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.

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.

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.

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.

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.

Practice

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.

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.

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.

Questions

Man.

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?

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.

Warm/cold/better/worse

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?

Triumph

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.

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."

"Now."

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.

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.