Genetic disorder means daily battle with calculated risks

Genetic disorder means daily battle with calculated risks

By: Megan Graham

(Originally published in The News-Gazette, August 1, 2012)

Author’s Note:

I tried not to make this a story of “disabled young man lives every day to the fullest even though he may die soon.” Because the story is not about how he looks to a tragic future. The story is about how he looks to the present moment, how he wills himself to wake up in the morning when has no idea how many moments will be left. The story is about a loneliness that he can’t fill because people are afraid of making him sick and maybe afraid of getting close to him. Mostly, it’s about permanently living in that space between childhood and adulthood—a space he may never truly be out of. Going forward, I know I have a lot more to learn. I need to ask the questions I want the answers to, not the answers that a subject gives me. I’m glad Chike and I had the opportunity to spend so much time together, even though I think his story was exhausting for both of us. It was hard for him to tell, and it was hard for me to hear. But it was worth it for me. I hope it was equally worth it for him.

– Megan Graham

In his old room in his parents’ home, a pretty house in the Cherry Hills subdivision of Champaign, Chike Coleman is poking through his shelves. He wants to find a Blu-ray disc, one of the beloved movies he bought in a half-off online sale from a site that sells independent films.

He moves aside tens of his prized jazz CDs, the Soapbox Derby trophies and the Hardy Boys books. The shelves are filled with 25 years of memories: books he has loved, model cars done in candy-colored lacquer, his University of Illinois diploma.

His high school and college friends — most 25-year-olds, for that matter — no longer live in the dust of their boyhood belongings. But after his fleeting years of collegiate freedom, Chike moved right back into this room, with its boxes of waterproof dressing and nonstick pads and bandages, bottles of hydrogen peroxide, soap-free cleanser and Clindamycin gel.

“It’s just kind of waiting,” he says. “Just like everybody else. Except your wait feels a lot shorter than everybody else’s.”

Chike glances at a photograph of him leaning back casually in his wheelchair, royal blue graduation gown draping his chest as he smiles broadly. He looks normal. He looks healthy.

Yet these are two things Chike will never be.

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The longings of … a beautiful boy

The longings of … a beautiful boy

By: Christian Gollayan

(Originally published in The News-Gazette, June 10, 2012)

Author’s Note:

I learned that intimate journalism could be more than just reporting the facts or gathering sensory details. When I was able to sift through my subject’s facade and get to the heart of who he is – his goals, longings and fears – and put that down on the page, I think that’s a part of intimate journalism, too.

– Christian Gollayan

He’s 6 feet tall barefoot, 6-feet-5 in his Jeffrey Campbell heels. He loves Lady Gaga and Andy Warhol and beautiful women who don’t care about what other people think.

He loves vodka. He takes it straight up, pursing his lips, keeping a composed face. It makes him feel as if he’s made of plastic; it’s reassuring. If he can keep a strong face after a shot, he can keep a strong face after anything.

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Charlie High: Life among the laundry

Charlie High: Life among the laundry

By: Marisa Gwidt

(Originally published in The News-Gazette, May 28, 2012)

Author’s Note:

While reporting and writing this piece, I learned that stories are everywhere. A lack of story ideas is due only to a lack of observation.

– Marisa Gwidt

“Oh, boy,” Charlie High sighs as he watches a college student drag in four
heaping bags of laundry. “She won’t finish in time.”

It’s 9:50 on a Monday night at Starcrest Cleaners in Champaign. Charlie’s
supposed to lock the doors at 11. Yet here is this young woman, opening a
silver front-loader and preparing to toss in a load of darks. Charlie, 67
years old, hobbles over in cuffed, faded jeans and intervenes.

“Uh-uh,” he mutters to the student, shaking his head as though she were
about to make a grave mistake. “I recommend that one,” he says, pointing
to another washer outwardly identical.

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