Well, flare-o-matic hit hard in March and suddenly I find that trying to maintain my dreams of getting my book published is damn near impossible when trying to find the energy and ability to pay my bills and feed myself are the goals of the day.
I don't want to just struggle to survive every day.
I need to learn how to be sick, how to not be all or nothing, how to not think I have to do a marathon to prove I can overcome, to not think I have to stay in bed all day to prove I'm sick. I need to learn that who I am every day doesn't depend on my SEDs rate (a measure of inflammation.) I am as powerful when I am limping as when I am running.
Who I am seems to be a moving target. What I can do every day is a moving target. Much more so the past year and really, since about March. That's hard for people to understand. I shouldn't be so upset at my ex-boss (although I do wish she'd stop contacting me). How can she understand it? I don't understand it.
This blog is supposed to be about disability. I had visions of it being the sort of informative how-to-blog that shows up in reputable places. I wanted it to be a well-researched discussion of disability and culture. Instead, I find that I need to start with my subjective experience. How can I write about Ashley X without admitting that I feel frustrated and humiliated and ashamed when I have to call in to work because I'm not able to lift and provide safe care to the children I work with who have similar disabilities to Ashley's? I feel for her parents now more than I ever did. (But I still think what happened to her was WRONG!)
This blog is about disability filtered through the eyes of someone on the borders between the two worlds -- I live in the "abled" world but have a foot in the world of chronic illness and disability. I work with people with developmental disabilities as if I'm a representative from the "abled" world, trying to assimilate the poor immigrant into job skills and not freaking out the normal people. And sometimes, when I'm tired, I think that the division is so artificial, so arbitrary, that I don't even know what I'm doing. It's like I'm carrying some secret, like I'm one of "them" but nobody knows it.
I had a great weekend respite camp. I spent today in bed and refuse to feel guilty for it.