Tuesday, February 28, 2012

Small, yes—but cool!

Some good news from the herbalist today. He gave me a big smile, and told me that these levels had gone down, this was a good sign, this doesn't seem like much of an improvement but it is an improvement, and things are very clearly looking better!

And how many times do we get to hear news like that?

My formula this week is full colorful herbs, of charming spring colors of yellow and orange. Better than the "scowling brown" colors the formula usually comes in. It has an... intriguing ... aroma; I haven't tried it yet, but the formulas are always full of surprises.

And just a few minutes ago, I got a call from a friend. We both used our cell phones—hardly anything "amazing" about that, in today's world—but it was amazing. He was calling me from South Africa. He was getting ready to speak at an international conference on graphic design, and just wanted to chat before he had to face the audience.

How many times do we get calls from about as far away on the planet as you can get? From one cell phone to another?

A day of small miracles. Small they might have been... but even so, they were nonetheless still quite miraculous.

And in the M.S. world... and in the non-M.S. world, for that matter... miracles are still—cool!

Sunday, February 26, 2012

Gifts, of all kinds

Blessings in many sizes, already, today.

The choir at Oneonta Congregational Church sang one of my compositions today. They did a lovely job. (A recording was made, I'll share it with you as soon as it gets shared with me.) That was indeed a blessing.

And... I got to conduct it! I haven't done that in a while; it's nice to know that I still can! That was fun! Another blessing!

And... the best blessing of the day: I didn't fall over. I had to use both hands, which meant that I couldn't hang on to a railing while I conducted... I did lean against one, though, rather than stand "free" just on my feet. But even so, I used both hands, and never had to grab for safety (or reassurance, even). Everything was just fine. As fine as it would have been without The Disease's influence on my standing/leaning.

Each one of these blessings was small; "gently sized," shall we say. And yet, in their own way, they were each wonderfully big. Delightfully big.

M.S. isn't the only thing that abounds in gifts. Life, just plain "life," is full of them too.

Here we go again: Some days bad, some days good. Life is just like ... M.S. ... isn't it?

Saturday, February 25, 2012

Interesting turnaround

A new annoying surprise is announcing itself.

"Standing" only goes for so long before it's time to stop. My first choice, once "standing" has reached its conclusion, is to sit down.

And the surprise is... "sitting" is now becoming uncomfortable. The recliner that has always been my refuge, where I sit to work on things such as this, is no longer as pleasant to sit in as it has previously been.

A while ago, some occasion brought me to sit on the floor to work at something. I sat in a half-lotus position, and surprised myself at how amazingly comfortable that was. I've always liked that position, even from the first day I learned it in my teen years, but it was never so wonderful as it was that day, sitting without any padding on a wooden floor.

Of course, when it came time to get up—that was awful. I nearly couldn't, and I nearly couldn't walk; it took longer than I liked for what passes nowadays for "control" to return to my legs. But the sitting... the sitting was wonderful.

I wonder if the recliner can be made more comfortable with the addition of a pillow, or some other padding ('course, if I hadn't lost so much body fat, sadly including what used to be on my buttocks, I wouldn't need added chair padding). I mean, that half-lotus was great! But it's not going to be a good alternative to chairs, if the cost of that comfort is going to be inability to stand up afterwards, and needing to slither away until the legs start working again.

I can often find the hidden gift in just about anything, but this one eludes me, at the moment. If it weren't so bloody cold outside, I could take it as a "hint" simply to go outside, and do whatever needed to be done out there rather than inside. Given how uncomfortable I find chilliness, and how that cold makes it even harder to walk, I don't think that's the direction I'm supposed to take.

Today, at least. But, as I'm typing this, I'm wondering if the message is simply "Listen better." Because if I were listening better, I'd get the message, the gift that at the moment is eluding me.

Oh, the gift is there—I know it is. It's on me to put myself in the right space to accept it.

Just like M.S., life is. Now that's an interesting turnaround, isn't it?

Friday, February 24, 2012


A day of interesting moments.

Insurance company reported via e-mail that a number of "explanation of benefits" were available. For them to call any of these things "benefits" beggars the concept of "baldfaced lie." One page after another of "Oh, we won't pay that much, you'll have to cover all that... we don't pay for that... we don't pay for that, either..." The other day, someone joked about the world ending in 2012, and I'm sorry to report that I said, "Good. I hope it does. That way, the people who work for insurance companies will all be killed."

I was joking, of course.

Of course.

Another interesting moment: one of my 9th graders, who has been a little too quick to sleaze off her assignments, knocked an assignment out of the frakking park. She was as clear as a laser. It was a moment of perfect beauty.

Because I'm the computer teacher, I "get to" (and those are massively huge "air quotes" around "get to") give my students their "adult content on the Internet" lesson. I don't go into any squishy details, or do any finger wagging—I actually try to stay in a space of honesty and even humor, when I can—but there were a few very charming instances of people trying to hide themselves inside their own sleeves and cover their heads, during the completely safe and intentionally funny slides, while their neighbors yanked at them and said "C'mon—it's not that bad, it's OK, you've got to see this!"

And then, tonight, being completely out of energy; so much to do, so much that I need to at least try to get started doing, my legs are sore and twitching, and all I really want to do is have some sake and climb into bed and not get up so damned early tomorrow, but these new thyroid pills have to be taken an hour before eating and at the same time every day and because I have to be at school at 8:15 to Teach the Youth of America, I need to get up at six-something in order to not eat, so I can eat later, but not too much later, so I can get to the Youth of America in time... sigh.

Well, in the M.S. game, you take what you can get, right? But even so, as the day closes, with my legs twitching and aching, and being energetically completely sucked dry...

It was a beautiful day.

Tuesday, February 21, 2012

Zen and the M.S. Highway

An interesting discussion, at my weekly acupuncture treatment/dharma talk.

And not just a joke about one of the points that was treated today: Melody Bone.

"I need to write more music..." I offered after I asked what point it was that he had just treated.

"Yes you do. Play the melody bone," my doctor jokes.

But as to the dharma talk: We had some good discussion about how to be truthful about "what I can't do." A lot of this pertains to what-can't-I-do-any more, especially in the context of my teaching job. I can't go up ladders to hang/adjust lights. (Heck, I don't even like going up a two-step step ladder to reach something from a high shelf or change a light bulb at home... much less going up twenty-five feet, over the floor of the auditorium). But those are easy to be honest about; takes about one, maybe two seconds to find out that activity X, you shouldn't oughta be doing. (And is usually accompanied by muttering to yourself "You idiot!")

Now, it's the quiet "I can't anymore's" that are hardest to deal with. The ones where you mutter to yourself, "C'mon, you can try harder. You can make it. How bad is it? You can keep going!" ... but you shouldn't. My doctor told me about an M.S. patient of his who had a malfunctioning bladder (another one in the club) who nearly died because his bladder had stopped emptying, was backing up into his kidneys, but he didn't (at the time) know how bad off he was, and thought he could just soldier on. He's quite alive and much healthier now, but now pays a lot more attention to the messages his body sends him.

So... to be honest... how do my physical limitations express themselves?
  • I can still stand up. Slowly. Usually without falling over, but sometimes, one leg crumples or an ankle turns. But "just stand up?" Nope.
  • I can still walk, short distances, and slowly. In socks. Not so well, in shoes. Sometimes, one leg crumples or an ankle turns. It's a better idea to have something handy to steady myself against. The canes I used to use all the time... not steadying enough; not as good as a wall or a chair. Using the walker is a much safer idea than walking "solo," but the walker doesn't facilitate moving quickly, or prevent the leg-crumpling or ankle-turning. Or make walking in shoes easier; even with the walker, I prefer socks.
  • I need to sit in good chairs. Best of all: chairs that allow me to put my legs up. But even with good chairs, I'm only good for so long in them before I have to get up; to "walk" a little, on a good day, to lie down on a bad one.
  • I'm good for maybe two hours—at most—of applying myself to a single task, in a single "chunk" of time. Not counting the bathroom breaks, which come on their own schedule, not the clock's. On a good day, I can take a break for a half hour or so and then go back to it; on a bad one, I have to go to bed. The school day provides me with chances to at least get away from the world and recover, but by the end of the day, I'm definitely done. "Done" in all caps. It's a huge triumph when I have the "juice" to go shopping after work, and an unbelievably huge triumph to go shopping and then make dinner.
I'm best at "tell me what you want me to do, leave me alone and let me do it in small chunks." The usual "C'mon, team! Let's go! All hands on deck!" that is part-and-parcel of the workaday world... that's beyond me. Especially when "All hands on deck" means "We're going to be understaffed and under-prepared, so everybody expect to work like dogs!" that I used to take in stride... well, I don't stride any more. Wish I could. But can't.

I'm still good for a lot. I can still do things that very few people can do as well as I can, and I can often make real magic happen. But not on the "usual" terms of the workaday world.

So... This is my task: To do the good that I can do. To be truthful about what I can, and can't, do. To help whom I can help—including myself, and to do no harm—especially to myself.

Not that much different from the non-M.S. life, is it? But that's one of the gifts of M.S. ... The call to be truthful, about yourself, to yourself. Because... we M.S.ers, we don't have any options. We have to be honest with ourselves. And that's the first gift of M.S. : feeling the need to remove delusions about your own mortality that are oh-so-pleasant to hide behind.

You see why I tend to wax spiritual... Take a look at my kyudo teacher's Zen blog, about "Living Life." I don't see any difference between what he says about Zen People Walking and my experience of walking the M.S. Highway.

So that is my task. Our task: To walk through life; in the reality that is to be lived in.

The air is beautiful, as you're walking. Breathe it.

Saturday, February 18, 2012

Comedy, thy name is...

Well, so far the thyroid boosters have been... OK, I suppose. No major changes so far, but I actually can feel a subtle change in something. Somewhere. Not sure exactly in what. But there has been a tiny, tiny, tiny change. Somewhere.

Positive, I'll take. Even a tiny, tiny, tiny positive.

And in other, tragicomedically recurring news... My Adventures With B-san continue... adventurously. B-san (for those who haven't been following the saga, B-san, Japanese for "Mr. B.", is my ever-cantankerous bladder) is indecisive as ever. Well, I don't know if that's exactly the right term for his moodiness... he's really quite decisive, when he expresses himself. But he makes promises he doesn't feel like keeping.

"This is gonna be... huge!" he foreshadows. But when the time comes, he is ... unenthusiastic. Off-putting, even. "So, why are you bothering me? Like I'm interested in doing anything for you," he seems to say.

But then he screams for attention again.

And when he gets it, he does nothing about it.

I'm usually surprised when he actually makes good on his promises, especially because he often promises little, but delivers much. And then demands to deliver again... and he sometimes does. Sometimes.

Bart Simpson once paraphrased Hamlet, saying "Comedy, thy name is Krusty." Well, for me, B-san's name is comedy, but it's always funny in a ... ...


Oh, let's be polite. Different... way.

B-san, would you let me write the jokes for a change? Please?

Wednesday, February 15, 2012

Nice change

Well, first day on the new medication: no problems. At all.

A sharp contrast to my experience at a neurologist's hands... My legs hurt, I told him. Take this, he said.

MAN, was that bad. I don't remember what the pill was, but I do remember that I felt like my soul was being ripped in half. If I hadn't known instantly that what I was feeling was drug induced, and could deal with it on that basis—if I had been surprised in any way, at my soul being ripped in half, I have no idea what I might have done. Completely freaked out, to say the least.

And he told me I'd have to take that for months before I'd feel any less ache in my legs. Months. Living with my soul ripped in half. Months.

But today, on the "new pill"—I felt great.

Nice change. Who knows what else good may happen? We'll see...

Tuesday, February 14, 2012

Fair trades

I'm making a new journey into the Western pharmacological world, starting tomorrow.

Not one of the Disease "Modifying" Monstrosities, but something much, much simpler: Thyroid boosters. Or whatever their official name is.

They tell me that they can only be taken first thing in the morning, and they must be taken an hour before eating.

So, to make the math simple, if I'm eating around 7:30AM, I need to be getting up around 6:30AM and chugging down a pill (with lots of water, the label on the pill bottle says so). Earlier would probably be even better.

Good thing the sun has been rising sooner. Too bad I still need more sleep than I'm getting. Is that a fair trade?

The most tragicomic thing about this has been... the thyroid pills were cheap. Inexpensive, that is (I sure hope they're not "cheap"). 'Course, my insurance company, or the pharmacy, I'm not sure which, were the ones who wanted to charge me more than $200 for athlete's foot medication. For foot cream, they wanted more than $200. For an artificial hormone, they want like five bucks, or something like that.

I just don't get it.

Anyway... new medication. We'll see what that does. More news as it happens. Time to reset my alarm. (Grumble, grumble...)

Saturday, February 11, 2012

Fifteen minutes of fun

An experiment, this week.

For the first time in months, I spent some time playing the organ. Of course I tried to use the pedal board. Of course, that didn't work. Even the expression pedals (think of the gas pedal in a car: push down to accelerate, pull back to slow down: they work very much the same) were too much to operate with anything even vaguely resembling "precision" or "control."

But I was able to play reasonably convincing "theater-organ" style music. I was hoping that maybe, just maybe, I might be still be able to accompany silent movies; and maybe, just maybe, I still could.

Now, proper silent-movie-organ technique requires three voices: Tune, counter-melody, and pedals. Well, right now at least, that ain't gonna happen, in the pedal department. But considering that all sorts of people have accompanied movies with just a piano, it's certainly possible.

The piano is also a challenge, because I can't really control the damper pedal, even to the tiny amount of "precision" that its one pedal requires. My foot won't stay on the pedal, and when it is there, it doesn't control the pedal at all well. Or sometimes just-plain "at all." I haven't tried strapping my foot to the damper pedal (that'll prevent the off-slipping), so that's a possibility... But even the piano has foot-related issues; not the first thing you'd think about on an instrument that's all about hand- or finger-work.

Harpsichord... no damper pedals, no foot pedals (on most of them, at least)... that, I could play. There ain't much call for them, and I only know where one of them is in the entire city of Pasadena--of course, that one is a pedal harpsichord, how's that for irony? And you can't use them to accompany silent movies... well, you could, I suppose, but it'd be pretty darned strange. At best.

But I'll keep trying. Most importantly, even if I wasn't playing "correctly" or even "well," I certainly had fun, and that's important.

And the mere act of just sitting on the bench... that's also hard. And I'm not talking just about the bench. Which is hard. But I've lost so much weight and muscle tone and muscle mass, I don't really have much to sit on, between me and the bench. Pillows are soft to sit on, but they also facilitate sliding around, or worse off, the bench.

But one thing at a time. And even if I'm only good for ten or fifteen minutes, that's still ten or fifteen minutes of fun.

And there's ain't nothin' wrong with that.

Wednesday, February 8, 2012

The comedy of B-san

I was so proud of myself today. I emptied the dish drainer (from yesterday's load), then did tonight's dishes. Didn't wait for the house elves to take the dishes off my hands, I did them myself.

This was a victory.

Of course, the entire procedure was interrupted by the insistent but indecisive bladder. "Mr. B." B-san, we anime otaku might call him.

I stand at the sink. No running water, none of the usual excuses/tricks we pull on ourselves to encourage him when he's too reluctant to perform upon request. All I did was stand there. And then, B-san sends a very clear message: "Oh no. Oh dear. NOW NOW NOW NOW NOW NOW..."

Fine. I bolt (as best I can) to the bathroom.

B-san is puzzled by my enthusiasm. He has nothing to offer to the party. He has stopped complaining—perhaps simply being in the bathroom makes him feel content and happy. But he offers nothing to the party.

Eventually, after a protracted refractory period, he decides to do something. Nothing particularly enthusiastic, but he seems happy enough with what he has contributed. He stops. Everybody smiles.

Back to the kitchen, back to the sink. I am now standing at the sink, no running water, none of that. Merely standing. Standing. At the sink.

Well, you know what happens next: B-san panics. "NOW NOW NOW NOW NOW NOW NOW..."

And the rest of the adventure repeats. The dash. The nothing. The wait. A longer wait. Eventually, B-san comes through; and more copiously than the first time. Why he decided to wait and make me go through this whole process twice, I have no idea.

I return to the sink. B-san is appeased. He leaves me to do the dishes.

Now, I don't know as how I'm necessarily grateful to be uninterrupted while doing the dishes, or to have no excuses for not doing the dishes, but...

You take what you can get in this business, right?

And, I also gotta admit, it was a little... just a little ... funny.

To which I must reply: B-san, let me write the jokes. Please?

B-san says nothing. But he will... you know he will. Because, really, what comic likes to be told to stop writing jokes?

Tuesday, February 7, 2012

Calling to confrontation

A beautiful and very powerful story on Tiny Buddha, asking the question, "Will you get bitter or better?"

An interesting question to ask us M.S.ers... In some senses, "are we going to get better" is completely unanswerable; but "are we going to get bitter?" That, we face every day. Every hour.

So I've been looking back at my anger at various things... M.S., Other People, The System (various Systems)... and I'm starting to think that, at the root of my anger, it's not about fairness, or for justice, but...


On a personal level, it's neurological. I want to move my legs in certain ways. My nervous system won't let me. I don't have control... and I never did. My nervous system does. What passes for "control," it has.

It was a pleasant illusion, the "having of control." But it was only an illusion. Control? I never really had it.

I want certain things to happen in the world. Not "world peace" or "cure for cancer" — or, "cure for M.S.," why not—but things that directly affect me. Precisely "where" doesn't matter for this discussion, but basically, it's... People who, in one of my circles, Have the Power and Want What They Want. To me, it makes no sense why they want what they want; sometimes because of my own hard-won experience in The Real World, sometimes because of that same Real-World experience and the application of simple deductive logic. But They want what They want, whatever it is.

And I have no control. No control. And I never did.

It was a pleasant illusion, the "having of control." But it was only an illusion. Control? I. Never. Had it.

Somehow, this is harder to take than being crippled. The tragi-comedic thing about M.S. is that somehow, at some level, it has to "make sense" why it does what it does. Nobody knows what it is, but that's how biochemistry works; there is a reason, there's a biochemical mechanism behind it, and it makes irreproachable logical sense. Even if we don't know what that reason is, there is a reason. And if we could follow the pathway, every single step on that pathway would make perfect, mechanical/logical, sense. That's the thing about chemistry and physics—it has to make sense. It has to play by the unbreakable Rules Of The Universe; the logic behind Why Things Work. There simply is no other option. Never has been; never will be.

Human reasons, though, are different. The Reason makes perfect sense to the Reason-bearer, but it may be ... for lack of a better word, wrong. The Reason-bearer may see a mechanism that isn't actually there—a truth that others outside The Process, observing from a variety of different angles with no buy-in to the outcome of the process, can see, but the Reason-bearer can't. Or won't. They may see benefits but may not see the costs, and may think that part of the benefit of their desires is that they are cost-free. Worse, the Reason-bearer may not care about the costs; but even if that "not caring" could be morally or ethically justified, that doesn't make the costs vanish. This isn't about "differences of opinion" or "artistic differences" or simple disagreement, it's about logic. Assumptions are wrong, data is wrong; therefore conclusion is wrong. That's how logic works. Garbage in, garbage out, as the old computer saying expressed it.

Or so you'd think. Apparently not. I don't mind "That Person knows more than I do and based on that deeper knowledge, their choices make sense." I do mind "That Person knows less than I do and makes flawed choices based upon bad data, buttressed by imagined competence."

So this is my current struggle. Control my bladder better? Well, I'd love that, but there's nothing I can do about it. Walk better? Control my feet so I could play the organ again? I'd really love that, but I ain't doing anything about that, either. Get delusional people to see things non-delusionally? Not a frakking chance.

So what can I control?

I can forgive people for not rising to my expectations. I can stop assuming that people are "wrong" when I don't know what it is that they actually do know. I can forgive them for being wrong when I actually do know more than they do. And I can stop assuming that People Have Agendas that are inimical to my interests, when I have no frakking idea what they, in fact and in truth, actually do want.

And as Joseph Campbell said, I can follow my bliss. Because M.S. or not, there are things that I can do for the world that only I can do, and my task is to do them. The world needs the things that I can do; whether the people in my environment want them is not mine to control, and certainly not to condemn.

Walking without a walker is easier than overcoming your own small-mindedness... your own small-"soul-ed"-ness. Was I going to have to overcome this anyway? Yes, of course, that's one of my major tasks on this particular revolution of the Great Wheel of Karma. But it was having M.S. that set things up so that I went into direct confrontation with my own consciousness of Self-Limitation, and called me, very insistently, to transcend and bid farewell to it.

One hell of a "disease," isn't it?

Sunday, February 5, 2012

Another way

An interesting day.

Walking was a little more... possible, today. I still need my walker, but simply doing the walking was a little more doable. I had to walk a long way from one end of a rather large parking lot to the other (thank you, Super Bowl, for filling the shopping center with people desperate to get ready for The Big Game/Party, the only open parking spot was as far away as possible from where I wanted to go), but somehow walking all that way wasn't nearly as nasty as I had expected it might be. It wasn't as debilitating as such things usually are. Was it just a neurologically good day? A positive side-effect of the magnesium my herbalist is asking me to take? Don't know, don't care. Enjoyed not being floored by having to walk and stand. A wonderful change.

And then, after the happy journey home and enjoying lunch, it was time to do the taxes. In the process, I noticed how much I spent last year on getting treated for M.S.

Oh my...

Sigh. Well, my fellow travelers on the M.S. Highway, you know how that song goes. Enough about that.

Anyway, to ease the pain of dealing with numbers and receipts, I dug through the CD cabinet for some "spirit raising music" for the annual journey down the Tax Tunnel. I was happy to come upon a recording by Virgil Fox: still my all-time favorite organist.

Just hearing the first track, I nearly burst into tears. Virgil completely changed my life; when I was an organist, I did everything I could to follow in his sequin-spangled footsteps. He might as well have channeled Archimedes, saying "Give me a pedalboard to trod upon, and I can move the earth." And he did.

And whenever I played the organ, I tried to move the earth too. And often did.

I like to think that when I really rocked the house, when as Milton said, I "let the bass of Heaven's great organ blow," I would have made Virgil proud.

I think I wept not at "what I could no longer do;" I really don't think it was mourning for losing control of the instrument I loved for all my life, but can no longer play--that has hit me before, I know what that feels like. It was... ... ... hearing the voice of a world I used to live in. Not one that was "denied me," but one that I don't live in much--if at all--any more.

And I miss that world. I really miss the organ, my comfortable entryway into that world. When I played the organ, I was there. "There" with a very large capital T. But I think I really miss that world, and its voice, more than I miss the mechanical, physical instrument.

And being in that musical/energetic/spiritual world has nothing to do with M.S. or the limitations my oddly behaving nervous system bring to my interactions with the physical world. Even though playing the organ was the way I made that world manifest, and the way I myself became one with that world.

There is another way. There has to be another way. And more so--there has to be a way that's only possible with my neurological "accessories."

I feel like that recording--like Virgil himself--has placed the challenge before me.

There is another way: Find it.

Saturday, February 4, 2012

Two thoughts

Two "moments" of text/literature leapt out at me today.

One, from my Japanese-archery-teacher's blog. A half-sentence, just a phrase:

Moving from the core / center of our being

And from Tolkien's The Return of the King. Sam, pausing on the long march to Mount Doom in Mordor, sees a single clear star through the clouds, and he realizes:

... in the end the Shadow was only a small and passing thing: there was light and beauty forever beyond its reach.

Somehow, these two thoughts really spoke to me today. Sang to me, today. So, my fellow travelers on life's highways, and especially my friends who share the M.S. Neurological Highway with me...

These are for you, too.

Friday, February 3, 2012

My task

I had an interesting phone conversation this morning... One of my former students, who has since become a very beloved friend, was bemoaning the challenges he was encountering, trying to find internships in his chosen field--his unique pursuit of which field, I must say, is so amazing that it is clear that following this pursuit, in the road-less-traveled way that he and only he follows, is a miraculous blessing for the entire world; and it's a blessing that only keeps growing every time he bestows it through his artistry.

The long and the short of it was, basically, his concern that his "thing" is not what everybody else in his line of work/art form does, and he fears that sticking to "his thing" going to make it impossible to earn a living.

Well, I told him, you doing your thing as only you do it has paid off very well (he keeps winning awards and grants and fellowships and and and...), people who are underwriting these awards/grants/fellowships seem to think that your unique way is worth ponying up the dough—and if you were being "everybody else," they never would have even noticed you and you never would have won anything. So, bottom line is, uniqueness has paid off. So, I told him, stick to your guns. Follow your bliss. Clearly people have wanted it in the past; your job is not to remake yourself into someone you're not, it's to find the people who want you: a much easier problem than crushing yourself to become something you're not. Why not be what you are? It seems to have worked well in the past... why shouldn't it work now?

Even before I hung up I started thinking, "Now who are you talking to, really? The friend on the other end of the phone? Or yourself?" The "me" that I am now, is the "me" that I am now. Every time I didn't pay attention to the Universal Rule that "can" and "should" are different, and just because you "can" do something doesn't mean you "should" do something—especially when you should not be doing this particular something that you've convinced yourself that you "can" do.

I am what I am; I'm the person that I have become, neurological nonsense and everything. I still have a passion for touching lives, and as much as I miss walking and all that walking enables, I can still touch lives from a chair, simply by speaking truth from the heart with love, and meeting someone at their point of need with that truth and that love.

So my task is not to figure out "what I can do now that I'm disabled by M.S.", it's to find someone who wants me, neurological BS, physical disabilities, and all; who wants what only I can give. Which, I think, is a different problem.

And, I would like to think, a more doable one.

Wednesday, February 1, 2012

Just ... there

An interesting exchange at my weekly MD/acupuncture/dharma talk, yesterday.

My doctor asks, with his acupuncturist's hat on, "What do you want?"

I said, "I want my legs to work again."

He said, "You want them to improve."

I said, "No. I don't want them to 'improve.' I want them to work. Just like they used to." (I thought at the time that I should have added "and work better," but what the heck—start simple.)

Then he asks whether their condition upsets me.

And I said "Actually... no. All the things that don't work anymore... that doesn't bother me. I'd like it if they worked again, but... no. I don't even notice them, now."

And I'd have to say that I haven't "accepted" them—and that's very large air quotes around "accepted," because somehow, to have air-quote "accepted" them, I'd have had to go through some sort of "process," which given my track record, would be self-delusional dressing of what was really just denial.

But I haven't accepted, or pretend accepted, or anything, my malfunctions. If I had, I think I could point to something and say "That's when I 'accepted' everything." But I can't. All of my neurological nonsense is just ... there. And though, I certainly notice very keenly the state that my legs and lower body is in—remember, there's all that "sensitivity" stuff that comes free with your M.S.—I notice it, but I don't mind it, I'm not taking negative emotional effect from it. It's just ... there.

(time passes)

I just had to excuse myself from typing this to visit the restroom, because... as you've heard about if you've been following this blog, there are other systems that are "peevish" besides my legs; and I had to go find warm clothing because the desk thermometer says it's 70-something degrees, but I'm shivering. A new "low," as it were; measurements I've been taking recently indicate that my basal body temperature is lower than it should be.

And yet, all these "irritations" are somehow, not irritating. They just are.

Today's gift of M.S. Peace with your own condition, flawed though it may be.

A gentle and kind gift; I'll take it.