Tuesday, May 29, 2012

Wheelchair lessons

To my M.S.-accessorized companions on the Neurological Highway, who may be perhaps facing further accessorizing with a walker/transport chair/wheelchair... some musings on my travels with it/them last weekend.

I normally use a "translator," a walker/transport chair that's a walker (when I'm doing well) or a transport chair (when I'm not). As an experiment, at the Yale reunion I borrowed a standard push-it-with-your-arms big-wheel wheelchair, just to see what the differences in being relegated to a different device would be like. Your mileage may vary (as the saying goes), but for those of you who may find yourself needing to avail yourself of such devices, here's what I learned about the differences between them.

First, the translator in "walker mode" is vastly superior in locations that are only vaguely ADA'ed, or not-really-at-all ADA'ed. Some of the biggest impediments to my passage were one-to-two-inch "steps," sometimes as high as four to five inches. If you're still "walking" (if we can call it that), you can "step over" big lumpy things, and avoid divots/pot holes. In restaurants that haven't really left enough room between tables for wheelchairs, you can partially collapse the walker so it's wide enough to use but not as narrow as you'd "squish" it to fit into the back of a car, and you can thread your way through the tables. Of course, that doesn't work for anything in "wheelchair mode," but the translator at its widest is still is a little narrower than the push-it-yourself wheelchair—and width is a major inconvenience when you're trying to wend your way through a not-well-planned restaurant.

If you're stuck in transport chair/wheelchair mode, the ride is much smoother with the big wheels. The smaller wheels of the transport chair get stuck in, and stopped by, everything. Sidewalk-to-street wheelchair ramps are often very poorly executed, with huge gaps or lifts or gulches between the concrete of the sidewalk and the asphalt of the street, and the smaller wheels of the transport chair always get stuck. Always. The wheelchairs often have "step on it to pop a wheelie" pedals that enable a person pushing you to lift the front wheels over anything, and that's a great feature, but if you're by yourself, you obviously can't use them.

In both kinds of chairs, going backwards often works better. In any chair, that puts the larger wheels first, which often solves problems.

If you're wheeling yourself in a wheelchair, get gloves. Otherwise, your hands will get very dirty. Or scraped, or something else unpleasant.

And the motorized versions? I love them. I have one at school, I drive all over the place in it. But it's no good when the incline gets too steep (it really isn't designed to go "up hills"), they can get stuck in the mud and/or spin out, and more importantly: they're heavy. Nasty heavy. My translator is light and collapsible enough that my 14-year-old students can pick it up and toss it in the back of the truck. You can't just tuck one of those motorized suckers into the back seat of a car, or the back of a truck, you really need a device that attaches to the back of your vehicle that it rides on. They'll tell you that you can take it apart, and you can, but it's nasty inconvenient. You want convenience? You want a translator.

And speaking of off-roading: You want the translator in "walker" mode. Doesn't matter how bumpy the lawn (or whatever) is; as long as you can keep everything upright and on solid ground, you're fine. Big wheel chairs can sink into soft ground or otherwise get stuck; translator in walker mode, you can just lift up, reposition it, and keep going.

Don't use a wheelchair as a wheeled walker. My translator has bicycle-style brakes on its handles, and those are massively convenient; if you need to stop your forward motion for whatever reason, you can do it. And, if you're unloading it from your car and you want to make sure it doesn't get away from you (which it almost did, once, from me), you can. The big-wheel wheelchairs are not walkers. Something happens while you're "walker-ing" with it and you want it stop—you can't make it. It has brakes, but you can't reach them, and you're going to keep rolling forward until you hit something. Not good.

And in terms of what it "costs," energy-wise: Well, you're sure to get your cardio with the big-wheel wheelchair. Right now, I "walk" really crappy if I have to use shoes, but great in just stocking feet—the latter isn't always an option, especially on public streets covered in hot asphalt, mud, or medical waste—using shoes exhausts me very quickly. I went about as slowly wheelchairing myself as I did "walking," but that'd speed up if all I was doing was wheelchairing; practice makes perfect, as the saying goes. Even with no practice, I found myself tired but not significantly so after a day with the wheelchair. Using the translator as a walker, without shoes I can "walk" all day, but with shoes, I tire profoundly, and quickly.

The big-wheel wheelchairs have their advantages in specific situations. I like using them in museums; my wife and I look at things at completely different paces, so we can each look at things the way we each want to, and then she pushes me to the "next stop." They've got a wonderful turning radius—they spin in place, the transport chair can't. The ride is significantly smoother, they're much better when the roads/paths aren't really ADA'ed properly. But if you can walk at all, you want the translator.

Electric's the choice for distance and speed, but definitely not for off-roading! A good choice if you can leave it in the place you're going to use it daily, but if you want to transport it so it can transport you, you'll either need special equipment to facilitate that, or a very strong helper. And don't forget to keep it charged, and you may very well have to replace the battery more often than you like.

So that's that. The people who sell you this stuff will tell you certain things, medicos that prescribe them or teach their use will tell you other things, but you don't really understand them until you use them. By yourself. Without help.

And of course, my prayer for you is that you won't require these things daily... but I was very surprised by how easy it was to get used to them, and damn! They are wonderfully helpful. One can't wall-walk everywhere, convenient as that may at times be. And no matter what you may (or with luck, may not) need for transportation assistance... good luck!

Monday, May 28, 2012

Yale journeys, Yale epiphanies

To paraphrase Dr. Seuss, "Oh, the places I've gone..."

Last weekend, I went to my 30th Yale reunion. I spent four years there as an undergrad, one year there as an employee, and two more years as both an employee and a master's degree student. I've crawled, walked, and staggered all over this campus, and I know it very well. It's full of architectural marvels, many of them in a magnificent Gothic style.

But let me tell you, seeing it from a wheelchair puts an entirely new perspective, and dare I say a whole new angle, on everything. Everything seems ever so much taller. Really, really, much taller.

It was a huge adventure. The first time that—all by myself—I've taken an airplane, and crossed the country, since the onset of The Disease. No wife-provided "safety net." Just me. And although I did learn a lot of things—many of them marvelous, many of them not exactly welcome but necessary nonetheless—I made it.

Highlights pertinent to the M.S. journey...

Well, my classmates were unbelievably sympathetic and generous. They didn't just offer, they insisted, on pushing my wheelchair. A couple of them had learned how by helping out their fathers, one of whom was also an M.S.er. One particularly delightfully-skilled wheelchair pilot/navigator was unbelievably adept as missing road hazards and pseudo-ADA-isms, avoiding bumps, divots, and other navigational nasties. "I notice infrastructure," she said... and boy, was she ever good at it. Comes from her work with, and familiarity with, the Mary Whalen, I suppose... A ship that she described to me as "She has moxie." Well, if that's keeping this nautical wonder going, it certainly should be a worthy inspiration for me.

Another classmate, a wicked good lawyer, explained his concept of the magic words all of us M.S.ers eventually encounter at our workplaces: "reasonable accommodation." He says that even though that's the official legal term, it should really be (because it really means) "reasonable compromise." There's no working around things like an NFL quarterback tragically losing his throwing arm, but for things like "I can still do what I used to do, but not the way I used to do it"... That's where compromise comes in:  For example, the employer/supervisor might prefer that you should work at a specific desk in a specific office at a specific schedule, but if you can do precisely the same work at a different time and location, without any degradation in work-product output—and more importantly, making that change is precisely what makes it possible for you to maintain your work product at the same level that you used to produce when you were unfettered by M.S.—well, sucking up whatever discomfort they're suffering at you not working in their preferred location and time, a change which is precisely what enables you to keep working at your pre-disease levels and maintain your own satisfaction at still being able to work the way you always used to, diseased or not, is precisely what "compromise" means. And really, simply on a "human" level, if they don't like the change but as far as your output as an employee is concerned, the only difference it makes is that you can continue to create that output, they're the only ones who are suffering when that change is made, aren't they? Not a bad compromise, I'd say...

It's a pity when their unwillingness to make the very compromise that would makes your life more bearable. But that's another story.

And, for my "convenience," dear B-san (you remember from past posts, my dysfunctional bladder) has developed a new bad habit. Doesn't announce his need to be emptied with anything more than barely noticeable hints—and given his past history of duplicity, these "hints" are hardly anything that would make you think he actually meant that something needed doing—but in a matter of seconds, he can shift gears from might-as-well-be-silent to SCREAMING in panic, and then... for my convenience... leaking. Great, I think... the M.S. has stolen my ability to play the organ, to stand while I'm holding my Japanese bow, to stand before my class when I speak to them, but this? You're going for a pee joke? That's the best you can do?

There was much more that can be told of that weekend... Moments of unbelievable beauty, generosity, kindness, and the love that only long-time friends can hold for one another in their hearts... But I leave you with a final bit of photographic humor, courtesy of who knows what perpetrators (probably an undergraduate, it's the sort of thing we Yalies delight in doing). A very clear depiction of something that all of us M.S.ers learn all too quickly, especially those of us who have been "accessorized"...

People who don't travel our path, especially those who haven't been forced to travel that path in the vehicles we're forced to rely upon... they just don't understand what we have to deal with. They just... don't... get it.

And really, I promise you... if you'll forgive the turn of phrase, I just stumbled upon this. It was there, waiting for me.

If we didn't already know it, from our other experiences on the M.S. Highway... the Universe really does have the most amazing sense of humor, does it not?

Monday, May 21, 2012

It's over; and the hardest part of the day

It's over.

My last day as a teacher in the classroom, was today.

Hardly tumultuous, or thick with heavy emotion. Certainly from the students' point of view, all was normal... it's the last class with you. I have different classes next year, and different teachers. Everything changes. That's the way it is! Hardly worth even noticing, it's so normal... Things end. Things change. In the proper time, new things begin. That's the way the world works.

And they don't even need M.S. to teach them that. To them... it's just plain NORMAL.

Certainly, this M.S.er, can stand to pay very close attention to a 9th-grader's Zen-master-like understanding of what "taking life as it comes" really means.

But back to the final day of teaching... I had planned, and scheduled, for class today to be a "no pressure" day... even an "anti-pressure" day. Nothing due, all we did was watch cartoons. Some sections watched an episode of Denno Coil, some sections watched an episode of Ouran High School Host Club... and to bring everything full circle, I showed my last (ever?) section something that I had shown to the "Bad Movie Club" during the 80's: the inimitable Squeal Of Death.

And best of all, that last section... loved Squeal!

One student, after I told his class that I had enjoyed being with them very much, came up to me and shook my hand and thanked me for the year.

That was wonderful. He knows nothing about my "situation," or what the class means to me... it was all about what the class had meant to him, and how much he had enjoyed our time together.

It was wonderful.

My time with "the school" isn't over... I still have things to extract from my office, like my amp and speakers, a couple of boxes that have yet to be taken home; I have a couple of things that I need to ship that only made it to school (I brought them there because I used them there, for a musical or something like that) but need to be taken not home, but to Box 'N' Ship (or whatever it's called). One of the teachers wants my help with something, I need to make sure that The Right Stuff gets to The Right People, and there's one last farewell session with the Anime Club, and one last BIG teacher's meeting. And, of course, Commencement, on June 3, conducting and playing the organ—my 39th Commencement!

Depending on how much "trickling" of "final see-to-its" that are left, I may wander in and out of the place a bit in June... but "it," whatever "it" is, as far as classroom teaching is concerned... is over.

So... my last day as a classroom teacher. Forever. Or for now. Who knows? Like our M.S. symptoms, there's just no seeing the future, is there?

But I said farewell to my last class. Then I went to the dentist. Then to a Chinese pharmacy, to pick up some of my favorite throat drops, and the walking around the shopping plaza was simply horrible because I had to use my shoes rather than stocking feet (pavement was just too damned hot). Then I got Taiwanese sweet tea: Ozmanthus oolong, my favorite. And the most trying, taxing, painful part of the day, was walking around a shopping plaza not in stocking feet.

Hell of a "last day."

Who says that the Great Machine of the Universe doesn't have a sense of humor?

Sunday, May 20, 2012

Qi Gong, school, and dentists

Earlier today, a visit to my wonderful Qi Gong practitioner. An easy way of describing his work is "acupuncture without needles."

Here's a brief description of a typical visit... I tell him, "My legs are cold." He gently pushes a spot on my shoulders, waves his hands over my legs, and walks out of the room. Fifteen seconds later... my legs warm up.

He told me that his observation today was that, actually, I'm (just a little bit) better than I was the last time I saw him. Nowhere near "cured," of course, but... just a little bit... better. It was from an energy-worker's perspective... he talked about how energy actually went into my legs (unlike before), my legs never twitched (like before), a couple other from-an-energy-worker's perspective changes... but improvements, nonetheless.

He also said that every one of his M.S. patients is up, then down, then up, then down... Except me; me, I only get worse. Never better (today's micro-improvement doesn't count). I just get worse.

Well, I always was an outlier.

I'm seeing him again in two weeks, before I play the organ at a commencement. I always see him before that event; he always supercharges me wonderfully and gets me through a very challenging seven-minute processional.

But he also told me... like my other doctors have also told me... it's time to quit working full time. Good to do something to keep the mind active, of course, but full-time work? Time for that to end.

And so it will. Tomorrow is the last time that I have to get up to the "time for school" alarm. I have three classes; and I say farewell to my last (possibly "ever") class tomorrow, just a little before 1PM. That's going to be very strange, and possibly very moving.

And then... I go to the dentist. Hardly a momentous "farewell," is it?

M.S. isn't the only thing responsible for "comedy you can't write." Just like life... sigh. (giggle)

Saturday, May 19, 2012

The gifts of ... cartoons

Cartoons, teaching the art of saying goodbye.

This week's Young Justice featured some moving glimpses into the lives of our painted friends.

One character could not come to peace with himself, and was destroying himself by carrying around his attachment to his past.

Two characters had clearly given up "the way it always had been" and were obviously completely happy in their new lives.

Completely different approaches to dealing with "it's not supposed to be this way" and "we don't do that any more."

The costs of not giving up when you need to. The wonders of giving up when you need to, because that created a completely new life. And the special magic of one person who won't give up on the person they care for.

A twenty-minute cartoon, resonating very much with me right now, as I'm dealing with (or not dealing with, or fighting against) letting go of things that need to be released, whether I want to release them or not.

I've often said "life imitates art imitates life," but "art" hasn't often taken the form of "cartoons."

The entire universe has gifts it want to give you... if you're only willing to accept them.

Thursday, May 17, 2012


Closing down my association with my current workplace has been, and continues to be... interesting.

(Long... long... pause...)

Yeah. "Interesting."

Told a couple of students about ... "changes" ... that'd be occurring next year. One of them, I told that the last day of school was important for our club to meet, because the room we've been meeting in for the last few years was going to be Ms. So-and-so's room next year, 'cause she was teaching such-and-such a class (that this student had with me this year), and therefore we had to take our decorations off the walls. She took it as an ordinary matter: No big thing, these things happen, of course we'll take care of it, was  her reaction. (Whew! That was a relief.) Of course, when the taking down actually happens, and I give them the decorations, as a good-bye gift and a "let's keep the fires burning" wish... that'll be a different story.

One student actually came up to me at a completely different time of the day and said, "I heard you're retiring at the end of this year." He didn't seem too happy about it. I told him that "retirement" was because of age, my problem was medical: "I've got bad wiring," I explained. (Which, actually, isn't that untrue, is it?) But, I also told him, no matter what happened, if he needed any help with anything, ever, just ask and I'll be there. And my heart was quite warmed; clearly, he found that last bit very reassuring.

Saying farewells in the school context is an unusual business. When we were seniors in college, we wound up saying awkwardly to each other, things like "Have a nice ... life?" We really didn't know what to say... the whole "it's over" thing was thrust upon us: Yeah, it was the way of things, everybody graduates and that's the end of it, but many of us would have been perfectly happy to stay there, together, forever. When someone left not via graduation (like taking a year off or just dropping out), it's somehow ... unnatural.

From the adult's point of view, "natural" causes of departures from a school are retirement, childbearing, grad school, or a better job. "Wasting" diseases, like M.S., whose effects are evident but whose details are certainly never discussed with the kids (or even the other adults), or departures necessitated by let's-just-call-it "dissonance" with administrators (details of which are also not really discussed amongst the adults, and certainly never with students) are somehow "unnatural." Something's just not right with severing the bonds with the beloved members of the community who just kinda, have-ta, go... who just leave, for ostensibly "no good reason."

And those of us who are going don't like it either.

But I will say this... the experience of closing out one's relationship with a place that has been near and dear to your heart for a long time is...


Well, M.S. does teach us many things. Not all of which we wanted to learn. Yeah, eventually we admit "we needed to learn that," but... we may never actually like it. But it is always...


Tuesday, May 15, 2012

What I choose to carry

A (mostly) not-all-that-painful treatment at the MD/neurologist/acupuncturist. A very short, but to the point, dharma talk.

Oh, the poetry of the acupuncture-point names. Today's beautiful point names included "the Kiln Path," which is also known as "the Gate of Happiness," and one of my favorite points, "The Intermediary."

Coming down to the wire on the school year, and the end of my time as one of their full-time employees. Looking back over what have been turning into my "final days," they're beginning to remind me of the days leading up to The Diagnosis... Day upon day, month upon month, of knowing that "Something... isn't right." The pain of exploration—exploratory medical tests, including a myelogram (my acupuncturist's needles are smaller and hurt less, even when he sticks them in really nasty-but-necessary places). Getting The News. And slowly, so slowly, coming to terms with what The News actually means. And then really coming to terms with it.

And then realizing you hadn't—still haven't—really come to terms with It... what It really comprises, what It really means. It's like peeling an onion... take off one layer, and there's another layer underneath it. Which, itself, needs to be peeled. And so it is with the end of my time there...

Gradually coming to grips with The News... or, so I think. Finding that I'm not really accepting it and all that it means; again and again, finding new ways to rail against it, to rail against something that is completely beyond my power to change. And who's being harmed? The thing I'm railing against, in the silence of my inner railing? Even when I share my anger with a friend who's kind enough to listen, is that making any change in whatever it is that I'm pegging as the cause of my anguish?

Sound familiar? Especially for my friends and fellows on the M.S. Highway, does this sound familiar? Life is like M.S. is like life, ain't it? And isn't our "walk" with M.S. pointing to ways we should walk with ... life? With each other? And with ourselves?

"Walk." Again, I stumble upon the limitations of English turns of phrase, which have so many more meanings for people like us M.S.ers. (Like the phrase "stumble upon"—has different meaning for us, doesn't it?) Such as we find in Tiny Buddha's article on "Start the Climb: Take one purposeful step." Oh, my friends, for we wall-walkers and walker-walkers and non-walkers, "taking a step" has a very different context than that author thinks it does.

And yet, hobbled though we are by our malfunctioning wiring... we can still be purposeful, and intentional, and mindful, even in our troubled taking of whatever steps (or non-steps) that we can. A step taken with a pure heart and mind is a pure step, whether it involves a wall, or a cane, or a crutch, or a chair.

In the Five-Element world, the element Metal gives (among other things) the power to grieve. One of the points I got today, The Intermediary, is a Metal point. Grieving is not "railing against sorrow"... it is speaking truth to sorrow. And of sorrow.

When I finish this little missive, I'm going to go sit in the back yard. And speak with, and listen to, The Intermediary. It's interesting... simply "having M.S." doesn't weigh me down, as much as it inconveniences me. What weighs me down... is what I choose to carry.

Saturday, May 12, 2012

Improvement? Yeah, right...

Well, those moments of improvement were glorious, but sadly, not long-lived.

Started the day unloading the truck; the first of the "things coming home from the office for the last time" trips. After hauling things home yesterday afternoon, I had left stuff in the car for a planned unloading this morning. Accomplished the unloading, but not particularly well. Almost fell over, several times. Didn't, fortunately.

Next, a quick trip to the store to pick up a few supplies. Was able to do the "touch the walker" walking with no problem. Had fun, even!

Made it home with no problem. Had a horribly difficult time carrying that one, not particularly heavy, bag of groceries up the front stairs (took longer than usual just to ascend the stairs, insignificant-bag-weight notwithstanding) into the house. Then, the struggle began.

Did a load of laundry. What a wonderful day, I'm thinking, wouldn't it be energy efficient and all that to hang my shirts on the line? Well, that was nearly impossible. Somehow I managed to hang stuff on the line and not fall over, but barely. Great... operating a clothes line is now on my list of "you can't do that any more." Your Typical I-hate-doing-chores Guy might be perfectly happy to be unable to hang laundry on the line, but dammit! Hanging things in the sun to dry—I can't even do that without falling over! That just plain sucks.

Got ready to bake the quiche I had been planning for days to make for tonight's dinner. Ah, cooking the other day was so easy, this was gonna be no problem! Or so I thought. But when it came time to do the actual cooking... Improvement, still?

Nope. Quite the opposite. Couldn't do anything standing. Had to cut the onions from a seated position (when the cutting board isn't at do-it-from-a-chair height, that's less easy than it sounds). Cooked all the veggies from a seated position (fortunately, occasionally stirring the stuff in the pan didn't need to be done standing up). Had to crack, and then whip, the eggs from the same seated position. Fortunately, I had decided to whip the eggs in a tall, cylindrical pasta-cooking pot (a trick I learned from a Japanese chef, he used that instead of a bowl), which was very easy to just leave on the ground while I whipped the bejeesus out of the eggs. Did have to stand up to  pour the eggs into the pan and put the pan into the oven, but I succeeded. Quiche is done and cooling, and it looks good! I even managed to do all the cooking-the-quiche dishes from the same seated position, which I count as a victory, but...

There haven't been many times when I've wished for a big-wheel I-can-push-myself-around wheelchair. And never have I wished for one at home. Until today. This, by me, is not a victory.

Who knows? Tomorrow may be completely different.


The saying goes: The Lord giveth, and the Lord taketh away. Whoever invented that phrase probably wasn't thinking about M.S., but man... we M.S.ers know what that's all about. And we relearn it, every day.

Again. And again. And again.

Friday, May 11, 2012

Poof! You're enlightened!

Improvement? Really? Really? Improvement???


An experiment with the walker... don't lean on the handles. Walk, and not "push," but caress, the walker forward. Walk and move the walker forward with me, keeping the handles under my hands... but not supporting me.  It's there in case I stumble or suddenly need support (which happens from time to time), but although I still rely on the walker, and need the walker, I'm trying not to lean on the walker.

And... it's working, surprisingly often. I'm still not good for long distances, and I definitely still walk (no matter where) better without shoes; but simply to be walking with an upright posture—and more importantly, a more upright and more positive attitude—is definitely a step in the right direction. Several steps, really.

Cooking and doing the dishes. I've been able to do dishes without needing to pull out a supportive chair. I've been able to make dinner without pulling out a supportive chair. Now, if I make the quiche tomorrow that I'm hoping to make, we'll see how well this "cook without a chair" thing works. But still, there was a time not all that long ago when there was no way I'd be able to make dinner standing, and certainly no way I could even begin to do those dishes (sink is at completely the wrong height for chair-assisted dish-doing).

But... toasted tuna sandwiches, and tea, and when everything is said and done, not a single un-done dirty anything.

By me, this is improvement.

Now, I'm still tormented by my own millstones (things about the transition out of the workforce, things about the way things have come to pass), how is my disability bringing about these changes, how are things that are completely external to me bringing about these changes... and just as I'm writing this to you, I'm remembering something I told one of my students today, after she told me "I hope nobody listens to my podcast"—you know, the usual embarrassment with one's voice, one's writing, one's performance, things that are quite common with the young people (and with older ones, for that matter).

I said, "Now, let's imagine that they listen to your podcast. They don't like it, but they say nothing about that to anyone. So, imagining that this person dislikes your podcast... how does harm come to you? Does it? Are they harming you, or are you harming you?" She gives me a kinda sheepish "Yeah, I guess you're right" head nod, and I pat her on the arm, and smile, and say, "OK... so stop harming yourself. What's the point of that?"

A good question to ask myself, about the millstones I'm carrying around about this whole transition process. Really, why am I carrying those nasty, heavy things? Physician, heal thyself... right?

So many Zen stories center around a practitioner getting slapped in the head by someone (or something), and the story concludes "and he was enlightened." I think I could use one of those shock/enlightenment experiences.

Now, gentle reader, please don't track me down and slap me and say "Poof! You're enlightened!" Doesn't work that way, alas.

But thanks for the offer. It's the thought that counts.

Wednesday, May 9, 2012

The Million-dollar question

So this afternoon, I'm wondering... whence cometh the darkness that surrounds me? Exactly what is it that's getting me down?

The Disease? (Too bad I've only got "bold" and "italic," I'd love to set those two words in shaky type) Actually, by itself, no. Things malfunction. That's happened before, for other reasons. Some of it was bound to happen, anyway... human condition, behold all flesh is as the grass, and all that. Sucks, but it happens, and the older you get, the easier it is (usually) to deal with "age," because the older you get, the more experience you get dealing with "sucks, but it happens," in all its forms.

Loss of the ability to manifest things in the world. This, I think, is what's hardest to take. It's that I can't "do" things any more.

I used to do woodworking. It's ok (sort of) to "not have the time," certainly ok if the reason you don't have the time is that you're having fun doing something else... It's ok to have decided "I don't do that any more," but to be unable to do it? To not be able to lift wood onto the bench or the tools, to control it on the table saw, to stand/walk around the tools while they're in operation and operate them safely? I used to build cabinetry. Shelving. Tables. Sets for the high school... I single-handedly built, and scenic-painted, a kitchen as the set for Ibsen's play "Ghosts" in the school's black-box theater. (Well, it's "realism," how much more "real" do you get than a kitchen?) Lord knows there are things in the house that need fixing... but to have woodworking and construction of all kinds removed from my list of "things I can do?" That's hard.

I used to do gardening. I redid several areas of the front yard, I had added some nice granite stones to the rose bed, I had started planting all sorts of camellias (even had created a "formal section" of plants that have "formal" flowers. I regularly grew all sorts of edible goodies—tomatoes, strawberries, unusual seeds like the "black cumin" used in Ethiopian cooking. Now, I can barely water plants in pots on the back porch, and I'm not sure I can manage to deal with the hose simply to water in the front yard. Again, caring for the plants I love has been taken off my list of "things I can do."

Let's not even talk about kyudo. Tote-renshu, barehanded practice, no problem. The bow? Well, I'm only now brave enough to try to draw it again, but to do it standing? The way you're "supposed" to do it? Not a chance.

A perfect storm of other people's retirement. I used to write tons of music for the Caltech theater program. Three shows a year sometimes, always of wildly different styles... and always one Shakespeare play (which was itself always wildly different from previous shows)—for example, "Spring Comes to Arden" for As You Like It, or "Banquo's Ghost" for Macbeth. I even produced a CD of my work with them, and even got it up on iTunes. But alas, I don't do it any more; the director retired, her replacement has his own style, his own ideas about what kinds of plays to produce; he doesn't need me.

I used to write tons of music for a conductor in Orange County. Sometimes I'd write for his church, which on most Sundays used a big brass ensemble, and at least twice a year did major programs with a fifty-piece orchestra; often I'd play percussion or drum set (or both) in whatever group was performing; very often I'd play the organ, and also very often I'd do both (or all three) during the same show. Produced a CD of my work with them, and even got it up on  iTunes. Sometimes I'd write for his college chorus—for example, this setting of "Hail Gladsome Light" (in which you can hear yours truly playing the cymbal crashes—something else I can't do from a standing position any more). Well, this conductor retired too. His replacement was interested in completely different kinds of music, nothing nearly as "classical" as his predecessor; he doesn't need me.

I know that not being needed by people who are interested in things that are different than what I do has nothing to do with "the quality of me." (Took me a while, a painful while, to get there, but I think that's where I'm living right now.) But the disappearance of opportunity... that's hard to take.

Could I still write music like that? Of course. Could I get it performed? Well... I dunno, but certainly not as easily as it once was. Am I motivated to write all sorts of music that'll never be heard, just for the joy of writing it? Ah... That's a very interesting question. And the answer is... no. Not now, at least. Is it because of The Disease? Possibly... but also possibly not. Like so many things M.S.-ical, there may be no knowing the definite answer to that.

A perfect storm at my current employer. I think it's safe to say that we've... grown apart. People change, organizations change, what used to be an at least reasonable fit isn't a fit any more, and that chapter of the story is at an end. Again, I know that not being needed by people who are interested in things that are different than what I offer has nothing to do with the "quality of me." But here it is, another major change, much of it due to The Disease, but much of it also due simply to the vicissitudes of life.

So we see a pattern, here: perfect storm upon perfect storm. At the center of the storm—the disappearance of opportunity. With the disappearance of opportunity has also come the absence of energy to create new beginnings; and because of The Disease, I don't have the energy to seek or create opportunity—I don't even have the physical ability to do simple things that'd give me sunshine and fresh air, like watering the garden.

Now, here's the million-dollar question... so, all this stuff has ended, does that mean I've got the freedom to make a Great New Start? Chronologically, perhaps, but energy to make that new start?

Alas... no. I've got no gumption, no inspiration, no motivation, no nothing. Frankly, I'll be very, very grateful to pack it in and put my major efforts (what few may be available) into recovery. And given my current M.S.-"inspired" state, I think that's actually a very wise thing to do. I look at employment "opportunity" after opportunity, and all I see are lists of things I can't do. Things that I know how to do, yes, but things that I just plain can't, thank you very much, M.S. Hardly a motivation builder, that.

Is this enforced sidelining another gift of M.S.? Being forced to withdraw from the world, and do nothing but seek whatever Truth can only be found by having no other choice but to go within?

That... is the million-dollar question, isn't it?

Tuesday, May 8, 2012

Journeys to Urinetown

Today was my weekly examination/treatment/dharma talk from my MD/neurologist/acupuncturist. No painful or at-a-spectacular-spot points, I'm happy to report. A very profound treatment, though, and shortly after you and I conclude our chat, gentle reader, I'm packing it in, because it was a very profound treatment.

Our neurological discussion was very simple. I told him, this is misbehaving, and this does this when I don't want it to, and this isn't failing but it's hardly working the way I wish it would... the usual list of mild yet nastily aggrieving malfunctions.

His official, professional assessment: Yeah, that stuff happens.

He never used the "N" word ("normal") but the basic gist of his replies was that what I reported to him was hardly unexpected or uncommon; so I guess it pretty much passes for "normal," given my situation.

And somehow, I found that ... gently reassuring.

Nothing was a sign of "things taking a turn for the worse." Actually, things working as well as they are (even if they're not working "well" by most standards) is itself at least a little reassuring. Yeah, my bladder has its issues, but at least for the most part it works as designed; he's had patients that need mechanical assistance to empty their bladders, because they can't empty themselves without help. Now, let me hasten to add that I don't find other people "suffering more than I am" to be in itself in the least reassuring; but "still mostly able to execute its most important function, to store and release on cue" to be... not so bad, really, all things considered.

At least as of this writing, I can't play musical instruments that I've played all of my life. I can't make music that has always been very, very precious to me.

But, I can pee and—even more importantly—not pee, pretty much on my own terms. Most of the time, at least.

Hell of a cry of victory. "I can pee! And not pee! On my own terms! (softer) Mostly..." You'd think I was shilling the musical Urinetown...

I can no longer lift people's hearts by playing the organ—not the way I used to, at least. But at least I won't make them slip on my puddles.

Not exactly what I'd call a "fair trade," but you take what you can get on the M.S. Highway. And with luck, you won't leave a trail as you travel it.

As I've often said: M.S. is a never-ending source of humor that you can't write. Our M.S.-accessorized bodies don't always want to do what we ask of them... but we can always, always, laugh.

Monday, May 7, 2012

I still laugh

So, for the first time in... oh my, it's FOUR years... I took out my sewing machine and tried to run a seam down something. Something's not quite right in how it's set up, maybe it's mis-threaded, it doesn't quite sew correctly... Maybe it needs to be run by the shop for regular maintenance (which it hasn't been for over ten years), but the whole procedure was full of surprises.

Good surprise: I was afraid that I wouldn't have enough control in my foot to operate the sewing machine's pedal. I did! I was able to run the machine very easily, that was probably the best part of the whole adventure.

Not as good surprise: I dropped the bobbin, reached down to pick it up, and slid spectacularly, and quite noisily, off the chair. A bit of an "ouch" moment, hitting the ground that way, but no damage to me or anything else.

And the worst surprise (which, honestly, wasn't that surprising, and certainly not as much as a "surprise" as slipping off the chair and hitting the floor): I had a horrible time seeing things, like the eye of the needle when I tried to thread it. Tried two pairs of glasses, the computer glasses and the(progressive) bifocals. Neither worked well or comfortably. There didn't seem to be any way I could actually see, clearly or comfortably, what was going on.

Was it The Disease? Hell no. What was it?


Almost makes one prefer the malfunctions of The Disease. Or not. But still, one tries so hard to live with, to work around, to counteract, the ravages of The Disease... but age? No avoiding that.

But, I'm happy to say, even when faced with the ravages of Age instead of The Disease...

I still laugh.

Friday, May 4, 2012

Gentle goodbyes

At the end of this school year--oh my, that's the end of this month-- I'm leaving the office that has been my home for the last 12 years. I'm leaving the school that has been my home for... oh my... I've been on that campus for 26 years, and somehow attached to it even while I was elsewhere, for another 17.

Why? Oh, that's a story... let's just say: Things change. And as travelers on the M.S. Highway... oh, we know all about that.

I spent the day (when I wasn't teaching) going through Stuff, collecting things that are and always have been mine (like the picture of me marching in the Yale Band at Bush I's inaugural parade), photos that I took of sets I designed, thank-you notes and other gifts from students... and tagging things that are to stay behind, with the names of their new owners. For example, the spare HPL bulbs and gobos go to the drama department, the C++ books go to the math department, the computer gear, some of it of quite entertaining age (like the 56K modem) goes to the tech department.

It was a day of very gentle goodbyes. Some laughter. Happiness at gifts others received, like the big smile I got in the library by giving them a nice handful of rulers (something they use a lot of). Happiness at my own treasures thought lost being rediscovered.

I'm just about at the end of the Big Cleaning. The physically hardest part will be lugging the boxes of memorabilia into my truck and then--the really hard part--finding somewhere to put them in the garage.

But I'll manage. Traveling the M.S. Highway definitely does teach you how to "manage."

I hope the "happy buzz" lasts, while I traverse the Final Days of the year and navigate the waters of Dealing With The Insurance Companies. (ugh)

Well, I'm definitely ready to cash in on the "learning how to manage" gift of M.S. with that one.

It's easier to deal with a trick bladder than an insurance company.

I find humor so easily in my own disease process... I hope I can find, and keep laughing at, the humor in those conversations.

Wednesday, May 2, 2012

Victory in a bowl of soup

Victory, this evening!

Went shopping (OK, I did use the drive-it cart for the shopping itself), prepped the ingredients (Chinese cooking takes lots of chopping), cooked the dinner—velvet corn and crabmeat soup, one of my cold-weather all-time favorites—and washed all the dishes. Standing. Without sitting down and working from a chair—I stood up through the whole thing, just like I used to... in the Before Time, prior to The Diagnosis and all that accompanied it.

A victory. Definitely—a victory. Yeah, there was some careening and gabbing for purchases, but by and large, it was completely normal, by the standards of "normal" in the Before Time.

And the soup was good! Wife and I both had seconds and there's a portion waiting for her lunch tomorrow!

A trifecta.

Y'know, we spend so much time on this highway tracking bladder dysfunctions, spasticity, depression, life-changes to the body, mind, and spirit; and when all you do is make and enjoy dinner, and wash the dishes afterwards, and nothing unusual/worth reporting happens...

That's unusual. And worth reporting.

Tuesday, May 1, 2012

Metaphors; syntony; radiance

Happy Beltane!

The first day of May. The festival of Beltane. Normally, a day of bright lights and bright colors. But here in "sunny" southern California, it's cloudy, gray, and wet. But oh, are the plants happy. I had tomatoes, basil, and shiso planted in the front yard, and you can positively see our little green friends smiling in this gentle, moist, weather.

Thankfully, on this festival of fire, I got my own Fire reconnected during today's acupuncturing. (Huge relief.)

And on FX, of all things, they're running the film Avatar, about (among many things) a guy who has no control over his legs finding a completely new, and unencumbered by disability, life.

A day of metaphors of contrast: A day of a festival of light and fire, is cool, dark, and rainy; and yet, the plants (which are totally in syntony with Nature—they are Nature, after all) are ... dare I say in the context of the weather, "radiantly"... happy.

And Avatar? It's just a story, I know... but still, a story about a cripple finding liberation; at the final moments, he is transformed by being in complete syntony with Nature. By reaping the radiant benevolence of that Nature.

Radiance takes many forms...

May you feel the radiant bright fire of this very special Beltane.