So I'm lying in bed poking at my iPhone, and for whatever reason, I'm googling prednisone and primary-progressive MS. Or "ppms," as their friends call it.
One of the first things I find is from the Ohio State University Department of Neurology. Seems a reasonably trustworthy source... I check their FAQ page, apparently they get asked a lot of questions 'cause there's certainly a lot of answers on their page... and I find this:
There needs to be a clear understanding that there is no large study which has unequivocally established the effectiveness of any therapy for PPMS.No effectiveness of any therapy. Yeah... that's encouraging, isn't it.
Somewhere I think they also said that PPMS is actually SPMS (secondary-progressive), the kind that people with the more common expression of MS (relapsing-remiting) say that everybody eventually gets... Gets better, gets worse, gets better, gets worse, and then one day only gets worse. According to this school of thought, the poor patient actually has full-on MS, but they just don't know it. So here they've been happily relapsing and remitting for God knows how long, but they never noticed or had it diagnosed (or both), but once it gets into the "constantly getting worse" state, eventually they figure out that something major has gone wrong.
Jon Stewart has said this often, and he says it best:
I got nothing.Art imitates life.
OK, for the sake of argument, let's assume that this is correct: As far as the Big Pile O' Studies is concerned, there's nothing to be done for us. So, then, how do I feel about that?
I suppose I could go passive-aggressive pseudo-Zen and just ask "Well, you're gonna die, one of these days. How do you feel about that?" But that's a way of avoiding asking myself that... so, how do I feel?
I want very little.
- I want to enjoy rather than regret eating. Pretty much every time I eat anything, I'm sorry I did, in very short order. Certain times of day, certain medicinal herbs, both help me to actually eat and enjoy, but the "three meals a day" plan ain't really accessible, right now.
- I want to be able to enjoy visiting my magic club (Hollywood's Magic Castle) when friends of mine are performing there. Which I can't, really; it's a 100-year-old building that's about as anti-ADA as anywhere I've ever been and there's nothing to be done about it other than tearing it down and rebuilding it from scratch. Which ain't gonna happen, being that much of its charm is being 100 years old.
- I want to sit at my computer and write music. I have music somewhere inside my head that wants to be written, but the actual doing of it is beyond me, too often.
- I want to be able to write well enough to make notes to myself. I don't need to be a calligrapher (did take courses in that, but it's not my "thing"), I just want to have a thought, and write it down, and not regret the action of writing and feeling like "printing well enough for me to read to myself" is degrading too.
- I want to feel good about driving my truck somewhere, getting out, doing "whatever," loading me and my wheelchair back into the truck, and going home. Driving is reasonably doable, but loading and unloading the wheelchair? Nope. That's what keeps me home, the difficulty of loading and unloading the device that makes it possible for me to move around the world, non-automotively.
- I want to cook again. To be able to stand at the cutting board and cut, to stand at the stove and stir stuff in the wok. And more importantly, to plate the food and serve my wife. I was just wandering around my phone yesterday, I found a lot of photos of stuff I had made for Karen and served her outside in the back yard. I can't do that any of that stuff any more. I don't even like using my big cleaver because it's so sharp and I'm dropping everything nowadays and I really, really don't need to drop something that sharp on, for example, me.
- We just had the back garden completely redone. It's lovely now, perhaps I'll even be able to share some pictures eventually; and in a few years it's going to be unbelievably lovely. Full of yummy edibles, perfect for adding to all sorts of goodies. Depending on the temperature outside and how well my "walking" is going and how well I'm feeling in general, nowadays I'm feeling afraid to go outside, to make the two steps down from the house to the chair that always awaits me. I didn't go outside during any of the "wow, look at the moon!" evenings because I was especially afraid of going out there at night.
I suppose I could drone on for a while, but you get the idea; I really don't want much. I don't want stuff, I don't want trips, I don't want equipment or clothing (in fact, I keep giving away various bits of what I have... at least I can get some enjoyment out of gifting things to people I care about). But right now, my days go very simply... Get up eventually; eat something, usually; regret having done so, too frequently; do some business at the computer; make some tea (at least I still can and still enjoy that); and then feel defeated and go to bed. Maybe sleep. Or just close my eyes and lie down and listen to something, maybe. Lunch, eventually? Maybe, but usually regret eating anything immediately. Go back to bed, probably. When it's late enough, have some herbs that make me a little loopy but otherwise make me feel pretty good, actually enjoy eating something, but at home; no going out, almost never going out, because the effort to go out is unpleasant and I can't really engage with the world and usually feel uncomfortable after eating. Although I do enjoy leftovers the next day... stuff generally gets better overnight, and I can squirt some whatever-we-got-in-the-fridge to add to the sauce. Leftovers in the toaster over, I can still cook. Plating what I've cooked, that's nasty hard, especially from a wheelchair when you're losing the ability to grip and control with your hands (see above under "can't write" and "dropping things").
Well, it took a while to go through the list of what I want, but the question remains: how do I feel?
I don't know. I think I'm giving up, actually. Really, really disengaging.
So, I guess, the bottom line is, what do I want? To care. I'm sure there are all sorts of things I could do, even in the evaporating/withering state I'm in. But to set it all off, I think the first step is to care.
And that's where I'm really deficient. And if there ain't no help for PPMS, there sure as hell ain't no help for "not caring." So, what is completely within my control? To change my consciousness. And how does one do that?
I suppose I should turn to the Book of Changes. It's not about "what change to make," it's about the process of making changes. Small changes create big changes. Yeah, I should read that!
Except reading is unpleasant, too. Eyes going wacky... not optic neuritis, fortunately, optometrist says my optic nerve is wonderfully fine, it's the motor stuff of focusing the optic lenses.
Ah, motor stuff going bad. Where have I dealt with that before? Oh, how should I put this...
Daily. Hourly. Constantly. And, as Dumbledore said of the whining child underneath the chairs at King's Cross Station at the end of the final Harry Potter book, "There is no help possible."
And yet, change is called for. Not help, but change.
Amazing disease, the MS, ain't it?