Thursday, June 17, 2010


The Buddha said, "The foot feels the foot when it feels the ground."

The Buddha clearly didn't have MS. My foot barely feels the ground, barely feels itself, and what I feel it feeling, it actually isn't feeling.

Or is it?

Well... no. My foot feels cold, but when I feel it with something other than my foot, it isn't cold.

I'm sure there's some sort of lesson in that, but... I couldn't even begin to tell you what it is. Maybe when I'm enlightened, I'll understand it. But today... no.

I'm getting new sensations, in my feet and legs. They've been building for a few weeks now. Not accurate sensations, mind you. Just "new." They feel swollen, but aren't. Sometimes hot, sometimes cold, but unfortunately, often painful. Imagine overfilled water balloons, except filled with mercury. Vapor. And subject to higher-than-normal gravitational force, so the earth's pull on them is higher than 1g. My right leg has more discomfort and more odd/nonsensical sensations, my left leg has the worse motor control. It didn't used to be that way, I think... It's all a blur, really. It's hard enough to remember accurate information, much less to track how your nervous system is misinforming you.

Are these new sensations and new malfunctions indication that things have gotten worse? Or the "side effects" of a nervous system trying to adapt and rewire itself to become better?

Unknowable. Not simply unknown... unknowable.

Confirmed by my neurologist, by the way. Who said that this even extends to the cellular level. A nerve impulse jumps "sideways" from one cell to the next, in the biological equivalent to what in wiring we'd call "induction." Is that a system failure, or an adaptation trying to find a way to manifest? It could easily be explained as either, but in truth... You don't know. You can't know.

I'm living in a very unknowable state, right now. I feel very strangely odd, in all sorts of new ways (I'll spare you the list). That's true; at least the truth of my sensations, I can be sure of. But... does it matter? Do I feel so odd that I shouldn't be driving/be taken out into the world/go to or do work remotely, at home... or do I feel odd but I can do all those things perfectly well? Do I need to pack everything in and do nothing but rest, or disregard the oddities as being merely static, sensory noise, irritating but unimportant, and do whatever activities I have energy for, even if I don't have energy for much?

I don't know. And I think, I can't know.

Which is really, really inconvenient. Truth be told, I don't think I'm mustering the gumption to be annoyed at it. But it is wearing on me. As I've said before, I don't "want to be disabled," but I'd really love some clarity. I can't, or I can, and I just want to know for sure which is true.

We've all heard "you don't know what tomorrow will bring" too many times for any of us to take it seriously any more. It is true that we don't know for sure whether we'll be alive tomorrow; whether the sun will rise or not, whether some gamma-ray burst from some distant star will (or won't) in a flash eradicate all life on earth, whether there'll be an earthquake... the list of possible life-destroying disasters goes on, as it were, forever. And yet, prudence still counsels us to assume that certain things, like "tomorrow," are probable enough that it's reasonable, if not wise, to behave as though they'll come, and to plan accordingly.

I'm having a very hard time treating anything as probable, even in the short term. Will I have enough energy to go to yoga tonight? Right now... I don't know. I'm starting to get odd vision issues, I know they're not optic neuritis because (thank heavens) none of the symptoms match that, but are they cognitive? Organic? Sensory, but I'm misinterpreting them as vision issues? Sensory in the head but unrelated to vision, but they're mucking with my perception? Just need new glasses? Just need my current glasses adjusted? Is this particular weirdness unrelated to The Disease or caused by it? Don't know. (At least I can control for the mechanical glasses-related issues; thank heavens for small favors.)

Living on the razor's edge of "don't know" is getting very tiring. A friend of mine, twenty-five years ago had a favorite phrase: "A terminal state of inexactitude."

Neither of us knew how prophetic that was.

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