what: A few days ago, I was sitting at dinner with my wife and my parents. Now, I'm sure that this was due to nothing that anybody said--especially because it happened again, at unrelated times, over the next few days. I'm not really sure how to describe this well, but the best words I can give it are...

Something's wrong. Something just went wrong. Bad wrong.

I took a day off work, stayed at home. Functioned physically reasonably enough at home. But I felt like... something had gone wrong. Energetically, maybe... very deeply, very subtly, but wrong.

Now, even with the people that I traffic with, in the healthcare world, who are used to reading subtle signs, I don't know how I'm going to explain that. We'll see.

And a sensation of... the seeds of transformation: I stepped out of the house one day, and I breathed the air, and I got a real significant "juju" buzz, simply from the world. It was the onrushing element of Water (five-element Water, not the stuff that falls from the sky so rarely here in L.A.). But Water is about, among other things, rebuilding. Getting ready for new growth... for the Big Changes that new growth brings. It's about very profound internal transformation... Neil Gumenick's site says it way better than I can.

But this kind of internal rebuilding, internal reconstruction, internal transformation, is just what I think I am being called upon to face. And that's going to have its expression externally, and that change could very well be huge.

The M.S. Highway does present the most amazing challenges, in the most amazing dude-there's-no-way-you're-dodging-this-one ways.

Amazing gifts, indeed.

Wednesday, November 9, 2011


Not sure whether to feel confident or worried.

My leg strength, which for a long time has been fading, seems to be up. I wouldn't say I have stamina, exactly, but I definitely have muscle tone. I had been having to exercise specifically to create it, but now, simply living and what little walking I do seems to be maintaining it nicely.

But control over my legs... that's not good. Not good at all. It's worse.

I'd like to blame it on the weather, the season of the year (which historically has been hard on me, for a number of reasons), on anything but The Disease. And it might be just that.

I won't really know until the spring, or a reversion to Sunny Southern California's not infrequent "hot winter" weather.

So... nothing to do but... stay warm, I guess. And even that is problematic. Even covered with blankets, my legs are cold.

But then again... what about The Disease is predictable? Or reasonable?

Really. What was I thinking?

Monday, November 7, 2011


A small and quiet triumph today.

A very successful, and very enjoyable, day of teaching. And then, I went to the store for some snacks. And then to Office Despot for some computer equipment. And then to the credit union, to deposit some checks. And then, to the vet to pick up some cat food. And then, to the cleaners in the nearby grocery store.

This is the kind of "spend the day clearing my to-do list" day that I used to have. Every day. Without thinking; without even noticing. And I haven't had a day that productive, so simply and easily productive, in months. Easily, for over a year, if not longer.

And today... it just happened. Without any effort.

What a wonderful gift that was. For what I've always regarded as "the simple" simply to be possible.

And yes, the cold weather was making walking (with the walker) increasingly difficult, and the final journey along the full width of the very amply-sized grocery store was hard, and felt like it took a very long time. But I made it. And made it home.

And even managed to get the groceries out of the car. And put them all away. All by myself.

And even managed to take my wife out to dinner. And did all the driving, and never asked to be pushed in the chair, did all the walking myself.

A triumph.

About time.

Saturday, November 5, 2011

Hell and heaven

Judy, who doesn't blog but "haikus" about her M.S. journey, had something quite wonderful to say in today's installment:
M.S. sucks but I do not.
A worthwhile reminder.

And so, we return to our hero as he adventures along the M.S. highway...

Being an "outlier" in my experience of M.S.—actually, given that all of our experiences are entirely our own, even though we have some of them in common, we're all outliers, in one way or another, but I digress—I shouldn't be so surprised that I'm taking the cold weather so poorly. Now, I know, I spent seven years in Connecticut, and I know people who have lived in New Hampshire, so Southern California's mid-50's don't hold a candle (or an ice cube) to the parts of the country that are really cold. Don't care. It's cold, and I'm cold. My legs are extremely cold-sensitive, and They. Do. Not. Enjoy. This. Time of year. At. All.

The bedroom is delightfully warm—but my legs don't think so. I lie under the blankets and pile extra blankets on top of just my legs... and they don't even notice it. The oddest thing is, I put a heating pad on them, and that doesn't work, I don't feel it—but something living, like a cat or my wife, I feel.

Still trying to work through the "grieving" that's needed doing; that needs doing. That wants to be done, even if I (to be honest) don't want to deal with it. Some of it is directly M.S. related, things that are no longer on my "doable" list thanks to my neurological malfunctions; some of it is my relationship to the world, something that has actually been in the works even since my pre-M.S. days, but having M.S. seems to have pushed it to the front burner; it has, I think, been on some burner for a while, but it's on the front burner now, and it needs to be dealt with. Because as much as it hurts, and it hurts, it's gonna hurt more if I pretend that I can get away without dealing with it.

Which is a lesson—a gift—of M.S., anyway. Some things need to be dealt with, when you need to deal with them... even if you wish you could delay confronting them (and yourself).

My doctor is very quick to challenge me when I personalize M.S. "M.S. doesn't exist," he says. "There's nothing there that isn't you." I'm doing better about that; it's a work in progress. But if there were to be personalization right now, it would be a voice saying quietly, "You have to deal with this."

"You know you have to deal with this."

"I know you don't want to. But you have to. You have to."


The inescapable voice of truth. Hell of a gift of M.S. Or a heaven of a gift... depending on how you choose to look at it.

Wednesday, November 2, 2011

Thank you, M.S. (?)

It's enough of a battle within ourselves, finding value in what we can do, versus feeling worthless because of what we can't do.

I feel like I'm fighting that battle with other people, who (at least I think) find my contributions deficient, because they don't involve schlepping stuff.

Now, there's a very long list of things I can do at my workplace. That nobody else can do. But the things that other people can do—for example, schlepping stuff—somehow, those seem to be more highly valued.

We're not dipping into the ADA-protected danger zone at the moment (at least, I don't think so). It's more of a "personal" perception of value. That somehow, as such things always do, gets converted to perception of "professional" value.

So now, I've got two problems: One, dealing with institutional perception of my professional value. There may be ways around this, and that's easy to work on. Copious communication, for one—better they should get tired of me talking about all the cool things I'm doing than to keep quiet about them and then get pissed that nobody knows about the things I didn't tell them.

And two, the much, much harder problem: Forgiving them for having a different understanding than I have.

Forgiving people is harder than dealing with being disabled. I loved playing the organ, I started doing it in—oh my, has it really been that long? 1973. I can't, any more. I'm still trying to come to true peace with that.

But forgiving other people for not seeing that what I can still do has as much inherent value as what I can no longer do—especially when what I can do, is something that I can do and I'm the only one who can do it that well, and what I can't do, other people can also do at a perfectly good level of quality—that's hard.

You can't change someone else's level of consciousness. It's just not possible. (Heck, it's hard enough to change your own.) Why I insist upon frustrating myself in the attempt to do that, and then becoming angry at them for not evolving at my whim, I don't know.

Not many things, by comparison, make having M.S. seem easy. But somehow... this does.

Well, I don't have the choice as to whether or not to have M.S., and I don't have the choice as to whether or not to evolve. Actually, I do, but I don't recommend that path, either. Choose that road, and eventually, the choice to the contrary will be made for you.

Which, now that I mention it... may be precisely what's happening right now.

Thank you, M.S.

Really? Wow.

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?

Friday, September 30, 2011


Awright, I guess I gotta go where the rest of us MS bloggers eventually go... the land of symptoms.

There's no easy way to say this. You've heard the genteel turn of phrase, regarding having "urgency"?

Well, I don't have that. I have panic. Duplicity. Avoidance. Desperation. And courting containment failure.

Walking is bad enough, given that I sort of can't trust or believe my legs. I can barely trust or believe my bladder. And, since for whatever reason I've been running more properly hydrated than I have for a long time, I spend a lot of time second-guessing my bladder.

Oh well. At least the plumbing still basically works. The same way a bucket works... keep it upright, and the floor stays dry. Except for me, it's "keep seated," because standing and walking courts disaster.

At least I haven't had to bail out of my classroom for a mid-class-session emergency bathroom dash. I did have to do that a few times last year... I told the class, "I have to excuse myself briefly. I'll be back as soon as I can. I'm going to trust you guys to keep it together until I return. Because I promise you, if any ONE of you makes me regret trusting you... next time, they're coming with me."

Lots of laughs. And upon my return... absolutely nothing untoward had happened; all was well. (Whew!)

I can trust a room full of 14-year-olds better than I can trust my own bladder.

All things considered, that does have it's advantages. And it's funny. And neurological nonsense being what it is... funny, I'll take.

Monday, September 26, 2011

Oh, what we learn...

A very heavily loaded couple of days. Successful, but heavily loaded.

Sunday, for the first time in months (maybe even a year's worth of months) I did a Home Repair Project: replaced a light switch. You wouldn't think it'd be that tough, because I guess it was... I sacked out for at least a couple of hours, immediately afterwards. Then I did the dishes... and the standing up for as long as the dishes took, pretty much ate all of my ability to stand for the rest of the day. And night.

Today, four classes, a meeting, shopping at two stores that are so close together, they share walls—the walking around which took an unbelievably long time, the "just plain walking"—and a bunch of after-hours computer diddling. And at the end of the day, not even enough energy to have dinner, much less make it.

Should I be pleased that I was able to do "so much" today, after being unable to do nearly anything all summer? Yeah, probably...

If I wasn't so tired.

Damn, just living takes a lot of energy. Much less walking, like what it takes to go through evan a small store... the amount of energy, and time, that just walking takes, is just plain huge.

I used to be able to walk at race-walking speed. Now it takes me ten full minutes just to walk from my office, across one two-lane street, and get to my car.

Does it bother me, this not being able to walk the way I used to? I dunno... but I'm constantly surprised, if not dismayed, at how "not walking" has changed my life. And how much the simple act of walking means in day-to-day, hour-to-hour living.

The life with M.S. is full of surprises. We learn the most amazing things, don't we?