Strange stuff, this weekend. I played a church service, had an unbelievably hard time of it. I've been doing these things for something like 36 years. Challenging? Sometimes, yes. But difficult? Never. But last Sunday was.
I nearly slid off the organ bench while playing one of the hymns, pedaling the last note of a verse. Low E-flat, very easy to reach. Or so I thought.... That has never happened before. Ever. And yes, this organ console is very oddly proportioned, but still... Trying to play the organ has never caused me to slide off the bench.
The "Am I stoned? Am I not?" continues. Recently, I've been having near panic attacks in grocery stores. I'm not afraid of anything specific, there's just... some sort of terror welling up, as I walk around the aisles. I keep reminding myself, "You've done much more difficult, much weirder things than this. This is not a problem." And it's not a problem, really. But still, there's the terror. Sort of.
"Sort of" is getting very old.
There was a very large and significant incident the other day, I had spent too long in a hot room in a not even vaguely comfortable chair, and the MS went nuts and I had a huge upswing in the lower-body numbness, and driving to the bank got very weird, and I was afraid for a few minutes that I was going to have to call someone to pick me up and take me home. Fortunately, sitting in the air-conditioned truck, I think things cooled down enough, I got things under control, and I made it home without incident. But that was a well-past "sort of" panic.
But the problems that I have dealing with playing the organ, playing the service, problems simply dealing with the complexity of the world everything was much harder, and the meeting of everything was much more fruitless, than it as ever been before. I was quite concerned that maybe, "This was it." The end of a career, of a way of life. And as that thought hit me, I thought, I'm not at all willing to go there, yet...
Also quite frequently nowadays, I get up, and immediately get hit with a wave of "Bad idea." Not really vertigo, not dizziness, not light-headedness... damn, it's hard to describe. And I don't know if it really is a bad idea to be walking around, or it isn't and it just feels like it's a bad idea. I sit down, and shortly, I'm fine. But when I get up, it starts again.
"Sort of" clear, what's going on...
Which brings me to the dark stuff. (No, grim as the above was, that wasn't the dark stuff.)
A few nights ago, a thought hit me...
My life is over.
It's not about "adapting to MS." The life I had, the one I was used to, the one where I thought I was in control and "had it down," where I was comfortable and happy with what I could do and what I had always done, and would just keep puttering along with business as usual... is over.
This quote from Meister Eckhart was brought to me, courtesy of a friend's Facebook page; not that night, but very soon thereafter: "To be what you must, you must give up what you are."
And so it is: The life that was, is over. I have another life, now. Perhaps it is the life that was always meant to be, and I just couldn't see it, until the MS brought me to face it.
I don't know how to live it.
I don't know how to even begin to live it.
So, this is the new challenge: How to live this new life. Simple, no?
It is as I've often said: MS is no more than the human condition... except writ large, so large that we can no longer pretend to live in ignorance.
We'll see what happens next...