"Good enough"

Now here's a blog entry aimed right between the eyes, from Tiny Buddha; it's about good things ending.

I have several reactions, with equal vehemence:

"Oh, I so need to hear this."

"I have to deal with this every day... but do I really deal with it, every day? Or ever?"

"Get out of my face."

Much of my attitude is based on available energy. If I'm running at a certain "base energy" level, things get done, I can't walk, but who cares.

If I drop below that line, I can't do anything, and I start to spend what little energy I have wondering what "not being able to do anything" is doing to my ability to manifest anything.

A lot got done today. A lot of fun was had today, simply sitting and talking. And my walking is horrible. And that didn't matter.

All signs point to being able to do things tomorrow. Nice things. Writing music. Doing some voice acting. Perhaps even sending some music to publishers, hoping that they might publish some of it. That latter, like the ever-changing quality of my walking, is not under my control. 'Course, it never has been, but thank goodness, I've never obsessed about that, at least.

And tomorrow, I expect my walking will be horrible, it seems to be ever thus.

But it'll be good enough. Which, by definition, is good enough. And that's something else that "over the base energy level" seems to do for me... not having a problem with "good enough."

But today, I'm manifesting, which I haven't done for quite a while.

And that is definitely "good enough."

Eat the strawberry

A good trip to my various care-givers, yesterday. Got some acupuncture points called "The Sea of Energy" (which seem so far to be working as intended), and the herbalist reported that he would soon be able to start putting nerve-rebuilding ingredients in the prescription, as soon as the various nasties that are giving my immune system "too many balls in the air" are cleared.

A visit to the dentist Monday said that I'd need a tooth removed. Knew that was coming (actually, I was warned that that was going to happen about forty years ago, it's a baby tooth that never had a permanent tooth grow to push it aside, we knew it was gonna last about this long at best). Oh well, two out of three medical visits being good news is pretty good, in this business.

My neurologist-cum-G.P.-cum-acupuncturist said that my leg weakness was about half nerve damage, half "you're out of practice," so get some exercise, dammit, you wanna be in a wheelchair 100% of the time or what? Well, the answer is "what," obviously. Besides "no lifting weights," his suggestion was to do any exercise rather than no exercise, so there we go.

'Course, my "walking," and that's in huge air quotes, "walking," even with the walker, is pretty wacky right now. Part of the problem is that I'm actually getting sensation in my legs. As well as full-on numbness. As Mr. Spock would say, "Fascinating." And, it really is unusual. I'd find it entertaining, if I wasn't concerned that I'd fall over at any second. Except I don't, somehow.

This is one of the damnedest things about this phase of the disease—false alarms. "Urgency," as the turn of phrase has it. But when the time comes... no, nothing urgent about it. "You're going to fall over, any second now." Except I don't. Somehow.

What an interesting adventure, it is... To be confronted with "This is just a sensation. There is no 'truth' in it. It is just a sensation." To feel with absolute certainty that your senses are reporting something completely true to you, and then a manifestation (or lack thereof) shows with absolute certainty that said sensation wasn't "true." And I get the converse, too... A sensation that "there is nothing happening." And then I'm shown that there was/is something happening. One sensation is false, one sensation is true.

Is the lesson "There is no false, there is no true, there just is ... is"? Well, interpreting this as "I can't trust my own body" is more depressing and doesn't extend in its Zen-ness to the rest of the world...

Or perhaps the lesson is... eat the strawberry.

Taking what you can get

Man, ran headlong into "can't do that anymore" today. I used to be able to run cables from monitor to computer. Apparently, I can't any more. Well, I sort of can, but boy, is it expensive--in terms of what it does to my being able even to walk around the house. Every time I stood up today, I wondered whether I was going to make it all the way up and stay that way. Who knew that getting on the ground under control was so difficult. And that simply sitting on the floor was so difficult. And that arranging your legs manually--quite literally manually, with your hands and arms, was so difficult. And costly. So many once simple things are so very, very costly.

I had to drive to two different big-box stores today to find what I thought would be an easy purchase. The driving was easy. Walking, even with the walker, from the parking lot to the inside of the store... that was hard. Really hard. To add insult to injury, nobody had what I needed. I got a sort-of workaround at the second store, which doesn't work around as well as it needs to. I'm going to have to go again to computer stores tomorrow. After going to the dentist. Man, the fun never ends.

I wanted to get this finished before my wife got back from ComicCon. Not like I didn't want her help, nothing like that, but I wanted to do it for her. A gift: making the studio better for her.

Well, she's gonna have to help me anyway. Pushing me around various computer stores to get cables--and it's going to have to be pushing me, because the walking is fading very, very rapidly. Pushing me around computer scores, after going to the dentist. (She's got an appointment too.)

Not as romantic as I had hoped, this "prepping the studio for her."

Well, at least I will (probably) be able to drive us to the dentist tomorrow.

You take your romance where you can get it, I guess.

At least the bloody box works. Not as well as I would like, but it does, mostly work. And I can still walk. Slowly. But I can still walk.

Again: you take what you can get.

Enjoying the ride

Oh, what a week, and the week ain't even over.

For the first time, I fell down and hit the ground; my left leg just collapsed under me. When that happens at home, I'm near enough a wall or something to halt my fall, but this happened in a store. I controlled my landing surprisingly well, but my head hit the corner of something. No structural damage, only a few drops of blood shed, but it really pranged the muscles connected to my jaw so that opening my mouth is nasty painful. That's been subsiding, it'll be gone in a few days (I think).

The list of what's malfunctioning seems to be growing, both in scope of malfunction and number of "issues," let's call them. Same thing's happening to my seventy-nine-year-old mother, for different reasons, she doesn't like it either. But, I'm taking a new tack in the meet-and-greet of these new "issues." I've had several brushes with mortality, in my day. Big earthquake. Car-related adventures, the most spectacular of which was a seventy-MPH spinout into the center divider of a freeway (Again, humor you can't write; the car started skidding, and the thought that immediately came to me was "Turn in the direction of the skid, they said in Driver's Ed... but they never said what 'the direction of the skid' meant.") And each time, I had exactly the same reaction: "Well. This is interesting." I quite literally enjoyed the ride.

And I think what is called for is precisely that. If I can look the Grim Reaper in the face, even when he's not reaching for me but simply standing there, and say "Hm. So that's what he looks like. What a ride!" why can't I enjoy the ride of the neurological failures? Right foot and leg below the knee goes into dental-grade numbness, from time to time; honestly, it really is interesting, the wild sensations (and non-sensations) you get from it when you try to walk on it. There are other failures that you definitely don't want to hear about, and they're hardly "fun" to deal with, but they certainly make for an interesting ride.

So I can't do what I planned, on day X, because I need to sleep instead. So I can't do what I used to do, with activity Y. So I can't go up a stepstool. Or carry that. Or move that. Or walk or stand there.

And as to "fixing" things? Doing something that makes the malfunctions back away, or stop? At the moment, that's not on the menu, as they say in the restaurant biz. (I'm still seeing all of my caregivers, but their best efforts at the moment aren't erasing these symptoms.) So let's not mourn the loss of something that couldn't be made mine.

Work with what I got, at the moment that I have the energy to work at all, and enjoy the ride.

That's hard enough.

If all I do is enjoy the ride... hey, at least I'm having some fun--and more than I would have if I was concentrating on the failure rather than the fun. And, although this is hardly theraputic, wallowing in passive-aggressive, it is kinda funny...

My best revenge against M.S. is enjoying the having of it. Not enjoying the malfunctions... but enjoying the ride.

Humor like that... I need to write.

Fire and change

An interesting turn on the road.

Something has changed. Don't know what. Something may have come unstuck. Don't know what, or how.

Rather than dive into an omphaloskeptic spiral, I'm just going to hold on and see where the ride takes me.

An interesting post on Tiny Buddha talks about the fear of leaving a secure job when the risk feels scary. No, I'm not thinking about how it applies to my employment... I'm thinking about how it applies to how I've been pretending (yes, let's be honest, pretending) to cope with the M.S. journey.

The way I've been traveling this road... has been wrong. I don't know exactly how, but... I haven't been suffering just from the physiological changes, but from the way I've been traveling the neurological highway.

And that has to change.

And I need to not be afraid to leave the comfort (Right. Comfort. Hah!) of the way I'm traveling the road.

I don't know how to do that, either. But seeking "doing" isn't the right road, either. I would have found that long ago.

But this is the Fire season. And I just got a very interesting treatment to my Fire element at the acupuncturist: metaphorically, it's sweeping the ashes out of the Fire so it can burn better.

I get that every summer. That's always made a big difference. We'll see where it takes me, this year.

Big entire-life changes that can't be made because they're just too big to change all at once in a single shot... can be made indirectly, by making small changes. Pushing the first domino, as it were.

I'm not exactly sure which is the first domino... but I'm sure, if I listen, it will call to me.

So this is where the neurological highway is taking me right now, with my panoply of ever-changing vexing corporeal malfunctions and all. As one character loudly proclaimed in the movie Andromeda Strain, "Hell of a way to run a hospital."

Out of the mouths of babes...

I was called to the school at which I teach, this week, to take care of some Tech Stuff.

While I was there, I ran into one of my students from last year. I asked her how her summer had been, so far.

She said, thoughtfully, "Eventful."

Even though I've spent a lot of time this summer dealing with fatigue, and the Not Being Able To Do As Much As I'd Like polka, I've gotta say...

"Eventful" does cover it pretty well.

Giving up? Or not? Or both?

I seem to be piloting an odd course between giving up and refusing to give up.

My ability to control my legs is deteriorating. My doctor says I'm not exercising enough. Fine, I won't argue with him... but the action of walking to the garage to look for something, then to walk up the four steps into the house and walk back to a chair, is very difficult. The brief work that I did yesterday, to go up two steps on a step ladder and replace two tiny light bulbs, cost me so much that I had to lie down for hours. And he wants me to exercise? What's that gonna cost?

And yet, I refuse to obtain a big-wheel push-yourself-around-with-your-arms wheelchair. Today my wife pushed me in my walker/transport chair from the car to the restaurant, but I walked myself to the restroom. No big "Dammit, I'm gonna do this myself" determination; just simple, quiet, "No, I'll do it."

I see my acupuncturist every week, on Tuesday. He restores and renews my energy. Briefly. At the moment, I'm doing OK; but I expect to have faded by this weekend... 'cause that's been my pattern for months. I'll be seeing my herbalist in a couple of weeks. He said, the last time I talked about my vague despair-like fog, "We never give up hope here. Take your herbs, stay squeaky clean on your diet, and keep hoping--that's all you have to do." Well, two out of three, I'm doing pretty well with...

I have energy now. I'm going to spend it on creativity instead of on schlepping, even to the small amount of schlepping I'm able to do. I still have ideas--and good ones. Drive, that's what I'm missing. And, I miss that drive, the unquenchable never-ending drive that used to be the sine-qua-non of my expressing-creativity lifestyle.

But, as the Zen saying goes: eat when you are hungry, sleep when you're tired. Well, I'm rarely hungry any more, and I become tired for no apparent reason all too easily.

But I just ate and I'm not tired--at the moment, at least. I have the energy to do something creative--for the moment, at least.

Perhaps there's a Zen saying buried in that, somewhere. If I figure it out, I'll pass it along.

Two words

It's interesting, meeting "Well, I guess we can't do this, right now" face on. It has been coming at me in generalities, and those are so easy to deflect, to deny. Specificities, you can't hide from.

I have a quite lovely light in my studio. It is full of little lenses, and little 12-volt bulbs. It casts lovely light, and looks lovely as it casts the light.

Well, the cute little bulbs went the way of all flesh (of all "filaments," in this case), and they needed replacing. I'm tall enough to get on tiptoes and reach up and pull dead bulbs out of the fixture, but I'm not quite tall enough to do that and insert them. I need a step ladder. Not unreasonable tool to need, you'd think.

And it is (was) a very-easy-to-use step ladder. And I only needed to go up two steps.

I had no idea how hard that was going to be. I had to get a six-foot piece of bamboo (which I keep near the front door and occasionally use as a cane, outside) to act as a stabilizer for the mere going up and down. And one hand on the cane, one hand on the ceiling to steady myself, and that leaves one hand free to replace the bulb ... oh yeah. A little under-resourced, it would seem.

It took probably ten minutes to replace two of the eight bulbs. Then I had to go lay down for ten minutes--just sitting down wasn't enough. And now, simply walking to the kitchen to make tea, I can tell that I've really pushed my legs--and myself--a lot, today.

I don't think I'm going to try to replace the other burnouts. I'm going to have to ask for help; clearly, I'm going to need some help on this project. Fortunately, my helpers won't have to expend nearly as much energy as I did. (At least, I hope not.)

So, what feeling am a left with? Defeat? Actually, no... Embarrassment, because I have proven that I can't do things that I used to be able to do? Eh... maybe a little sorrow, but not embarrassment. But only a little. Dismay? That I can no longer control my environment, my home, my in-home workspace, the way I used to and that I had hoped to again? Well... maybe a little. But only a little. Determination? To overcome these limitations and succeed nonetheless? That I can tell you clearly... nope.

What do I feel? Two words: "Oh well."

I don't know everything there is to know about the paths to enlightenment; but I'm sure that those two words are not a mantra that'll get me there quicker. The Buddha saying "oh well" and me saying "oh well" are, I'm sure, different.

I am a wordsmith. I have a huge working vocabulary, and absolutely no fear of dictionaries. And "oh well" is the best I can come up with.

Some well of emotion is definitely not getting plumbed, here.

Crickets, kazoos; Eeyore

Vacillation between ... extremes? Dualities? Perceptions?

Wednesday was a day of "I can." I wrote music. I went to a friend's superlative (can't really italicize/emphasize that word enough) lecture on science fiction and mythology. Talked a little bit to his wife about another project they're undertaking, the lessons learned from which could very well be invaluable to a project I've been thinking about, quite literally, for years. Which could be done from my computer and which wouldn't be impaired by any of my physical challenges.

Thursday was a day of "I can't." No energy. Didn't want to leave the bed. Body was malfunctioning as ever, but yesterday it was harder to deal with, somehow. A very long list of "Haven't we been working on that? Hadn't we been making some headway on that?" issues that all of my medical folks have been directly confronting, and it was though they had been doing nothing about them. Ever. Extra darkness added by projections about "Is insurance gonna pay for a procedure that I've been postponing but probably can't any longer... If I can't stay out of bed long enough to write Christmas music, am I gonna be able to deal with 9th graders in September... Summer has always been my 'big accomplishment' season and so far I've accomplished nothing... My wife has never been happier, she may very well have found her true calling in life and she's so unbelievably good at, and radiant because of, what she's doing; and I refuse to let my condition put a stop to that but I can't possibly be helping her..." Oscar Ichazo calls this mental noise-making chicharrero, the sound of a cricket chirping.

It's also a word for someone who makes kazoos; which really puts this mental rattling in its place. But whatever its English meaning, you can be sure: as the saying goes, it don't make you smarter.

Today, so far, is a day of "maybe." Enough of the body works well enough to do what I need; at the moment, at least. The crickets are silent; at the moment, at least. I got out of bed and came to the computer to do this. While at the computer, I'm going to work on some music.

We'll see how it goes.

Which simple philosophy, honestly, needs to be not so much a cry of despair as it has become, recently. I normally sound like Eeyore when I say that... Eeyore, the ever-so-cheerful. "I suppose they will be sending me down the odd bits which got trodden on. Kind and Thoughtful. Not at all, don't mention it."

And as the saying goes, that don't make me smarter either.

Strange resonances

Today, I was channel surfing ("relaxing," we delude ourselves by calling it) and came upon the Lord of the Rings. Frodo was struggling alone up Sauron's Road to the Sammath Naur on Mount Doom, and he fell down, completely exhausted.

And he had a vision, of Galadriel holding her hand out to him; and she said, "This task is appointed for you, Frodo."

This task is appointed for you. Did I think she was speaking to me? Did I think God was speaking to me, through the good offices of a Peter Jackson movie? Heavens, no.

But I heard it. Very deeply.

And I got up, and did some things about the house I've been "meaning" to do for days. And haven't. And yet, I did them.

One of the things I wanted to do involved a step ladder. I made it up to the bottom step; clearly, that was not a good idea. I got off (safely) and put the step ladder away. And yet--and this is the most important part--I didn't "wig out" at having been "defeated."

This has been getting to me a lot, over the past month. Over my life, it has been easy to say goodbye to things that I was done with. But now, I'm constantly confronted with "Do I really have to say goodbye to this?" to all sorts of things I always thought were so... simple. Things that I was not at all "done with." Except they're not simple, any more, and being slammed to the ground yesterday as I tried to do something which formerly would have been more than simple enough, was certainly a wake-up call for being "done with" some things.

Saying "I'll just say 'goodbye for now' to keep the door open" is a delusion. Worse: it's a lie. It's not saying goodbye at all.

There's no reason, of course, that one can't say "goodbye" but then "welcome back," if such opportunity presents itself. "Goodbye forever" is a much of a non-release as "goodbye for now;" you're attaching to the loss, rather than the thing you're pretending to say farewell to.

But this is the task appointed for me.

Another resonance: A question asked by a friend of another friend, was related to me: "When will he start walking again?" The person telling me this story suggested that perhaps the real question was "When will he get rid of this M.S.?"

Yeah, you may laugh. But that's a very "Science of Mind" question. It's not just Science of Minders that would ask such things; an acupuncturist used to ask her patients, "Why did you give yourself this disease?"

Science of Mind is, in some ways, like medicine-friendly Christian Science. If you have a headache, meditate. If it won't go away, take some aspirin--what are you, stupid? Try harder next time, but take for now the road that you need to take for now.

A Science of Mind saying is, "As a man thinks, so is he." Clearly, I need to change my thinking. Lord, I've been saying that for months--years--the entirety of this blog. Also clearly, if it were that easy, I'd have done it by now.

But this is the task appointed to me. And it's time to change.

And I'm going to go write some music. I can't use step ladders. I can't take heavy things out of my car. I'm really not sure how much longer I'll be in a walker, rather than a push-it-with-your-arms wheelchair, I'm starting to consider getting one of those. I need to learn how to ask for help; also something quite new to the Independent Adventurer me. But operate a keyboard and a mouse--that, I can do.

So that, I'll do.

What an odd thing to be puzzled by: to find saying "I can only do what I can do" to be limiting, and uncomfortable. Especially since before I started walking the M.S. highway, I was only able to do what I could do.

Life's lessons

Another "oh my" day.

Drove about three hours today--1 1/2 there, 1 1/2 back--to pick up a piece of equipment. I drove a route I used to take quite regularly to play at a church in Orange County. It's been a long time since I took those roads...

Anyway, made it there with no problem. Made it back with no problem. Did a little thinking on the way down, had some interesting ideas. I might have talked about those, but...

After I got home, I rested for a couple of hours, then tried to get the equipment out of the back of the truck.

Tried. Almost failed--spectacularly.

Thank God it didn't break when it hit the ground. (And that I didn't break when I hit the ground.) Much of the reason it didn't was that I controlled its fall. But its fall controlled me, pushing me off my feet, and I hit the ground hard. And was pinned underneath the equipment; not heavy enough to cause damage when it landed on me, but it kept me on the ground.

Didn't take more than a minute and a half to get up, extricating myself from under what had fallen on me. Took about three more minutes to get it back on its wheels and pushed into place in the garage. Physically, at least, neither of us seem the worse for the adventure, although I hit my sacrum hard; I couldn't roll backwards, martial-arts-style, because the equipment had fallen on my legs and had pinned them, and all I could do was try to land softly in a lump. (Which, I must say, I did better than I had imagined might have happened.)

This is only the second fall I've taken since The Diagnosis, but the only one that hurt. And boy, did it. The whole event kinda took away what little wind was in my sails; oh, I had had such wonderful plans of productivity for the afternoon. This is pretty much all I had the energy for.

And just walking around the house isn't doing so well, either. Takes between thirty and sixty seconds after standing to make sure I have enough control to walk; although once I start walking, if I have enough walls, I'm OK.

I'm going to drink a whole lot of water this evening, and take some aspirin, and take it easy. If I'm lucky, I'll be no worse than sore tomorrow.

Could be worse, I guess. Had I been 80, that would have been a broken hip. 'Course, had I been 80, I would have had enough sense not to try to take the damned thing out of the back of the truck by myself.

The changes I'm undergoing, on this M.S. road, I'm still dealing with.

Maybe I'd better start dealing with them better.

I've always said, when life wants to teach you a lesson, it taps you gently on the shoulder. Then roughly. Then it hits you in the back of the head. Best you should learn the lesson it wants to teach you before it escalates to "18-wheeler."

Well, life just tried to teach me a lesson by knocking me to the ground and pinning me under an equipment rack.

Probably, I should listen, huh? Lord knows I don't want to experience the next attempt to get my attention.

Normal = triumph?

Oh my, what a day.

I thought I wasn't going to be able to get out of bed. I awoke around 8:30, feeling horribly sleep deprived/jet lagged. I stayed in bed at least an hour, trying (unsuccessfully) to get back to sleep and maybe recover enough to do anything.

I have no idea how, but I got up, drove myself to the high school where I work to pick up some stuff, ran into a colleague, drove both of us (I drove!) to a local Vietnamese restaurant where I ate an entire sandwich and a side-order of fries—much more than I usually eat, lunch, dinner, or any time. Didn't order it, but found out they had ginger rice pudding that was non-dairy (that's definitely on my list for later).

Drove us to the office-supply store to pick up some stuff, drove him back to the school, drove myself to two banks to clear some business, then drove myself to a pharmacy to pick up some stuff, then drove myself to Trader Joe's—well, it was on the way home, I'd have to drive right past it, I figured I might as well. Got my wife a yellow rose to adorn her work desk.

When I got home... I could barely walk. I can still barely walk. It's not so much that my muscles are tired, although they certainly are, but it feels more like my nerves are tired.

I have no idea how, or why, I was able to accomplish so much out in the world. But I did.

This whole walking thing... I don't like it, any more, I get really tired, really easily. I could, I suppose, move to full-on wheelchair-bound, but I'm positive that'd be even more inconvenient than being walker-bound, so I keep walking.

But I did a whole lot of walking today. But, somehow, I don't feel anything. Not "Hooray! I did it!" Not "Man, that was expensive. I don't know whether I want to do that again." It just... happened. I noticed the difficulty, I certainly noticed the cost. But I felt nothing. No triumph. No nothing.

Even when I was non-walkerbound, I would have felt at least a little "Well! I sure got a lot done today, didn't I?" elation. Now... nothing.

Was it because... in my pre-M.S. life, it would have been... normal? Unremarkable?

But it was remarkable. And I remark nothing.

I did get myself something to celebrate... a tiny treat, just because. Instead of indulging myself tonight, I think I'll just drink a lot of water; being able to walk to the water cooler is enough of a triumph, and enough of a celebration.

That I can still walk to the water cooler, even after walking so much that I can barely walk at all.

And that, I suppose, is enough of a triumph.