I’ve always been pretty philosophical about life and death. If you’d asked me as a kid how old I’d be when I died, I’d have told you maybe 26. I wasn’t a gloomy child though. I was just smart enough to realize that my body wasn’t normal, that my upbringing wasn’t normal, and that normal life expectancy probably didn’t apply to me.
I grew up in an abusive home, full of poverty and violence. I grew up frequently sick, hurting in ways that weren’t normal for a kid my age, and with a body that didn’t seem to cooperate with the usual rules of such things. When I was 8, I had a massive cyst about the size of a naval orange drained from under my right arm. All I knew was that it was a lump, and that they made me go to school with the drain tubing still hanging out and foul smelling gunk oozing into the wad of bandages that wouldn’t let me put my arm down. It took me a week to work up the nerve to ask my mother if it was cancer, and she assured me it was. (No, it wasn’t. Yes, she was the true cancer of my childhood, but that’s not really the point I’m making here.)
I remember penning a last will and testament in the thick, blocky letters of an 8 year old, knowing all the while that it was unlikely my mother would actually distribute my few precious items as I’d wished, but trying anyway. I thought I was dying because I’d watched my granny (great-grandmother) die by slow degrees from colon cancer. I thought I was dying every single day for over a year until I finally convinced myself I was safe, though there always lingered some doubt. And I went to school anyway. I got up and made breakfast for my baby brother anyway. I did the laundry and read books anyway. Because whatever time I had left, I meant to use it.
When my POTS started rearing up and long before we had an official diagnosis, I thought I was in trouble. Not dying, but possibly life-limited in other ways. And POTS has limited my life in some ways. I will never run a marathon, not that my knees would have let me do that anyway. I will never get back the two years I spent lying on my back, too sick to sit up or walk to the bathroom without help. I will never get back the lost energy or the lost time or the lost hope. But I adjusted. I figured out where the limits were and how to push them a little further out every day, and I got back up on the horse and rode toward the rest of my life.
This liver thing seems to have knocked me down again. I’m having a lot of pain from it already, and a lot of chest pain (POTS + stress = stupid body days). I’m a bit more emotional than usual and I’m feeling like I need to re-organize some of my priorities. But I’m still philosophical about it. Nobody lives forever, and I’m no exception. I’ve known that since I was 8 years old. So here’s me, getting back up on the horse and riding on into the rest of my life. I’m going to keep working, keep writing, keep loving, keep planning. For however long I have left on this lump of spinning rock, whether it’s 4 months or 40 years, I’m going to keep on getting back up and riding on. I have sunsets to catch.
Speaking of sunsets, we saw some awesome ones in Florida two weeks ago. 80F and sunny in February? I’ll take it. Look, I even have a tan! (No, seriously. That’s tanned for me.)