…actually, there’s a Barenaked Ladies song that refers to divergent journeys, that we may meet again in hell. Naturally, this isn’t what I mean, but it’s one of those things that sticks in your head.
Prior to getting the LCH diagnosis (Jeez Louise, that was just last week?) our lives were in suspended animation. It was impossible to plan five minutes ahead, never mind five days or weeks or months. Of course, the pisser is with the diagnosis, especially right now, at the very beginning, when we know very little about how I’ll respond or what exactly that will entail, is that it is still really impossible to make any detailed plans, even though we really want to.
It’s an odd position. We know what you have, except science as a whole isn’t too sure exactly what the hell it is. We know that is, what it acts like and what it doesn’t and that specific information makes it a real idget to classify. Certain treatments work somewhat consistently in diverse populations, but then there’s that other population that just didn’t get that memo.
It’s not bad news, of course. It’s just that a certain amount of uncertainty is going to be the rule rather than the exception even after things are ironed out more. But it’s really hard now because dammit all, we all want to get to the good part.
The other complicating factor is that this just doesn’t happen a whole hell of a lot. Look, I know I am not alone, and I love you all dearly, but we all do this sort of stuff alone, simply because nobody can stand in someone else’s shoes. Empathize, sure. Relate to, sure. Understand at a deeper than superficial level, of course. But this is a weird place and while LCH in adults is much like that in children, children don’t tend to… um, write about it nor can they explain it. Their parents have a very different take — and god help them, I can’t imagine having to watch a two or three or five year old go through this. It’s no less hellish, and in some ways, probably moreso for a parent to watch. Trust me, some days I feel a lot worse for what Mr. Shoe has to see than what I actually have gone through.
And LCH in adults looks like a lot of other things (hence the really exceptionally long time for diagnosis, even when things got really freaky). It looks like an autoimmune disease, or an immune deficiency, or cancer. Or like you’re a screaming, flaming, anxiety ridden pain in the ass. The doctors who work with it most can’t quite determine what it is (except that patients with it have at least a little bit of a right to be a pain in the ass and probably need a good primal scream now and again).
So I don’t know what other people with LCH have gone through, so much, except that many people now are essentially works in progress. I have re-invented and revised myself before, and I can do it again, and I think it will be easier once I see what this first round of attack is like. It may not always be this way, because even if I don’t change, medical classification and advances do. I have a much better idea of what I am dealing with, and thank-friggin-goodness I know that I am dealing with something. (I always have to laugh at the “you know how you feel!” people. No, I got to the point I really didn’t. Something was wrong, something had changed, something was fundamentally so askew that I felt like a person in a vegetative state, except they get more help with daily living — and no one could say that anything beyond I seemed in relatively good health. How could I not feel like it must be me, like I was doing this somehow?)
But truthfully, I am not sure what the next year is going to bring. I’d love to be able to work at the Historical Society, and write again at the usual haunts. Hell, I’d love to do more. For now, though, I think I’m going to set a specific little bit up on this site talking about what’s going on in terms of managing this, and where I’ve come from. I’ll try to do more generalized stuff too, in this main section.
Part of it is for my memory, which still kind of sucks. I also know that while there is that singular journey we take, it’s nice to know that there are others who are travelling parallel paths. Part of it is when you’re sick, there’s stuff no one wants you to say, no one wants to hear you say, and stuff people feel obligated to say to you even though they know it’s a line of bull.
It’s okay. And I’m going to say it. And in the process, we’ll find our roads, and where ever we go… There we are. There’s some comfort there, folks. Know what? Just go back to the egg nog. Seriously.