An interesting question to ask us M.S.ers... In some senses, "are we going to get better" is completely unanswerable; but "are we going to get bitter?" That, we face every day. Every hour.
So I've been looking back at my anger at various things... M.S., Other People, The System (various Systems)... and I'm starting to think that, at the root of my anger, it's not about fairness, or for justice, but...
On a personal level, it's neurological. I want to move my legs in certain ways. My nervous system won't let me. I don't have control... and I never did. My nervous system does. What passes for "control," it has.
It was a pleasant illusion, the "having of control." But it was only an illusion. Control? I never really had it.
I want certain things to happen in the world. Not "world peace" or "cure for cancer" — or, "cure for M.S.," why not—but things that directly affect me. Precisely "where" doesn't matter for this discussion, but basically, it's... People who, in one of my circles, Have the Power and Want What They Want. To me, it makes no sense why they want what they want; sometimes because of my own hard-won experience in The Real World, sometimes because of that same Real-World experience and the application of simple deductive logic. But They want what They want, whatever it is.
And I have no control. No control. And I never did.
It was a pleasant illusion, the "having of control." But it was only an illusion. Control? I. Never. Had it.
Somehow, this is harder to take than being crippled. The tragi-comedic thing about M.S. is that somehow, at some level, it has to "make sense" why it does what it does. Nobody knows what it is, but that's how biochemistry works; there is a reason, there's a biochemical mechanism behind it, and it makes irreproachable logical sense. Even if we don't know what that reason is, there is a reason. And if we could follow the pathway, every single step on that pathway would make perfect, mechanical/logical, sense. That's the thing about chemistry and physics—it has to make sense. It has to play by the unbreakable Rules Of The Universe; the logic behind Why Things Work. There simply is no other option. Never has been; never will be.
Human reasons, though, are different. The Reason makes perfect sense to the Reason-bearer, but it may be ... for lack of a better word, wrong. The Reason-bearer may see a mechanism that isn't actually there—a truth that others outside The Process, observing from a variety of different angles with no buy-in to the outcome of the process, can see, but the Reason-bearer can't. Or won't. They may see benefits but may not see the costs, and may think that part of the benefit of their desires is that they are cost-free. Worse, the Reason-bearer may not care about the costs; but even if that "not caring" could be morally or ethically justified, that doesn't make the costs vanish. This isn't about "differences of opinion" or "artistic differences" or simple disagreement, it's about logic. Assumptions are wrong, data is wrong; therefore conclusion is wrong. That's how logic works. Garbage in, garbage out, as the old computer saying expressed it.
Or so you'd think. Apparently not. I don't mind "That Person knows more than I do and based on that deeper knowledge, their choices make sense." I do mind "That Person knows less than I do and makes flawed choices based upon bad data, buttressed by imagined competence."
So this is my current struggle. Control my bladder better? Well, I'd love that, but there's nothing I can do about it. Walk better? Control my feet so I could play the organ again? I'd really love that, but I ain't doing anything about that, either. Get delusional people to see things non-delusionally? Not a frakking chance.
So what can I control?
I can forgive people for not rising to my expectations. I can stop assuming that people are "wrong" when I don't know what it is that they actually do know. I can forgive them for being wrong when I actually do know more than they do. And I can stop assuming that People Have Agendas that are inimical to my interests, when I have no frakking idea what they, in fact and in truth, actually do want.
And as Joseph Campbell said, I can follow my bliss. Because M.S. or not, there are things that I can do for the world that only I can do, and my task is to do them. The world needs the things that I can do; whether the people in my environment want them is not mine to control, and certainly not to condemn.
Walking without a walker is easier than overcoming your own small-mindedness... your own small-"soul-ed"-ness. Was I going to have to overcome this anyway? Yes, of course, that's one of my major tasks on this particular revolution of the Great Wheel of Karma. But it was having M.S. that set things up so that I went into direct confrontation with my own consciousness of Self-Limitation, and called me, very insistently, to transcend and bid farewell to it.
One hell of a "disease," isn't it?