Thursday, August 8, 2013

One does miss it

Nicolas de Mimsy-Porpington ("Nearly-headless Nick") in the first Harry Potter book speaks of not having eaten anything for four hundred years; as he puts it, he doesn't need to, of course, but "One does miss it."

"One does miss it" is something one comes up against, even when one is still alive.

I've been doing some Internet research on the PPMS "thing," recently... I've been sent some serious-grownup-authored scientific papers, and reading what the national MS Society's website has to offer. "Learning about it" is, as always, ongoing, but what I think I've collected so far has included:

  • I'm an outlier. Like that's news... but PPMS sufferers make up something like only 10% of the population. As a result, and the reasons for this being a "result" are kinda thick (remembering the early text-only computer game Colossal Cave, we seem to be "in a maze of twisty little passages, all alike"), there's not much research specific to PPMS, and even less of "not much" currently ongoing research. 
  • The national MS Society's take on "how to handle PPMS" seems to break down to "Don't crawl into a hole and pull it in after yourself." Which, I suppose, is as true for non-MS-accessorized life as for those of us with specific MS-provided "issues"... but it's not what I was hoping to hear. 

It's a clear answer. Which is good. But not a reassuring one.

Which, I suppose, in itself is also an answer, in its own way. Those comfortable delusions... They obscure the truth, they obscure the truth of one's experience of the truth (especially the direct, intimate connection to that truth, and to one's true relationship to that truth). They are very, very comfortable.

But delusions? Truth-obscuring, truth-seemingly-erasing delusions? With or without MS, one does not need them.

But the comfort, the glorious comfort...

One does miss it.

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