This morning, I spent four hours being questioned about my skin disorder by the attendees of a dermatology conference, and it was hard. They'd ask me what I thought they should know, andI clammed up. One doctor from Edinburgh gushed with me about the town. Another asked me about the progression of the disorder. I found myself reverting to monosyllables. I wish I understood why I had such difficulty with the topic.
I mean, yes, the whole event was bizarre. If you were up this morning you saw my tweets. Dermatologists on parade, with bowties that were not cool, asking me about certain...uh...cycles. Lord have monkeys. Still, it doesn't explain why I can babble about everything else about me yet not this.
I can think of a ton of excuses. It's the one thing I can't control. Something that's so much a part of my life that I can't separate from it. Answering their questions tapped into a slew of body image issues, and truths I didn't want to face about what's gotten worse over the years. Nothing I can think of gives the difficulties weight, to my mind, because if I'm going to speak as I do of owning my disability, if I'm going to teach the teens I volunteer with and the people who ask me about it, that my disability is a part of me no more or less important than anything else...well... I need to be willing to talk about it. In all forms. Not just the ways in which I "overcome" it. The things I can do "in spite" of it, but the difficult truths.
I need to be as willing to be open about that part of who I am as I am about the other parts.
Although, next time i'm asked if I'm "mobile" I'll go with Mom's answer. "No. I Apparated here."