Monday, April 30, 2012

Tonight is Walpurgis Night. Traditionally, it is celebrated with dancing, and with fire.

I can't do the former; I can barely walk.

And fire...? I could use that, too. I could really use that.

Tomorrow is Beltane, one of the Celtic "cross-quarter" holidays. According to Wikipedia, the name means "bright fire."

I could really use bright fire, too.

The Tiny Buddha blog today reminds us that somewhere right now, someone out there feels exactly like you do.

So for those out there who feel exactly like I do...

May we all find the bright fire we seek

Sunday, April 29, 2012

Dents; somehow

Seth Godin's blog asked, "Are you making a dent in the universe?"

I feel like the universe has made a dent in me. Although, my spiritual advisers would remind me that much (most) (all) of that dent in me, I made myself. But still, I definitely feel "dented."

I took a longer-than-I-enjoyed walk in a shopping center today, to go from a favorite lunch spot to a "nearby" (no-quotes-"nearby" if you're not impaired) Chinese pharmacy to pick up some of my favorite lozenges. I didn't enjoy the walker-walk at all, but I did it because exercise is important, use it or lose it, yadda yadda yadda. Frankly, if I could have done it in my stocking feet rather than my shoes, I'd probably have despised it much less, but whadda ya gonna do, y'know?

I feel like I have no energy for anything. Hard to release the old to embrace the new when you don't feel like you have any energy to spend on either releasing or embracing. Everything is made more difficult when you don't have the energy to face the truth. It's one thing to flee from the truth—denial is something I've got way too intimate a relationship with, and way way way too much practice at—but to not want to look it in the face because you're just too damn drained... somehow, that's different.

There's a lot of "releasing" that needs doing. Much of the "needing to release" was catalyzed by M.S. symptoms; some of it was not catalyzed by, but revealed by, my current state.

Plus, there are Things in the physical world outside of my immediate condition that also need attention. Hard to muster enthusiasm for Taking Care Of Things, important though they may be, when you have no enthusiasm for doing anything.

Body, mind, and spirit are a single package. All of them need very special care, right now. Not just palliation, but tenderness.

Not sure exactly what I'm going to do right now, once I finish this, but... I'm going to be nice to me. Somehow.

Not a bad thing to do, Sunday evening. Be nice to yourself. Somehow.

So, I'll try that.


Friday, April 27, 2012

An interesting road...

A day of quiet confrontation. Sometimes, resulting in a coming to peace. Sometimes, resulting in... a quiet "hmm...." and more thoughtfulness, and quieter confrontation.

Confrontation with "the way it is, right now." I took something like an hour and a half to do dishes. Put a set into the sink to soak. Sit down. When I could stand up, I'd do some dishes, until I either came to a clear "break point" in the process, or it was clearly becoming unwise to keep standing. Repeat, again, and again, and again.

Adding to the comedy of the ballet was what I had left on the TV as something to keep me company. In the past I've enjoyed the Food Network, which seems to have become the 24-hour "Triple-D" channel ("Triple-D" is what the host calls his show). For me, it's "D for Dairy," and "triple" doesn't even begin to cover it. As someone who has been told by his healthcare providers to never, and boy does he mean never, have dairy in any form, never ever, I notice immediately that nearly 100% of the dishes have not only triple dairy (three kinds), but sometimes five, sometimes eight, different forms of dairy products.

Makes me think I can't eat anything, anywhere. Ever. Doesn't bother me that much, because I'm so into Japanese and Chinese food... oh, if I was put on a "no soy" diet, it'd be a completely different story of depressing culinary estrangement. You take what you can get, in this business.

Anyway, back to "confrontation"... I'm having to take serious... quiet, fortunately, but still serious ... looks at what I can and can't do. The dishes are only the tip of the "disability iceberg." As part of my disability-insurance -processing process, I'm going to have to fill out a list of skills, training, and experience... and just going through that in my head, not even on the page yet, so many items take the form of "Skill X... can't do that any more."

I'm also aware of the things that I do better than I ever used to do. Has to do with the "sensitivity" that gets cranked up to unexplored heights as part of the M.S. process... Heat sensitivity, cranked to "uncomfortable," cold sensitivity also cranked to "uncomfortable;" but compassion and empathy also got cranked, and those aren't uncomfortable, they're... blessed. Really. They're a wonderful blessing.

'Course, they don't fit on a "skills and training" form. Can't walk. Can't stand. Memory starting to crumble. Can't abide chaos. Can't schlep things. Can't sit in the same place for too long. Trick bladder. And oh yeah there's also this—near-telepathic empathy, and feeling the light of my heart connect to the light of the hearts of my students, and through that connection, catalyzing their self-empowerment.

A disease that makes "having a job" difficult to impossible, but increases one's ability to share joy, laughter, and the radiant light of the heart; and to show others how to find the light within their own hearts.

A very interesting road we travel, is it not?

Tuesday, April 24, 2012

Journeys and rewards

A day of many journeys; of many projects.

First project: Visit the oculist. Are my glasses out of adjustment? I hope that's all it is, 'cause if it isn't, it might very well be The Disease (even though fortunately it hasn't been... yet...), and then again, it might very well just be age (which always has something to do with everything, Disease or no Disease).

Second project: Brave ... The Valley (San Fernando Valley, for non-Los Angeleans)... to visit the shop where I got my "translator," the official name for my walker/wheelchair combo. The back-piece has nearly come completely undone, thus making it impossible to rest one's back against in wheelchair mode. The people at this shop are so nice, a third-generation help-the-handicapped shop; and they really know what they're doing. Always a relief to work with competent caregivers; even better when they're kind and compassionate as well as competent. (All of my caregivers are like that: expert, kind, compassionate. Boy does that make the M.S. Highway so much easier to endure.)

Third project: Cross the Great Divide (that's the 405 freeway) and visit the acupuncturist. Expecting a treatment that, in the words of Eustace in The Dawn Treader, "Hurts like billy-oh, but feels great when he's done."

Fourth project: Travel up the Great Divide and then enter... The Valley... and visit the herbalist. Fortunately, driving to see him is the worst part of the treatment; there's never any pain, and the worst thing that happens is that what he gives me tastes bad.

A reward for my efforts: The herbalist is only blocks away from somewhere I can get vegan Ethiopian food. Ethiopian food is absolutely wonderful, but traditionally, it involves butter. Lots, and lots, of butter... one of the few things on my herbalist's "you can't ever eat this, ever" list.

Somehow, surviving each of today's journeys will end with a treat.

Not a bad day traveling the M.S. Highway... when at every stop, you get a treat.

Saturday, April 21, 2012

Causes = reminders... ?

Oh, the neurological changes...

I'm getting increased--that's right, increased--touch sensitivity in my legs. While I'm walker-walking, I frequently have to confirm that my pants haven't dropped, because I can feel so much air against my skin. Most unusual, this is. I'm happy to report that my pants haven't dropped, I'm just feeling "the wind" moving about within my pants legs.

In the M.S. biz, becoming more touch sensitive, where one used to be less touch sensitive... a wonderful unusual reversal, that.

But oh, my legs are changing in other ways: specifically, becoming less steady. Every day, a little more teetering. Earlier today, just after having shed my walker (it lives in the bed of the truck while I drive), I nearly couldn't reposition myself to walk "all the way" to the driver's door. While holding on to the side of the truck, even. "Free walking," with no wall to steady myself on, is always shaky business at best, but right now, even with something to hold onto, it's becoming even shakier business.

Doesn't help that I can tell that I need acupuncturing (another one of those "four needles cures the problem" issues). Really doesn't help that I'm going through a "putting your affairs in order because your time is very, very, limited" in the work world...

One of my colleagues stopped by to visit the other day; he's currently under the care of the hospice division of the local hospital;  as he put it in his own words, "I don't have long."

In my own way, and pertinent to my own situation... I kinda know how he feels. Even he spoke of it as "the human condition"--temporariness, that is.

And Lord knows, M.S. is all about being reminded that this thing we're driving ourselves around in, it doesn't last. We are eternal, but our vehicle is temporary, prone to malfunction and failure--and nobody really likes being reminded of that.

But, I gotta tell you... getting "your time is coming to an end" in any way, right in your face, is NOT fun.

And here's the kicker... if I had really embraced what having M.S. can teach me, I think that coming to the end of a phase of life might not bother me so much. Because "temporariness," the unknowability of the future, those are with us M.Sers--really, with all us humans--every day.

The very condition that caused me to come to this rough spot in the road is going to be what enables me to make it over it.

And as you've heard me say, time and time again...

That's funny.

Friday, April 20, 2012

Gifts and gifting

A very mixed day. A day of gifts and gifting; some sweet, some bittersweet.

Office cleaning. Saying goodbye to possessions, some of which that, in all honesty, were due for a goodbye. Which probably would have received a goodbye in due course anyway; but one that was not so replete with mixed emotion.

Joy, at re-gifting tools that have been close friends for a decade, no longer needed by myself but eagerly received by other friends; sweet, shared joy.

A gift from a fellow M.S. blogger:

Her own post about this award and its name speaks of it ever so eloquently. Thank you!

An evening spent in semi-darkness. No motivation to read, to create, to ... anything. The Food Network and the Cooking Network, so often sources of at least entertainingly-delivered information, are thick with shows depicting menus that involve five to six different kinds of dairy products. Or seven to eight, sometimes. Having been put on the Zero Dairy For Any Reason, Ever diet, and having been on it for ... oh, I forget how many months or years I've been on it... Anyway, having not had any dairy for as long as I can remember—not missing it, oddly enough—and watching show after show cooking things that could not be made without using my body weight in dairy products: well, it's not as entertaining as it used to be.

Frankly, I'm amazed that the hosts don't simply keel over from some sort of spectacular cardiac reprisal. But even I can't find the humor in waiting for that.

Fell over, this afternoon. Was walking to my favorite chair, suddenly started careening (which, I'm sorry to report, happens all too often when I'm not wall-walking, and even sometimes when I am), and I couldn't find anything to grab to regain any sort of control. Wound up doing a full-on face-plant, fortunately into a mercifully soft pile of laundry. Zero injury, thank goodness; but man, have I karked up my glasses—and I'm horribly sensitive to them being even the slightest bit out of adjustment. And out of adjustment? Oh man oh man, they sure are now! I sure hope my oculist is open tomorrow... for my convenience, though, he probably won't be.

On the schedule for the rest of the evening: Yummy medicinal herbs. Bed. Hope for a reasonable amount of sleep tonight, and a better day tomorrow; on the calendar tomorrow, a tea tasting: Amber oolong, I believe.

Take tea and see, the old saying goes. Well, we'll indeed see... Tomorrow, I'll take tea, and with luck, enjoy.

Wednesday, April 18, 2012

Funny; not funny; not tonight.

My beloved followers, my friends and readers, you know that I often find humor in things that (for most people) aren't at all funny. Moments of humor in the darkness... often dark humor, in the darkness... but still, I find the most amazing things ... funny. And often, that dark but unexpected humor really lifts my spirits, precisely when they need lifting most.

Then again, there are things that are "supposed to be" funny— but oh boy, from my point of view, they really aren't.

Today I came home from having done way too many "all sorts of things" completely dispirited. I had spent a lot of effort a few days ago walker-walking much further than I enjoyed, obtaining groceries to make a Thai curry this evening; but when I got home, I was so dispirited that I was saying both to myself and my wife that I just didn't think I could do it. I'll cook tomorrow. Maybe. If all goes well. Which, the way I was feeling at that moment, probably wasn't going to happen then, either.

We clicked on the TV: and there, waiting for us, was South Park. The episode: Creme Frische. Randy had become convinced that he was going to become a celebrity chef, and kept singing a song about "Creem FREESH..."

That was funny. That episode, greeting me, who was completely convinced that I just didn't have it in me to cook anything. How could I not cook, with South Park laughing at me? Now, I did have to spend more time than usual in a chair rather than standing over the cutting board, and the "usual tasks" were often not at all easily done from a chair. But chair or not, dispirited or not, I did them. Not my most perfect creation, but considering how many Thai dishes I don't cook on a regular basis, to use a little too much galangal and not quite enough curry paste didn't matter so much. And I'm even more looking forward to the rising outdoor temperature, so I can use my outside camp stove that cranks out enough BTUs for real cooking.

So... "creem FREESH" got me cooking. That was funny.

A little later, this week's Brand New Episode comes on. Now, South Park does go for what I call "poo poo humor" a little too readily for my taste, but in this week's episode, we got a way to intimate view of Cartman's alimentary canal, and way too much information about how his poor eating habits had loosened his bowels and in a few moments, he was going to completely lose control of said bowels and befoul himself.

Dear South Park folks: I agree with you that Cartman probably deserved to have that happen. But let me tell you... being unable to control your own elimination system? For whatever reason?

Not funny. Believe me; I know all about that. And you definitely don't want to hear any more details about that particular story. And please also believe me about this: I really don't wish it on you, or on anyone. For any reason. Ever. But... really. Just trust me. Not funny.

I only saw about sixty seconds of this episode. And that's all I'm going to see.

Two episodes tonight, both of them very close to home; one of them funny, one of them NOT funny. But both close to home.

I'm sure that at some point in the not-so-distant future, I'll be able to find the humor in that particular juxtaposition.

But not tonight.

Tuesday, April 17, 2012

Kyudo in the backyard

Wonderfully beneficial acupuncturing, today. Got the usual things fixed, got some very unusual things needled; things with very mystical names, names that portend momentous changes.

Perhaps the first momentous change... has already occurred.

Months ago, I bought an archery target, so I could continue to practice with the bow and arrow without having to journey to/brave the local range. It has sat in my room for those many, may months, because it has been so @$#$ing cold outside.

Suddenly, here in Southern California, it's warm. Delightfully warm. Magically warm, even.

So, after wending my way home from the doctor/acupuncturing, I hauled the target out of its box, put it on a table, and for the first time in I really don't want to think about how long, I took out the bow and arrow. And hauled all of those things, plus a drumset stool so I'd have somewhere to perch while drawing the bow, out to the back yard. Man, was that hard. Took a long, long time, too. But I did it. Eventually; and "somehow."

Nearly nastily injured myself simply stringing the bow. There are several ways to string a Japanese bow, and they're all very easy and straightforward. When the archer is able-bodied, that is... It wasn't a case of "the bow tried to push me over," it was even nastier; I put the bow in the position that one puts the bow, and one's self, and... the repeated "nearly falling over and injuring myself by falling nastily on the concrete patio" immediately began.

Well, I finally got the damned thing strung. Doing the traditional hassetsu, the eight steps of kyudo, are hard enough when you're not doing them for the first time from a chair (for which they really weren't designed). Very strange, trying to adapt/reinvent the form to be used from a chair. And clearly, my "bow-drawing muscles" are not even vaguely close to what they used to be, simply drawing the bow was much harder than I remember it ever being. And there was a lot about this shot that wasn't even close to "correct." But... still...

Yes, I shoot from close range and not from any real distance, but... it could have gone much worse than it did. Like "not hit the target at all," for example, which has happened to me more than once while shooting from a standing, non-M.S.-accessorized, position.

The world is very different, now that I can go out into it and not regret having done so. That may change once the July/August triple-digit-heat kicks in, but still...

Simply being able to go outside, and enjoy being outside, and to do something that matters outside... this is wonderful. 

The Japanese phrase "issha, zetsumei" is often translated as "one shot, one life," but more literally, it means "one shot, then breathe one's last breath." Or more succinctly, "One shot, then die." 

Why I somehow feel like I need permission to live like this, I do not know. But today, I feel like I have received it.

Kyudo in the back yard. A wonderful way to participate in the renewal of the season of the Wood element; in the special magic of springtime. 

Monday, April 16, 2012

Triumph, and sorrow

Some triumph today, simply in amount of walking (with the walker, of course).

I made it on some amazingly long (by today's standards) walks, but very, very slowly... all made possible through the magic of "@$#@ it, I am going to do this!" determination. I managed to visit a nursery which I used to visit many times a year in bygone days, but haven't been there since the onset of The Disease and my "accessorization" with the walker. I bought a new yellow rose for my wife—her favorite color rose! Then I survived the very long trip to and through the very large 99 Ranch Market, for supplies for a Thai yellow curry, which I hope to actually cook on Wednesday.

We're going to have to have our gardeners plant the rose for us. On one level, that's one of the things that we have gardeners for, but I have planted so many things myself over so many years, and now to be unable to do it... it's sad. And quietly, but persistently, hard to deal with.

Did more cleaning up of my office today... started marking some shelves; the first collection to be the "we probably need to recycle these, but [specific person, named on the tag] gets to decide." Going to be doing a lot of this kind of labeling... "Person X needs to decide what to do with these... person Y needs to decide what to do with these..." Even if Things Weren't Changing As They Are, that would still need to be done, but with things being As They Are... sigh.

I'm sure you've read in many stories the phrase "putting his affairs in order;" this is it. Every once and a while, I find something that makes me smile or laugh, but by and large, as I'm putting things in place for what may be The Last Time... It's sad. And quietly, but persistently, hard to deal with.

My legs are spasm-ing quite nastily tonight. And aching mightily. They don't do that a lot, but they've been doing that more than I like in recent days, especially when I'm in bed or otherwise trying to rest. I'm going to do some tote-renshu kyudo, then I'm going to try one of my magical herbal formulas, it often does a very reasonable job of calming down the twitches.

I am so looking forward to my acupuncturing tomorrow. Took me fifty-one years to get to the place of "I'm going to my doctor, he's gonna stick needles in me, and they're going to hurt, but then I'm going to feel better!"

How often do you get to say that en route to your caregivers?

You take what you can get, in the M.S. biz... right?

Sunday, April 15, 2012

Hitting the wall

I started the day with fantasies about fun things to do today. The first thing I did was make brunch. Even before I finished that, I did the the first not-planned-for thing: I hit the wall. Not entirely figuratively...

Today's brunch: Tamagomaki, a Japanese egg dish. I'm still not happy with the finished product (I'm picky), but I do enjoy the learning process. Oh, I have so many "one of these days" dreams about different ways to approach this, even maybe inviting a former sushi chef over, and make him lunch, and have him teach me how to really do this.

Fortunately, I managed to get it off the heat and onto the cutting board before I started hitting the wall. Metaphorically, and (in a small way) physically... When I've been standing up too long over the cutting board, I often find myself pitching forward and smacking my forehead into the cupboard that overhangs my work area. And more doing careening about and grabbing for a handholds, more often than I like. Fortunately, I manage to maintain enough over my tool of choice (a sharp-as-a-scalpel Chinese cleaver), even when careening about, and I've never hurt myself or anything else. But still... my kitchen, always a beloved workshop and place for creation of artworks, is now also a place where I just can't work the way I used to.

"Can't do X the way I used to." I know, I know, it's the human condition. Inescapable, and inevitable. But dammit, I wasn't ready for it to happen now.

But the again, who is? No matter when "now" happens. But then again... the only time we experience, the only time we can experience, is ... "now."

So now I have to seriously, seriously, prioritize my rest-of-the-day, fantasized, activities. Number one priority: Wash the egg-cooking pan. It's a restaurant-grade pan, it has been made into a culinary master-tool by a former egg chef, and there are very clear rules about its care. Next... I had wanted to make some kale chips, a delightfully nutritious and very-satisfyingly-easy dish that I can make from a seated position... that, I think I can do. But the rest of today's hoped-for activities? Including going to the store to get supplies for the curry I was hoping to create today, for dinner tonight? Or the jaunt by the nursery to get my wife a new rose bush... the planting of which I also can no longer do...

A recurrent theme, it seems. "Can't do X the way I used to." I know, I know, it's the human condition. Inescapable, and inevitable. But dammit, I wasn't ready for it to happen now.

But the again, who is?

Saturday, April 14, 2012

"Acceptance" (in quotes)

Coming to grips again (again and again) with what "acceptance" really means.

There's a problem with "accepting" the changes I'm going through. And those quotes around "accepting" mean ever so many things...

Someone dies... you grieve, and because you go through that grief, you can come to acceptance. A you-thought-they-were-a-"loved one" tells you that "It's over," and you grieve, and because you go through that grief, you can come to acceptance.

But irreversible changes are just that—irreversible. They won't just up and undo themselves.

The Disease isn't like that.

It gets worse. Except when it doesn't. Except when it gets better. And then gets worse again. Except when it doesn't.

So... what, exactly, am I supposed to grieve? I haven't lost anything permanently. Except maybe I have. Or maybe I haven't. There's no knowing. If it comes back before I die... I guess I didn't really lose it, did I? Or if it doesn't come back before I die... I guess I really did lose it, didn't I?

I like to heap empty praise upon myself that I'm not living in the world of Vegas hopes... That I'm "accepting" (there go the quotes again) the truth of what's likely to happen. There's no reason that roulette ball won't land on the number you bet on—that's how "probability" works. It usually doesn't (which is why they're able to afford building and maintaining the Vegas Strip, because people mostly lose their bets), but there's no reason it can't. There's no reason why, if you flip a coin ten thousand times, it won't land on "heads" every time. It might. Probably won't... but it might. Because there's nothing actually, forcibly, stopping it from happening.

I'm not betting on M.S. evaporating. Really, I'm not. I'm not hoping/pretending that one day, I'm going to wake up and... find that it has just up and left. But somehow, I'm somehow also not willing to commit to it never improving.

I'm cleaning out my bookshelves at work. Some books are easy to let go of... that book on managing Windows 2000, that operating system's time has come and gone. It's over, as over as over gets. No tears there. A quiet laugh, a sigh, and into the "recycle" pile it goes.

The book on theater tech and management. Tips about hanging lights, building sets, managing things backstage. Stuff I used to do a lot of. And really, really enjoyed. It's very, very easy to "accept" my current condition; to say, "Well, I can't do that now, or for the foreseeable future. So it's OK to pass this on to someone who needs it."

But I can't... I can not bring myself to say, "This part of my life... is over."

I can choose to make that part of my life "over." I can choose not to do it any more. Or "ever again."

But that's different. Very... very... different.

This is why even though I can't play the organ... now... that I still have pictures of me at the console on this blog. I used to be a reasonably active percussionist. I still own a charming little Ludwig "jazz combo" drum set; it's sitting on a shelf somewhere, and I don't mind it doing that, because I don't feel the need to play set any more. I was never really a set player, although I could do it reasonably well. That part of my life, it was OK to say goodbye to... because I did it on my terms. I decided that it was over.

I didn't decide that my maternal grandfather would die. But his loss, I could grieve. And I could let him go.

But right now, there are many things that are being... removed from my life. For good? Don't know. For now? Oh, yes. But forever? Some of them yes, certainly, and their time may have come regardless of The Disease; but some of them... who knows?

And it's that ambiguity... that's the doorway through which I'm reaching, to cling desperately to the past... and through which doorway, extend my chains.

How the @$#? am I supposed to grieve ambiguity? Hell, if there's anything that one should be loath to grasp, it should be the ungraspable. And yet, it seems, to that I cling the most desperately.

I'm trying to see this as a gift of M.S. I know it is. I know it is. But... right now, I can't "accept" it.

Not yet.

And, I guess... that's the problem.

Tuesday, April 10, 2012

Prescriptions; interesting gifts

A good visit with my MD/acupuncturist, today. He treated a bunch of points with "Heavenly" in their names... of course, I don't know exactly what that's going to mean, but I enjoy the poetry. And I do definitely feel different after his treatments. Who knows? Perhaps this week, I'll actually feel... heavenly.

He was very enthusiastic to hear reports about how I'm starting to feel new sensation in my legs, in the soles of my feet and below the knees. Odd sensations, quite odd indeed... but sensations nonetheless.

And he gave me the usual prescription, along the lines of "Dude... you've so got to exercise more. Any exercise. Any!!! exercise. But you've got to exercise more."

Well, I have been... a little... but apparently, too little.

Given the prescriptions we M.S.ers are often given... being given a prescription that doesn't involve getting injected with something that makes me feel horrible for day after day, and getting injected again and again... not so bad a prescription.

But unfortunately, this prescription also has a side-effect, too... using my legs sometimes (read that as "often" or "usually") kicks my bladder into over-enthusiasm, and I'm quite sure he didn't intend to include "dash/wall-walk/stumble to the bathroom" within his definition of "do more exercise." But since I know M.S.ers who need mechanical assistance with bladder emptying, an annoyingly-functioning bladder is definitely better than a non-functioning one, so I count myself lucky.

Counting yourself lucky while you're living with neurological nonsense. Honestly thinking of yourself as lucky... not just "trying to put a good spin on something awful" while you're really thinking of it if you're saddled with misfortune. Really feeling lucky to have the malfunction that you have. That's an interesting gift of M.S., isn't it?

Monday, April 9, 2012

That's good

Not often do I get full-blown pain. I got it today.

This Thing falls on the floor and rolls under something. Nothing breaks, The Thing just rolls under something. No problem, I think, this'll be easy, I'll just get on my knees and pick it up and away we go.

So, I struggle to get to my knees. And that's when the pain starts. I've never had that much pain just kneeling on the floor. Yeah, it's a wooden rather than carpeted floor, but still. That much pain?

It was horrible.

Anyway, I retrieved The Thing, and I'm ready to stand up. Or so I think... Not only are my knees screaming in agony for being on the hard floor, but I can't get my feet underneath me so I can stand up. I can't move my leg into a decent position to get a foot underneath my weight, and the foot keeps... sliding... to the side, in the wrong direction.

I know, I think, I'll just grab something and hoist myself up enough to get enough weight off my legs and feet, so I can get a foot underneath me and finish the process. Great idea! Doesn't work. Can't get a decent grip on the chair I'm in front of, can't find anything else I can use to heave myself up.

Somehow, somehow, I manage to get a foot underneath myself and I can push down with the leg and somehow get myself standing again.

And, my first thoughts? Not crap, I really am handicapped,Not boy, that really sucked!—surprisingly nothing negative. Nothing! Just one word came to mind... Whew! And wonderful, wonderful relief. Thankfulness for being able to stand... and relief.

Even when things go awry... "good" is still good. Even when it's just a little bit good... it's good. I was able to get up without crawling to another room! And I was even able to walk (a little) after getting up!

And all of those things... are good. And as we all learn, on the M.S. Highway... you take what you can get. And when you can get "good," even a little bit...

That's good.

Friday, April 6, 2012

Stories; loss; something new

I've been receiving the same lesson about "stories" from several completely different sources.

I was explaining to a caregiver about how I had gotten myself into a particular state, and at some point she interrupted me, and said "There's no reason to keep revisiting that particular story."

When I met Eric Small (yes, that Eric Small) at a training session for yoga teachers helping disabled students (I was a "sample student" so the teachers could practice on a real person), he said that the teachers should ask the students, "Tell me how you are now. Not what happens every day. Not how you got here. How you are."

And on Tiny Buddha's Seven Tips for a Happy Life, the very first tip is "Tell a new story."

What's most poignant about the author's own story, that the loss of a loved one helped spur her to make the changes she writes about.

Do not all these thoughts strike a resonant chord with us M.S.ers? They certainly do with me...

Because was not one of the first things we were forced to face... that maybe we're still being forced to face, because we haven't really faced it yet... the loss of a loved one? That loved one being... the "I" that I used to be? Our inner self, our inner light, is imperishable, eternal; and yet, we attach ourselves to this fleshy device we're piloting in this incarnation, and we call that thing "I." And the pre-M.S. "I" that even if we didn't love, we were certainly comfortable with and in... that's gone.

And even though we tell ourselves that we've "let go" of the "old me," we still haven't let go of the old stories. Certainly, that sort of attachment has nothing to do with any neurological disease, and there are stories that are themselves thousands of years old, about people fighting that particular battle.

My life is changing. Even more than neurologically, my life is changing. The neurological changes were simply the first dominos that were knocked over... the rest of the dominoes are still falling, and right now they're starting to fall very copiously, whether I want them to or not.

So here are the seeds of the new stories that I need to start telling myself; the stories that I don't need to "attach to," but that I need, for the moment, here and now, to embrace.

Seed number 1:
"That was then; this is now."

And seed number 2:
"This, I can do. Which is good, because... I love doing it!"

Stories of empowerment. They take as much effort to tell as the old, negative stories that anchor us to the past we need to release, but... unlike the old stories, they feed the future.

Time to tell new stories.

Tuesday, April 3, 2012

Well, THAT'S better...

Another lovely visit to my acupuncturist/MD... a few needles here and there, and life is once again worth living.

Quality of life. Nobody addresses it better than the classical five-element acupuncture crew. My acupuncturist-doctor said that J.R. Worsley, his teacher, told them that nobody is to be allowed to leave the treatment room—even to get up off the treatment table—until they feel better.

And... they always do feel better. Always.

He was also quite happy to hear that I'm actually feeling things, and feeling them differently, in my legs below the knees. It's making walking even weirder and (too frequently) more unpleasant than usual, but it's definitely a "non-worsening change." It's an indication that something good is happening; "progression" in the sense of "moving forward," not the "getting worse" that it has been for so long. Again, he shared the story of one of his patients who had been some-sort-of-plegic for more than twenty years, due to M.S., and having been wheelchair bound for decades, he simply stood up and walked out of the hospital, because he had just... gotten better.

One of the herbs in my current formula (prescribed by my "stay away from dairy" herbalist) is ho shou wu. "Ho's lustrous hair" it's often translated, and the story goes that taking it made old bald Ho's hair grow back, and turn a lovely, rich, and shiny black. If you shop in the right place, you can get it by the bottle, just for drinking or for use in cooking, which was they way I always used to take it when the three-treasures herbalists gave it to me). I asked the doc what he was using it for in this particular formula, and he said, "To rebuild your nervous system."

You don't hear that every day.

The M.S. highway is particularly ... interesting... right now. Dealing with "the real world" has never been more difficult; I've never had so seriously to assess my current, and future, involvement with said "real world." And yet, I look around me in that "real world," and I feel like I'm seeing things with new eyes; roads I've traveled for decades, seasonal scents I've smelled for decades, they all seem completely new. Don't worry, this isn't a "something's come badly unglued in my brain" perception of newness because I'm forgetting what the road home looks like, or anything like that... Rather, it's like the way one priest described the Mass at its best: "You hear it again, for the first time." So, my functional role in the "real world" definitely needs evaluation, serious eval- and re-eval-uation; but my journey through this world, for all the roughness of the ride, for all the challenges I'm needing to face (whether I want to or not), for all the nasty surprises that too often intrude themselves (whether I want to face them or not, especially when I don't want to face them), has suddenly become...

Very beautiful.

Monday, April 2, 2012

Why should we be any different?

You've probably seen a coin flipping in slow motion, either in a feature film or on YouTube; imagine, if you will, the way you can see each face of the coin flashing at you as it spins.

No imagine not a two-sided coin, but some sort of three-sided coin, also spinning in slow motion. And imagine how each of the three faces flashes its face toward you as it spins... slowly... slowly.

That has pretty much been my state, the last few days. Spinning slowly between three different states...
  • I can do this. (Whatever "this" might be at the time.)
  • There's no way I can do this. Or anything, for that matter.
  • I give up. Really, really give up.
Not the smoothest ride; certainly not a pleasant one. One night last week, I had a near-religious experience seeing some unbelievably wonderful magicians, and enjoying some amazing chats with them before and afterwards. Sadly, that elation didn't last... I keep returning to a space of "I don't know whether I'll be able to keep walking or even keep standing"—not in the "larger sense," in a very short-range, "in the next five minutes" sense.

All sorts of things are on the verge of changing; not all of them neurological. My relationship to the "working world" is going to move into a different phase very soon, and how OK I am with that is going to take a while to work itself out. Some things are neurological; walking has become nastily difficult in all sorts of new ways, but also there are actually new sensations in my feet and legs. Something re-constructive is also clearly going on.

Sometimes, one is tempted to wish "if only things would stabilize and stay the same for a while, so I could get a handle on things and get things under control." But nothing "doesn't change." Nothing. Why should we be any different?

The trees lose their leaves; their branches are bare; new leaves appear. Each leaf looks the same as always, but they're not really the same; if you looked closely enough, you could see the differences.

And the cycles that the world goes through, the trees, the flowers, the animals, the stars and the planets, they are all beautiful.

Why should we be any different?