Responses

A too-too-long day. Concluded by a not-that-necessary and, in my overfilled schedule, intrusive meeting, at which some work was dumped in my lap that there was really no reason that I be the one tasked to do it, except that the dump-er didn't feel like doing it.

And then I was told that I had to be the one who had to send the e-mail saying that (even though he was the one who had promised my delivering on a deadline without checking my schedule to see if I was even available) we'd miss the deadline, we'd submit The Thing later. And oh yeah, we expect that the recipient wouldn't be looking at it until at least the day after the promised-but-unattainable deadline, if not later.

Greeting me when I finally got home (and sent said e-mail) was this lovely haiku in Judy's blog:

It may seem a stretch

to give when one feels used up.

It replenishes.

I'm really, really trying to embody the truth in that. I'm not doing so well... what I really want to do is tell The Guy who wants me to do work that is his, that isn't mine, that Thursday and Friday are my most taxing days of the week and maybe the guy with MS who "doesn't feel like dealing with this" has a slightly different reason for not wanting to deal with it than you do, and maybe you can do your own damned work, especially considering that (on this particular project) I've already done vastly greater amounts of work than you have?

But fortunately, I'm not so exhausted as to think that'd do any good. Perhaps tomorrow, I can contemplate other options, to give and thus be replenished. Momentarily satisfying that venting my spleen might be.

But, as Professor Farnsworth of Futurama said, "A man can dream."

Liberation paradox

My repaired, transformed truck is finally ready for me to use. Well, almost ready, they didn't quite fix everything, something not related to the repairs got un-repaired (easy to fix, once you get at the connector that clearly has been mis=connected; something else needs to be looked into... but it's very easy to drive, now that it's automatic rather than manual.

So I'm so pleased to have my truck and my vehicular independence, and I think, Finally... now, if I want to go to the store and get some chips or a snack or dinner or anything... finally, I can.

And then I think, But then I'll have to walk around the store.

And walking... that's not good. It's certainly not fun. Or easy. Or pleasant.

So, I can get there, but I don't want to do what needs doing (walking around the store) once I get there.

So, being free to go anywhere, any time I want... is freedom to suffer.

Oh well.

I am, though, still going to get hand controls. Truck is much easier to drive now, and I can still operate it safely and successfully, but the nerves in my legs are sending so much "static" that it's only a matter of time before foot-operated controls won't be accessible.

And some stores have those cute little electric goodies you can drive around the store in... I've used them twice now, and they're a godsend.

Blessings come in very interesting flavors.

Illusions of wellness

After sharing my last blog post with you, some very nice people have shared with me some similar experiences.

Judy, who blogs in haiku, expresses it beautifully:

I surface for air
and pretend I am okay.
Others believe me.

I talked to another MSer today, who said, "People tell me that I 'look so healthy!' I just got a new MRI. I've got spots everywhere! I am NOT healthy!"

Daily, I have to interact with a lot of people, who are of a wide range of age levels, and who are of a wide range of ability to... let's be honest, to deal with weird shit. I try to keep my spirits up and positive for them. For me also, yes, of course; but also for them. Why should they suffer if I'm suffering? And really, my suffering is so specific, they couldn't help me if they tried. And frankly, I enjoy smiling and laughing. Especially laughing right in the face of The Disease. That's fun. And satisfying.

But, it was just as I suspected: it's only now that I'm in the wheelchair that people really understand that no, they need to cut me some slack when I ask for it. I don't ask for it much, I barely ask for it at all; but when I do, it's because I need it. And I have to say, the tension level has dropped somewhat, in my dealings with my workplace. I will admit, I'm a lot calmer now than I used to be (a lot of causes, but I must admit that The Disease is one of them), and of course (dare I say, DUH) the calmness really helps. But the wheelchair has made people take me and my predicament more seriously.

I'm sorry that's what it took to get my friends (air quotes? "Friends?" At least, my co-workers) to be more respectful of my needs.

I'm sorry that's what it takes for ANYONE to be more respectful of someone else's needs. That to be respected, people need to be VISIBLY, physically impaired. That simply being emotionally impaired, being spiritually in need, somehow isn't enough. You can have a broken heart or a broken spirit, but you won't get any slack unless they see a broken leg.

Another interesting gift of MS... this particular lesson.

Interesting consequences

Details are deleted to protect the... well, for now, let's call them innocent. And they don't really matter, you'll get the idea pretty quickly.

I got an e-mail today from [family member] expressing disappointment and, actually, rage, that I had neglected to do [something] for [another family member], and approximating the words of the e-mail, if I was as assiduous in expressing generosity towards my family as I was towards my students, well, maybe then I'd deserve to live.

Or something like that.

So, I sent back actually quite a calm reply. I said that I understood the sentiment, but let me tell you what's been going on on my end.

And then I described The Current Situation, in detail. I can barely walk. I now use a motorized wheelchair at school and a walker (when I can walk) that converts to a wheelchair (when I can't). I don't have a car 'cause it's in the shop, replacing the manual transmission that I can no longer control because I can no longer control my left foot. And even then, the way the other foot is "working," I may not be able to drive it until I get some hand controls installed. Our other car has been in the shop for quite some time too, we only get it out on furlough for a drive to the doctor on Wednesday. Did I mention that I had to get new glasses to use computers, because my eyes don't like to focus on the same spot at the same time, without optical assistance? And quite a few more points, as to why I'm basically trapped either at work or at home, and just "popping out to do x, y, or z" simply isn't possible.

I wonder what [family member] will think, when that note arrives. I wasn't cruel or vindictive, but I pulled no punches; because, after all, neither did [family member].

I haven't made a practice of contacting family to tell them about how things no longer work particularly well. Why depress them? Of course, since they thought everything was fine, it's understandable how they might ascribe "not doing things" to lassitude, which (I gotta admit) I've got down to a science.

But by not dowsing them in depression, I'm now dowsed in depression, having to deal with [family member's] anger that's based, at least in part, upon misinterpretation of current situation, caused simply by ignorance.

So, in being nice to them, I somehow enabled them to misunderstand and lash out at me.

Great. So... instead, I should make them suffer so I don't have to suffer?

I refuse to believe that's how it works.

But, like all things MS, it is kinda funny. Darkly funny, as ever.. but still, kinda funny.

Fairness

Hmm, let's see... quick status update: Attitude, great. Energy, varies. Walking, awful.

I had to use one of those little motorized carts at the supermarket the other day. It was fun, the most fun I've had in a market in weeks (months?) because there was no suffering, struggling on my feet from aisle to aisle. Getting the goods into the car, and then from the car to the house... thank God for my wife. It'd probably have taken me at least an hour to do it myself.

I did the dishes this morning, and had to sit down to rest twice during the process; the first time I had to take a break, I was quite literally bent double as I hobbled to the chair to sit down and rest.

As I'm watching my locomotor (and other motor) abilities drizzling away, I'm thinking... now, which of us will this not happen to? We're all on the same road, on which we watch things we used to do float away on the river of memory... we just walk it (or hobble it, or wheel it) on our own schedule.

In one particularly tenderly-told story, Neil Gaiman's character Death comes to "collect" some obscure sort-of-superhuman character who had been given an unusually long life: several hundred year's worth. He protests when she comes to get him, saying that it wasn't fair, he was supposed to have more time.

"It is fair," she told him. "You got precisely what everyone else gets."

"A lifetime."

So, my walking time may be ending (for now, at least; MS being what MS is, it might--or might not--come back, who knows?), but I certainly don't feel cheated, or anything like that. After all, I get what everyone gets. You get to use it... for a while. And then it goes, when it goes.

And boy, I really did enjoy it.

But frankly, I got enough to do right now, keeping myself upright when I do walk. I have not the time, energy, or interest in bemoaning my loss.

And that is a very interesting gift of MS.

Report card

I saw my MD / neurologist / acupuncturist today; the usual weekly appointment.

We had a nice talk, as always; much of the appointment is usually dedicated to what some people would call a "dharma talk;" sometimes I give him orchestration advice (we have a wonderful mutual-support relationship).

He was very pleased. He said that everything about me was just wonderful. Attitude, approach to The Disease and what it's putting me through, acceptance of The Disease and the life I'm leading with it... everything was good.

Except my legs. Which are doing very, very poorly.

Oh well. Quality of life, that's all anyone can have (MS or not) and having that, I'm happy.

We talked about my weight loss (I'm down to under 160, if I can trust the bathroom scale), that it was OK if I was OK with it; talked about proper hydration (I need to drink a lot more water, even if it does mean more bathroom trips... oh well, just another thing to get used to, and people who are properly hydrated, MS or not, need to make plenty of bathroom trips).

I asked him, "So, about my legs? What can I do for them beyond... 'do what you can'?"

He said "That's pretty much it."

Well, if I do that... I'm doing fine.

And really, in the greater scheme of things, if you do what you can... MS or not, by definition, you're doing what you can.

And if you really are doing what you can... you're doing fine.

Denial has MANY flavors

The common image of denial is a brute-force collision with the easily observable: "That didn't just happen!" "That's not true!"

Unwillingness to confront is another well-understood version of denial: "I don't want to deal with that!" "Maybe if I ignore it, it'll go away."

Currently, I'm dealing with a much quieter, seemingly noble version: "Dammit, I don't want to use the wheelchair, I want to walk there myself."... Even when evidence suggests that "walking there myself" isn't doing me any good; that it might be a bad idea, not a strength- or (God forbid) character-building one.

And the question I'm starting to feel tugging at my sleeve is, "Why are you fighting like this?"

So I drive the wheelchair into the bathroom instead of parking it outside and walking in. So I have my friend pick me up and drop me off in front of the school instead of parking across the street and then struggling across, almost making it across before the signal changes. Which, in that neighborhood, might not be that good an idea, the drivers in that part of the world aren't at all pedestrian-friendly (or even pedestrian-aware).

Another friend told me today, "You're not crossing the street any more. When you get your car out of the shop, park it near the driveway, and I'll park it for you."

He can tell how much trouble I'm having crossing the street... why can't I--who's actually the one living through said problems?

Denial is an interesting beast. Subtle denial is the most invidious.

Why am I fighting?

Honestly, I don't know.

Cost; pride; listening

I went to LA's Chinatown today, to have lunch with some college friends. After lunch, we went to one of the big markets to get some tea.

Except it was three blocks away from the lunch restaurant.

I don't know why, but when the conversation drifted to "Shall we go?" I said, "Yes... if you push me."

And I was glad that I did. I was wheeled three blocks, by the unbelievably generous (in both spirit and strength) husband of one of our college friends. And it was a good thing that I had asked for help, because I never would have made it that far, walking.

Later that afternoon, my wife and I went to a local market that we had never visited before... and should have, because it was wonderful. (And we'll be doing as much shopping there as we can, in the future.) I didn't ask her to push me around, I walked around it (using my walker).

And that cost me more than being pushed three blocks through Chinatown in the midday sun.

At the market, I was chatting with the lady in front of us in line, about wanting to use the rollator as a walker rather than a wheelchair, and she said, "Pride never helps. Pride only hurts."

And yeah, I don't want to ask my wife to push me around because I don't want to impose upon her any more than I (and The Disease) already do, and I hadn't thought of my "dammit, I want to walk" sentiments as pride, exactly, but...

When words with that directness and clarity simply arrive in your lap... the Universe is speaking to you.

When the Universe speaks to you... best you should listen.

So... best I should listen.

First day

First day of school, today. Taught one class, said hello to some of my student friends, though not as many as I'd have liked to, spent most of the day in my cave, fighting with technology.

Didn't really "reconnect" to the institution. I teach lots of classes tomorrow, with barely any time available to farkel around with the machinery, so... it should be more fun.

Kids asked what happened, why I had the wheelchair. "I've got bad wiring," I told them. "Neurological bullshit." Which, y'know, really is 100% true.

They took it really well. (Helped that I smiled and joked a lot when I told them.) It's an electric wheelchair, controlled by a joystick; I called it "Playing a video game, except with real consequences." Everybody laughed at that.

Walking is a lot of trouble. My first thoughts were that I could drive the chair to the restroom and then walk in... only took a couple of times to show me that no, I'm driving in, and probably driving in to the handicapped stall. A tiny bit weird, this particular change, but it doesn't hurt. (As much as falling would, at least.) We'll see how well the walking goes tomorrow when I have to do it in front of the class.

The whole "we're back to school" really hasn't hit me, yet. We'll see how I feel after six periods of instructing 9th graders, tomorrow.

Which, I hope, I can make it through.

So... tomorrow...

The summer is over. A summer of self-sustaining depletion, disappointment, wishes not fulfilled, hopes and goals not achieved; a summer of "peak experience," of blissful, blessed clarity, of liberation... summer is over.

Tomorrow is not exactly the "first" day of school, it's sort of a "day Zero," where the kids return to get their books, new kids get shown around campus and figure out how to open their lockers, new friends start to be made, there's a party. A fun day. At least, that's the idea.

My walking is going south, fast. One of my knees likes to hyperextend backwards and lock, and that makes me (almost) fall... to come too close to "actually fall." So, I'll be spending most of the day, if not seated in my classroom, seated in a motorized wheelchair. One of my projects tomorrow is to figure out how to get into and out of my classroom, and how much time it'll take to make a bathroom "run" (not exactly the most apropos term, but you know what I mean).

This is the high school I went to. I was there from 1970 to 1978, teaching from '85 to '90, teaching again from 2000 to this year, 2010. And that's not even counting the stuff I did with them when I wasn't there full time. Twenty three years... and I'm fifty, this year. Nearly half my life, I've been there. And now I'm there in a wheelchair.

And I don't feel weird, or strange, or anything, because of the chair. Logistically, I wonder how I'm going to do certain things, but emotionally... it's not even on the radar. Frankly, I'm grateful for the device, because walking is such an unpleasant task, nowadays. The last time I was trundling around in the chair, it made me ... happy.

As my doctor said one day, in an homage to the Grateful Dead, "What a long, strange trip it is."

Wishes (be careful)

One of the things I used to say to myself--no: to others--shortly after The Diagnosis, to reassure me (them) about the world of possibilities that still stretch before me, was

"As a composer, as a writer: as long as I can still use the computer or a pencil and paper, I'm completely unaffected. But a conductor, in a wheelchair? That, I can exploit."

I still think that's true. Very true. All of it.

But, today... today, now I own a wheelchair. A rollator that doubles as a transport chair, not a big-wheel-pilot-yourself wheelchair, but... I own a wheelchair.

And really, I didn't really "wish" for it. Really, I didn't.

But still... be careful, formal wish or no, what you say to The Universe.

You never know when it may be listening.

Or, as one of my Science of Mind friend's T-shirts said:

Thoughts become things. Make them good ones.

Wheeled surprises

Well, my walking is going south fast; "circling the bowl," as the saying goes.

Somehow, it's not bothering me. It just is. It's certainly interesting, the challenge that it provides, and I don't mind walking around my house or around a small room, but "getting around in the world" is getting more and more unpleasant.

Yesterday, I got to use a powered wheelchair at school. (One of our faculty's father passed away recently, and he generously brought his dad's powered chair to school, so that people like me could use it.)

Honestly, I was expecting some sort of emotional weirdness. "I've chosen to use a wheelchair. I need to use a wheelchair. I just turned fifty, and I'm reaching for a wheelchair. Because I'm suffering a lot, trying to stay out of the wheelchair."

But what I felt when I sat in it, and drove it around campus, was... joy.

I had a wonderful time. I was no longer suffering, painfully slogging across campus, craving--craving!--a wheelchair.

I had so much more energy yesterday than I did the previous, chairless day.

Many details need to be worked out... for emergency dashes to the bathroom, do I brave the stairs for the closer facility, or take the chair (which will take much longer than even my slow on-foot pace, since it'll require the elevator)? For non-emergency between-class dashes to the bathroom, will it be stairs or chairs?

But I don't feel trapped by the chair, I feel liberated by it. I just got a huge gift of energy that I can spend on my students rather than on fighting gravity.

What will the students think of it? They probably won't care, the ones who really care about me, we'll laugh about it. After a few "Mrs. Claridge" jokes, it'll just become part of daily life, and so many kids are accessorized throughout the year by crutches and the occasional wheelchair, I'll just blend in. And the kids are more resilient than any of us "adults" are, anyway...

We could learn from them. We should learn from them. In more ways than we usually realize.