Wednesday, May 4, 2011


I've been extremely disconnected from pretty much everything; especially the calendar. I'm staring down several "Do I really have enough time to get x/y/z done?"... I got a lot of a new composition written but I need to put it through the "polishing" phase and I haven't had either the time or the energy to face that... I'm finding both leg strength and control, especially control, to be fading quite rapidly.

Now, the "control" thing is an interesting question: do I not have control, am I losing more control, or can it be regained if only I worked at it? OK, I'll bite. But I need to have the strength to work at it, and when I come home from work I hit my bed and sleep for two or three hours, then I lie in bed awake for three or four hours between midnight and four (or five)... It's hard to squeeze "let's work on 'control'" into a day like that, when so many other things demand the few hours—minutes—of awake and able-to-do-anything that I have.

Like I need more "interesting challenges" on this M.S. road. School will be out in a month (gasp! Lost track of time! So much to do! Crap!!!) and once I manage to make it to the second week of June, once I stop being surrounded by our five hundred adorable disease vectors and attention sappers, I'll have the strength to try to build strength. There's a conundrum for you.

Beethoven once said, "Damn counterpoint!" For me, it's "Damn conundrums!"

In other news, I found a lovely quote on Facebook this morning:

Remember that not getting what you want is sometimes a wonderful stroke of luck. —Tenzin Gyatso, the 14th Dalai Lama

Well, I know that I didn't "want" M.S. If anything, I wanted the opposite: a working nervous system.

I wonder when I'll realize that it has been a "wonderful stroke of luck," this M.S.

The strange thing is, that in some ways, I know how it already has been. And in other ways, I'm still struggling to simply accept being in the state I'm in.

Perhaps leaping that particular hurdle—acceptance—is that very stroke of luck I've been promised. Dealing with denial is a very large Life Hurdle, always has been, and—sorry, I simply can't resist the urge to use this particular expression—with my M.S., denial just "doesn't have any legs."

So... a stroke of luck?

We'll see.


Muffie said...

Interested to understand what kind of control you're seeking. Control of a wonky nervous system? Control of your work? Just curious...

Robert Parker said...

Actually... simple muscle control. For once, I wasn't turning an orotund phrase; I just want my foot to go where I want it to go.