Monday, April 29, 2013

But it still...

Had a good visit with my MD/acupuncturist earlier today. I told him about my upcoming (new!) physical therapy session tomorrow, he was very happy about how they're approaching things. And, I should also add, approaching me.

I got a B12 injection today. Usually, I feel nothing (except pain) from such things, but today I actually feel the exhilaration, an "energetic renewal," that people often report from such things. A nice change, from the "it hurts and I can't tell a damned bit of difference" that is my usual reaction to these things.

But it still hurts.

Oh well.

Last weekend, I went to the school at which I used to work; the chorus and orchestra performed one of my works at the Spring Music Concert on Friday night, and Saturday the school hosted a "reunion day" for many classes, one of which was mine—35th reunion!

For a long time, I was the only one of my class who was going to be in attendance, but out of nowhere another '78er came by... one of my best friends from that class, I was very glad that he made it, and we had a wonderful time talking to each other.

But, it was very interesting being there, at that school, again, given what happened a year ago (wow! It nearly has been a full year!), the maelstrom of things that, to spare you a very long list of very gory details, marked "Time for you to leave."

And many "data points" from many sources have definitely solidified that into "Oh dang, was it ever time for you to leave." And last weekend made that clear in several, very interesting ways...

But it was nice to see my friends—and I number many of my former students among my "friends." Even made a couple of "oh, we SO gotta do this!" agreements for visits to the Taiwanese tea emporium. Plus, made a few of those agreements with former students who are now over 21 for getting together at some Japanese restaurants I know of, places that have really, really good sake.

A time to let go, and a time to reconnect.... and again to let go, but this time, with luck, with more smiles.

And with luck, my B12 shot will stop hurting before I see them again. No side effects, never side effects with 1,000mg B12 shots!

But dang, it still hurts.

Friday, April 26, 2013


So I joined an "MSers ask each other questions" group on Facebook, and I'm seeing an interesting pattern...

  1. Nobody says "[Treatment X] made me feel better." Nobody. It may be that a few people find to the contrary, that they have indeed improved... but from what I hear, they are a minority, and they certainly speak much less loudly than the people who experience no improvement.
  2. Lots of people say "[Standard DMD] didn't work."
  3. Lots of people say "[Standard DMD] didn't work and it made me feel awful." And many add to that "Which of the others should I try?" (I expect the next thing that will happen will be... "See what is mentioned in step 3.")
  4. Everybody's description of their symptoms is different. Very different. Suffering is in common, but exactly what's at the forefront of the suffering... is unique to everyone. There are some common threads... "bladder doesn't work right" seems a tragi-comic favorite--but how things malfunction is unique. "A body part feels uncomfortable" is also nearly universal--but which part, and how, is unique.
  5. And the words that seem to rise to the fore most often, and most ardently, are ... "Do any of you have any ideas about how to help me?"
So, and I add the caveat that none of this is a "scientific" survey of the state of the MS Community of the Afflicted, but the patterns I see here, and elsewhere on the web, are
  • The "official" drugs don't work. They don't work. I'm not talking about in-a-test-tube or in-a-mouse highly controlled and cherry-picked laboratory data... As far as the people who take them are concerned, for the vast majority of them, as far as they can tell, they just don't work. And just to clarify things, by "work" I mean "Make you feel better and make the disease go away, as far as you the sufferer are concerned." Not in the lab. In the patient. If the patient couldn't stand up, they're better when they can. If they couldn't control their bladder, they're better when they can. Very simple.
  • In fact, nothing works. Now, to be fair, to say "nothing works" may be a slight over-generalization... I know from personal experience, and personal contact with other MSers, "nothing works" may not actually be the "right" way to describe things, for every patient, in every case. It's not that "nothing works," it's the same basic idea that "one size fits all" actually means "one size fits all improperly." Something helps each person, somehow. Something makes people feel better... but that "something" is different for every "sufferer." 
  • Everyone's experience of "life with MS" is completely unique to them.  They experience it physically, intellectually, and spiritually, completely differently. Is it any wonder, then, that "one cure" is eluding everybody?

Then again, there's life...

  • No "anti-aging" or "life-extending" drugs work. None of them. I'm not talking about in-a-test-tube or in-a-mouse highly controlled and cherry-picked laboratory data... As far as the people who take them are concerned, they don't work. (Here, I don't count "You had diabetes and took insulin and your life was extended," I'm talking anti-agapic, realm-of-science-fiction-and-faantasy, actual life-extending drugs, despite what people may claim about the magic of ginseng and reishi mushrooms.)
  • In fact, nothing deliverable via pill, injection, or anything else, works to alleviate the suffering that's part-and-parcel of simply being alive. (Buddhists, I know that the dharma says that attachment causes suffering, but that's not part of this discussion.) Now, to be fair, to say "nothing works" may be a slight over-generalization... I know from personal experience, and personal contact with other people, "nothing works" may not actually be the "right" way to describe things, for every person, in every case. It's not that "nothing works," it's the same basic idea that "one size fits all" actually means "one size fits all improperly." Something helps each personsomehow. Something makes people feel better... but that "something" is different for every "person."
  • Everyone's experience of "life"... is completely unique to them. They experience it physically, intellectually, and spiritually, completely differently. Is it any wonder, then, that "one solution" is eluding everybody?
Well then, it's a fair question... So what does that mean we're "supposed to" do?

Exactly what we're doing. Talking to each other. Listening to each other. Trying things that have a track record of working (at all, and per-patient-repeatably), that are completely customizable to each individual (because if there's anything we as humans can agree on... as much as we're all the same, we're also very much all different). And don't give up. "Take a break," yes... but don't give up. 

And laugh. No side effects, there! And besides, as the character Jackson said in the movie Andromeda Strain... "Hell of a way to run a hospital."

Wednesday, April 24, 2013

Can't beat that

And now for something completely different:

Yesterday, I connected with a new physical therapy studio. My wife found it on the web somewhere; unlike my other Health Care Providers, it's a long fifteen minutes away from home (and that's if I don't make the signals the right way); and unlike many places I've been recently, the doors to things like the building and the bathroom seem to have been set up with wheelchair-users in mind. The doors don't push back at you. They just open, or close. But they don't push back. As fun a zero-g-simulation as such things might be, on paper... Trust me, they're not always. If ever. So, two up-checks in their favor, immediately!

The "initial visit" assessment outstripped my experience with the therapy company my insurance company sent me to a couple of years ago (I quit going because it wasn't worth the money they were charging me and not reimbursing me for, I have no idea why, plus midstream their rates went up and the company rebranded, not a winning combination). They seemed honestly distressed by the logic of my explanation of why I have nothing to do with Western MS drugs (short story: it's not possible to tell you whether they've helped you or not, given the inherent pseudo-random variability of MS itself; and the only thing the manufacturers do promise is that you're definitely gonna feel awful. On which promise, I've heard, they deliver 100% of the time). 

But, one thing they did suggest, which I think is worth sharing with my fellow MSers, is that there are such creatures as "neuro-bowel" doctors and "neuro-urologists," people who are specifically interested in the neurology of those systems and how to assist people who (like many of us) have ... issues... in those areas. They told me to ask my own doctor first, but that if any questions arise, just call the MS society and they'll help. So, if I can connect to one of those folks, I'll also report here.

The physical-therapy person gave me some great tips just on standing up and sitting down; very Alexander-Technique-esque, in many ways. One of her tips for me was to keep my back straight when I was doing that... My own investigation/experimentation suggests that the improvement in part is related to improving mechanical efficiency; when the back is rigid, inelastic, the "standing up" energy is more effectively put to use in standing up, rather than dissipated by the "bouncy" rounded back.

And for those of you who might struggle with the whole "make your back straight" instruction, here's my own personal favorite trick: don't think of your back at all. Move the top of your head to be as far as it can be from the floor (when standing) or from your sacrum (when sitting). "Straight back" happens automatically. But the "visualization" road to the straight back is much simpler, plus it has "unintended side-effects" of straightening parts of your back that actually are your back but that you may not have thought of as being part of "your back." "Get the top of your head as high/far as it can go" fixes the back below the neck, and all the bits of the neck, and your head alignment on top of your spine. I've had vocal teachers and my kyudo teacher tell me that this way works (and some have asked to "borrow" that trick for their own work). As a choral conductor, I've seen it work on choristers of all ages, instantly and effortlessly. If you have spinal/neck issues, your mileage may vary, and if you're received specific instruction to the contrary, of course follow it! But if it's safe for you do do so, experiment with it... Who knows what you'll discover?

So, in a matter of days (perhaps weeks, depending on their schedule) I'll be on a new program, specifically designed for me, to address the issues I'm having here and now. 

Custom care; no negative side effects. Can't beat that in the MS game, can you?

Monday, April 22, 2013

Well, it was a day at the MD/neurologist/acupuncturist.

Some very powerful points, directed at my current spiritual/emotional challenges. The spiritual issues are as challenging as the neurological... at least they're addressable.

I read off the Litany of Stuff That Isn't Working. He noted something about needing to do some research on something he maybe maybe might suggest I try... non-pharmaceutical, a "food" thing.

Told me that morning headaches might be assuaged by a different pillow system. (Boy, that takes me back... home-improvement shows used to toss the word "system" about quite profligately, it's a word I haven't used except in the context of Deming for many a year, and never in the context of home-improvement hardware...)

As to the remainder of the List of Malfunctions... well, we didn't talk about them. I did, but we didn't. Because we've talked about them before, there's nothing to do about them. He understands (oh boy does he understand) but there's nothing he can add to the discussion that he hasn't already.

Tomorrow, I'm trying some physical therapy; we'll see if that does anything. I don't expect that anything will come of it, but heck, it's worth giving it a shot. More details when they're available.

I found an M.S. group on Facebook. Lots of encouraging photos, a great deal of "keep the spirit up" stuff. And, for those that it helps, I'm glad. The right tool for the right job, and all that... In our milieu, it's more correct to speak about the right medicine applied to the right people in the right way, and all sorts of miracles happen.

Encouraging me to keep my spirits up doesn't really work. "Don't give up!" the posters say. And nicely too. But they aren't really impeding my "giving up"-edness.

Frankly, I need results. I need to feel better. I'm not demanding The Cure to make my spirits go up, but dammit, I want to feel better. Write music. Laugh. Care about things. Feel better. My acupuncture treatment today was aimed specifically at addressing that... we'll see how well that works.  If that works.

Well, at least I haven't given up on that. Acupuncture has make a lot of things better... we'll see where this treatment takes me. Really, I haven't given up.

But as Flame Princess so eloquently said... I'm not having any fun.

Sunday, April 21, 2013


Something struck me last night, while I was doing the "medicinal herb" thing in the back yard under the stars... Hey, those things taste the way they taste... A little moonlight, to paraphrase Julie Andrews, makes the medicine go down. In the most delightful way.

But the thought that came to me was...

It's a damned strange existence we have, in the Here and Now.

But more than anything else, it's what the IT people would call "feature-rich." Our experience is full of the most amazing things, the most amazing experiences.

Yeah, my huge-air-quotes "walking," by comparison to what by-foot-locomotion used to be, ain't much to write home about. But dang, it is full of the most amazing sensations. (When I'm lucky, one of them isn't a face-plant on the floor. But, having hit the floor a few times, I can tell you now, that too would be quite an amazing sensation...)

So, amazing sensations, that have nothing to do with The Disease...

The sound of the birds. And the sounds of the people working on the house across the street.

My sixteen-year-old cat, "talking" to me, sometimes lying on me, sometimes wanting to be rubbed. The young squirrel who doesn't really want anything to do with me, but is clearly enjoying life running through the tree with soon-to-be-ripe fruit, chattering away as it scurries through the trees and across the top of the fence.

Shanghainese Xiaolongbao, crafted by an artisan, with the right kind of black vinegar.

Taiwanese tea, prepared and poured by an expert.

The moon. And its other "friends" in the night sky, the stars and planets and (again, when you're lucky) a comet.

The sun! And the wind, and the rain.

The smell of freshly-planted tomatoes.

And each of the changes we M.S.ers are going through, no matter what it is, is itself full of amazing sensations.

And the journey itself, from The Diagnosis to today, is rich with amazing sensations, experiences, even enlightenments.

Would I like to be able to not-air-quotes just-plain-WALK again? Sure, that would definitely make things easier. But walking or not walking, the experience is still the experience.

And it is... amazing.

Friday, April 19, 2013

Fluttering; synchronicity

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

Monday, April 15, 2013

Good place to start

Well, I got some answers from my Medical Team today, about the "I have to sleep all the time" that has been making a lot of the "What's Robert up to today?" decisions. Very often, what Robert is "up to" is "sleeping."

The bottom line appears to be: Things are getting repaired by the brain/nervous system in its "sleep" state, and the "sleep" process. This is what you need right now. Don't fight it. Go with it.

Sometimes, simply hearing that whatever state you're in (especially if you don't like it) actually qualifies as "normal," is surprisingly comforting. It's (whatever "it" is, right now) not something "wrong," it's something that's doing what it's doing in order to create "right."

So, what's there for me to do about it, I am very quick to ask. Do what you can to whatever you can do something "to," don't worry about what you can't do anything "to," and go with whatever in the body is trying to make things better, even if the body's choices are not what you were hoping for. Take your herbs. Stay comfortable. And, as best you can... live.

It's a good place to start, isn't it?


Sunday, April 14, 2013

Gifts and truth

Doing more of the "business of saying farewell." I just handed off to a friend of mine the package of commencement music, the very package that I've been using for the last ten of the forty years of doing this gig.

Everything is nice and neat in folders for each instrument, plus a nifty little notebook for the conductor. A package that I made years ago, not only to make it easy on myself to get ready to do the gig, but... well, just in case something happened to me, they could just take the folders and they'd be ready to go.

Go figure... After all, something did "happen to me," stopping me from doing the gig, didn't it?

Also today, I heard some stories about the place I used to work. Details aren't important, but damn, did I get out of there just in time. All I'll say is that if I thought my final year there was killing me, this year would definitely have finished the job.

Recently, a "gift of M.S." has definitely been facing the truth. Especially the truth of... this particular truth, I really do have to face.

The truth of being done with my forty-year-long gig. The truth of "It was time to say goodbye." The truth of "This here... this is the truth."

Now, there are truths about what my nervous system does or doesn't do, and there's a difference between "dealing with them" and "copping to them"... and as easy as the former may (appear) to be, it's the latter that's really necessary.

I'm definitely finding myself getting more practice at copping to the truth.


Not always pleasant. Oh, no.

But necessary? Yes. 

And that is the gift.

Wednesday, April 10, 2013


The "I'm done" continues; the implementation of being done, in particular. Rather than just diving over the railing, I've been, and am, contacting the people who are going to take over the "play the music" job that I'm not going to do any more. Talking to the organist about the oddities of the organ he'll be using, creating the folders of the music that the "pit band" will be using. Yeah, I know, if I'm really just "pulling the big yellow handle" to fire off the ejector seat, I could just leave this all to them, but my concern is for the kids and their parents not the institution, and having done this for so long and having gotten it down very much to a science... it seemed the proper thing to do.

In her very thoughtful response to my most recent post, Abby shared her own experience with the facing of "I'm done" in her own life; and part of what she shared was

MS is so much about loss and change.

That it is, that it is... but part of me wants to "push back" against one word: "Loss." Indeed there is, and in my own journey, plenty of it... but loss creates gain. They're on opposite sides of the same coin. The leaves fall, so the new ones have room to grow. The butterfly cannot emerge from the chrysalis unless the caterpillar... dies. The creature that is both the caterpillar and the butterfly lives on, the entity that exists between and within them both, lives on; but the caterpillar as the caterpillar has to die, because it's only then that the butterfly can be born. Grasping the truth of loss creating gain is one of the hardest things we (c'mon, "I") have to face... but that's as much the way nature works as what our bodies go through with M.S., with age, with... just being alive.

Look, let's (forget "us," let me) be honest here... Facing the passing of anything beloved is hard. Damned hard. The more precious it was, the harder it is. It's even harder when you're the one who is the only one who can "pull the big yellow handle," the EJECT lever... you're the only one who can pull it, you're the one who has to pull it.

But once you do... you fly.

So yeah, you pull the big yellow handle, you fly, but you still need the parachute. The same it is with us who travel the Neurological Highway, we still need out assistive-whatevers to keep us operating in the world as it is, we still need each other to help us make it over the bumps in the road. But that's our ... OK, my ... big challenge: Really come to terms with pulling the handle. And actually pulling the handle.

So: Face needing to pull the handle, cop to needing to pull the handle, and pull the damned handle, unapologetically... because, c'mon, if the airplane is on fire, out of control, and about to explode, it's definitely time to pull the handle.

So... Let it go. It's time to leave. Pull the handle.

And... fly.

Monday, April 8, 2013

I'm done

Another "art imitates life" moment... First, some context... a "prelude," as it were.

Sunday, I attended a concert by a thoroughly delightful and musically amazing group, Red Car Trolley. The performance was held at the Church of Our Savior in San Gabriel, California (interestingly enough, the burial place of George Patton—yes, that General George Patton). They performed madrigals of many times and countries, including a setting of the Shakespearean text O Mistress Mine by yours truly. (I'll share a recording if I can put my hands on one; and another performance of other music, including both U.S. and world premieres, will come to pass in May. Details to follow!)

After the concert, I was given a tour of the organ from the organist-at-the-console's point of view—not a "crawl through the chambers" tour, but an audio "show and tell" of different divisions and specialty stops. A very lovely instrument, featuring some work done by Manuel Rosales, the same person who built the organ spectacularly adorning L.A.'s "Walt Disney Hall;" this church's organ also featured some very extravagant digital additions from Rogers (organ buffs will remember this company fondly as the makers of "Black Beauty," Virgil Fox's touring organ).

The console:

The organist very generously allowed me to give it a try. And, just trying to get onto the bench, I nearly fell over/off. Didn't, but nearly did. But most telling to me was that I usually "connect," very much on a spiritual level, with the instrument. But not yesterday. Perhaps it had something to do with almost falling off, perhaps it had something to do with the bench being adjusted for someone who was very clearly not me, but it was very strange. I couldn't connect with it. Could. Not. Connect with it. And that has never happened before, even on organs immensely more complicated/larger. It was very, very strange... But I could tell—that non-connection meant something. It was indicative of the end of the "organist" era that I had always known. The organist that I had always been, was definitely, definitely... gone.

End of prelude... The "console almost-incident" was just the "warm up" for a call that was made to me this morning. One of the administrators at the school I used to work for called to see if I might be playing for commencement? Which I've been doing for the past forty years. And, sadly, having spent no small time addressing this question in consultation with very dear, trustworthy, and very wise friends (one of whom has known me for more than thirty years), and having very nearly fallen spectacularly off the bench of the instrument that had always been "mine," that I had always loved so very much... I said "No." Specifically, my answer was "I can't." Which is very true, especially in the context of "almost falling of the organ bench" that I just barely avoided Sunday, even more "especially" since the organ I would have been playing is even trickier to get on and off and to operate than the one I nearly fell off of.

But I needed to come full-on to face a hard truth... which brings me to an "art imitates life" moment, from (of all things) the animated series Adventure Time. Finn the Human (one of the two central protagonists) tells Princess Bubblegum that he wanted to love her, and he tried to love her, and she wouldn't love him back, and at this particular juncture, he thought that she was trying to reconnect with his emotions in a way that had already been tried and failed, and was now behind him... And Finn said:
I'm done. I'm ... done.

And that was the truth that I needed to face. I've been doing this gig for forty years, a gig that I've always enjoyed; but the truth that I really needed to face, was...

I'm done. I'm ... done.

And that was hard. Is hard. It hurts. I'm sure I've still got processing to process. But the hard part was copping to the truth. That... I'm... done.

And my acupuncturist at the end of today's treatment said that my pulses were better than they've been for years. Those were his exact words: Better than they've been in years. So, clearly, facing this truth was very, very necessary.

And hard.

But necessary. Not huge-air-quotes "tragically" necessary. Just necessary. In its own way, blessedly necessary. Because... it was time. Time to just... let it go.

In the five-element acupuncture system, the Large Intestine is paired with the Lung. Before the Lung Official can connect to the pure chi of the heavens, you need to avail yourself of the Large Intestine official... the "Drainer of the Dregs." If you don't let go of the old and crusty and stuff you're completely done with, the stuff that you're done with, you can't connect to the pure chi of the heavens.

And making that connection starts with the truth... Which is, in this particular instance, this specific circumstance, this..."this," this "now"... The truth is:

I'm done.

Saturday, April 6, 2013

A gift from...?

Now, here's a gift that I'm very grateful to have been given. By whom, I'm not sure, but I'm glad I got it...

Last night, and this morning, my large-air-quotes "walking" was different. Worse, maybe, than it often has been.

My large-air-quotes "walking" is definitely a "moving target." It's constantly different. One day better, one day worse. And here's the gift: that's how I perceive it.


I don't "go down the rabbit hole," as they'd say in The Matrix, descending into darkness and panic about "Oh crap, it's getting (shudder) worse? Is my walking coming to an end? Are these the (forgive the metaphor) first steps to never walking again?" I also don't go down the rabbit hole of false hopes, the days that the walking gets better--which does actually happen, every once and a while--thinking that "The recovery I've heard about, that I've promised myself is oh-so-true, it's here!" Only to be disappointed the next day when the pendulum swings the other direction (but, with luck, doesn't knock me over).

No... I think "Well, that's different."

And that's just about it.

Now, I must confess, I'm very paranoid about things like "making plans" and answering questions about "Do you think you'll be able to do xyz?" There's a thin line between prudence, terror, and denial. Actually, when you see the line, and cop to its truth, you can see it get much thicker, see its true thickness; but there really are times when terror and prudence overlap.

At least, I console myself to think so... I'm sure there's a line there, too; but I don't see it yet.

But, for the moment, I'm grateful to not freak out at small-difference-after-small-difference changes to my large-air-quotes "walking." It's not "denial," a very dark place that I'm way too familiar with. It's just... well, it's different. Today. Sometimes it sucks and is different, sometimes it's better and is different. But first and foremost... it's just: different.

Besides... Things going as they're going, continuing being able to describe my "walking" as "large-air-quotes walking" means that I actually am able to air-quotes-walk.

Which means I don't need a walker in my house. I'm still able to go up and down the steps into and out of the house (how fast doesn't matter... that I can, does). I can still get into and out of cars, and chairs of all kinds (including toilet seats), pretty much under my own power. All those things take a while to do, they're not always easy, I too often very-nearly-collapse when I'm doing them (which is definitely scary when it happens over blacktop rather than a soft cushy bed), but when the difficulties present themselves, I don't go down the rabbit hole of instantly presuming that It's Over.

And that, my friends, is definitely a gift. Where it comes from, I don't know... but I am definitely, definitely, thankful for it.

Friday, April 5, 2013

What's "between"

Man, what an amazing evening. A vegan dinner with some dear, dear friends... Friends who, besides their amazing artistic talents, also have quite the amazing connections to just-plain-wisdom.

One of them had the most amazing things to say to me about my current travels on the road of life, the Neurological Highway being only one lane. Not even as significant as a "lane"... perhaps, at best, Botts' dots. And not even a whole lane's worth... maybe, just one or two.

Our conversation last night echoed the conversations that we have had, gentle reader, about the spiritual journey facilitated—yes, facilitated, and not just "facilitated by," but a journey that I was compelled to take—by my "neurologicals."

My spiritual "spelunking" into places that I hadn't explored nearly as much as I should have, has been very much removed from of a self-imposed, self-constructed, cave... and into the Light. Yes, "capital L" Light.

Issues within my former workplace that were, due to the dissonant intersection of my own karmic issues with the unique issues of The Enterprise—dissonances that had been weighing horribly heavily on me—have simply been taken off the table by my disability. Those problems have officially been transformed into "Not my problem any more." I still gotta cop to the truth of what I contributed to the dissonance, and how I felt about what happened no matter whose "fault" it was, but what they did, what they're doing now? Not my problem.

Many things that I kinda... well, more than "kinda," to be honest; it was keeping them in the "kinda" state, when the truth was "definitely," that was causing a lot of problems... Anyway, many things that had come to the "time to say goodbye" point have been forced to, and past, that point. In part, because the "to be honest" thing was also forced upon me. By The Disease? No, The Disease doesn't exist as a thing that "does" anything. It's not real, and never has been real; it has never existed. By... the Universe? Perhaps... that's getting closer, at least... By the challenges that I had requested from the Universe, to put me in precisely the place that I needed to be?

I'm going with that one. Because issue upon issue has had within it the seed of "Dude, you really need to cop to this..." And actually doing that "processing" as the turn of phrase often puts it, of copping to the truth and releasing the emotion that has been attached to that truth, has revealed itself each time to be precisely what I needed to do.

Yeah, I have to use a wheelchair, it's tricky/difficult/sometimes potentially risky to move it into and out of my truck; I have to walk carefully and be especially cautious about not pulling the TV over onto myself and cracking more ribs; I don't do [very, very, very long list of things I used to regard as "just part of a normal day"] any more.

But, inconvenient as those are, they're actually a not-even-vaguely "close" runner-up to the spiritual journey. Or, as the Muslims say, "The great jihad is the internal jihad."

I have a lot of truth-telling to do. Opening the heart, opening the mind. Clarifying both of them, letting their light shine out, and the light of the Universe to shine in.

To paraphrase what Joe Straczynski often wrote in The Legend of the Rangers (and, I'm sure, many other places, both within and without the Babylon 5 universe)...
What comes next is between you... and you.
Or, more correctly, in this context: What comes next is between me... and me.

Thursday, April 4, 2013

Dueling doctors

At my last appointment, my herbalist says, "Talk to your MD about your levels of xyz hormone, I think they're a little low. Maybe you might need to get a little extra, maybe with product XYZ...?"

I checked the web under Product XYZ, and I knew immediately it was a bad idea. The pictures were so happy... happy happy people... don't you want to be as happy as those people? Of course you do. It's very easy. Ask your doctor if XYZ is right for you. Don't ask about the side effects, leave that to your doctor (yeah, we gotta tell you, they're down there in ant-ass printing, 6-point type). But... Look! Look how happy they are! You want to be just like them, right?

Now, there are some things we all know are important under some very specific circumstances, but that you never never see "happy happy people" ads for. "Ask your doctor if insulin is right for you." "Ask your doctor if vitamin D is right for you." "Ask your doctor if thyroxin (thyroid hormone) is right for you." And, by the way, at the pharmacy, said things are always CHEAP. Not like, say, the M.S. Drug Du Jour, costs how many hundreds of dollars per dose, which you need to take every day (maybe twice a day) for the rest of your life, ask your doctor if that's right for you, look at these happy happy people, you want to be happy like them, don't you?

Anyway, back to the story... So, herbalist wants me to ask MD about hormone xyz.

I go to MD, ask him about it; MD says that this hormone depletes with age anyway, that's as normal as normal gets, that almost nobody needs additional doses of that hormone, which by the way, if you get it administered with that particular drug XYZ, has been known to stop your heart. So no, it's not "right for me," and not taking it doesn't help make me happy, it helps keep me alive.

But, MD says, because I've kinda whined about missing it and how much I used to enjoy it, and my spirits have been kinda low for a while now, he wants me to go out and find, and enjoy, some crème brûlée. A spirit lifter (which I think it would be, truth be told). It was always a big favorite of mine, and especially, a green-tea version! Yum, yum, YUM!!! That would definitely lift my spirits! (At least, we think so, maybe...)

Cut to anti-dairy herbalist. The same herbalist who told me to ask my MD about hormone xyz, who has also put me on a sixty-five-underlines-no-means-NO dairy diet. It's really, really bad for you, he says. It could, quite possibly, stop your heart.

Well, so I've got doc "A" telling me to look into some hormone that just might stop my heart, and doc "B" telling me that I have to to have a dessert that just might stop my heart.

Well, the Neurological Highway is never short on laugh lines, is it?

But, the story will, I think, have a happy ending. Herbalist will adjust his formulas, MD will be happy because I've not only found a place to get a VEGAN version of said favorite dessert (ah, L.A. can be quite the culinary paradise!) I'm well on my way to figure out how to make it myself, dairy free. I get my spirit lifted, my heart keeps working, both doctors are happy. Everybody wins!

Now, those of us on the M.S. Highway have to be our own best advocates, and do our own research, don't we?

These skills assist us in the most amazing ways, don't they?