Tuesday, March 31, 2015

Isn't better... Better?

Ah, choices, choices... As I'm entering this, I need to decide whether to attend to Alan, my misbehaving bladder, or let him do his Thing, whatever that may be, and deal with the aftermath later. Each has a price. Even "do nothing" has a price.

I just finished snagging a mid-morning snack. There's a price for that... and eating nothing? There's a price for that.

Choosing anything, MS or not, has a price. But on the MS Highway, choices and prices are clear, and high.
I definitely would prefer to choose comfort over discomfort; "this makes me feel better" over "This does nothing for me, no matter what anyone not driving this body says about its promised benefits."

So here's a thought... I'm going to finish this, then going to go do something that makes me feel better. Deal with Alan, maybe go down a herbally-assisted path (they often really do make me feel better), listen to some music, maybe podcasts, maybe cartoons. As you can tell from my recent posts, certain cartoons really do make me feel better.

And isn't better...


Sunday, March 29, 2015

It's... not.

A quick post, then back to bed. Tying the first two words was a session of "mangling the text," and most of my initial time was spent undoing the errors and working around the ever-helpful autocorrect.

You can guess how I feel about that. But, as Steven Colbert often said, moving on...

A friend of mine had some brilliant gifts to share yesterday... we talked about the same issues I shared yesterday, about finding leaving the property (of my house, the house and the back yard/patio, specifically) to be as unpleasant as it gets, making me often regret every moment of the adventure.

He reminded me of a favorite saying I had for students who were having math or programming difficulty: if you have no idea what to do (typical in high-school math circles), just remove complexity. Doesn't matter what you do or how. Just remove complexity.

Think about the basic high-school algebra struggles, all about "X = what, exactly?" They're hammered with things like "reflexive" or "associative" or all sorts of things, but all of them usually confusing as to WHY you would do "whatever." Basically, it works out to put all the X's on one side of the = and the not-X's on the other side. Use the rules, make only one X, in front of the equal sign. Then if you need to, fiddle with the non-X side to make the answer as simple as possible.

My condition is what it is, and my current state means that I experience certain things, which things have costs. There's very little, if not nothing, that can be done, and what there is makes me feel better or worse. So, my friend said, what about the basic principle: Reduce complexity.

Leaving the property involves complexity, often that turns out both useful and horrible. So, reduce complexity: stay on the property. Stay in bed and rest.

And what's bad about ... that?

Sure, if I don't go to TomatoMania this weekend, I don't get to buy the plants I want to have in my garden; the obtaining of which is simplicity itself if you're not chair-bound or long-list-of-issues that I'm beset with. So, I don't go... what's the downside? I contact my Garden Guy and tell him that the tomatoes are on him, I'd sure love my Tomatomania goodies but I've loved everything he has planted, so no long-term downside there. Go with the flow. Relax, even, why not?
But basically... reduce complexity. What's mostly lost is discomfort, effort, and dissatisfaction. Suffering, even.

And how is clinging to suffering a good idea?

Saturday, March 28, 2015

Oh well

Wow. Again, I'm blogging. Things must be better, eh?

An interesting time, looking at another dark time: I seem to be in a state of "I really don't want to go 'off property' (off MY property, leaving the home and all it contains)" for basically, any reason.

I just want to lie down. Sleep, maybe. Listen to cartoons that warm my heart. Meditate.

But not go "off property." Frankly, getting off the veranda into the back patio is enough. I'm not even psyched to be pushed onto the lawn in the front yard, so I can see and with luck enjoy my front-yard plants. Formal camellias, roses, surprise after surprise; it's quite a nice yard. But wheel chairing over uneven ground makes me uncomfortable; thank God not sea-sick nausea, but it does create a very "off" feeling.

Going off campus involves things I'm beginning to enjoy less and less. The transfer from the chair to the car--transfers of all kinds are becoming less fun because I'm never really sure if I'm going to transfer safely and not collapse or slide off onto the ground. Ouch! And then there's the "riding in the car," which also can addd to the "queasies..." Sudden stops, harsh stops, bumpy roads, it doesn't take much. And of course there's the elimination nonsense, the continual struggles with Alan the bladder.
Today is Tomatomania, source of all sorts of amazing stuff, including magical plants like Black Krim and Pink Ping Pong. But, getting there involves transferring into and out of the car, dealing with the ride there and back, surviving the rough ride over the lawn where they always hold Tomatomania at Descanso (the closest and most "convenient" location), plus the inevitable bumpy paths typical of such places. Then all the stuff gets home, gets planted assuming I or a friend have the energy--and oh yeah, because I don't drive and couldn't well, accomplish anything from the above list, without help from someone else. Who gets to load me and all of my stuff into and out of some car, deal with the transfers while praying that all will go well, do all the pushing over the un-fun bumpiness, help with if not full-on do the planting, and wouldn't it be fun to go to lunch? Oh yeah, except for the queasiness and the transfers. 

Leaving the property ends with, or at the very least involves, unpleasantness. And besides, I just want to be in bed anyway; I don't like getting up for anything beyond making tea; at least that never makes me feel sorry, as opposed to eating, which I frequently find to be necessary at best.

And the question arises, so if I don't decide to deal with the challenges of TomatoMania, I don't get my Black Krim or Pink Ping Pong or Sungold or why not, a Vorlon. Well, my Garden Guy may come up with some stuff to plant, but probably not the ones I'm looking forward to. 

I've lived a lot with "I guess that's not going to happen," I should be used to it, shouldn't I. I don't do things all the time. Like, for example, standing, in a percussion section.
Or sitting at an organ and not only "not falling off," but actually playing it.
Yeah, I don't do those things any more.

Oh well.

Friday, March 27, 2015

is that what you really want?

Thinking about some dissonances in the past... which may be current issues for some in the MS community.

A friend of mine, as I wrote about yesterday, had very much the same end-of-work experience that I did; details omitted to save space, but "the same" and "soul-sucking" will do for now.

Soul-sucking is something that I participate in and need to work on NOT participating in from now on... getting one's soul sucked well, sucks.
But here's what I discovered? Settled upon? Realized? Whatever... The Enterprise, the faceless nameless whatever that actually runs the organization... Perception and understanding are as central to its operation as it is in a plain-old human, as one might expect from something that is comprised of, well, humans.

"Injury," the Enterprise understands. Everybody has been injured somehow somewhere sometime, maybe as trivial as a paper cut or as serious as a broken bone. But the basic pattern of "injury" is well understood: Something Bad happens (for whatever reason, which doesn't matter because...), the Injured Person is sidelined for some amount of time; may be inconvenient, don't know exactly when it will end but it will end, and then everything goes back to normal just like it always was, or pretty much enough like it always was that The Enterprise can live comfortably with it.

MS is another matter. It doesn't have a clear cause. What happens when you have it, nobody knows, but however it is effecting you, you need dare I say "accommodation," as the ADA puts it. And the MS... never goes away. Never. And once you and The Disease are there under the umbrella of The Enterprise, everything has changed. Everything. And you yourselves know what the "everything has changed, now what do I do" situation has zero clear and easy-to-live-with answers. You just gotta deal with it.

"Deal with it" is something The Enterprise can't do. The Enterprise abhors being told that it has no choice and it has to do something. The Enterprise is always quick with A Better Idea that actually is not better but significantly worse, as far as practicality goes, but since The Enterprise doesn't live in the world it creates, as far as effecting said world goes, The Enterprise neither cares nor notices. "Not my world," as far as The Enterprise is concerned, assuming it's capable of that kind of self-reflection.

And thinking about it here and now... oh boy, do I ever have more important things to do than berate myself for other people's blindness. My job is to forgive them; if I speak darkly of them, my job is as Ram Dass so often writes, love God and tell the truth. Not forgiving them and staying angry does not, I imagine, qualify under "love God," and the only truth that I can actually tell is my own; at best, all I can say truthfully is "to me, they appear blind" rather than "they are blind," although I may be able to deduce their "seeing" ability, or lack thereof, the only way I can really know what they see is to be telepathic, which I'm not, as hearing some of the exchanges with my wife will quickly prove.

So where's the "gift" in all this? Blind people screwing up your life?

No... the gift is in understanding. Being significantly disabled (e.g., bound to a wheelchair) I see, and understand, and have compassion for, people who are disabled. And The Enterprise is significantly disabled; it cannot see, it cannot understand, it deludes itself, and complicates its own existence. It may cause me something unpleasant, but finding that pleasant or unpleasant is on me. Its blindness, its ignorance, and indeed its suffering, is on It.

But even so... who thinks it's a good idea to work at being more disabled?
Is that what you really want?

Thursday, March 26, 2015

So, why do it

FINALLY have the strength to check in with y'all.

My sh**tty typing has already made me regret this choice. Because it took time I could be spending on better things and spent it on correcting grotesque typing errors. Which did not improve my attitude... Anyway:

Made it "off campus" to see a friend from many years ago. She also said farewell to a much beloved job that she had held for more than 20 years (at a very prestigious university). Her job ended very much the way mine did; contemplating "why" even if it did explain everything dispassionately and accurately wouldn't have, or will, make a damned bit of difference, except in changing our understanding... which has its advantages,

I'll be looking into a project beyond this blog to assist others on the MS Highway with their ... adventures, let's say; more info when things are settled.

May plant a cucumber today or tomorrow, probably tomorrow. I hope.

In the animated series Adventure Time, one character says "Hugging helps."

Looking at Facebook commentary and, if I can't stop myself from peeking at it, a lot of today's news, I'd amend that to "Complaining doesn't help." But, Politician X said Y, which of course means (by the author's data-free assumptions) means that what they REALLY think is Z, but since Said Grumbler not being telepathic has no f-ing idea what someone is really thinking... and getting yourself aroused at a delusion definitely doesn't help, you or anyone else.

Or should we say rather, "Complaining doesn't help."

Oh, US MSers would have things to say, if grousing about our situation actually did something. But... as we can see by the people still with MS, complaining doesn't help.

So... why do it?

Wednesday, March 18, 2015

Something worth practicing

Some musings on loss, and release.

I'm on the knife's edge of dealing with the selling of my truck. I've had this since 1998 or so, I had it rejiggered to enable me to drive it with hand controls, and using said controls, drove it for years.

But not any more. A large stack of details, but basically, there ain't no way for me to drive it, even if I wanted to.

It's hard to find someone or something to yell at for "You stole this from me!" Factual fault off the table for the moment, there have been a person or two whom I have wished I could have yelled at, and maybe even taken some benefit therefrom. Somehow. Maybe...

But things neurological, those aren't as straightforward as Androcles and the lion that could be healed by just pulling out the thorn. My nervous system has, basically, bad wiring. What's to be done? Well, besides "pray without ceasing," as the Good Book says, nothing to be done. Same as aging... That happens, eventually. Yell all you want, if you insist, but all you'll bet is hoarse.

But the truck... it has been my truck! for so long, through thick and thin. And now it's time to bless it and release it.

But I feel no wish to yell at anyone, anything, existing or not. There's no "you took my truck from me! My freedom!" begging to be given voice. No, it's.... Denial? No, it has to be dealt with, I've known it needs dealing with for quite a while now, went through a very very energetically taxing trip to the DMV to get the correct forms.

And all I feel is... Goodbye, old friend. It's not denial, it's not grief, it's... the moment when you're in the dentist's chair and you refer to the tooth that's ... just ready to go... and you just say, "I think it's time to deal with that tooth." And what comes next, you know yourselves, although My Guy was as close to painless as a dentist gets. All our farewells should be that easy to endure.

So that's a good consciousness-change to work on. Say goodbye to condemnation, especially at things that don't actually exist... that takes more effort than we have to give, in this little life of ours, certainly among those of us who have been "accessorized."

The folks in the Science of Mind church would say, "I bless you and release you to your good."

Something worth practicing.

Sunday, March 15, 2015


New "experience" patterns... in the family of things like "when it gets too hot, I feel bad" or "when it gets too cold, I feel bad," which is pretty much the usual, what might even pass as "normal," for us MSers.

But the "new experience" for me seems to involve "hitting the wall." Whatever that may actually be, whine happens, I'm toast, and all I can bear going is lying down and maybe going to sleep, or at worst enjoying favorite cartoons. At most.

I wish I could go down the "cartoon road" more easily. As Rinaldo often says on Steven Universe, "I gotta put this in my blog!" Even that can sometimes be too much. Too often, too much.
This is one of th "first things to do today," so before trying anything else, here I am blogging. But not for long.

Yesterday, my wife pushed me in my wheelchair the block between our house and a local new restaurant. I had bahn mi, something I've been hoping to try for years. Spectacularly excellent baguette, baked quite perfectly! Maybe I should put in a good review on Yelp!

If I have enough energy. Doubtful, alas. But the food was good.
Long before anything arrived at the table, courtesy our exemplary server, I had hit the wall. Simply being taken there had cost most of my energy, and merely sitting up in the restaurant was all that could be asked of me. I managed to stay there until everything had arrived and, I surmise from my wife's smiles, enjoyed! But I was ready to o back to bed. As soon as possible.

I have some very dear friends who want to see me next week. I expect I'll enjoy seeing them for a minute or two; I anticipate that I'll have hit the wall simply by getting out of bed to see them; God help me getting into the car for an exhausting 10, 15 minute drive, because I'll have hit the wall before car has left the driveway.

So, then, what do I do? Well, nobody knows what to do about neurological nonsense, if I don't accept the risk of hitting the wall, I won't see friends whom I love dearly.

Besides following Ram Dass's guru's advice, to love God and tell the truth, what else is there to do?

Is there anything else to do, simply being, as we all are...


Saturday, March 14, 2015

Bad show

A jaunt to the herbalist, yesterday. I asked for some bladder-assisting herbs, which he provided and which may be doing something helpful... we'll see.

More observations, of my own challenges... If I don't eat by the clock, I hit the wall. Sure, we'll eat a littler later, one person may say.... but no, now I've hit the wall, don't have the energy to even attempt to eat, and if I don't eat anyway, I hit the wall harder. A good way to get into the "NOTHING helps" state.

Plus, software bogosity. Apple said I should install this OS upgrade. Well, I did that, but now no applications that rely upon the "piano keyboard" for well, anything, don't work. Now, even if I wanted to create music, I couldn't. Great... I have been robbed of playing the organ or pretty much any other beloved instrument by the MS pathway, but this is Apple telling me that it will Make Things Better and things now wind up not only worse, but unrecoverable. Gone.

I do not with ill fortune upon them. Well, not as such, but what I do wish on them is... So, you've made this better? Good. Use it yourselves.

As Gordon Ramsey is often heard to say on his various cooking shows...

"You served this without tasting it."

Serving it without tasting it. Great idea... or rather, as Pops often says on Regular Show...

"Bad show!"

Saturday, March 7, 2015

Why judge?

I'm seeing an interesting pattern, in the way I handle, or more specifically don't, handle things.

Now nothing has changed; still wheelchair bound, still can't stand, the usual.But sometimes, getting into or out of bed, easy!

Except when it isn't; when this happens, I'm trapped in "can't." Can barely get into or out of bed; can't deal with using my fingers to control the iPad (no matter what size), or the phone; when I'm at my studio computer, as I am now, I get into a state of "even poking with one finger doesn't work."

Well, this morning, I'll next try to add a little bit more food to the tummy; the "insufficiently fed" state is a great way to hit the wall. So, that, I can fix.

AS for the rest of the time... I don't know how to get out of the "can't state," but it would be good to stay well clear of the "freak out" state. Which sadly happens too easily...

A happy rush to the kitchen for emergency waffles... typing is better now, slightly, but better.

I am starting to come to peace with "my body part X is doing Y now" moments. Some I'm pretty much at peace with, some... as Ram Dass says, I've still got work to do.

Quite the amazing gift of MS...

Coming to peace with the reality of my expression of this incarnation. A first lessons...

It does what it does.

It just ... happens. It happens anyway, so...

Why judge?

Friday, March 6, 2015


An interesting gift of being pretty much house-bound, certainly being chair-bound, non-driving, non... pretty much anything... is seeing the difference between "needs" and "wants."

I "need" whatever it is I say I need, at the moment. It's often a whim, a preference. I "need" new Pop-tarts. I "need" to see a new Adventure Time; it has, after all, been a full seven days since the last one.
I "need"--well, I'd really, really like--the cat to stop screaming at me. If nothing else, I'd really like to understand what it is she's "talking" about.

But real needs? I need my prescription medications available by their schedule; take what I'm supposed to take at the time that I'm supposed to take them. I need medical devices available and ready when I need them; no worries, no justifications, I need what I need when I need it or Bad Things may happen. What said Bad Things may be depends on the devices and how my need for them is expressing itself.

But, the gift? Seeing how the caregiver needs care given. And said caregiver is just like me; sometimes it's "wants" and fulfilling said wants would be very much enjoyed, but sometimes it's "needs" and best you should fulfill those as best you can. And sometimes what's really important is... nothing.

Ask no care of the caregiver. Send the caregiver out to have fun on their own terms, and in their own way.

The smiles you get back are, in their own way, care given to you.

So, sometimes wu wei, or the doing of nothing, is the doing of...


Wednesday, March 4, 2015

Close enough

Another small triumph.

Breakfast is the only meal of the day, nowadays, that I eat without difficulty. I don't run a very wide gamut of choices, but small changes make things interesting--today we put that on the waffle, but yesterday we used that, and if they're different enough, it keeps away the monotony. There are things that I like a lot and enjoy every day, but I keep things different and that keeps things fun.

But back to the small victory: the normal breakfast is I'll have that today, in this case, cereal. Often I have a waffle, but today after the cereal, I decided.... why not also have a waffle!

Y'know, when you're in a state your doctor has called "incipient starvation," I think it's probably a good idea to eat things whenever you feel like eating them (assuming they're healthy enough for you, we do our utmost to only have healthy things in the house).

I still don't feel "hungry" as such, but just being interested...

Close enough.

Tuesday, March 3, 2015

Echoes of Yenta

Had a great session with my MD/neurologist/acupuncturist/spiritual advisor on Monday. Very much a "one-stop shop" kinda trip.

Most amazing was that I was able to get on and off the exam table, and go from sitting to lying down and lying down to sitting without any help. Given that for a couple of months I've had to be dead-lifted onto and off of the table, this was really huge.

I dunno if I'd call it an "improvement," but it was very definitely the "opposite of worsening," which by definition is namable as "improvement," but there you go.

It does not qualify me for relapsing/remitting, but I have to admit that experiencing anything besides "circling the bowl" definitely qualifies, at least a little, as "better."

You take what you get, right?

Of course, right.

Sunday, March 1, 2015

Ram Dass and tea

I sure have been bad at keeping my blogging current. So, we do what we can to do it better.

Do the best you can with what you have. MS or not, this is a good basic way to live, it seems...

The first teaching for the "way of tea," the Japanese path of Zen tea-making, is beautiful and simple:

Make the best cup of tea you can.
Not "the best cup of tea that has ever been made," just simply: the best cup of tea that YOU can make, here and now, with what you have.

This is very much a reminder to me of the ongoing gift of MS: whatever it is, dealing with the bladder catheter, transferring from whatever to the chair or the chair to whatever, typing something like these with whatever eye-muscle "cooperation" may be happening at the time, putting on a jacket so the air outside on the back veranda is tolerable, brushing my teeth using a teeth-brushing bowl that I got in the hospital because the basic "use the sink" techniques are no longer available to me... the list goes on. But it comes back to the same thing: do the best you can, today, with what you have and how you are, here and now.

Ram Dass and the tea ceremony... unrelated, yet somehow, the same.

What time is it? Now. Where are you? Here.

Just be here now.