The first time my body rages against itself, it’s 2009. I’m just out of college, and I have awoken to what feels like an explosion inside my skull. Oh god, it’s my eye, I realize. My little studio’s two windows become my enemies, pouring intense white light into the room. The light is a dagger. I can’t open my eyes, I can’t think, I can’t do anything but scream, literally.

I hide in the bathroom, where it’s cool and dark and I’m all alone, but the light from the main room streams beneath the door, which is enough to send me into a panic. I get into the bathtub and pull the curtain to further block the light. I try to breathe through and into the pain, but this isn’t just any pain, this is skull-exploding torture.

Have I finally been turned into a vampire? I wonder, trying to find a joke in my desperation. Is this it? As someone who’d written a college thesis on vampires and sexuality, that would be ironic. But this? This isn’t my body turning from human to eternal creature. This is napalm in my eye socket.

I have about $76 in my bank account. Going to a doctor or an emergency room would use money I don’t have. No parental support, and no more college insurance. Uber and Lyft don’t exist yet, so I can’t take a quick and cheap ride anywhere. I end up getting a pricey yellow cab ($25) to the doctor who prescribed me my contact lenses a few months ago. I wrap a black sweater around my head and sink into the back seat. My heart is pounding.

My eyes look like two red balloons. One is much more swollen than the other. Somewhere in there is a pupil, maybe some white of the eye. Somewhere in there is the girl I was before.

“You’ve just got contact irritation, honey,” the doctor says. “That’s all.” He gives me some steroidal drops, which help immediately (but not totally). “Just don’t wear the lenses for a few days.”

Sitting in that chair, looking up at this friendly doctor in his shoddy glasses shop decorated in pictures of moody, angular models wearing Prada frames, I just shake my head. It can’t be just contact irritation—the deep throb is too intense, the light too painful. And my instincts are leading me. I am a lighthouse to myself.

I don’t know it yet, but this is my induction into the society of the chronically ill and chronically silenced. This is my first taste of what it’s like to have my intuition erased because someone has a degree in medicine and I don’t. To be furious with my own body and with the way others look past it.

I stop wearing the contacts, yet every so often my eyes seem to blow up. The light and I are no longer friends. I become a creature of the night, which may fit my poetry-writing goth-girl persona, but I never wanted it to be literal. Literal darkness is different from artistic darkness. In the dark, creatures go blind. They don’t need their eyesight, so they lose it. I don’t want to learn how to live in the dark, not like this.

I Google all the reasons my eyes might be doing this to me. None of the reasons look very good (Oh god, I’m dying of brain cancer becomes a regular thought), and a lot have to do with autoimmune illnesses, which of course I don’t have. Right?