Throwing shoes

The neurological journey of one of my former students, as told by his parents, appears in this blog. The Neurological Road is very rough, for them; Grayson was a brilliant young man, extremely imaginative, enjoying life in the world of "theater tech" (a world in which he and I spent countless hours together in high school, and at which he was constantly getting better). He had a second heart attack--at 25!--caused by a not-entirely-properly-constructed circulatory system, not by dissipation; he lived a very clean life. He was without oxygen for too long before he was discovered and resuscitated, and his brain was injured. He's still the lovely person he always was, but... the best description is "the phone lines are down," he's nowhere near as talkative as he used to be (if at all, since "talking" doesn't come easily at all), his fine motor control is pretty much shot, and also he seems to experience a lot of what we MSers frequently go through: fatigue, and the more-than-occasional "world is getting too complex to deal with, I need to go somewhere quiet" syndrome.

His parents certainly live in a world very familiar to me, and probably to many of my MSer friends... Do these sound familiar?

It wasn't supposed to be like this.

I miss the old [fill in the blank].

What do I do now?

I am reminded of the byline of a lovely anime series, "Kino's Journey":

The world is not beautiful. And therefore, the world is beautiful.

The Neurological Road brings us into direct and inescapable contact--conflict? struggle?-- not with "a disease," but with ourselves. Everything that's happening to me right now is something that would happen eventually: I can't do X anymore, that piece (or those pieces) of the biological equipment no longer work like it (they) used to... but that's what happens to "those people." Usually "those old people." Not to me. It's not time for it to happen to me. It's supposed to happen later. (It's supposed to happen? Just not "now?" How's that "supposed" to bring me any comfort?)

Well, let me tell you, it sucks just as much now as it would then. And it sucks. It *&^#$ing sucks.

And yet, the world is beautiful.

So many Zen stories end with "and he was enlightened." I hope my MS story ends the same way. But then again, how many of those Zen stories had the enlightenment brought on by the master slapping the student, or throwing a shoe at him?

Maybe when I get the message, the universe will stop throwing shoes at me.