Tuesday, August 31, 2010

Walkers + insurance co. = comedy!

We went shopping today for a rollator-transport wheelchair combo. (Actually had my wife "test drive" one, pushing me in the wheelchair. A first, probably not the last, but I think we both weathered the experience, and what it portends, reasonably well.)

The folks at the store were absolutely wonderful. We had so much fun talking to them! They were so nice!

And oh, the stories they told about working with insurance companies! Howls of derisive laughter!

For example, this combination device that I'm going to obtain, a "rollator" that can turn into a wheelchair that someone can push... well, it seems, the insurance companies usually won't pay for those.

No charge code for them, you see. Takes many years for the insurance companies to figure out what number to assign to a device, and these things have been out for what, only like four years now? Not nearly long enough for the insurance companies to figure out whether they're any good and worth paying for, much less how to classify them in their Sacred Charge Code systems. So, this one device that replaces two pieces of equipment, that is fantastically convenient both for me and for someone assisting me, that is light enough for one of my high-school students to fold up and tuck into the back seat of a car, that's easy to push and comfortable to sit in and will make a huge difference to my independence and happiness... they probably won't reimburse me for it because they can't figure out what number to file it under.

And it's insurance systems like this that our lawmakers are fighting to maintain, instead of permitting us to suffer under the evils of a single-payer system.

Some jokes write themselves... but even then, they aren't really the right kind of funny.

Monday, August 30, 2010

Four out of five

Well, let's see... physical therapy today, assessed some of my leg muscles as "four out of five, five being normal." When you drop to "three," you need leg braces. So, at four, on the border between "needs no help" and "needs a lot of help," it's no wonder I don't enjoy walking. At all.

The good news is that I can still walk. Sort of. Well, in the MS world, you take what you can get, right?

We're going shopping tomorrow for a rolling walker that can also convert to a "helper pushes you" wheel chair. God only knows if the insurance company will pay for it, or how many people who don't know me and who'll never meet me will need to be convinced that I actually need locomotion assistance in order to live what passes for a "normal" life, nowadays. (Actually, except for the walking and the fatigue, it's a pretty nice life, all in all.)

But... one battle at a time. Another lesson of MS.

Saturday, August 28, 2010

Supermarket tribulations

So, partially because "I needed to get stuff" and partially because "#$#@$dammit, I'm going to go to the supermarket, myself, and do this, myself, just to prove that I still can," I hit the supermarket this morning to clear a short shopping list.

It was amazing how hard it was. Even with the rolling walker.

And it took forever.

Major-chain supermarket taxonomy... some "clever" internal department has tracked shoppers, and through some mysterious computation decided how to shelve their products, and how to label the aisles. I wouldn't be surprised if one of the elements in said computation was to encourage people to roam, so that their eyes are cast across lots o' products and thus generate lots o' sales.

I came to the store with a list of what, six? Eight items? I had to traverse the entire store, maybe forty yards long, at least four times. Going up and down aisles, scanning the shelves, looking for the six things I wanted because I couldn't tell where I might find them. I finally ran into someone who worked there (wasn't easy) and even after I found some assistance, I had to go from one end of the store to the other, twice. (Because although she was extremely nice and helpful, she didn't know where to find what I was looking for, either.)

Trader Joe's, a southern-California staple supermarket, is even worse. They rearrange the store. Weekly, it seems.

I'm sure nobody from Joe's or Vons is reading this, but just so's I can get it off my chest...

Have pity on those of us who can't walk so good. You're not creating sales by making us walk around and look at more and more products. You're eliminating sales.

Whole Foods is notoriously expensive. Purposelessly so, it seems sometimes. But their store--and their parking lot--is easily navigable. I can find things in Whole Foods immediately. Product doesn't wander overnight from place to place; if it was in place X last week, it's in the same place this week. So, Joe's and Vons, even though it costs me more to go to Whole Foods, I'll probably be shopping there more... because shopping there doesn't make me walk until it hurts.

Something to remember, for all of us who design systems... yeah, the system (whatever it does) may work beautifully for you, the designer or the enterprise who uses it, but if it makes the people it's inflicted upon suffer...

You suck. Go back to the drawing board. Try again; this time, more compassion, please.

Wednesday, August 25, 2010


So I'm on this diet: No dairy (doc expresses that as "ABSOLUTELY no dairy," which means no butter, no cheese, no nothing), no sugar, no raw leafy greens.

I can work around no raw leafy greens, although I do like salads. I especially like salads with blue-cheese dressing... a double no-no. I'm doing OK on the no leafies and no dairy; no sugar is really hard, because it's in absolutely everything. Since I haven't had sodas in years, and my "candy" consumption was basically one bar of artisanal chocolate per month, dropping that was easy. I used to love to make scones, and I was actually getting pretty danged good at it... those, I miss.

So, I'm watching the Food Network, and Alton Brown (my favorite non-animated TV personality) is showing off this lovely carrot recipe, which involves butter (oh dear) and sugar, in the form of ginger ale (oh bother). A double whammy, on the new diet.

Then I pop over to another channel who's showing the original Japanese Iron Chef. Tonight: It's "battle sea cucumber."

Sea cucumber is, I must admit, not high on my "yummy" list. But it did make me realize...

I have more options than I think.

I'm going to try to remember that, the next time I start getting into a funk over "I can't do X any more because of the M.S."

Remember battle sea cucumber: you have more options than you think.

Monday, August 23, 2010

How are you doing?

People often ask me "how it's going."

Well, let's see. Walking is becoming more... interesting, that's a polite way of talking about it... and more "interesting" every day. I'm using a wheeled walker rather than the two-cane system, right now (officially called by some distributors a "rollinator"). When I'm walking in stocking feet, my spirits are reasonably up, but if I have to walk in shoes, I immediately go into an "I want a wheelchair, now" headspace. Various other systems are behaving, uh, let's call it "idiosyncratically." Fatigue remains a huge problem. Driving... I've officially given up on my beloved manual-transmission truck, I'm never going to drive stick again unless things change hugely and radically, and driving even the auto-transmission vehicle is definitely in "some days yes, some days no." Looks like I'm gonna have to replace the truck, and given my financial situation (in a word, "M.S.") that's also going to be ... interesting.

Then again, I go to lectures by people like Crispin Freeman. I just attended a workshop by Bobby Dickman on storytelling. I'm working on a presentation for a conference in October. Some doors of creativity are narrowing or closing, others are opening quite wide. I'm blessed by spending time in a space of profundity, clarity, and joy.

So, how am I doing?

In quotidian ways... inconvenienced. Perplexed. Stymied.

On roads that are ineffable... oh, clearly: the fun is just beginning.

So, how am I doing? Interesting question...

Especially because the answers, even to the perplexed and stymied side of the equation, involve the word "interesting." And the air quotes I make when I say that word make it even more "interesting."

Thursday, August 19, 2010


Another stellar Crispin Freeman lecture last week (and "stellar" is a poor description indeed of some truly beautiful and profound work). This time, the topic was the hero's journey; specifically, the female hero's journey. Contrasting with the Western hero's journey, which is almost always a male's journey, and which is a journey that involves a lot of doing, the female hero's journey is a journey of becoming.

One of the series he discussed was Revolutionary Girl Utena, which (among other things) turns the standard "magical girl" archetypes on their head, and even beginning to explain it takes far more room and time than I have right now. But among the things in the series that speak to me deeply, are the plights of some of the ancillary characters, who are themselves on journeys of "becoming," but they don't know it... and they're trying to address the holes in their lives (and their souls) by "doing," and inevitably, doing the wrong things.

For example, Juri: A tall, rather patrician beauty; a deadly fencer, clearly very intelligent, and (to everyone but herself) clearly very passionate. She's also clearly a closet lesbian... but she won't come out of the closet to herself, much less anyone else, and she goes through a great deal of agony because she can't be truthful about herself to herself.

The MS journey is that very hero's journey. MS takes "doing" off the table; our "doing" is restricted, redirected, transformed--but "doing" is removed as a first choice. Which is particularly inconvenient for people like me, who are poster children for "doing" (in the Buddhist sense). We are called first to honesty, and then... to becoming. A very, very, VERY different path from "doing."

But... this idea is hardly exclusive property of the creators of anime. As the saying goes, the great jihad is the inner jihad.

And it's especially interesting to me, now, to realize that perhaps, the reason that I've always preferred the stories about "becoming," about inner transformation... is because it was my story. I just didn't know it yet.

And exactly how it is my story, and how I should tell it... that, I'm still learning.

But it is one hell of a story.

Friday, August 13, 2010


I had a truly wonderful... amazing... in every sense, "peak" experience, last week.

It was at a lecture about superheroes in the West vs. giant robots in Japan.

It was presented by Crispin Freeman, an anime-mythology scholar/voice actor/director with whom my wife and I have been studying this summer (which studies, by the way, have made this one of the most fun summers in years).

There are all sorts of positive things I could say about the lecture, and go on about said positive things for hours; but for two glorious hours, I was living in a world of crystalline thought. Precision. Clarity. Profundity. And joy--the joy of discovery, the joy of being in a place of crystalline and profound clarity, the joy of the subject matter, the joy of sharing.

Yesterday, I saw my doctor, and told him about the experience. He thought it sounded great (and was sorry he wouldn't be able to see next week's presentation, to which I'm also going). The examination went on as it usually does, he did some neuro stuff, and then he said, "I'm concerned about the way you say your legs are going downhill." (And they have been, they're getting steadily worse.)

I told him, "I don't care about my legs getting worse. If I have the choice between my legs getting better and staying in a state of joyful clarity and profundity, I'll take the latter."

I don't know whether or why that would even be a choice...

But that's my choice.

Saturday, August 7, 2010


I was kept up a few nights ago, by my own brain steaming about some issue involving a church service some of my acquaintances are planning. I was fuming about a particular "thing" one of the participants was suggesting (details aren't important, so they're being omitted to speed the discussion) because the theology of the said participant's contribution was... well, let's just call it shaky. Inconsistent with the rest of the service. Logically unsound and unsupportable. In short, it made him feel all cuddly inside, but it was worse than meaningless.

And I'm fuming about this, and fuming about this, for quite literally by-the-clock hours.

And suddenly, I ask myself, "Why is this 'mine'?" The words I keep coming to in my inner rage are, "But it's WRONG!" Not morally wrong, mind you: intellectually wrong. But rather than ask myself why I'm so hung up on its intellectual correctness, I ask myself, "Why is this 'mine'? Why am I trying to own this? To protect it as vehemently as though it were my child? Why is this MY PROBLEM???"

And I didn't, and don't, have an answer.

Now... I don't rage against the MS. I don't rage against the loss of muscle control. The lack of energy. The inability of anyone to do anything for me. Just today, I noticed a sudden worsening in the control of my left leg. Not good... but I've got no anger there. It just... is.

But an issue that, honestly, isn't really my problem...and in all honesty, the problem is something that I can't "solve" any more than I can "solve" my MS... but howling at and about the incorrectness, and my rage at said incorrectness, I'm attached to. Vehemently.

Funny thing, attachment. We pick the strangest things to attach to, and we fight so furiously to maintain, and even strengthen, that attachment.

Another short sentence that's surprisingly hard to say: "Not my problem." Not as denial, but as a simple statement of fact: The floor is carpeted. My shirt is green. This is not my problem.

MS makes things hard enough. I wonder why I work so hard to add more difficulties to my life...

Funny thing, attachment.

Sunday, August 1, 2010

"No" vs. "Instead"

An interesting object lesson in the difference between "no" and "instead," this morning.

I played the organ for a Sunday-morning church service, today. This organ has a very welcome feature, an "auto pedal" switch that automatically plays the pedal on whatever the lowest note is on a given manual. I'm sure it's there to make it easier for piano players to play the organ, I've seen it on more than one instrument, but I was never more grateful for it than I was this morning.

There are things I can't do, when I can't control the pedal board; for example, tune in one hand, accompaniment in the other, and independent bass part in the pedals.

But I could play a completely satisfactory and satisfying service. I could still accompany hymns quite well; I couldn't use some of the "color" registrations that I've enjoyed using in the past, to play the tune on a solo stop or on the chimes, but I could still play the hymns in a way that the congregation loves to sing along with... and really, isn't that the point? Pick the right prelude and postlude, and you can get away without using the pedals. 'Course, the pieces with pedal are bigger, better, more fun, and more satisfying--when you can play them, of course. They're most unsatisfying if your nervous system won't cooperate.

So, I can't play "the organ" any more, maybe... but I can play that organ, I can still make music. That part of my life is not as wide open as it once was, but it is not forever behind me, as I had feared.

And, by definition, "good enough" is... good enough.