Writing this paragraph after the rest of the post, I will add the disclaimer: this is probably depressing, and rather poorly written, too. Why you would want to read something of that sort, I cannot imagine. But if you do, here you go:
This will probably be nekkid. I say that mostly because I have no idea what I'm going to say, just that so many thoughts are swirling that I must get them out to quiet things down in here. I've never blogged for that reason before. I think that's true; never. Mostly I've had a story to tell, or a party to give or something that I wanted to share. I don't even know that this is something to share; I like to share good stuff, not swirling crap. But if you're reading this, then apparently I've decided this is something to share, and won't you join me in some swirling crap? (And if you decline, I'll take no offense. I'd probably do the same if I weren't me right now.)
I've had whatever this is for almost 10 months now, in some form. When it began, I asked people to pray for me. Some still do. Some people (I'm mostly talking about IRL people now) called and visited and sent cards. Until they stopped. Some people (I'm talking imaginary friends now) stopped visiting, emailing, and the like when I refused to stop being sick. And then some people from both worlds still wrote, called, "visited," and it was I who stopped. Answering the phone, writing back, returning the visits. We're all tired of it.
IRL, some of the people I know very well who are the very, very best at going to the hospital with you, at praying for you, at sending you a card . . . they've disappeared. And I want to say right here and now, I understand. I knew you would do that. It's who you are. It's not good or bad, it just is. Your gift is being there to cheer on the sprinter -- the one who's crossing the finish line victoriously, whether victory means beating the cancer, surviving the operation, or "victory in Jesus!" -- being born into the next life. You're good at being there for the life crap that has a beginning and an end, and they're fairly clearly marked. You suck at the chronic. You always have. You suck at things like depression, at standing by people who continue to make bad life choices, and people who somehow manage to get unidentifiable illnesses, or maybe even worse, illnesses that they might be able to identify if they'd just take the damned test, but they won't, because they don't want to know. Even if knowing would make it easier for you. This is not your call.
I do not hold it against you that you can't be around for this. Hell, I'd stay away from it, too, if given the choice! But don't hold it against me that I'm not being sick in a way that works for you. I understand all, or at least many, of the reasons why you can't be around. Something like this challenges some people's faith. And when you're in the faith business, that can be a very threatening thing. And for many people, something like this threatens the sense of control, the sense of fairness, the illusion that most of us cling so desperately to, that if we do this and that, things will be OK. Or if something does go wrong, and we do the right thing, it will be made right. And "those" things happen to other people. And if we never have to get up close and personal with "those" things, we can carry on with that illusion. The older I get, the more I see that very few people are able to live out that illusion until they get very old and die peacefully in their sleep. But some do. Maybe. Maybe you'll be one of them. (I'm not talking to one individual.)
I don't want this. But truth be told, I can do it. I am actually rather well qualified for it. Because I learned, very, very early that very bad things can happen, over which we have no control. The particulars of this are different, but the premise is very familiar to me. Been there, done that, lived to tell the tale. (Or not tell, as I choose.) And in a way, I'm thankful for that preparation. It's still a little bit curious to me that I don't meet criteria for a major depressive episode, or one of the flavors of anxiety disorder. But, surprisingly (to me), I really don't. If there were a disorder called "frustrated beyond measure" or "intermittently terrified," I'd meet the criteria for that. But most of the time, it's more, "sonofabitch, now look what's happening. " Or, and I just thought of this: UHOHNOWLOOK! heeee Who knew my URL would be prophetic? Speaking of such, did you notice my tagline is gone? It said something about my epitaph. It was funny when it was far away. Much less so when it was/is maybe in view. And of course I don't really want to say at the end of my life, "What was I thinking?"
I don't know how to do this. There's an excellent chance I'm not doing it well. But I'm not doing it thoughtlessly or carelessly. As of right this minute, the status is, the endocrine doc doesn't think I have any sort of vitamin, hormone, etc., problem. My symptoms add up to one thing that hasn't been ruled out. And I still have a doctor saying that even though that's the case, he's not sure; because I'm a "very slow progressor," if I have that one thing. And the status remains that there's that one test that, if positive, would be "confirming," and if negative, would have no value in ruling out that one thing. And that test hurts. I have researched it a bit, enough to learn that it's used as a method of torture in certain parts of the world. And even the torturers don't often administer the procedure to the tongue, which is what I'd have to have. Not that the medical personnel would torture me; I know better. They would be as kind and as quick as they could. But still. Why do I want to be tortured to either learn that I will die a horrible death in rather short order, or learn nothing at all? So again, I'm not doing it right now.
Except. Except that I'm starting to think about doing it. Because I need hope. In spite of evidence and opinion to the contrary, I need to keep hoping that this is something else. And no one, no medical person, will put any effort into continuing to search for something else unless I have had that test. Because when I list my symptoms now, it's pretty obvious that ALF is a strong contender. So any new doc wants to know if I've had that test that can "pretty much" confirm it. And the truth is, "No, because I don't want to know that, because if I don't know it, then I don't have it and I can keep looking for other explanations, and I really, really need someone with a medical education to help me look for other explanations, even though I won't have that test that might save us all a lot of time. I need hope more than I need to save anyone some time." But as long as that's my position, it's hard to find someone to help me keep looking.
And the people who need answers, who want to know about beginnings and ends, they don't get why I don't just go ahead and have the test. It's very clear to me. I don't know why it's so hard for some people to understand. That illness, if I have it, will become so fucking clear, so undeniable at some point. I don't need to take its name before I have to. I don't want to take its name before I have to. I want to never have to. But I don't know. So for right now, while I can still deny, not knowing is what I choose. And I will remind you, there's nothing that can be done for that illness. No. thing. NOTHING. When you can't walk, you get in a wheelchair. When you can't move . . . you just don't move. Someone moves you. When you can't swallow, you get a feeding tube, unless you've signed papers or told someone you don't want one, back when you could still move your arms or speak. When you can't breathe, you go on a ventilator unless -- see preceding sentence. NOTHING. It's not like not having the test is delaying treatment. There. isn't. any.
So for now, I'm living like an addict. One day at a time. Just observing. Today, speaking is really tough. Swallowing is a little bit better than that. Walking and using my arms are OK today. Yesterday was tougher. Tomorrow will be whatever it is. And I'm still hoping that someone will take the time, and the interest, and have the knowledge to tell me that all this is something else.
And when I learn it's something else, there will be a treatment for that something else. Until then, I'll keep trying to do what I can every day. On my birthday, when I got the candle in my muffin, and went to blow it out (oh, stop!), I had a little moment of panic over what to wish for. At first I thought, "To be well!" But another thought immediately began to compete with that: "To live well!" Jif and LG didn't know, but there for brief moments I had that internal tug-of-war between being well and living well. Of course it was just a birthday candle wish, and it may not mean a thing. I'm a prayer, not a wisher. So maybe it was a prayer, too. I want more than I can even express, to BE well, that is, to be healthy. But if I had to choose, like I did when I wished my wish, I would choose "to live well." I have some say over that, every moment, regardless of what my body is doing.
I told a blogfriend earlier this week, I know that it is still a good day when I observe that I am still able to wipe my own butt. I am. I do. Sometimes more slowly than at other times. But that is my new standard for whether things are OK. If I get better from this, I hope and pray, and I KNOW that my life has changed. When your criteria for how the day is going, no, how your LIFE is going, is whether you can still wipe your own butt . . . not much is going to rattle me, if I can get past this.
There's more. But that's enough for now.
file under: &Partial Nudity &WTF Disease