It dawned on me (as it were) last night, in the post-eclipse moonlight. Has nothing to do with said moonlight, which was significantly brighter without the Earth's shadow in the way, but that's another story.
But what dawned on me was this...
The journey with MS is all about control.
Not the "control" that's ripping the political system in shreds... but rather, the most intimate of control, the control over our own bodies.
We MSers each have our own list of personal, intimate "non-control" issues. Walking, or not. Transferring from anything to anything else. Or not. Using our hands, or not. Getting up a flight of stairs (even calling a "flight" one or two steps), or not. The panoply of elimination, or not, issues. Pain, or not. Spasticity, or not. Or all of them. Or some of them. Or combinations of these issues in ways that are different... always different.
Even non-MSers are rife with biological control issues. A huge amount of our locomotion systems (neurology included) are there simply to battle gravity. Which, oh Lord, can we so not control. Pregnancy, we think we can control, but really, how well do we humans do that? We want it to happen. Or don't. If it happens and we want it, we want it to last until baby is ready. Sometimes it doesn't. Baby emerges when it wants to, because it sure doesn't happen on our terms; yeah, there are pharmacological things that tend to work... most of the time. Except when they don't. Athletes, musicians, there are all sorts of us with "personal, intimate, control" issues. But those somehow are perfectly natural, perfectly normal, and pretty much everybody can help (alas, or not) us deal with those.
We MSers, and certainly me the MSer, are bombarded with "Don't say can't." I can't stand up, I might say. I'm told, don't say can't. I can't get up, I can't get down, I can't transfer from X to Y, there are a lot of moment-to-moment "can'ts" that change from moment to moment. We get bombarded with "don't say can't" if any of those problems arise (or collapse, depending on the moment).
At least, the more intimate our "control issues" are, we get a little more space. I can't pee without a catheter, I could very easily say. Thank God, nobody responds "Don't say can't" when you talk about your bladder issues. They don't say that yet, at least.
But all of our MS issues, they're all due to bad wiring. Bad wiring to the bladder, bad wiring to the legs. Even bad wiring within the brain... It's all bad wiring.
And yeah, go tell my nerves not to say "can't" when they want to conduct electrical messages and aren't able to, not because of my attitude but because of biochemistry which is completely out of my or anyone's control, and see how far that gets you.
About the only thing we can control is our thought, and our self-expression. Frankly, though, I don't know if my caregivers will (as it were) care if I say "I can't get up... at this particular moment" rather than just "I can't get up."
The guy I know who has been in the Cath Club for eight years is not going to be very quick to change the way he describes his bladderly adventures. Although, if pressed, he'd agree that it might very well change. My doctor had a patient who had been MS'ed into a wheelchair for twenty-five years... then one day, he got better, got up, and walked out of the hospital. These things do happen, after all.
But not, as far as I can tell, because they were described differently by the person who was affected, disabled, by them.
But, then, what's the bottom line, for us MSers (or just plain humans, for that matter) who have these neurological control issues?
As a friend of mine said he learned from his time in a Zen center... pay attention. Just witness it. Yeah, it failed. Just witness it. Yeah, it ripped your soul in half. Just witness it.
And for something so easy... that's hard enough.
For now. But that can change...
Even when you say "I can't," witness the "can't-ness" and your reaction to experiencing the "can't-ness" of neurological failures.
As Ram Dass is famous for saying, just be here now.
Which, in this crazy and amazing world, in this crazy and amazing life, in these crazy and amazing bodies, is a crazy and amazing place to be.