Lines in the sand

Survived Hell Week for our production of "The King and I." And survived the weekend's shows. Some of the best stuff I've ever seen on that stage, and I've been somehow involved with nearly every musical production that has been held on that stage since it was built.

And finally, I have a picture of me sitting at something--but not sitting in defeat, sitting down to work. Unlike my favorite instrument (the organ), with these instruments, you don't need your legs or feet to play, and with this score, you don't even have to stand up.

One of the things I like to do after any show is over is make a "next year" list, of things that we definitely want to do again, and that we definitely want to do differently (if not never again). Many of my "next year" items are non-MS-specific--scheduling improvements, checklists that were not followed need to be, minor changes to the lighting package. But there's at least one very-MS-related item: If I'm going to play in the pit again, I need to be at the house-right side of the pit. The conductor insisted that my instruments be located on the house-left side of the pit (for whatever reason), which put me at the opposite side of the theater from where my wheelchair could be parked--you can't get into the theater via wheelchair from the house-left side. I told him that I wanted to be on the right side, he (apparently) didn't care. Well, being on the wrong side of the pit cost me at least five minutes every time I needed to cross the theater through the raked house, walking-crawling through the chair rows (no room to walk through the pit itself). I slipped several times, spectacularly once, and only through blind luck wound up uninjured. Will I play in the pit next year? Very simply: I sit on the side of the pit that I choose, or I don't play. Period. No negotiation.

This is the sort of thing I've found most annoying about the MS experience... I say that I need something, the people I tell that to don't care that I say that I need it, because they want things their way, and so it sucks to be you, don't it? It doesn't help that I honestly don't know where to draw the "can't" line... because often I "can" do whatever it is, after a fashion. I may not enjoy it, it may be difficult, it may actually turn out to be dangerous or a horribly bad idea, but in a very mechanical sense, I "can."

"Can" and "should" are very, very different.

So this is something that I'm still struggling with. Not people who don't want to accommodate me, but my own assessment of the difference between "can" and "should." It has been a struggle to know whether I need to push myself for the sake of pushing myself, and when to "go with the flow" in a less confrontational way. A couple of years ago (while I was still walking unassisted), one of my doctors asked me whether I wanted a cane; I said that I didn't want one because that would be "giving up." He said, "It's not about giving up. It's about not falling over."

Maybe it would be better if I changed my vocabulary for myself, to assess--privately--my options as "Yes I can, but I shouldn't;" but when dealing with other people who want me to do things that I know are bad ideas, to simply say "Sorry. I can't do that." And not give in. No matter how badly they want what they want. Or how pissy they get when they don't get their way. After all, it hurts less for them to be pissy than for me to hit the ground.

An interesting line I've drawn for myself in the sand. I have no problem saying to people that I can't do certain things (like sit in a room for hours) when it's because I have a trick bladder, and there's only so much control I can exert; but somehow, I seem to fear confrontation over saying I have trick legs, and there's only so much control I can exert.

Is it just that people don't mind someone falling over, but they do mind someone leaving a puddle on the floor, and that's why it's no problem to accommodate the latter but not the former? (Sadly.. probably.)

Is it just that I don't like interpersonal conflict? (Maybe. I don't like it at all...)

Is it just another form of denial--that when I draw the line in the sand and say "Sorry, I can't," I need to face the line as much as they do, and I don't want to? (Well... er... ah... if I don't want to deal with asking the question, I'm certainly going to have a hard time facing the answer.)

An interesting road, the Neurological Highway. Learning to walk is easy. Learning how to live... that's the interesting part. The road gives you no choice as to how, or when, you need to face either question.

"Always tell the truth," my timpani teacher used to say. Amazing, how hard we make that, especially when you're asked to tell the truth to yourself.