Earlier this week, I was trying to show a student how to read a drum-set score and how that translated into left-foot-high-hat and right-foot-bass-drum. And I couldn't even stomp my left foot in place. I certainly couldn't do the same controlled "waving" motion, slapping the ball of the foot down onto the floor but not using the larger leg muscles. I had to use my thigh to raise my foot off the floor, and when my foot went down, it went down nowhere near where I wanted it to go down. Or even expected it to go down.
I tried doing tote renshu, bare-handed (no bow or arrow) kyudo practice yesterday. I was standing with the backs of my legs against the bed, so I wouldn't fall over. I nearly fell over anyway. So I sat on the bed and did it seated, so I wouldn't fall over. I nearly fell over anyway.
I tried playing the organ pedalboard on Thursday. I could barely move my feet from side to side on it (almost not at all, without grabbing my leg and dragging it sideways), but I couldn't control my legs even close to accurately. Especially bad was my left foot, which used to be the better of the two; even trying to stomp with my whole leg, I couldn't make the pedals play with any accuracy. Or even at all, sometimes.
I can barely open the kitchen trash can with its foot pedal. My foot slides off every other time I try to use it. Or more frequently than "every other time."
And, I think... I'm finally starting to get angry about this stuff.
Which, honestly, maybe a step (as it were) in the right direction, if I've been so insistently denying my feelings about ... let's call it what it is, at least what it is right now: my disability.
There. I said it. Disability.
Spring has an energy of "new beginnings." I feel it in the air; I feel it in my soul. And yet, there's so much that I just can't do.
And I'm not there yet... but I think I'm starting to get angry at it.
"Never give up hope," my doctor told me. I'm holding hope at a distance, too; I haven't given it up, but I'm sure not embracing it.
There's no "doing" to be done. There's listening, and being a full participant in the experience. (Which is one of the big lessons of kyudo... something else that I'm having a horrible time doing, thanks to the M.S.) But there's nothing to be done about it. Absolutely nothing.
And that's hard. That's goddamned hard.
At the school this weekend, some of the kids are putting on a "clown show." They're learning the art of clowning. Looking at the pictures of the cast in their noses and makeup, it's going to be a wonderful show. I'm hoping to go see it Sunday.
To show my support for "the team," I wore a clown nose while I was jaunting around in my motorized wheelchair. The kids loved it--the ones in the show really loved it.
At some point, I thought, "A clown. In a wheelchair. That's got to be funny."
And it was funny. It was goddamned funny.
What a journey, this M.S. highway. Alternating between horrible and hysterical.
Now, that's most definitely goddamned funny.