Monday, April 12, 2010


I spent a lot of the last few days sleeping more than usual. Waking up at 4 in the afternoon one of those days, I thought, "I'm losing a lot of life to this MS thing."

Now let's see if that's actually true. If I am really, honestly, losing things because of MS?

My legs aren't working that well any more, especially with regards to precision manipulation of musical instruments. Now, my doctor is adamant when he reminds me that they're malfunctioning now rather than forever, that he's been in the neurology business for more than a quarter century and he's seen MS patients who were wheelchair bound for life simply get up and walk out of the hospital because the MS simply stopped one day; he himself had a horrible exacerbation that caused his hands to shake, so he couldn't treat patients, and that simply stopped one day; and that with all things neurological, you just never know what's "going to happen." Therefore, it's always too early to say "it's over."

But even so, my legs aren't working, and I can't play the organ as well as I used to. I tried to learn the "Jig fugue" years ago (a Virgil Fox favorite) but I never mastered it. I'm not going to be mastering it any time soon, but honestly, I never really could play it; I still can't; so, technically, I didn't "lose" anything.

And really, all the abilities that I do have, and can still use, are only on loan; age and time will inevitably request their return. So, at the end of the day, they really aren't mine to begin with, so technically, I can't "lose" them.

I "lost" a day of work today, I'm going to "lose" a day of work tomorrow, I'll probably "lose" three more days this week, the way things are going right now. I miss my students, and many of them will be especially unhappy because I won't be there to show them the next episodes of the anime series we've been watching all semester, which they dearly love. But I am honoring my body's requests, I am not stressing it (as much as I would if I went to work, at least), I am doing at least something to facilitate its healing. So, truthfully, at the end of the day, what am I "losing"? I change my lesson plans, we watch the cartoon at the end of two weeks rather than at the end of one. Where's the loss?

To be honest with you, this is all intellectualizing. What has taken the biggest hit in the MS experience has been my heart. Not the physical heart, but the metaphysical one, (The Japanese have better terminology for these: they call the first "shinzo," the second "kokoro," also translated as "soul" or "spirit".) So truthfully, I'm not processing things properly with my heart; truthfully, I really don't know how I feel about this. Or much of my MS experience.

But intellectually, it has been a very interesting process. Even if it hasn't been a true "process," in the psychological/spiritual sense of the word.

Great. The central-nervous-system disease is messing with my legs, creating all sorts of odd physical sensations, sapping my spirit, and leaving much of my brain intact.

The gifts of MS are... strange? Interesting? Perverse? Twisted? Profoundly messed up, yet darkly funny? All of those? None of them, something else entirely?

Can there be any other answer to that than... "yes"?

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