As Joan* and I left the corridors of power we must have looked like a pair of drunken sailors; the day’s hectic events had brought our symptoms to full boil, and both of us were a little wobbly. But something else was going on with Joan – I noticed she was fighting back tears. “Am I missing something?” I said, baffled. “I thought we did pretty well back there.”
“Oh, it was fantastic,” she said. “It’s just that it’s always been so hard to get anyine to even listen to us, never mind invite us into their offices.” She flashed me a smile. “It’s a whole new world.”
Snippets of my testimony were featured on several of the nightly news broadcasts. One line in particular from my prepared statement got a lot of play: “In my forties, I can expect challenges most people wouldn’t face until their seventies or eighties, if ever. But with your help, if we all do everything we can to eradicate this disease, when I’m in my fifties I’ll be dancing at my children’s weddings.” I had made a deliberate choice to appear before the subcommittee without medication. It seemed to me that this occasion demanded that my testimony about the effects of the disease, and the urgency we as a community were feeling, be seen as well as heard. For people who had never observed me in this kind of shape, the transformation must have been startling.