Lights On ... LI

On a spring evening in my cinderblock classroom, I keep the overhead neon bulbs off for as long as I can. Natural light from the windows blurs the faces of the college students who’ve come to share their poems. The gauzy atmosphere softens my red face too – or at least I think it does. I want to relax in this dusk.

While we all sit in a circle, I stretch out my legs to show my jazzy knee highs. The kids joke with me about my socks. “Hey, Dr. Kaier,” says Michelle, a big girl who’s the soccer goalie, “did ya hit the sock store in the mall again?” Perhaps she’s figured out that I wear bold red and purple socks to hide my scales. Maybe she hasn’t. Maybe she’s just too kind to say that a sixty-six year old woman looks a little silly in brightly patterned socks.

Tonight I’ve brought Hershey’s Kisses to keep us going as we talk about their work while the evening light withdraws from the trees and the room grows grayer. Michelle is new to writing poetry and she’s shy about reading her work out loud. I hope she will tonight, though, because I want the others to see how far she’s come since we started in January, how sophisticated her newest poem is.

Joe, who’s several years older than Michelle, kick starts the discussion with some exuberant work. Most of his classmates comment. There’s a lot of easy praise being tossed about. I begin to think we are all a little too laid-back, though I’m enjoying the friendly vibes. But by seven-thirty I have trouble seeing the 12 point print on their photocopies. “Shall we turn on the lights?” I ask, while a sharp pain contorts the muscles in my shoulders as I get a flicker of how I’ll look in the glare of neon. “Nah,” says Joe, pulling the beak of his Phillies cap. Angela smiles under her turban, “We like it like this.” Maybe they mean it. Maybe the green haze gives us all some distance from each other. Some of their poems are witty and even funny – almost riddles. But some deal with tough subjects such as family difficulties—poems perhaps better read in the shadows. Michelle’s is about her absent father. I see her arch her toes, with their chipped orange polish, in her black flip-flops. She spreads her right hand across her poem and seems to pat it. I wonder if she’ll dare to read her piece out loud.

At 7:45 I tell them to take five. While they’re checking their phones, I get up and my socks slip out of view under my long jeans. I walk over to the light switch. It’s time to get serious, to hunker down and give the poems a strong critique. I flick on the neon overheads. When I call the students to attention, the trees have disappeared, the soft light has scattered. But the classroom’s come alive and I am at the center of it, my face taut, red and peeling in the bright light. Michelle raises her hand and her pale face gives me something marvelous to look at. “Ready?” I ask.

“Yep,” she says and starts to read. 

Anne Kaier has ARCI-lamellar ichthyosis. Her recent work, in poetry and nonfiction, appears in The Kenyon Review, The Gettysburg Review, Bellingham Review and other venues. Poems and an essay are included in Beauty is a Verb: An Anthology of Poetry, Poetics, and Disability, which is on the American Library Association Notable Books list for 2012.Holding a PhD from Harvard University, she teaches literature and creative writing at Arcadia University and Rosemont College in suburban Philadelphia.

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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