Monday, June 10, 2013

Light; Bach; Pepys

When things get really dark, "light" is something you notice right away. Even a little light, you see right away.

It has been many days since I had "it" together enough to sit at my computer for longer than 10 minutes, to be followed immediately by "I have to lie down now NOW NOW!"

But so far this morning, I'm able to spend some time sharing with you folks, and to get some gifts ordered from Amazon. Who knows, maybe I'll even make some tea. Might even take a couple of minutes to sit outside in the back yard to breathe, and listen. Before making the Great Journey to a day of medical appointments.

Light is nice. Even on a "June Gloom" morning, quite typical for Los Angeles this time of year. The local-TV meteorologists tend to say, in one breath, "late-night-and-early-morning-low-clouds," but the rest of us, we call it June Gloom. But that's OK... light through the clouds is still light.

Symptomatically, it has been a very dark time. Having enough energy to read Facebook (not what you'd call "heavy reading") is sometimes something I haven't had; lie in the bed with my eyes closed and just listen to something, maybe a cartoon, maybe some music. Although some of what I've always thought of as "my favorite music" has made me sad, taking me back to bygone times that Are No More. I don't necessarily mind being brought memories of The Goode Olde Days, but I don't particularly like listening to Bach organ music and going into "And THIS, you can't have, any more." Not that I was ever particularly able to play In Dir Ist Freude as fast and as cleanly as I wanted to, but I had a lot of fun working on it. And today, I can't. Not because I'm out of practice, but because I can't control my legs... I can barely control them enough to stand up without having a hand on something to assist/protect me.

But symptomatically, things have been going wrong. And then they go not all the way back to "right," but at least "not as wrong." You really don't want all of the details. I know I don't. Although, they have provided some interesting Zen-esque "acceptance" exercises; often, my reactions have been not rage, not fury, not sadness, just "Oh. Well."

They've been very interesting days, this last week. Moving from some-body-part goes "wack," and a feeling of complete soul-shredding, to something going "wack" and a reaction of "Oh. Well."

Is that what they mean by "relapsing/remitting"?

Plunging into darkness, then returning to the light, even "June Gloom" light, such as it is?

But before I contemplate that, after talking about having energy this morning... it's gone. I have to drive all the way to multiple doctors, and I'm already tired. Although Samuel Pepys, I'm sure, didn't say it for the reasons I do... but, in order to have enough energy to do all that driving and all that doctor's-office-ing...

As Pepys said it best, "And so to bed."

For a little while. To facilitate "And so to Santa Monica." Which doesn't have nearly as much poetry, but it does have its advantages. (That being where today's first doctor visit occurs.)

Well, we take what we can get. Even a little light, in the darkness, is very, very nice.


Muffie said...

How do you stay so calm and positive? My reactions WOULD have been the rage, fury, and sadness about which you speak. You provide me with a vision of why I want to be able to just say "Oh. Well." I'm really not there. I just can't "go gently into that good night..." I must "rage against the dying of the light." Hope your doctor visits went well.

Robert Parker said...

Muff: I definitely hear you on that one. My MD says that all his MS patients respond completely differently; one with fear ("Oh no, that spasticity will mean the end of my XYZ"), one with fierce determination ("this is SO not gonna win!"), and me... I think it's stupid. Sometimes, I laugh.

But yeah, sometimes, a little rage-fueled determination might not be without its uses... Thinking that something's stupid, which it might very well be, can slide into Denial. Which is NOT helpful. At all.