I've been thinking about death a lot lately. I read a post from a favorite blogger of mine and the life expectancy thing has made me contemplate death nearly every spare moment I've had since its publishing.
Ever since I was old enough to understand death, I've somehow had it in my head I wasn't going to live very long. How long? At the time, I didn't know, but for the past few years the number "25" has been in my head. It's weird.
I don't know the life span of people with NF1. It's out there. But I don't want to know. I take comfort in the fact that most of my NF friends are 30, 40, 50, and older. All with various levels of NF. And they're alive. With careers, families. They travel and live and are fine. But it doesn't do much. Deep down, I know. I know like we all know: This is something that is going to kill me. The life of someone with NF is usually taken by complications from it. From surgery, from cancer, tumors, things gone wrong and out of control of any doctor.
Now, people out there who don't understand NF, or any disorder at all, will call me irrational and crazy. But do the research. Complications from NF is what kills people with NF. Old age? Hardly.
I write all this to get it out of my head. Maybe if it's here, I wont think about it all. The. Time. But I also write this out of guilt. If you'd read the post I linked above, you'd see that a doctor speaks of life expectations for children with a certain disorder:
"I'm not sure exactly how I feel about how the doctor replied, but the question had been put out there and so perhaps a straightforward answer was appropriate. The doctor put together a hypothetical patient with a number of specific conditions that roughly matched most of the kids at the conference. And then he said it. He just opened his mouth and said it. "Statistically, that patient could expect a lifespan of approximately eight years. If they receive home care rather than full-time clinical care, that number goes up to about ten years."
Ten years. Ten years? Ten years and I'm worried sick of not seeing 26? Let alone 65? What was I doing at ten? Running around in my sunflower swim suit in the summer. Getting tan and sand in my suit. Playing in leaves, making snowmen. Not even worried about NF, or my future or anything.
And these kids have so many issues. I feel so guilty about it. I feel insensitive, just like the blog author does.
But I'm frustrated. I don't want to think like this. I don't want to worry when I'm going to die.
Know what else freaks me out? This whole Myan Calender thing. It makes my future stop at 2012. Seriously. I feel like NF or The Mayan Calender is going to kill me. And if I do die at 25, maybe I'm better off. Be long gone before the Calender kicks in.
I just can't see myself growing old. I think about getting married, and think about kids, and a future. But they're just thoughts. Not plans.
I don't like surprises. My mind has drifted from tumors and cancer, to car accidents. I drive into work at 4:00 in the morning. I wonder "Is a deer going to spring out and cause a deadly accident?" "Is a drunk going to be on the roads?". I'm very aware of my mortality. I don't take my age into consideration that I'm going to be fine. That nothing bad can happen. Something bad can always happen. Especially with thoughts like that. It always happens when you don't think it's going to happen. I'm one of those people who expect the worst, so when nothing happens I'm pleasantly relieved.
Look at me. I'm usually happy. I'm a high functioning freak. I have a job, a car, and a boyfriend; all of which I like. I'm 23 and I feel like life is just beginning. It just fits that something bad is going to happen. Can't you just feel it?
It's just out there. Lurking. Waiting.
(EDIT: A commenter on another post told me that some family members with NF have lived to be 90 and 80. So I'm feeling a little better. 90! How amazing is that? Unfathomable.