One of the toughest things to deal with, having a chronic illness, is how many other things that that one illness affects. I went a really long time before getting diagnosed doing a lot of harm to myself. I was, effectively, dying, but it was taking me an incredibly long time to do it. I hear other stories from people about type 1 diabetics who just felt really thirsty and were losing weight for a couple months, and because they were younger, it was one of the first things people tested for, and viola, yes, there it is: congratulations, you’re dying.
It was the shovel to the head, yes, but it wasn’t four days in the ICU.
And with me, I went such a long time; seeing one doctor after another, trying to figure out what the hell was wrong with me (and I’ve read of this happening to other t1s diagnosed after 25. Once you’re in you’re 20s, people are less likely to test for it when you come in complaining about, say, thirst and yeast infections), and in the meantime, a lot of stuff was breaking down. My doctor told me that the reason it took me so long to die is because, yes, I was in such good shape. My body was slowing moving through all of my defenses, slowing burning through and shutting down systems one at a time until I finally went into seizures.
There are things already that I know don’t work as well as they used to. There are things that work a lot better now that I’m not dying quite as quickly (mmmm insulin). But to some extent I am, in fact, dying. Oh sure, we’re all dying: I’m just going to do it a little bit faster than most other people, and that’s a tough thing to come to terms with, especially for “I’m a kick ass brutal woman Kameron.”
It’s hard to say, now, but I’m doing everything I should be doing and my numbers are good and I’m not using expired insulin, so why am I having all of these problems? And it’s like: because it’s a chronic illness. It’s an immune disorder. It’s not one thing. It’s not like some kind of localized disease that eats your foot and stops at the knee. It gnaws at everything. Everyday. And some days, when you’re not looking, it gnaws more quickly than others.
Sometimes I get melancholy about it. It’s such a strange thing, when you look death so close in the face and then spend every day that much closer to it. I think about all sorts of things, about how all of these moments, each moment that I’ve gotten after getting sick, is like a stolen moment. It feels like something precious and extra. Even during my worst days, that feeling is still there. That feeling like I’ve died already, like this is yet another new life. Another incarnation.
But in this incarnation, things are a lot harder. I recognize that and I’m dealing with it, but sometimes, I know, I despise it for being so hard. I get angry and hopeless and scared and I wonder if all these stolen moments are worth it. It’s a silly, fleeting hopelessness.
Because all I have to do is look out at the world, at all this, everything I’ve got, everything I’m building and rebuilding, and I feel so lucky; lucky and cursed, because I want so desperately to make all of these moments count. Each and every one. They’re so goddamn beautiful, and they go by so quickly, just slip right past you, while you’re eating dinner, turning off your computer, reading before bed. They happen and they’re gone, and that’s one less heartbeat you have to carry out the rest of your days with.
I feel now a lot of how I felt in South Africa. It’s this sort of heady, dizzy fear and joy; this drunk feeling like you have to burn through every moment so brilliantly, so brightly, because you’re not sure what’s going to happen next; around the corner, back at the house, in your car. You don’t know if this is going to be the last moment; you’re not sure if somebody’s going to snatch it away from you if you’re not careful. And oh, god, that feeling of uncertainty, of fear, of brightly burning moments, is overwhelming. Some days you’re not sure if you can do it, if it’s even worth going on, because of all that fear. Other days you cling to life with a fierceness that terrifies you. Not yet, you say. Not quite yet. Just one more breath. One more heat beat. Let me have just one more.
So I’m still stumbling blindly around, trying to figure out what’s wrong with me, what else this illness effected, what more I can do to stare down death another day. My hope is that at some point the worst will be over. My despair is that it’s true that I’m dying just a little bit faster than everyone else.
Which means, of course, as Asimov said: I’ll just have to type a little bit faster.
And live a little bigger.