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 Long Road

The Long Road

By: Karen Mellen

(Originally published in The Chicago Tribune, April 27, 1997)

Author’s Note:

The most important learning [experience] was that of getting organized to complete a big feature story. This was the first time that I had completed such a long feature story, which has a different narrative arc than a news story or an in-depth piece focused on straight news. There were two challenges: to come up with a an organizing structure for the story and organize my notes during the interview process.

In this case, in working with Prof. Harrington, I was able to come up with a process to complete the necessary interviews and research for the piece, while also determining the organizing structure for the story. In the end, I determined that a traditional chronological structure made the most sense to tell the story of how Kelly lives, and put her experience into context.

– Karen Mellen

Kelly O’Brien awakens at 7:15 in the morning, lying on her back in the same position in which she fell asleep eight hours before.

Her 5-foot-10-inch frame is stretched out, fingers pointing toward the foot of her bed, her head propped up on two firm pillows. In her field of vision is the ceiling, painted white, a glowing digital clock to her right, a Michael Jordan poster on the wall by her feet.

If she lifts her head just two inches, straining her neck and shoulder muscles, she will touch a plastic buzzer she can grasp with her lips and blow into to signal for help. She doesn’t need to do this on this morning because Jinny Cho, her PA (personal assistant), arrives on time at 7:30.

O’Brien, paralyzed from the neck down in an alcohol-related car accident 5 1/2 years ago, can begin her day.

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Heart & Coal

Heart & Coal

By: John Lock

(Originally published in The News-Gazette, March 20, 2011)

Author’s Note:

Anything can be a character. Coal isn’t just a dog, man’s best friend. To her, he’s closer than a best friend. Your best friend isn’t always there, always helping, always listening. She shelters him from the verbal abuse he sometimes gets, just because someone doesn’t think a dog belongs in a Subway. He shelters her on dark night trips across campus. That kind of bond isn’t easy to get across on paper.

– John Lock

“Watch this,” Bridget Evans says. “Sit. Stay.”

Bridget wheels away around the corner, down the aisle at the Halloween store. Bridget is smiling; she knows what her dog Coal is thinking.

Where is she going? What if she needs me? Coal’s eyes are smiling as they follow her.

When the 21-year-old University of Illinois student disappears around the corner, he stares intently at the spot. After a couple seconds, his tongue hides in his mouth and he looks quizzically at the empty space.

Maybe I should go find her. But she said to stay. But what if she needs me? His eyes, mouth and head droop together below his shoulders, and he starts to whimper, softly at first, then progressively louder.

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