Since the age of thirteen, I’ve had a disease I still can’t spell (and I’m determined to keep it that way). Google tells me it’s “Ankylosing Spondylitis.” It’s basically spinal arthritis, but it affects all of the major joints in my body. It arrived alongside puberty and has been my form of a “dark passenger” ever since. Atypical to this form of arthritis, it started in my toes and knees and then worked its way towards my spine, taking up residence in my hips in my early 20s. By my 30s, I was told I was “ready” for a right hip replacement. Degeneratively speaking, I might have been ready, but psychologically and emotionally? Not so much. Fear of the procedure and possible complications made me put off the operation far longer than I should have. I ended up spending several years using what I took to calling my chair on wheels (rather than wheelchair). I wasn’t confined to it, but had to take it with me wherever I went because I couldn’t stand for more than 20 minutes. Frequently, I’d push around my own empty seat until I needed it. In early 2000, I could no longer cower from the inevitable.
Read the rest of the intro and the essay here.