Had a good physical-therapy session yesterday. I'm getting along much better with my therapist, who is VERY knowledgeable and very kind (and I think she may even have The Disease, to complement her DPT, Doctor of Physical Therapy). She does seem to have a bit of a "script" for each activity, a "here's how I explain things," which I'm sorry to report, as a technical writer and teacher for thirty-plus years, doesn't always actually "explain" things. But I've figured out how to non-confrontationally ask for, and more often than not "supply," the true "explanation," and knowing what she "actually wants to happen" makes it very easy to make what she wants "actually to happen."
Given that she's notorious (from my point of view) for giving inexact instructions, she's very quick to jump on me for (in her point of view) overstating my disability. For example, I might say "I can't stand up" but she will immediately say "But, you can." OK, so then I go to "Yes, I can get to my feet. And I can stay on them. But not for long." She then says, "How long? Two minutes? Four? Ten?" And then we're in the Battle of Speculation, I tell her I don't know, she says well it's gotta be one of those, what is it, I tell her it depends, it changes, it's never the same, she presses me for some sort of elapsed time. I pull something out of my butt, she's got an answer, she's happy.
But I think this is a good call for all of us who navigate the Neurological Highway (using whatever means are available to us) to clarify the way we describe our condition(s). For me, rather than say "I can't stand," which is an overstatement and thus incorrect (and very self-limiting), it's more accurate to say "I can't stand long enough to do X, Y, Z in location A." For example, rather than say "I can't stand up" or even "I can't stand up for long," it's more accurate to say that I can't stand at the cutting board long enough to make dish X, because to do that I need to prep A, B, C, and D in the following way, and then cook it using methods D, E, F. Now we have something to talk about, to find alternatives. Does A/B/C/D need to be prepped standing at the cutting board? Usually, because of the tools I use and the layout of the kitchen, yes. Are there alternatives? Let's talk... The entire exchange thereby becomes a search for new alternatives, not simply shutting off the future by claiming the disability, by saying "I can't."
So there's an experiment for all of us (M.S.er or not) to try... Instead of "I can't," take the next step: "I can't in this specific way." You'll immediately create an opportunity, because that turn of phrase claims the opportunity to discover that there is another way.
If the definition of insanity is to do something the same way and expect a different result, doesn't that imply that the definition of sanity is to do something differently and expect a different result?
It's worked for other people, in vastly different circumstances. Why not give it a try?