It must have been more than one thing that got me to this point. Whatever it was, it’s been building for years, but today just set it off. Without further explanation, here is what I am trying to say:
I am not a role model.
You don’t want to be me. You don’t want to be anything like me. I can see it. Even among people who know me, I hear about how they hope their lives don’t turn out like mine. I completely understand that. Who would want this?
It isn’t enough to just be a good person anymore. Frankly, I’m not sure it ever was. My mother raised her daughters to be nice and then apologized to us for years, saying that was probably the wrong thing to do. Maybe it was. Nice gets walked all over. Nice feels guilty for being a burden every moment of every day. Nice wants to be successful not because she has delusions of being something in this world, but because she feels that to do any less would be to let down the people who made her.
You don’t want to be me, because I don’t want to be me.
I didn’t “conquer” my disease. I’m sure there would be some who say that I let it beat me, as if I could have just willed myself into perfect health. Believe me, I get it: there are people in this community, in the chronic illness community in general, who do things that I will never do. Who have multiple diseases, or are sicker than me, and contribute more to the world than I do. I must just be making excuses. If she can do it, and he can do it, why can’t I?
Because willing your body into submission doesn’t work.
Because I am not the same as anybody else, and neither is my disease.
Because good intentions don’t cure chronic illnesses.
So no, I am not a role model. I don’t inspire. I survive. I don’t run marathons. I walk for a few minutes and stop. And start again. And stop again. I don’t save the world. I exist in it.
That should be enough.