Health "care"

So I call my insurance company to find out whether things like walkers and wheelchairs are covered, and if so, how to get such things.

Well, the first thing I was warned about, was that if I just go get one, they won't pay for it. Well, they may pay something for it, but not much. Because it wasn't approved, you see. It has to be approved.

So, I ask, how does the approval process work?

It starts with a doctor prescribing the device. (Fair enough, I suppose.) But he has to prescribe a specific device. Now, understand, I am blessed with a primary care physician who also happens to be a board-certified neurologist. WTF does a neurologist know about specific types of locomotion-assistance devices? WHY TF should a neurologist have to know about about how insurance companies classify specific types of locomotion-assistance devices?

Anyway, step two. I need to go to an approved (there's that word again) provider of said devices. There, people who neither know me nor my condition or medical history will decide whether or not I need the specific device that my doctor has prescribed.

If...IF...they approve--ah, the poetry of that word--the prescription and the application of the prescribed device to my condition, which they don't know much if anything about, then they contact the insurance company, where more people who know even less about me, my condition, or my medical history, will decide whether said device is in their opinion appropriate for my situation, and then decide whether my plan covers said device given their (based upon nothing but paperwork) assessment of my situation.

And once that final, blessed approval is given... then, they'll pay for it.

Maybe.

Right now, they have an extremely poor record of even processing claims that I submit to them. I've submitted somewhere on the order of twenty or thirty claims... they've processed about five. Where are the missing claims, I asked? What missing claims, they responded. Oh, just send 'em in again, they suggested.

To people who foam at the mouth about what they deride as "Obamacare" and the evil evils of "socialized medicine," I want to say... shut TF up. Try walking a mile in my shoes, using my malfunctioning legs--that is, if you can, which you won't be able to, because it really really hurts and your legs will probably give out long before you hit the quarter-mile mark... and see how you like how our current system "helps" you to get something to help you walk at all.

'Course, if I could stand the travel (which I can't), I could go to a country with a reasonable health-care system, see a doctor, have them prescribe me a walker or wheelchair, and leave the hospital with it. That day; that hour. And the national health-care system would probably pick up most of the tab.

Horrible life, that. Good thing we don't have a system like that.

Wow

Wow.

I drove my manual-transmission truck today, for the first time in many days. Sometimes a little unpleasant, but perfectly safe and incident-free.

I went to school and got a lot of work done.

I think I got more done today than I have in several weeks.

Nice to know that such can still be done.

Nice to know that there's still hope.

Sometimes a hat is just a hat

Freud is said to have said, in reference to cylindrical objects that might or might not have phallic symbolism, "Sometimes a cigar is just a cigar."

Last year, I had a logowear company make me some hats with my own logo. I figured, why advertise for other people for free? Why not advertise for me? Have fun with my own logo?

Last week, I lost it. I think it may have come off my cane (to which I thought I had securely attached it) when I was walking from a restaurant to the Apple store. And no, I'm not blaming this one on Steve Jobs, don't jump the gun on me, dear reader.

So, the hat with which I proudly proclaimed "Robert Parker Music," just kinda... fell off. And disappeared.

It has been thus with my compositional life. I used to have one, and sure, I can still do arrangements, but really "I'm proud of this one" compositions, big things for band or orchestra (whether I have a live group to play them or they'll just be rendered by my built-in electronic symphony), I'm not writing them any more. It's like my muse, or whatever it was that gave me the energy to do this stuff and whispered the music into my ear so I could write it down, just... fell off and disappeared.

Yeah, I have a spare hat. It's in a box in the garage. But I haven't gone out to get it, yet, because... well, the music of Robert Parker seems to have ... fallen off and disappeared.

Now, I suppose, if I were looking for symbolism, one could say that going into the garage and getting the spare hat, and putting it on and wearing it proudly, would be an act that reclaims what was lost--sure, it's not exactly the same, but it's new, and maybe "something new" is precisely what's waiting for me in the wings.

Or, one could say that what's lost is lost, and the "spare" is a poor replacement for the glory that is now gone forever.

Or, then again... sometimes a hat is just a hat.

Out of the box

An interesting blog post by Seth Godin this morning. Instead of "thinking out of the box," he argues that you should blow up the box. He concludes, "If the only alternative is slow and painful failure, the way to get unstuck is to blow up a constraint, deal with the pain and then run forward. Fast."

Well, slow and painful failure (at least in some senses) might very well be my possible future. Certainly slow failure comes to us all, those who are lucky don't have to deal so much with "painful."

So, Godin says, blow up the constraint.

So, the interesting question, now, is: What exactly is my constraint?

Sure, MS is karking up my walking, all sorts of physical functions, currently it's pounding me with nasty fatigue and sapping my creativity.

But, is it really my "constraint?"

It is if I want it to be, of course... but could it be that MS is an enabler rather than a destroyer, a catalyst that, by eliminating certain paths of action, is actually creating new possibilities?

It is if I want it to be, of course... and, given the choice between limitation and new possibilities, I'll take the latter.

So, the universe is holding something out to me... I don't know yet what it is, or how to take it. But I think I should somehow open my hands, and my heart, and receive it.

How? Dunno yet.

Yet.

Good intentions; conundrum

They say the road to Hell is paved with them. Well, I don't know about that, but certainly, my surroundings are several feet deep in said paving stones.

Last night, I was awake. A lot. I was thinking about/processing/confronting all sorts of things, and at one point, I thought that said process might make an interesting blog posting--about confronting fear.

A nice idea. Don't have the gumption to do it, right now.

I thought I'd take the car out this morning. Mostly, just for a "can I still drive?" experiment, but also to handle an errand or two.

Walking into the room I'm sitting in now, I felt dizzy-ish. (I never feel dizzy, just "sort of" dizzy.) So I'm wondering whether the exposition is a bad idea, now.

I wanted to do the dishes this morning. See above, dizzy-ish. So those aren't getting done.

Frankly, I'm surprised I'm even able to do this.

The good news is, I'm not freaking out. I'm not obsessing about "Is my life just over? Will I ever be able to live the way I used to? Will I ever be able to just go to the store without wondering if it's a horrible idea to even try?" I imagine that it's pretty easy to go down those roads, into depression and panic. And I'm not going down them, I'm not really even tempted to go down them.

But I can't do things, or maybe I can; and I don't know whether I can or can't, should or shouldn't.

There was a book in the 70's, put out by Consumer's Union I believe, titled Licit and Illicit Drugs. Everything you wanted to know about the Fun Stuff, whether you were taking them or not. Anyway, they talked about driving under the influence, and said that on driving drunk, you thought you could drive, but you were wrong, you can't; but while stoned, you actually can drive, you just forget how. They suggested that it was actually possible (theoretically, they hardly recommended it) to learn how to drive stoned. But not drunk. In either case, don't try this at home.

This is my conundrum; perhaps I still can do things, but just think that I can't. Of course, from the subjective standpoint, thinking that you can't and being right and thinking that you can't and being wrong are identical.

One obvious avenue of experimentation would be to move from the subjective to the objective--think you can't do X? OK, try to do it, see whether you're right or wrong.

That's fine when you're behind a potter's wheel. Not fine when you're behind the driver's wheel.

So, try it, give up, or postpone dealing with it? As they said in Glorshon Wars... a conflict that demands your choice.

Flavors of "can't"

But first, an aside... Seth Godin has written a blog post about our (and specifically, busniness's) fixations with perfection, suggesting that "how are you?" is coming to mean "please list everything that isn't as perfect as it should be."

Sometimes when I'm asked "How are you?" I want to answer "How much time do you have?"

But I don't. Usually...

Anyway, on to the flavors of "can't"...

There's "forever can't." You can't fly. You can't outrun a cheetah. You can't outswim a dolphin. And your answer is... who cares? I can do stuff they can't. It all works out in the end.

There's "temporary can't." I took an anime-voiceover class this weekend. Absolutely loved it. Was sometimes quite bad at it. Was sometimes good at it. It's something that I can't do well...now. Yet, if that's what I choose. But I learned a lot. Oh, what I learned. I was the worst person in the room and benefitted thereby. "Temporary can't" can be encouraging. Can be empowering. Can even be fun.

There's "suddenly can't." Every living creature gets to experience that; always, more than they'd like to. We MSers, we get precisely our allotted share of these "can'ts," but they come to us at a vastly accelerated rate. It's no more or less welcome, but we don't get the balm of age, time, or anything else, really (given that we're living a life with poor insulation) that eases those "can't's" entry into our lives. I just got two whoppers last weekend; I can't take organ jobs any more, I can't drive my stick-shift truck any more. The way I've been "walking" (some authors have described walking as a "controlled fall" and I'm way too close to that point), I'm concerned that simply walking is going to become a "suddenly can't," and precisely when I least expect--or need--it to happen. Although, with my perspective on MS, it's going to happen at a moment, and in a way, that is darkly and twistedly funny, the sort of joke that's always described as "you just can't write things like this."

"Suddenly can't" is a gift. But you don't know it yet. Alas, you can't (forgive the choice of words) recognize the gift that it's going to bring you, before that gift arrives. But it nonetheless heralds a gift; a perfect gift, which the universe will inevitably place right into your hands, at just the perfect time--at the moment that you're ready to receive it.

Everything horrible that has happened in my life, everything that I regarded as "nothing worse than this has ever, or could ever, happen to me," that left me wracked for months or sometimes even for years, has caused something absolutely wonderful to happen. And that wonderful thing would not, could not have happened, but for the horror that enabled it to come to pass.

God works in a mysterious way. And usually one which, in the fullness of time, will make you laugh.

Rubicon revisited--why stop at ONE?

Another "last time," at least for now.

Drove my truck from Pasadena to Reseda and back. 60 miles. Was visiting a new herbalist. Had a wonderful exam, got a new formula. If what he gives me works, it's gonna make a big difference.

And, oh yeah. I think that was the last time I'll drive my truck. I don't want to say "ever," but certainly "until my leg symptoms vanish." But because this means that I need to get replacement wheels... it might as well be "ever."

I started talking to people about selling my truck. I started asking around for maybe where to get another car.

How I'm gonna pay for said car AND for MS... that remains to be seen.

Another one of Those Moments. I don't know how I feel about this, yet. Am I ... simply accepting it? Am I ... not really connecting to it? Am I ... just numb?

Definitely something I'm tired of. Not really knowing precisely how I feel about things... especially when those "things" are things that would, under more common circumstances, wig people out. I don't know if I'm not wigging out because I'm accepting them, or because I'm not connecting to them.

So, over the last two days, I've pretty much said goodbye to my career as an organist and to my vehicular independence. Hm.

Not bad, for one weekend. Wonder what'll happen Sunday? (At least I have rides already scheduled...)

Rubicon

I just turned down an organ gig because of MS. The first time I've ever turned down a music job because of the MS.

It was as organist for a funeral... A Sunday-morning service, I might have been able to get away with, but not a funeral. Too much on the line.

And of course, if the "inability to play the organ" wasn't bad enough, the gig was an hour away on a completely unoccupied freeway. Like a "5AM Sunday morning" unoccupied freeway. Driving down there during the week would have been 90+ minutes of non-stop pain.

Is it better to not do this gig? Heck, yeah.

But although I've turned down many a gig because I was already booked, I've never turned down one because I couldn't play an instrument that I used to be able to play. And it was indeed not just an instrument I could play well, generically speaking, but an organ that I was really familiar with and could really, really play.

Until today.

I think I'm OK with it... but I don't know yet, really.

As with so many things MS, we'll have to see how this one plays out.

Fifty percent happy

I sacked out in bed today, after a real "blammo" acupuncturing (which is, from the way I felt getting off the table, going to make a huge difference, specifics to reveal themselves in time), a pretty serious snooze, several hours.

When I woke up, I was hot, pretty uncomfortably hot. Bedside thermometer said "87," not exactly in the MS comfort zone.

Except, my legs felt all bundled up and toasty, as though they were under a nice down comforter (they weren't). They felt warm enough, thank you very much, but they were comfortable, much moreso than my core.

Yet again, I'm Schrodinger's MS patient. I'm 50% happy with the weather, no matter how hot or cold it is.

Many things can be said about the MS experience, but "uninteresting" is certainly not one of them.

The gift of "no"

I had some trouble sight-singing some music this morning.

I've been having a few troubles with music, lately... I've been wondering whether the music road may be starting to take a turn to the dark, bumpy, narrow, or unnavigable.

And then I thought, what a wonderful word "no" could be.

Because on the flip side of "no" is "yes."

On the flip side of "don't do THAT" is "do THIS instead."

I'm not ready to mark, announce, or even plan for "the end of the music road." I think it's still too early for that... even if, perhaps, I'm beginning to see the first sign posts.

But if that is what is to be; if I am indeed going to come to the end of the music road...

it means that another road is beckoning to me.

Which means, just as I am being sensitive to "are we coming to the end of the road I've known," I need to be just as--if not more--sensitive to the road I do not know.

Yet.

And I think that I hear the voice of said road calling to me... but I don't know precisely where the "onramp" is, or where it's going to take me.

Yet.

These are also the lessons of kyudo... Listen to the bow. Give fully, and thereby you may receive fully. Don't claim the shot; be a full participant, but it's not your shot. It never was.

And, then what?

Shoot again.

Not-as-bad-ment

Yet again, the English language isn't helping me through my MS journey.

"Improvement." Everyone loves that word. Everyone feels good when they're improving. Everyone hopes that whatever treatment path they're following will lead to improvement.

At physical therapy on Friday, I asked my therapist, "Is this doing any good?"

Well... she said (basically) that physical activity is known to be good for MS (the usual), and that maybe, if I'm indeed on the "progressive" MS track, whatever symptoms I have right now are not as bad as they might have been had I not been doing physical therapy... of course, there's no way to know either way whether that's true.

So, I'm looking for some sort of improvement to hang my hat on, I can't find any (I'm finding the opposite quite easily), and neither can my physical therapist.

The most I can hope for is... not-as-bad-ment. Maybe. If that, indeed, is happening. Of course, you can't be sure either way.

I'm glad I tend to find this funny rather than a cause for despair. 'Cause I'd be simmering in despair, if I had such tendencies.

But I'm not finding it as funny as I often do. And "dark humor," believe me, I know dark humor.

But I'm not despairing.

Which is, I guess, an improvement.

Laughter; work; light

Yesterday, for the first time in years, I watched some cartoons... and actually laughed. Not loud, not uproariously... but laugh I did.

And it felt great. My wife was out at the time, but when she returned home, she remarked immediately on how much lighter I looked.

My doctor was right, when he said I need to lighten my heart.

Now, there's an interesting concept... work hard, to diligently and intentionally create... lightness.

Hope. Right... Now what?

I'm starting to think that there is no hope that anything is going to help me. I'm not thinking "cure," I'm thinking "ameliorate." To fight the symptoms of energetic, intellectual, creative, and spiritual depletion. Fix my walking? Don't care, really; I can always get a wheelchair. The "two cane" system's working well enough. But not being able to think, not having the energy to create, or even to enjoy the world... that's bad. That's very, very bad.

My acupuncturist can give me energetic first aid, but his treatments don't stick. Got treated yesterday, I'm back in the hole again.

Green tea used to give me energy, even temporarily. Now it doesn't.

Chocolate used to give me energy, even temporarily. Now it doesn't.

I don't have the clarity I used to have... although the clarity I do have, is abundantly, powerfully clear, so I guess that's a wash.

I don't have the creativity I used to have. But when I do get an idea, it's usually a very good one. Although all my good ideas are non-musical ones, which is OK when that's the kind of idea you want, but when you want a musical idea... and can't find any... that's bad.

I had such an unpleasant time of dealing with the chaos of the world, earlier today, that I padded around the house for about ten minutes debating whether to brave the world again... and decided not to.

I'm not at all in a state of despair... honestly, I'm not. "My life" is not over. I don't even begin to think about it in those terms.

But the life I used to have, the life I was accustomed to, the life in which I was so wonderfully comfortable... I was going to say "may be over," but I think the truth is far closer to "is over."

An old saying goes, "Before enlightenment: chop wood, carry water. After enlightenment: chop wood, carry water." Well, there ain't gonna be a lot of chopping or carrying, locomotion and balance being as they are... but I know what they mean.

And another old saying, from chado, the way of tea: Make the best cup of tea that you can. Not the best that can be made, not "the best that ever was made": the best cup of tea that you can.

Clearly, I need to receive the "tea-making" implements that life is currently handing me. Trying to hand me, if I would only open my hands, and my heart, to receive them.

What are said tea-making implements? What's the tea I'm supposed to make?

I don't know. I really, really, don't know.

But the answer does exist; I just don't apprehend it yet.

Yet.

So there is hope, isn't there?

Change required

Another nice treatment at the acupuncturist. Well, certainly "nice" in the sense of "what I needed," but it hurt more than usual.

All sorts of energy blocks. Doc said, as he has many many times before, that these energy blocks are a call for a change. A fundamental, significant change.

And, of course, because dealing with the world is such a big deal nowadays, any change that begins with "go somewhere and..." or "do something like..." are not the changes that are required. It needs to be an entirely internal change.

So, even if I knew the answer to the question "what do I do to change," it wouldn't be a useful answer, since "what do I do" is the wrong question.

He also told me I need to be more light-hearted. That I'm too serious. That I need to have more fun.

And maybe I should write some happy music.

Now, that's something that I can "do." I had started poking at some big overblown sturm und drang composition, but it has been going nowhere. So... time to laugh and smile.

Hey, as far as crapshoots go, it's better than shooting yourself with interferon. So, tomorrow, I ditch the grim and start exploring "happy."

We'll see where that takes me.

What do you want?

Seth Godin's recent blog entries have been resonating with me, especially his most recent offering. I've always been a "cut to the chase" kinda guy, but that has been amplified by The Disease. It's not that I'm brutal or impatient with people, but I have been tending to be able to see far closer to the end of the road, since The Disease, and sometimes that makes for ... interesting... situations.

I had a discussion with some of my friends, about some project they were involved in at their workplace (details don't matter, I'm leaving them out to better "cut to the chase").

"We're working on a big Buzzword Initiative," they said. You know the sort of buzzwords that get tossed around at such times.

"How do you define 'buzzword'?" I asked them.

Silence.

"From what I know of your organization, you already have plenty of Buzzword, and I can see that just by looking at x, y, and z. What is it that you're doing incorrectly now, that you want to do differently to achieve more Buzzword, and how are you going to change things?"

Silence.

As my beloved teacher Eugene Burger says, "How will you know that you've gotten what you wanted if you don't know what you want?" Fortunately, I didn't have anything to do with said Buzzword project... and a good thing, too; I heard that a lot of meetings were held, many initiatives were undertaken, many events were scheduled and occurred, more meetings were held (just in case, I guess) and everyone felt good about having been so busy and done so much.

Except I don't think they know what they did, besides be busy. No one has yet told me what, if anything, was accomplished. What improvements were made... or, frankly, even if any changes were made.

I try to "play the MS card" rarely if ever, at my own workplace, but one of the only ways I play it is to tell them that if they have a question, ask me; if they need my help, I'll do my best to give it; but if you can't even describe clearly the problem you want to solve--or if you don't want to take the advice I give you, and you already know that before I give it--don't ask me. I only have so much to give, and I need to give it where it'll be put to best use.

And frankly, I'm always more than a little dismayed at the negative reception this sometimes receives. I mean, all I'm asking is that people decide what the problem is before they ask me to help craft a solution to it. Even if the problem is "we don't know what the problem is, but we want to identify it"--even that is a clear statement of the underlying problem.

Is that really so much to ask? Before you ask anyone, MS or not, to help you? Jesus said, "Knock, and it shall be opened;" but understood was the first step: pick the door first. Don't just stand in the hallway and call meeting after meeting about how doors (in general) aren't open, call it "the Open Door Initiative," and then congratulate yourself for having done so much work.

Especially when meanwhile, the door is still closed... because you never walked up to it and knocked.

Uptown/Downtown

I'm now walking with two canes. Well, not "canes," exactly--they're hiking sticks, they're about 4.5 feet tall. They're tall so I don't lean on them (ideally), and when I'm really using them correctly, they're just for balance and steadiness rather than digging in and pushing. When I'm using them best, I walk with them at my sides, with my chest open and my shoulders relaxed.

My balance and posture are great, when I'm using them correctly. They make me feel much more secure in my walking. They make me feel more balanced; yeah, I was shifting the cane from hand to hand a lot, to try to impose evenness, but with one in each hand, my effort is balanced evenly between my right and left hands. They're a great change. So that's good.

But somehow, with two walking sticks... somehow, now, I actually think I feel like I'm really disabled. I was feeling challenged... but now, I feel disabled. That's not good.

I'm definitely gonna have to let this go a few days and see how my process plays out.

Cost of living

Now, when I'm talking "cost," I'm not talking "dollars" (which fly out of my hands disturbingly quickly, usually headed at MS-related services), but energy. Spoons, as many MSers would describe it.

Today's activities:

1. Drop wife off at train station.
2. Drive up the street to grocery store.
3. Do a quick bit of shopping, including getting tonight's dinner.
4. Drive home.
5. Put food away. Then, take a break; have a snack. (I was feeling shaky.)
6. Drive to vet to buy cat food.
7. Struggle up the stairs to the vet's door, to discover that they're closed.
8. Drive to post office.
9. Mail score/cd combo to publisher (keeping of fingers crossed, and waiting for publisher to receive and respond, thankfully require no additional energy)
10. Drive to pet food store.
11. Buy cat food.
12. En route back to car, run in to a friend I haven't seen in person in a long time. We have a wonderful talk; standing in the sun as we talk, my core gets overheated, my legs are grateful for the warmth.
13. Say goodbye to friend; push grocery cart back to car (it's getting real hard to walk, by now).
14. Drive home. Much more uncomfortable than I liked, the driving.
15. Lug cat food into house.
16. Open bag, feed cat, put bag away.
17. Turn on A/C and finally, sit down.

Now, before this summer, I would have described that in a single paragraph, with zoomy descriptions: Dropped my wife at the train, whisked by the store, zipped over to the vet (closed, alas), ran by the post office, shot over to the pet store, ran into a friend (we talked), and popped back home. As though it were just one big sweeping motion. A three-spoon day, at worst.

Now, everything costs. A lot. Each one of the above activities took too much time--mostly, because I walk so very, very slowly nowadays--and way, way too much energy. Each one of those is a one-, or maybe two or three-spoon activity.

How many did spoons I have to start with? I'm not sure, exactly... but not that many. Not even close to that many.

This is one of the things about my current expression of MS that I'm having the worst time coping with. Sure, I could do it, obviously, because I did do it. But at a price... My ever-slowing walking pace costs a disturbing amount of time, and now I have to spend more time on recovering, from spending too much time spending too much energy.

Well, there are only two solutions: Spend less, or recharge more. Haven't figured out either of them, yet.

But I hope that yet is the important word, in that situation. I'm especially interested in the "recharge more" part--that, I'd really love.

If I could get to "recharge" at all--that'd be nice, too.