This part of town stretching all the way to the river. Criss-crossed with yellow bridges, luminous in the darkness like suspended birdcages.
Jen at the wheel looping delicately through the narrow streets. Her cigarette sparking. She is wearing neon hot-pants and a bubblegum pink Members Only jacket but she is big, boyish, punctuated with tattoos. In a delicate, lacy script, the words: Eat. Gay. Love. splayed across her chest.
Theo in the passenger seat, fidgety, spit shining the lens of the camera. Neither male nor female, in a pin-striped seer-sucker suit jacket, occasionally hired to photograph events or the faces of the up-and-coming. In this case, a benefit for the Dyke/Trans March.
I sit quietly in the back seat, holding all the lamps.
The Blue Moon bar is on the main strip, shabby and dim-lit. We arrive early, to arrange the lights and sitting area. In the front room, huddled in the shifting glow of some large flat-screen televisions, three women in Steelers jerseys and feathered haircuts. Their eyes move over us. They turn up crooked smiles.
It’s been a long time since the packet arrived in the mail. But time, with its unpredictable dilation and contraction, has a way of making the packet arrive daily. In the upper left-hand corner, the crisp red logo of the Epilepsy Foundation of America. A three tiered flame.
The recipient’s name—my name—is misspelled.
I haven’t gone out since God knows when.
In less than an hour the back patio is flooded with people. They patiently wait in line to step in front of Theo’s camera. They shove, lick and posture in the makeshift floodlights. Their tattooed arms and necks. Breasts bound beneath button downs. Asymmetrical haircuts giving the impression of two-faced, double-gendered creatures, eyes dark with swoops of eyeliner.
Inside the envelope, there is a folder covered with full-color photographs of smiling faces: all races, all ages. They hold hands and nuzzle one another. They look straight out, confident, or glance coyly down and to the right. The younger women have ironed hair and feminine suits. Perky eyes and bleached teeth.
I’ve met myself and one other epileptic and if we were men, we would not resemble these men, and if we were women we would not resemble these women and compared to these children—these big-toothed, big-eyed things—we are animals.
A drag queen, radiant and glittering, adjusts her cleavage in the corner. Unabashed, gaudy gestures. The strands of lights threaded through the topiaries cast leafy shadows across her sequined gown. The shadows of her false lashes spider out like fans and darken her entire jaw.
Inside the folder are a dozen glossy sheets of paper, each centered on a specific topic: Epilepsy and Bone Health, Antiepileptic Drug (AED) Use, Talking to Your Doctor, Social Consequences of Epilepsy. Several sheets are focused specifically on epilepsy in women. The effective use of birth control and the regulation of hormones. Graphs depicting the coincidence of seizures and points along the menstrual cycle. Complicated statistics on the increase of birth defects related to various AEDs. Instructions to not bathe an infant in a bathtub unless someone else is nearby.
The hissing release of hormones, the sloughing off of tissues, the silent release of an egg. Causing all the other parts to go wild.
I have already cut my hair close to the scalp. I have tattoos down arms and across my chest. I wear cowboy boots and jeans and hooded sweatshirts. I am so thin that from behind men mistake me for a child. For a boy.
I want to be untouched.
When the DJ plays the right songs, all the bodies go wild. Madonna. GaGa. I watch from here, through the window, their anonymous forms watery, rippling.
I’m not fooling anyone. When I walk through a bad section of town, a man gets close-up behind me and hollers, hey Demi Moore. You may look like a boy but I know you a girl. Come ere girlie.
Who chooses the bodies we fall into.
Jen sidles up beside me. Her gaze flicks across the patio. What about that one? She says pointing to a thin frame, shaved head. I shake my head. She points to a woman with curly hair, applying lipstick in front of the camera. What about that one? No, I sigh, not interested.
In the hospital the patients are sexless, genderless. I see them when I am coming or going. Their genitalia dangle beneath their hospital gowns, their bodies are milkless, drained. The hospital gowns are pale and blue, sprinkled with tiny white snowflakes, and do not cover them entirely.
In this way I have become like them: sexless, genderless.
Look, Jen tugs my sleeve. I’ve got to get you back on our team.
The last relationship I had was with a man. It ended almost a year ago, an anticlimactic, platonic unspooling. Before that I was engaged to a person with a mismatched body, who waffled on organs and pronouns. It ended dramatically, with last-minute plane flights to California and screaming matches and the ring slipped into an envelope, tucked into a bathroom cabinet as I loaded boxes onto the bed of a pick-up. We haven’t spoken since, but rumors wind down from San Francisco to Pittsburgh, that she’s changed her name, that she may or may not be a man.
The packet defines monogamous as having only one male partner.
Many of the sheets are written in a Q and A format, a faux conversation between scared epileptic and confident expert.
The packet says: I’m really nervous about telling my boyfriend about my seizures. I’m afraid he will be scared off.
The packet replies: It may be especially important to tell your boyfriend about your seizure disorder so there won’t be any unexpected surprises…Remember that intimate relationships are complicated and may have problems for many reasons.
Kate buys me a virgin drink and squeezes through the crowd to reach me on the patio. She is a peripheral acquaintance, a shameless flirt. At some point in our conversation I mention that I am writing some new nonfiction. Jen wriggles in and blurts, Writing a memoir huh? What’s it called? Miserable, Judgmental and Epileptic? I laugh. Kate bats her eyelids, what? I say, what do you mean what? She says, do you have that? I say, okay, yes.
She’s drunk. She doesn’t intend it. But she screws up her face. Her nose wrinkles and her eyes get smaller. Her upper lip arches. It only lasts a few seconds, but in those seconds I can see her weighing out whether or not it’s worth it to keep standing there, touching my arm, inventing future dates that will never take place.
The packet wants to know: My boyfriend and I are really in love. Can we get married if I have epilepsy?
The packet firmly responds: Yes. Most people with seizures fall in love and marry just like anyone else.
In a couple hours, Kate will leave alone, tottering on her bicycle down the sidewalk. Theo will struggle to wrap the cords of the lamps around their arched necks. Jen will light another cigarette and push her long bangs out of her face. I will take the bus home, wash my face, take off my dress. I will dutifully swallow my medicines and vitamins.
The packet whines: I hate my seizures and having to take medication. Sometimes I go to my room and just explode.
I lie down on my bed, fit to burst.
The packet gets close, pets my forehead and whispers: Everyone with epilepsy feels angry and sad at times. Those feelings are normal. Don’t ever be ashamed to ask for help. You’re worth it.