Costs

I think I'm going to be taking a break from my weekly scheduled official physical-therapy sessions.

Like so many MS treatments we MSers are given, by people who have nothing but the best of intentions, it costs too much.

Not financially... energetically. My PT sessions do not appear to be making me "better," and certainly aren't making my walking better. But I come back from PT barely able to wall-walk or even walker-walk the 12-ish feet between the bed and the bathroom. The bed, by the way, where I spend much more time after PT than anything else that takes a lot of energy, like going out to dinner or a movie.

Two days, sometimes, it can take for me to recover from even a gentle PT session.

So yeah, I think I'm gonna take a break from this for a while.

Will I try to do some exercise-y things at home on my own, anyway? Well, I'll do what I can, but very very carefully. And not an hour at a time. A couple of minutes. Then a break. Then a couple of minutes, again. Maybe.

But mega-doses of PT, right now, feel like they're harming me, not helping me. My abdominal muscles, what the Pilates people call the "core," those have definitely strengthened, and I can feel when I use those. And actually enjoy feeling that my core has been strengthened.

But legs? Oh no, if anything is done to those, it costs me days of functioning at even my now-normal half-baked level.

What will this mean to my (cue the 1960's-grade laugh track) improvement?

Well, as far as I can tell, it's basically done nothing. And even one of my PT people says as much... she said that if I'm not getting helped by this, I might want to take a break.

Well, I do. So I will.

My Primary Care Guy is currently on vacation, I'll be seeing him in a couple of weeks. But I'll be very surprised if he makes a case for "one day of PT coming at the price of at least two days of fractured mobility. Maybe more."

Ah, the MS world. Only we know what the costs of everything truly are. Everyone, everyone, has to pay the energetic price for everything they do... but they don't notice what it really is.

But we do. Oh boy, do we ever.

"Dis"ease challenges

Well, as you can guess from the infrequency of my recent postings, something's going on. What that is, I'm not sure, but it's definitely keeping me away from anything involving being able to withstand "just sitting at the computer and typing."

My massive-air-quotes "walking" is degrading. I still am able to sort-of walk, if I have something to grab ahold of, I'm not completely confined to the wheelchair at the moment, but "using legs" is definitely unpleasant. I have my transport chair-slash-walker in the house, but even using a walker is unpleasant.

My relationship with physical therapy has not been good. I feel like doing any kind of physical activity past a certain point (which point moves, constantly) makes me feel like I had been poisoned. Pushing me past a certain point, at physical therapy (or anywhere, for that matter) pretty much makes me unable to use my legs at all, even for such things as making it to the bathroom and standing up/sitting down. I fear that if I get pushed "over the line," whatever that line happens to be at the time I get pushed over it, will make me unable to do anything. I've certainly felt like therapy has put me down on my back for the entire rest-of-the-day, plus the entire evening, and maybe the next day too.

I've talked to some of my medical team about this. Nobody has any idea what's up. Like they ever do, but hey, what the heck, might as well ask.

And now, here's the brain-melting part of today's chat. A couple of days ago, a thought came to me: The life I'm leading right now, I chose. I chose. Whatever it was that I did to bring me here, I chose to do those things. The jobs I took (and departed from), the skills I acquired, the everything... I chose them. And this is something that I used to say at my prior place of employment which always pissed people off—I think because it's so true... But here it is: Choose the path, choose the consequences. You want to get somewhere/something? And you chose the way to get it/there? You also chose the consequences that that very choice-of-outcome also created. (A lot of us learned that in college. You wanna drink that much? You're gonna pay. This works for pretty much everything, even if the consequent headaches aren't always as large as "you drank THAT much?" adventures.)

Which means that, if this is really true... Somehow, somewhere, I chose multiple sclerosis. This particular "kind" of M.S. that I'm currently experiencing.

I got precisely what I chose to have.

Which thought does put things in an interesting light...

So here I am. Precisely where I chose to be.

Well, if I can do nothing else, the least I can do is... get the most out of it.

Some parts of what's going on, I'm enjoying. I'm perceiving my wife in entirely new ways, seeing how unbelievably awesome she really is. Smart. Creative. Imaginative. Resourceful. Beautiful. Very very beautiful. And having known her since oh my, 1981, to finally see just how amazing she really is... that's a gift. It's a wonderful gift of my current condition.

I gotta tell you, I'd really like to be able to stand up without maybe hitting the ground, and stay standing without hitting the ground, and just f@#$king walk. But when I see my wife in new and amazing ways... that's wonderful. Who cares why? Doesn't matter. It matters that I fully experience it.

Which calls upon me to approach just the "living of the day" experience fully. The M.S. world is a world of very, very, rich experience. There's a lot of stuff simply to experience. Just to be fully present at/during/with, to really open myself to a very full experience of ... whatever there is to experience.

Would it be more "pleasant" to "enjoy" it? Yeah, probably, but to just do what Ram Dass said, to "be here now..." The M.S. experience gives me quite the experience.

And that's my current call. To just experience it. To participate in it. Not to fight it, not to "anything" it, nothing except simply to experience it.

An interesting "dis"ease, ain't it? To put us off our "ease" by requiring us to participate fully in the moment.

Getting my nervous system to do things it's not doing, that may not be achievable. But to be fully in the moment? That's doable. Just takes consciousness and practice.

The latter of which I am being provided many, many opportunities to do. Every minute... every second.

A gift indeed.

Thoughts about "can't"

Man, I had such a "bordering on spiritual" post, but then I had to take a several-hour break, and now what wants expressing is... how little control I have over my legs.

I get into rows with the physical therapy people over my use of the word "can't." They tell me that I shouldn't use that term, "if I believe that I can, I can, and if I believe that I can't, I can't."

I do not dispute that. However, as I told one of my therapists, it has nothing to do with "belief," it has to do with observation. Belief does not include "facts." One does not need to "believe" in things that one can confirm with impartially obtainable observations. I do not need to "believe" in the sun being in the sky at those times of day that I can look up and observe it. And so can you, if you don't "believe" me.

I can't control my legs enough for me to describe my interactions with them as "control." It has nothing to do with belief. I try to control them in very specific ways; I can't. End of story.

I explained it this way to the therapist a couple of days ago. There is a treatment table with an electric motor that one can raise by pushing an "up" or "down" pedal. The motor is electrically powered, it just plugs into the wall.

So I told the therapist, unplug the table. You may tell me that there's the button, press it, and the table raises. But the motor is unplugged. So, given that the motor's unplugged, I can't raise the table.

I can't.

That's as true as true gets. The motor is unplugged, and if I want to raise the table, I can't.

I can't.

Has nothing to do with "belief." If it were plugged in, I could raise it, and being able to raise it would have nothing to do with "belief." I can believe all I want that pushing the up or down button will make the table turn colors and birds to pop out of the walls, Disneyland-Enchanted-Tiki-Room style.

Doesn't matter how much or what I believe, it doesn't make any difference.

Yank the plug out. I can't raise the table. And neither can anyone else, no matter what they believe. Because the plug is not connected properly. That's why I can't raise the table. Bad connection.

Just like what's going on with my legs. Bad connection. "Belief" doesn't make the connection better, when there IS. NO. WORKING. CONNECTION.

Now yeah, I know, I know, they want their patients to not give up, to be willing to "try the untried," that maybe if doing things in new and as yet untried ways, unforeseen positive results will surprise you in wonderful ways. Yeah, I know all that.

And I try to tell them... look, I know all about the difference between "can't NOW" and "can't PERIOD." Musicians such as myself live in the world of "I can't... at the moment! But if I keep practicing, I definitely can!" I have very personal experience with all sorts of "I can't... at the moment." I know exactly how that feels. How to work with it, and to work around it. And of course it's annoying, but that annoyance is temporary. Because we know from the start that it is always going to be temporary, and success IS within your grasp. Not now, but success is definitely possible. And when you do get into the world of "I just plain can't," there's another option... there's something else that you can do, and do wonderfully, and "not being able to do X" is just a way of showing you that you should be doing Y instead.

But my non-control of my legs... this is different. Very different.

I feel like I need to preface anything I tell them with "Look, here and now, at this moment, and only this moment, with no thought of any kind for anything that may or may not happen at some point in the future, right here, right now... I can't. I just can't, OK? Here and now, as we are speaking, and with no implications or predictions or as you call them 'beliefs' about what may or may not happen the moment I stop speaking... I just can't, OK?"

As I told the therapist, and I don't think she liked or knew what to do about my logic, you unplug the table and I can't raise it by pressing the "up" button. That's as true as true gets. It's unplugged, I can't raise it. I can't. I can't. You make the connection good, and now we're in the world of "you need to know HOW to raise it," because if the connections are good and you know how to use them, you can raise it. But when it's unplugged, you can't. Believe all you like. It's unplugged. You can't. Period.

And believe me, I'd love to be wrong about this. Find me a different way to make the connection, and I will. Tell me what to do, and I'll do it. I'll at least try it.

In Matthew 17:20, Christ says that if you have the faith the size of a mustard seed, you can move mountains. I will not dispute that either. But if I had the faith the size of a mustard seed, I'd cure myself, and everyone who has MS and cancer and AIDS and pretty much everything, and instantly transform everyone on the planet into a fully-enlightened Buddha.

Well, I can't do that, either. Nice idea, though. And perhaps worth trying.

But that's pretty much where the "believe more, and you'll be able to" system begins and ends. As far as I can tell, anyway.

So look, if I say I can't, then show me something else to try, and I will. Don't tell me to just "believe" at it.

Apparently, even by their lights, I "can't" do that either.

We'll see

So, how am I doing? Same every day, different every day. Just like life, y'know...

A very VERY medical day, yesterday. Spent the day at some doctor, driving to said doctor, driving between doctors, driving home from doctors. First visit was acupuncturist/MD-neurologist/dharma talk. A very powerful treatment. And actually, even the needles didn't hurt that bad. (Mostly.)

At least the schedule permitted a nice lunch... Stopped off at Gottsui, a lovely okonomiyaki place in the Santa-Monica neighborhood people call "Little Osaka." Nice menu, very tasty, very nice staff--if you're in the area, I recommend it.

I recommend it for many reasons, one of which is the term itself, "okonomiyaki," means something to do with "whatever you like." Alton Brown has called quiche "refrigerator pie" because you could put pretty much any left-overs you find in the refrigerator into the quiche... same with okonomiyaki. You like it? Throw it in. And how often do you get something dedicated to "whatever you like"?

"Cabbage pancake" sounds iffy, in our IHOP world, but it's really quite wonderful. 'Course, you do need to grate yamaimo into the batter, an odd mucilaginous ingredient that's very foreign to the western kitchen, but it really does add something very nice to the dish. Another story for another time... Fortunately, I find no metaphors to share in the goopiness of grated yamaimo. And don't need to. Really don't need to.

But c'mon... When a day is as hard as yesterday was, it's nice to have even a little fun.

New herbal formula today, not a bad flavor! Quite reminiscent of  "Ho Shou Wu," a very old formula said to have turned its inventor's gray hair black. We'll see about that.

Physical therapy in a couple of hours... I find the whole experience very deeply intrusive, we'll see if the "happy vibe" from yesterday's doctor's visits, which somehow still managed to survive the exhausting day-of-driving, can make it past the therapy experience.

Again... we'll see about that.

Truthful expression; gifting

Interesting moments, yesterday...

First was an "interaction" with a disability-insurance company. I suppose it was technically an "interaction," although all that was involved were tossing phone messages to (at) one another...

There's this Insurance Company who has a policy purchased by my former employer, that's supposed to care for long-term-disability people such as myself. There's a bunch of not-all-that-good stuff that has good one, I'm not at all happy with them, but details don't matter at the moment... anyway, one of Their Representatives leaves a message on my phone: Hello, this is X from company Y, we just wanted to see how you're doing, if everything is going well, and what doctors are you seeing and how are they treating you? (I presume they meant "medical treatment" not "are they nice to me").

I left a simple but rather brusque message:

1. Thanks for the call. How am I doing? Well, it changes all the time, some days good, some days not so good. I still have MS, that at least is clear.
2. What are my doctors doing for me? Don't take this personally, but it's none of your business. Besides, if you know anything about MS, you know that there's nothing that someone can give you that'll just "make it go away," which if only they were giving it to me, I wouldn't be disabled any more. It doesn't work that way.
3. You know nothing about me. You know nothing about my condition or how I'm experiencing this disease. I could tell you everything about what they're doing, but it would mean nothing because you don't know them and you don't know me. You know nothing. Anything I would tell you would be useless, meaningless. So there's no point.
4. And besides, it's none of your business.

I didn't get shouty or anything, but I don't think anyone hearing that message would think that it would be a good idea to call me back, that they'd think anything besides maybe... we should just leave.

But here's the really interesting thing from yesterday... At my Monday acupuncture appointment/dharma talk, I told my doctor that I had come to f@#$ing hate walking. He told me, "There is only one thing that can counteract hatred."

"Love."

At the time he said this to me, I knew he was right, but I couldn't really take it to the (forgive the metaphor) next step... it needed to just sit and "cook" for a while.

And last night, I knew what he meant, and what I had to do.

I needed to love my legs. Not "enjoy," not "rejoice in," not "get all happy about," or anything like that... to truly love, to extend my heart and just connect. Not desiring anything, simply offering... love.

When I taught high school, I had a very very deep connection to and with the students. I loved them. My heart connected to them, to the state they were in right then and there, whatever it might be, and to the person that I knew they were born to become. I didn't always think of them as "friends," or even "pals," but when I connected with them, I connected with them. I loved them. It was an invisible, energetic, Jedi-esque connection. I felt The Force flowing between us. And that gift, the gift of that moment of perfect connection, was beautiful. Life-changing. For both of us.

And that's what I extended to my legs last night. No expectation, no disappointment, no hopes, no "if only's," nothing besides... here I am. A connection. Love.

And I gotta tell you, my legs radiated happiness. Warmth. A shared blessedness.  

I still have plenty of "issues" with locomotion. But, at the moment at least, there's no hatred. At all. Love doesn't "accept" faults. It doesn't care about them. It just loves. And that's just fine.

So that was the gift I received last night, and that I share with you today. Just love. Not the equipment, the chair/cane/catheter/needles/whatever. Not the equipment. Not the label, The Disease or the scleroses or the whatever-it-is that you tell yourself is "broken." Just love... You. Your [whatever] is unhappy. Offer it love. Just love it.

It's good for you, it's good for everything. For everyone. And the side effects?

Peace.

I still don't "walk" so good, I'm going in an hour to go get fitted for a new wheelchair. But how do I feel?

Much, much, better. One might even say... at peace.

Walking; Illuvatar; metaphors

I gotta get this outta my system.

I hate walking.

No...

I f#@#$#$ing hate walking.

Wall-walking on a best day, I never really get close to what "walking" used to be. Not even in the context of "up hills" or "up stairs" or anything like that. Walking from the kitchen where I make my tea, to the chair I'm siting in while I type this. 15 feet as an absolute outside guess, maybe even 12 or so. Three corners, kitchen to hall to studio. That's it.

I hate it. I f#@#$#$ing hate it.

Why? It feels soul-shreddingly weird, even on a good day. I have a horrible time trying to explain how this stuff skewers my soul to my physical therapists. "Does it hurt?" they ask. Well not exactly, but put it this way: Your child tells you they hate you. The person you were going to ask to marry you dumps you. Do those "hurt"? Yes, eventually you tell them. So then, tell me specifically how it "feels bad." Easy to describe, isn't it? Finding that quick description suggest a quick and instant cure, doesn't it? Wanna try a DMD, to make everything better? Which they always do, right? How about a Pilates exercise?

When I do "walk" in whatever way I do it, I can barely do it. I'm frequently on the edge of feeling-like-I'm-about-to-collapse-straight-down. Carrying something, such as the tea I went to the kitchen to make, makes me feel even closer to disaster; whether it is actually putting me closer, I don't know, but it sure feels like it is.

Alternatives? A wheelchair (assume for the moment it'll work in this house, which it probably would given a little cleaning of the house and rearranging the furniture). I'm not reaching for that because I think that if I sit in it, I'll never get out of it... at least wall-walking gives me (huge air quotes) "exercise." Of a sort. After a fashion. I think.

A walker? Well, this forestalls the "falling over," we still need to straighten up the house/move furniture/etc. simply to make room. But I f#@#$#$ing hate walking, even with a walker. I've tried walker-ing in the back yard; yeah, I can cross a greater distance with it than without it, but the whole "walking" experience is so incredibly unpleasant that it's just no fun. The antithesis of fun.

The interesting question is, of course, exactly how is it so horrible? It "gets to" me; it cuts very deep, but how? At the bottom line, is it attachment, not to the ego (first) but to this fleshy vehicle I'm inhabiting, to all the things that used to be so very easy, but that no longer are?

Happens to everyone, I presume... the whole "aging" thing, reams of "I used to be able to X but now I can't" that are in big and small ways heaped upon all of us simply by time. And from what my mother tells me, it doesn't get any "better," simply by waiting for time to inflict it upon you. But my 80-year-old mother has a whole different "arsenal" of ... whatever... that 80 years have blessed her with, to soften the blow, the loss, of things we've held so close to us for so long.

Well, I'm a little over 50, and I didn't get a smooth multi-decade decline to ease the transition. I got The Diagnosis in 2007, and here we are in mid-2013. My walking is vanishing rapidly, and over the course of only months--weeks--it is degrading, withering, like a plant that got mistransplanted in the desert and never gets any water. It fades, and fades rapidly.

So, gentle reader, I can hear you asking... Where's the "gift"? THIS, you call a GIFT?

Well, here's the thing. We all get to (massive air quotes around "get to") deal with this eventually. When we want to deal with it, is never an option for discussion or choice. We all "get to," have to, deal with it anyway, when it comes upon us.

Tolkein, in the appendix to Lord of the Rings, depicts Arwen and Aragorn's farewell; Arwen says as they contemplate the end of their century-plus years together, "For if this is indeed, as the Eldar say, the gift of the One to Men, it is bitter to receive." ("The One" here is Eru Illuvatar, the supreme being, not "the one ring.") Tolkien's characters didn't have an easy time of it, either... of course, Aragorn's final words are "We are not bound for ever to the circles of the world, and beyond them is more than memory." I don't think I'm at that threshold yet... but I definitely am at a threshold, binding myself to the circles of this world, to the way I used to be able to walk, and to the way I'm air-quotes "walking" now. And beyond these circles is... a mystery. Right now, at least.

But even fictional characters can come to peace with it. And therefore, I guess, should I; except I have to write it myself.

And that, my friends, is the gift. The hands must be open if a gift is to be given or received... time to stop clinging, then, and open my hands.

I don't mean that like the times when I'm talking about holding on for safety while I'm "wall walking." It's a metaphor.

But wall-walking too, is a metaphor.

Great. Multiple Sclerosis, Disease of Many Metaphors.

And as I've often said... the jokes write themselves, don't they?

Butt-based humor

Things have been indeed, very intense, since I last corresponded with you.

What has passed for "walking," even generously called "wall walking," has significantly degenerated. I still am sorta-kinda-vaguely ambulatory around the house, but only in certain rooms; there's a corner between the front door and the living room that doesn't really provide me quite enough to hang onto (it hasn't been an issue until nowadays), and that one particular corner can be kinda scary. It may not be actually treacherous, but it sure feels that way.

I have been dipping into full-on terror flashes. Able-bodied friends who really do help me a lot have suggested things as simple as "here, take my hand" or "try this, that should work easily" turn out to be not the right thing and the even beginning to try them doesn't just scare me, I lock up in full-blown terror. Not a "panic attack" or anything like that, but I just freeze up and say "I'm lost" or "I'm scared" and eventually, finally, get around to saying "I can't."

I got a chair for the shower, last week. Nice indeed to be able to just sit in the shower, rather than hang on to thing never intended to be hung onto and hope they'll not break or come out of the wall. But getting over the lip of the tub, that's a problem. I'm going to physical therapy today, I'll talk to my therapist about that and see whether she has any suggestions...

But I think it's time to stop trying to devise "oh, I'm sure that'll be fine" solutions that turn out to be completely not fine, or if fine at the moment then they suddenly become treacherously temporary solutions, especially temporarily safe solutions... it's time to  find a professional who makes houses more handicap friendly. Who knows how to make things actually safe because they work all the time with people just like me.

Because, unfortunately, "better" is one thing I ain't getting.

My wife is gonna get a new car next week. She's very excited! And I'm very happy for her, too. Loans all pre-approved, we're set to go. She knows which type of car she wants. But we're going to be sure that my wheelchair can fit into the trunk, before anything is completely settled.

Ah, accommodations. "Gotta make sure it'll fit the bassinet" is one thing. "Gotta make sure it'll fit the wheelchair" is another.

With luck, I'll outgrow mine, too. Health-wise, not girth-wise. Although at just over 6 feet tall and currently 136 or so pounds, a little more mass wouldn't hurt. Especially in the butt. Yes, I need a bigger butt. To make it easier to sit on my shower chair, for one thing.

Now, how many times do you ever hear that? A wish for a bigger butt.

Ah, MS tragicomedy. The joke writes itself...