Tuesday, September 30, 2014

Who needs it?

Had quite a chat (as always) with my primary medical caregiver.

Among other things, not even thinking about "M.S. has done X to me."

Since it doesn't really exist, it can't do anything. And, also of course, there's no one/nothing to rail at, or blame. Although saying "M.S. really kicked my ass this week" does simplify the conversation. (Something I discovered long ago is that people in general don't want details about what's physically going on, they just want an answer.)

But no, I don't go down the Blame Tunnel or anything like that. If I'm tired, I'm tired. If I'm in pain, I'm in pain. That's pretty much it.

If I wanted to go down the "pity path," oh there are many onramps. But I have enough trouble simply using this keyboard, simply controlling my right hand enough to take the cat food out of the refrigerator without having it spill all over everything (a fate which has befallen too much "human food," much less cat food) is enough to deal with.

Bearing a grudge against, blaming, ascribing anything to something that doesn't exist... that, I don't have the energy for.

Who does? Who really needs to...?

Saturday, September 27, 2014

But first...

Oh my, it has been a few days, hasn't it!

I've been giving unquestioned priority to working on this re-arranging of an orchestra+choir piece to wind ensemble (zero strings) + choir. It took a few days to make it work anyway, but things were complicated by what I can only describe as "hitting the wall"... energy, ability to manifest, ability to control coomputer-y things like a mouse (which yesterday, was simply flying out of my right hand, it was worse than "dropping" it), simply poof! gone, time to go to bed now...

Well, I made it. Gonna send one more piece of e-mail, and I'm done. Gonna use what energy I have to deal with some Medical Stuff, and then I'm going to bed.

But first... a cookie.

Because, damn it, I deserve it.

Saturday, September 13, 2014

Gifts await us all

Many thins can be said of the MS experience, but "dull" isn't one of them.

I got asked by this MAJOR university to re-jigger a chorus+orchestra piece of mine into a chorus+wind ensemble, zero strings! The sort of challenge I have heretofore always enjoyed! But nowadays, what I'm definitely not enjoying is shoddy hand control, dealing with the mouse and keyboards so very poorly. Very, very poorly... More info after I survive  the experience and deliver the finished product.

Yesterday, in other news but still speaking about the "hand crappiness"... Trying to write something on a piece of paper, I couldn't control my right hand well enough to put the pen onto the paper, much less control it well enough to write something recognizable as letters, much less as actual words.

Let's not go into the difference in experience between typing 100 words per minute--yes, timed and everything, that's really how fast I used to type--and the left-hand only, often poke-one-key-at-a-time, never look at anything other than the keyboard with occasional "Oh sh-t, I just typed that?" moments in stolen glances at the screen...

But here's the capper for the last few days: A friend of mine e-mailed me yesterday about how his wife has this nasty, nasty, thing growing in her brain which, if she's lucky, is in an operable place and, with today's disco surgery, might actually get removed and her problem solved! A similar thing happened with my own mother... she spent the day in disco surgery, I saw her the evening that she came out of the recovery room and got back to her hospital room, and within a couple of hours after leaving surgery, she looked better. Yes... better!

I haven't figured out how to tell them that, from my particular lane of the Neuological Highway, she's in great shape. Two reasons: they can point to what's wrong, and if they take it out, she gets better.

MS doesn't work that way.

Oh well.

But one never knows... Gifts come in the most surprising ways, from the most surprising places.

And all of us can certainly benefit from saying farewell to that which we do not need, whatever form it may take.

Gifts await us all. In the most amazing ways.

Saturday, September 6, 2014


Something I never expected to hear from a dyed-in-the-wool urologist...

I was asking him about my current bladder conflagration... Alan (my name for the bladder, long story there) complains bitterly demanding attention, I transfer (with some difficulty) to the commode and Alan seems no longer interested; I get up to leave, he screams again. I catheterize myself after all this screaming, and get a few tablespoons (not, by my lights, a good use of a catheter, given what they cost and what a f---ing pain in the ass it is to get them delivered to my house); I'm lying down in bed, Alan starts leaking but NOT complaining, I cath and whaddaya know, 400 ml! And let's not even talk about the difference between "leaking" and "gushing."

Urologist says, perhaps a little sadly, "That's how it is with MS. Everybody with MS eventually goes there... All sorts of things set it off. Maybe an infection. Maybe an MS flare-up. Maybe something else, it doesn't take much."

And this is what I didn't expect he'd say, but given what other care providers I hang with, it makes perfect sense...

"Something's out of balance"

Koyaanisqatsi indeed. Life out of balance...

Art imitates life.

Philip Glass - Koyaanisqatsi - YouTube

Friday, September 5, 2014

Why bother

As you may know by now, I am strict about not personalizing MS as an entity, which it isn't, with wants and whims, which it doesn't have because it doesn't exist.

But there's no other way to express it as cleanly or quickly: Last week, it really kicked my ass.

Yesterday, made it out of the house for a real adventure, taking a friend for the first time to a 99 Ranch market, which he had never seen before. "Who needs Vons, this is where to do produce shopping!" he said gleefully.

He was amazingly happy. For the first time in his life, after 30-ish years as a professional chef, he encountered golden kiwi, which is quite common in the 99 Ranch world but for his, he never knew it even existed. It was delightfully sweet. We loved it!

One thing I'm definitely noticing nowadays, perhaps as a side effect of all the mantric meditation I've been doing, pretty much all the time, is being calmer. I still yelp when I drop something, but I'm not holding, nurturing, grudges like I used to. I don't have energy for much, but getting pissed off and railing at something that I know nothing about and can do less than nothing about, I don't have the energy for so... why bother?

A new couplet, I guess... "Doesn't matter" and "Why bother?"

Today's not the day, oh definitely not, but I'm going with my friend to a different 99 Ranch, which has an even bigger produce section, and I'll pick up some unfamiliar (to him, at least) treats.

A very simple answer to the earlier question... "Why bother?" Because it tastes good!