Zen and the M.S. Highway

An interesting discussion, at my weekly acupuncture treatment/dharma talk.

And not just a joke about one of the points that was treated today: Melody Bone.

"I need to write more music..." I offered after I asked what point it was that he had just treated.

"Yes you do. Play the melody bone," my doctor jokes.

But as to the dharma talk: We had some good discussion about how to be truthful about "what I can't do." A lot of this pertains to what-can't-I-do-any more, especially in the context of my teaching job. I can't go up ladders to hang/adjust lights. (Heck, I don't even like going up a two-step step ladder to reach something from a high shelf or change a light bulb at home... much less going up twenty-five feet, over the floor of the auditorium). But those are easy to be honest about; takes about one, maybe two seconds to find out that activity X, you shouldn't oughta be doing. (And is usually accompanied by muttering to yourself "You idiot!")

Now, it's the quiet "I can't anymore's" that are hardest to deal with. The ones where you mutter to yourself, "C'mon, you can try harder. You can make it. How bad is it? You can keep going!" ... but you shouldn't. My doctor told me about an M.S. patient of his who had a malfunctioning bladder (another one in the club) who nearly died because his bladder had stopped emptying, was backing up into his kidneys, but he didn't (at the time) know how bad off he was, and thought he could just soldier on. He's quite alive and much healthier now, but now pays a lot more attention to the messages his body sends him.

So... to be honest... how do my physical limitations express themselves?

• I can still stand up. Slowly. Usually without falling over, but sometimes, one leg crumples or an ankle turns. But "just stand up?" Nope.
• I can still walk, short distances, and slowly. In socks. Not so well, in shoes. Sometimes, one leg crumples or an ankle turns. It's a better idea to have something handy to steady myself against. The canes I used to use all the time... not steadying enough; not as good as a wall or a chair. Using the walker is a much safer idea than walking "solo," but the walker doesn't facilitate moving quickly, or prevent the leg-crumpling or ankle-turning. Or make walking in shoes easier; even with the walker, I prefer socks.
• I need to sit in good chairs. Best of all: chairs that allow me to put my legs up. But even with good chairs, I'm only good for so long in them before I have to get up; to "walk" a little, on a good day, to lie down on a bad one.
• I'm good for maybe two hours—at most—of applying myself to a single task, in a single "chunk" of time. Not counting the bathroom breaks, which come on their own schedule, not the clock's. On a good day, I can take a break for a half hour or so and then go back to it; on a bad one, I have to go to bed. The school day provides me with chances to at least get away from the world and recover, but by the end of the day, I'm definitely done. "Done" in all caps. It's a huge triumph when I have the "juice" to go shopping after work, and an unbelievably huge triumph to go shopping and then make dinner.

I'm best at "tell me what you want me to do, leave me alone and let me do it in small chunks." The usual "C'mon, team! Let's go! All hands on deck!" that is part-and-parcel of the workaday world... that's beyond me. Especially when "All hands on deck" means "We're going to be understaffed and under-prepared, so everybody expect to work like dogs!" that I used to take in stride... well, I don't stride any more. Wish I could. But can't.

I'm still good for a lot. I can still do things that very few people can do as well as I can, and I can often make real magic happen. But not on the "usual" terms of the workaday world.

So... This is my task: To do the good that I can do. To be truthful about what I can, and can't, do. To help whom I can help—including myself, and to do no harm—especially to myself.

Not that much different from the non-M.S. life, is it? But that's one of the gifts of M.S. ... The call to be truthful, about yourself, to yourself. Because... we M.S.ers, we don't have any options. We have to be honest with ourselves. And that's the first gift of M.S. : feeling the need to remove delusions about your own mortality that are oh-so-pleasant to hide behind.

You see why I tend to wax spiritual... Take a look at my kyudo teacher's Zen blog, about "Living Life." I don't see any difference between what he says about Zen People Walking and my experience of walking the M.S. Highway.

So that is my task. Our task: To walk through life; in the reality that is to be lived in.

The air is beautiful, as you're walking. Breathe it.