Feb 20, 2015

Vampire Family

A family phenomenon: we with cone dystrophy sit with our backs to the windows. Daylight from outside hurts our eyes, and if we sit across from someone who's backlit, we only see them as a shadow surrounded by a painful white halo of glare. So we always sit with our backs to the window, like Nosferatu covering his face with a cape lest he disintegrate in the rays of the sun.

I once took my dad and aunt, who both share my eye disease, out for Vietnamese food. My kid brother was there and got confused when we all walked around to one side of the table and just stood there, silently wondering how three of us were going to fit into the two chairs that had their backs to the light. As the youngest dystrophyst, I let them take these prime seats and faced the glare. I can deal, and besides, I already know what my dad looks like.

When I meet new people, I'm more discreet—It's like if they find out what I really am, they'll just pull a stake out of their bag and drive plunge it into my heart. Like today, I was meeting a stranger in a café. "I'm in a blue coat by the window," she'd texted, and when I arrived she was, of course, nearly impossible to see, just a glowing ball of light over in the corner. So I got my tea and sat down, trying not to squint, and with it being three degrees outside, she was huddling inside that blue coat of hers. "Hey," I said, "it's cold by this window—Let's go sit over there!" and I took us to another table, nabbing the seat with its back to the light without revealing my actual vampiric nature. Coast clear, stake free.

There's a spectrum of empathy around this photophobia. Strangers and acquaintances don't understand it. Friends and kid brothers need some reminding (but the now-teenage brother is as down with allyship as my cousins have long been at helping my aunts across the street). However, its only we with cone dystrophy who can all stand on the same side of the table and wait, communicating with our Draculean powers of telepathy, until the sun goes down.

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