Tuesday, December 6, 2011

Tomorrow, I will be taking the first step of a Big Change. A Very big, Big Change. And, only the first step. But it's a Big Change. One that has been overdue for far too long.

More details tomorrow. I'm sharing what I am, right now, to bolster my courage. Because I have to do it. I've known that I was going to have to do it for a long time, and I haven't been willing to cop to the truth that my heart, and the entire Universe for that matter, has been trying to tell me.

My kyudo teacher once told the class, "Nobody will give you anything if your hands are clenched. Before you can receive, you have to open your hands."

I need to open my hands.

One of the gifts of M.S. is sensitivity—given that I was already too sensitive for my own good before The Disease hit, you can believe I'm really sensitive now. Which means that when I take the leap... the fear before the moment of the leap itself is going to hurt even more.

But, as Eustace said in The Voyage of the Dawn Treader, of the way Aslan pulled off his dragon's skin, "It hurts like billy-oh when it's coming off, but it feels so good once it's gone."

The change is upon you—that's the first thing we have to deal with, as M.S.ers. The change has already happened.

So, what do I do now?

Oh, I dunno... how about...

Live.

Easy to say, ain't it. OK, then... with you, my friends, as witnesses:

It's time to do it.

So... here we go, then.

Sunday, December 4, 2011

Warmth, in the middle of devastating winter

I commemorated the Storm That Trashed Pasadena another way, this morning: I composed a new anthem for Oneonta Congregational Church, an arrangement of Gustav Holst's carol, In the Bleak Midwinter.

You can guess from the title why I was immediately drawn to this text, given that the church (as so many still are) is without power, which means no organ, no light, and no heat. And yet, even if we can't warm the body, we can warm hearts, and warm the hearts of one another.

Some of my dear readers may not follow the Christian path; but this music is for you too. Not because I want to convert you, but no matter your spirit path, the last phrase speaks of what you can give, no matter what other roads your life takes you down.

And it's something that all of us M.S.ers can give, because for all the malfunctions that beset us, this is the one thing that no disease can ever touch; because it is beyond the limitations of the world.

Friday, December 2, 2011

Perspective

For days... weeks... I have been going back and forth on "where I'm supposed to go," career/employment wise. Many doors have been closed by the M.S.-related physical changes; some have been closed simply by age (even though there's a "come on, you're only 51, what's this 'age' crap?" factor, but it's there anyway); some have been closed by choice, brought on by experience and, as I occasionally like to think of it, wisdom provided by suffering and not wanting to suffer again. Some roads I've traveled, and have been glad to have traveled them, and am even more enthusiastic about not going down them again. You know what I'm talking about... we all have invisible "combat medals" that we won by surviving the battles that made us who we are today, and that we So. Don't. Need. to win more of.

Earlier this week, Pasadena was devastated by higher-than-gale-force winds. People went without power (myself included), streets were littered with broken branches, sometimes entire trees were felled by the wind and left strewn about the roads. Or, sadly, crushed entire houses. One thing was very, very clear; the planet is bigger than you are. Compared to the planet, and the forces in play on the planetary level, you ain't nothing. Planet doesn't even know you're there. And when you see just how small you really are, it's hard to get your own knickers in a twist about "You don't understand, this is really important" when whatever it is has nothing to do with life, or health, or home, or simple survival.

Really... I just saw a tree that's older than both of us uprooted and hurled onto the ground, dozens of yards from where it has been growing for decades, maybe centuries. There are people not all that far from us who no longer have homes or food. And you're telling me that making sure that this form is filled out properly, or justifying this argument you're making about some mental model of yours being superior to someone else's, is "important?" Really? Really?

And the evening after Pasadena was hammered by the wind, I performed at a concert celebrating the lives of AIDS/HIV victims, in support of the Pasadena Pride Center. They spoke of loss, and courage; and what really connected with me was what they said about the Pride Center. They spoke of young people who wondered whether they were "normal," whether it was "normal" to feel the way they felt—who were unclear about even what it was that they were feeling. And they spoke of how important it was to have a place for people to talk, and to be reassured that they weren't "broken," but that their orientation, their feelings, their questions, didn't have anything to do with their worth as people; whatever state they were in, for them, it's normal. And they're normal. And they're worthwhile, they're beautiful, just because they're people. And what's really important... is to be true to yourself. To be true about yourself, to yourself. Because you are who you are.

Don't we M.S.ers need to be true to ourselves about ourselves? That for us, where we are right here, right now, is now "normal?" That whether all the equipment works the way it used to or not, we're normal, and our malfunctioning equipment has no bearing on our worth as people; and that we have things to offer, we have things that we were born to offer, regardless of the state of our nervous systems. That we're normal, and we're beautiful, just because we're people. I'm beautiful, and worthwhile, because I am me. And the way my nervous system works has nothing to do with that... and it never will.

Lemme tell you... watching the wind rip the city apart, with a power that absolutely dwarfed anything that I've seen, that I am, and that I'll ever be; and then hearing people talk about life and death struggles with diseases, and with the life or death struggle simply to accept oneself, because it's definitely no life if you can't live a life that loves yourself as you are, as you were born to be... well, that puts wrestling with "how am I going to deal with this 'job' thing" in a different light. Do I need to deal with it? And with how M.S. affects my career choices, my employment future? Of course. Not to deal with those questions is the height of foolishness. But... are they that "big"? On the scale of the forces the planet itself wields? Really? Really?

Have my questions been made easier to answer? Also no... but they have been made a lot smaller. And maybe that alone will make them easier to answer... We'll see.