Accommodation (another)

Another "should" to remember... I should go directly to bed when I get home from work, and take a nap, and recover from the depletion of the day, before I talk about anything with anyone.

Because, I think, I'm so tired at the end of the day that I don't think well, and I don't relate well; and MS being full of "againstness" on the internal side, I don't need to add to that on the external side.

We spend a lot of time seeking and working with accommodative devices--canes and walkers for pedestrian locomotion, hand controls for automotive--we (read as "I") forget that we need to accommodate our emotional/communication "locomotion" through the world.

Another completely correct and necessary, but not always welcome when it arrives, gift of MS.

Not as poetic a realization as some have been, but just as true.

Closer

Second hand-control driving lesson today; I thought I did good, and (fortunately) so did my teacher. An hour and a half of incident-free driving, including a few freeway jaunts. Very, very tiring, mostly in mental paying-attention-to-the-world effort; but even accounting for that, very successful.

He thinks I should do at least one more lesson, but that even before that, I'm ready to call Control Installer Guy and start lining him up to finish The Great Conversion.

And then... freedom. Small freedom, but still freedom. I'll be able to drive myself to, and then home from work... which is, at the bottom line, more effort than I'm expending now (a colleague is driving me, right now); but at least I'll be able to do things like deposit checks and buy frozen pizza on the way home.

And y'know, in the MS biz, you take what you can get.

Change without progress

An interesting combination of symptoms (I guess you can call them that).

Things are better. The "numbness"/data corruption, that was the tip-off that something might be neurologically Not Right in my legs, seems like its fading away. I'm feeling parts of my legs that I haven't felt in years.

Other things are worse. I also have raging coldness in one of my feet, my motor control is degenerating, and I wonder if I'm knocking on the door of "too weak to walk."

Things are better. I actually have the feeling that I might be able to write music again.

Things are worse. I feel too tired to sit at the computer and write music; I'd rather be in bed, under the comforter, listening to Babylon 5 or Mighty Boosh or something else comforting. (I don't want to watch them, my eyes are changing prescriptions or something so much that I can still see things but focussing on screens is unpleasant, and/or not always productive.)

I often find solace in the tale of the Taoist farmer. It's hard to look at what's going on and shrug philosophically, "Who can say what's good or bad?"

This one's easy. It's both, at the same time.

One step forward, one step backwards. I am not "going nowhere," I'm progressing and retreating, simultaneously; very clearly improving, very clearly degrading. Hard to find a suitable metaphor; my wheels are spinning, but the road moves underneath me in the opposite direction. Lots of motion, but zero change in position.

Great. I'm on a treadmill; lots of effort, no forward motion. But, at least the theory goes, it makes your heart stronger. And after all, Nietzsche said that what does not destroy you makes you stronger.

Mother Theresa is credited with saying, "God never asks me to do anything I can't do. Sometimes I wish He did not have so much faith in me."

Amen.

New prescription

Saw my neurologist/acupuncturist today. I was able to report that I'm getting some sensations back into my legs. What was the initial clue that eventually led to The Diagnosis was a weird sort-of numbness/non-information in my legs. But now, sensation is actually returning.

Control is still questionable to bad. My legs, especially my right one below the knee, are nasty, nasty cold, all the time. My right foot in particular has areas of screaming icy numbness. But I'm actually feeling my legs. Sensation is coming back!

The prescription:

Rub the legs.

The goal: Feed the legs sensation data. Give the nervous system some sensation data to deal with, to help it retrain itself and form new pathways.

Secondarily: Warm them up. Sit in hot water, for example. Do whatever warms them up and makes them feel good.

Of all the things we MSers get thrown at us... in a world of medications whose side effects hit 100% of the time but whose benefits are unknowable... in dealing with the organ system whose workings are the most elusive to any medical science, Western or Eastern...

"Rub your legs and warm them up" is one hell of a prescription.

Back to normal (through completely new means)

Yesterday, I had my first encounter with hand-control driving.

Weird, yes. Easy, yes (in many ways). Life-changing, by the time the "road" of instruction and machine-modification has been completely traveled... oh my, yes.

Although my first thought was, "I really should have played more video games."

There are a bunch of different styles of control devices. My trainer introduced me to one of the newer models (which he also said he liked the best, for a number of reasons). I liked it too.

It's (of course) going to take practice, as much unlearning the old habits as learning some new ones, and more instruction; but those were definitely the first steps (tire-prints? the automotive metaphor doesn't resonate as well as the pedestrian) towards returning to the sort of independence that I had enjoyed before The Disease imposed itself so sternly upon my legs.

Something as simple as "I want to go to the bank, then to the store, on the way home" is pretty small, but significant all the same. Especially when it's something you just can't do, given the current State of Things.

Next lesson is Saturday. Perhaps it'll be less exhausting doing it during the day; the first adventure at night was nice (no traffic) but scary (training-car's headlights weren't quite up to the task). But it will definitely be fun.

At least, that's the plan.

Unexpected metaphors; new (old) therapies

Got into a bit of a snit with a friend of mine the other day. The basis of the snit was, in essence, "I said X" (friend) "Well, I heard Y" (me). I haven't quite figured out how to tell him that others in attendance corroborate my take on the discussion, not his... but the reason I bring it up is that it really does illustrate the MS experience. Something sends signal X, something receives signal Y; and if there's a "fault" to be assigned within the process, it's data corruption, not sender-not-articulating-properly or listener-not-listening properly.

Of course, I don't know if my friend will see it that way, but that's the story I'm sticking to. "Let's blame it on the noisy room" rather than "You didn't explain yourself properly, even if you think you did." Also has the advantage of perhaps being accurate; which also fits the MS metaphor, doesn't it? The Vorlons (in Babylon 5) said that "Understanding is a three-edged sword;" there's your side, my side, and the truth.

On the treatment front, I got a new formula from my new herbalist. He explained it as having three functions: clear out viral/bacterial-infection nonsense that's making my immune system go into overdrive and chew on my nervous system, directly calm my immune system, and rebuild the nervous system. Every ingredient in the mix isn't a single chemical, it's a plant. Interstingly enough, this Andrew Weil in his regular Huffington Post column lauded the superiority of complex-of-chemicals plants over single-chemical pharmaceuticals.

This kind of approach is impossible to mass-market. My formula was created for me, not for the generic MS patient. (Like such people even exist.) This kind of approach requires the healer to pay attention to my specific expression of the MS experience, and even though he has been working with people with similar disease processes for thirty years, none of his other patients have my needs, my challenges, my requirements. You can't just say "try one of these four drugs, statistics suggest that many people similar to you (we think) get some symptom reduction, sometimes. We think." My current formula is for me, to address what's happening to me right now.

How does he know it'll work? Experience, training, and the collected knowledge of five thousand years of Chinese herbal medicine. Does it always work? No, but if it misfires he adjusts the formula and, usually, it starts working.

How do you know whether [insert Big MS Chemical here] will work? Statistics tell you that it works for the aggregate, but for you? You don't know. You can't know. No one can know, it's mathematically provable to be unknowable.

And I don't get side effects. Any. Ever.

In the meantime, because I'm surrounded by medical care givers who are giving me custom care, I notice that I'm changing my approach to my students. I really, really personalize their care. I know where to start answering their questions, but I go immediately to a completely custom answer. For the person who's asking me their question, today.

And, really, the way my caregivers approach me, and the way I approach my students: a completely, 100% custom approach.

And the downside this approach, for my own care and the care of my students, rather than using the "everyone is the same, one remedy answers all problems according to this bell curve" is... ... ... ?

?

Indecision

So, we have a "teacher's institute" day today, kids get the day off so that teachers can have those ever-so-vital meetings. Can't get enough meetings, can we?

I'm now at home. I had planned to spend the day writing music.

All I want to do is lie down and maybe sleep.

So, what's the "right" decision? Work on the music I've been wanting to work on since, oh, June, is it? That has only been barely worked on because the MS robbed me of energy and creativity?

Well, energy and creativity, right now I ain't got.

My wife said, "Do what your body wants." Honestly, starting tomorrow better rested has a certain appeal. Not working on music when I'm too tired to sit up also has a certain appeal. Leaving music unworked-on for a fifth month doesn't have that much appeal.

And I'd do something about it. If I weren't so tired.

Hidden costs of "convenience"

So I've been on this diet for several months... no dairy (that's "no" with three underlines); no uncooked leafy greens; minimal (at most) sugar, at best two large handfuls of fruit a day.

I think that what my healer is trying to do is to lower the number of balls my immune system is trying to keep in the air, to quit throwing things at it that it wants to/has to deal with, so that it will stop fighting All Sorts Of Stuff and clear out the immunological noise, so he can figure out what's making it gnaw away at my myelin (or whatever other part of my nervous system it's gnawing at).

I was doing great until I started this school year. The school has truly wonderful food service; what they create is healthy, nutritious, and really quite good. You'd be surprised at all the vegetables they get the kids to eat.

Unfortunately for me, one of their tricks apparently is... butter.

Now, I had been trying to be good, if what they had on offer was clearly dairy laden, I said no. They'd even make me "naked burritos" with just the meat mixture, no lettuce/cheese. They were very accommodating, and generous.

But, I'm afraid, it seems they use a lot more butter than I thought they did. Which, it seems, has trashed my system.

I'm now on a "herbs every two hours until something improves" regimen. Which means, alas, no tea, since I need to keep tea clear of the herbs (they don't get along well). The upside, happily, is "no side effects" to my medication regimen. None. Never.

But this means that I'm pretty much never going to eat a most Western restaurants ever again, because they're Butter Crazy. Not really much of a loss, since I prefer Japanese to pretty much every other style; Thai and Chinese I like too, and it's very easy to be non-dairy with those. But it means that when my department at work wants to go to a restaurant, I probably can't (they like "normal" food, not the "weird" stuff I like), and when for whatever reason I have to go to a particular restaurant, finding options is going to be ... interesting.

But then again, what about the MS experience doesn't involve creative accommodation around what most people consider "normal"?

Which makes accommodation, for us... "normal."

So, in being different, we are actually... all the same.

We're all "normal."

How different would our world be if everyone realized that? Not that I'd wish MS on the world, but... its side-effects do have their advantages, do they not?

Hidden blessings

A few years ago, I came very close to a chance to take a Very Impressive Job in New England.

I didn't take it.

On paper, it was the job of my dreams. But for various reasons, I didn't take it.

That was before The Diagnosis.

Here I am, after The Diagnosis... I receive Cadillac care from (from the Official Western Medical Perspective) odd and questionable care givers who in fact are the best thing that could have possibly happened to me.

Temperatures are tending to the high 50's. Unlike your textbook MSer (like those even exist), I am both heat and cold sensitive. Summer makes me suffer above the waist, my legs absolutely love 100-degree heat. The approaching winter, my above-the-waist core is enjoying, and my legs are cold cold cold. They're barely working at all. I lie in the bed under a down comforter folded double, and I'm cold.

And that's with the temperature in the house at 68. I can't imagine how I could bear even to exist in New England temperatures.

And suffer though I do, I'm in Los Angeles, where "cold" is 50. Receiving some of the best medical care one could receive from anyone, anywhere.

And to get this, all I had to do was not take an on-paper Job Of My Dreams.

Amazing, how not getting what you always dreamed of can get you things that are better than you could have dreamed of.

Interesting thing, this MS.

New realizations

A couple of things I have noticed, this week.

I think I'm going to have to ask for some additional accommodation at church. Today, I spent most of my mental effort into figuring out how not to fall over while singing the anthem, rather than executing the music. Fortunately, my ear is good enough that even on "autopilot" I can sing something in an appropriate chord, but I was missing notes (with luck, only I noticed, but still, I noticed). I'm going to need a stool; I can't use both hands on canes and hold the music and turn the pages, even with a music stand I can't hold two canes and turn the pages. The folks at church are very reasonable and more importantly, very kind, so I may be a little embarrassed by needing to ask, but it's going to be an easy fix. They'd rather have me on a stool than out of the choir.

I noticed something this week about how my teaching style has changed this year, how it has evolved within my "MS world"... I don't approach things on the physical level, "You need to color within the lines," I come to things on a "what's upstream of the problem" level ("You aren't getting this operation right because you don't know why you're picking this operation in the first place, or why the operation works. Clear those two up, and you'll get this correct.")

Self-empowerment through not through "discipline" (by that name), but by clarity and integrity of effort. Fix the problem that's upstream of what is expressing itself as "the problem," and "the problem" will go away.

Which, interestingly enough, is how my oriental-medicine practitioners are approaching MS. From the Chinese point of view, MS isn't a disease, it's just the name you westerners have given the symptoms; we're looking at what's upstream of what you call MS.

Which approach is not why I seem to be taking the "solve the problem upstream" approach. Although I think the MS itself is what's leading me down that road.

But my students are finding this road also very interesting. They're used to teachers saying "work harder" or "do it THIS way and I'll give you the A." They're not used to hearing teachers say "change the way you're thinking about this, and the problem will go away."

Do not be conformed to this world, but be transformed by the renewing of your mind.

I think I've heard that somewhere before...

Some wisdom from Thornton Wilder

From his play The Angel That Troubled the Waters. An angel who kneels by the side of a pool, which will provide healing when the waters are stirred by the angel, addresses a physician, who is himself in need of healing.

Angel says, "Draw back, physician, this moment is not for you."

The physician asks him, "Must I drag my shame... all my days more bowed than my neighbor?"

The angel replies, "Without your wound, where would your power be? It is your very remorse that makes your low voice tremble into the hearts of men. The very angels themselves cannot persuade the wretched and blundering children on earth as can one human being broken on the wheels of living. In love's service only the wounded soldiers may serve. Draw back."

This MS, that bows us more than our neighbors... is it not then a gift not just to us, but to others?

It just might be...

Taking time

Most of my students are away this week, on some sort of community-building outdoor-education thing. As a result, I have a lot of time free during the day.

And I am getting so much work done. Getting prepped for the rest of the semester, fixing all sorts of problems, even getting some very nice creative work done.

What a strange idea... to give someone enough room, enough time, to do work of real quality.

Well, we just can't afford to do that (I hear the voices say). We need all this stuff done. We can't just sit here and wait until you do the "quality" stuff you want to do.

So... let me get this straight. You (the Establishment) would rather have more than better. You'd rather have a lot of stuff done not very well, than have less stuff done but done really well.

And you get upset when things aren't done "properly."

Why? That's what you asked for.

Gifts that I do NOT need

MS brings many gifts. All of them you need, but many you don't want (at least at the time that they're first delivered); some of them surprise you in their wonderfulness; many of them surprise you in very quiet ways.

One "gift" that I wish I could not have anything to do with... is dealing with the insurance company.

I have lost a lot, because of MS. My ability to play the organ. My ability to play the drumset. My ability to play the piano comfortably (inability to deal with the damper pedal, another leg/foot malfunction problem). My ability to drive. A few other abilities you would really prefer that I didn't share, and I won't; but merely let it be said that those abilities--I don't have them anymore.

And losing all of those is easier to deal with than the insurance company.

"We can't process this, you didn't supply the right alphabet-soup-acronym codes. But then again, you can't supply them, your doctor has to." But this thing I'm requesting reimbursement for, I didn't get from my doctor. He has nothing to do with it. "Oh. Well, you'll need your doctor to send us the codes." Repeat the previous two sentences for about a half an hour. Finally, "Oh! Then you'll want these other people to send us a form with the right codes." Great. Success. I call said other people, and ask them about said form. They know nothing about it. "We don't send those in," they say. "And that thing you bought? There's no code for it, so we can't submit it anyway."

And the insurers probably don't cover it anyway. And, since they don't feel like paying for it, they're also not going to apply it to my deductible. Why skip up a chance to screw you TWICE over the same claim?

So, anyway you look at it... I'm hosed, it would seem. You get nowhere if the forms aren't filled out (because, it would seem, they're incapable of reading English, only numbers), if the forms can't be filled out because the charge codes don't exist, you're completely out of luck. They don't know you, but they know that you shouldn't receive that treatment; or it's OK for you to receive that treatment but not from that person... whom they also don't know.

I am suddenly reminded of Matthew 25, 42-46:

“I was hungry and you gave me no food, I was thirsty and you gave me nothing to drink, I was a stranger and you did not welcome me, naked and you did not give me clothing, sick and in prison and you did not visit me.” Then they also will answer, “Lord, when was it that we saw you hungry or thirsty or a stranger or naked or sick or in prison, and did not take care of you?” Then he will answer them, “Truly I tell you, just as you did not do it to one of the least of these, you did not do it to me.” And these will go away into eternal punishment, but the righteous into eternal life.

The Good Book also says, "Vengeance is mine, saith the Lord." Well, as satisfying as it might be, watching them wracked with divine vengeance won't make me feel better; I would trade their stint in everlasting perdition, gladly and in less than a second, for some compassion and decent, intelligent service.

Which, y'know, in this day and age, really shouldn't be that hard to get.