I haven’t written in a long time. Far too long. I always meant to start again but something inevitably would get in the way, usually my health. I’ve been hospitalized repeatedly, sometimes as frequently as three times in a month. I’ve dealt with pain and anxiety and depression. I’ve spent all my energy on trying to get better, but all that I’ve really accomplished is to hold off on getting too much worse.
I met Niki last year and very quickly felt close to her. As a couple of disabled women in activism we had a sort of connection that I very much appreciated. Going to Skepticon with her especially was a wonderful experience. We looked out for each other. Had a sort of sense of the little things that made big differences, the stuff that you just never can understand without having a chronic illness.
There’s one moment in particular that I keep replaying in my head. It was late on the drive back from Skepticon, after a huge weekend and probably ten hours at least in the car. We were at a rest stop for fuel and the bathroom. On the way out, she washed her hands, left her cane standing and took two steps to the hand dryer. I could see how excruciating for her it was, and recognized that look of regret when she knew it was two steps back to get her cane. I just whispered and asked her if she’d like me to move it next to her, and the nod and expression she gave spoke of such genuine relief.
Niki wrote. She wrote because it was important to her, because it made a difference to both her and the world around her, and she was amazing. And now I’m going to write, because it’s the most positive thing I can take away from this. I’m going to stop getting tripped up by hospital visits and several thousand page blog posts detailing my health care not being absolutely perfect. Writing is hard, but so is living with disability. She did both, and so will I.