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.

***

Chike — pronounced Chee-kay — was born with a rare genetic disorder: chronic granulomatous disease, an immune deficiency that hinders his body from fighting off fungal and bacterial infections.

The condition was once called “fatal granulomatosus of childhood.” But with medical progress — vaccines, surgical abscess drainage and better medicines — it is no longer necessarily fatal. One victim lived to be 63. Four out of five sufferers, of which there are only about 1,200 in the country, are boys. Many never live to become men.

Life with the chronic granulomatous is difficult, but Chike’s cerebral palsy makes it even harder. He cannot walk without a walker. He can suffer from multiple infections at once that come from any of the millions of invasives most people breathe in and fight off. They come without warning, and he often doesn’t know he has them until a doctor points them out.

“There’s absolutely no way to know,” he says. “It could get worse for me. It could get better right now. It’s kind of in the worse column, but…”

When he commented to a blogger with similar health problems, “My body is constantly fighting WWIII,” he wasn’t exaggerating.

Every day is filled with calculated risks:

— Does he balance on the legs of his chair to reach up and get a plate so he can make a meal for himself?

— Does he hoist himself up into the newly remodeled bath that is utterly dangerous when slippery?

— Does he climb out of his manual wheelchair in his room and down the stairs to his electric chair yet another time that day to get the one small thing he forgot downstairs, knowing full well he could slip and get a cut or bruise that could take forever to heal?

The answer is usually, “Yes.”

“I could be a germaphobe and still get hit with something.”

***

Chike has two very different kinds of days: neverending days at home and days out in the dangerous, dirty world. On the dangerous days, he catches the 8:25 a.m. bus. Some days he goes to film his three weekly TV shows at Urbana Public Television, two about film and one about sports. Some days he goes for physical therapy to keep his leg muscles loose.

Being out and about so much may not be wise. The Chronic Granulomatous Association says, “Remember, you cannot be too cautious with your health.”

People with Chike’s disease are not supposed to work with hay or grass clippings, go barefoot, play at a park with wood chips, go into barns, repot house plants, go inside newly renovated buildings or go near construction sites. People like Chike need to tell the doctor immediately if they have a fever. They are supposed to be vigilant, supposed to live in fear.

“You do end up playing that head game with yourself, worried that you’re not doing enough to keep yourself going,” he says. “I just can’t do that.”

As a boy, the wheelchair made Chike feel special, like a pint-sized celebrity. Girls couldn’t get enough of the boy with the wheels. In high school, though, he got looks, ones he viewed as saying, “What the hell are you doing invading the space of us normal people?”

The cerebral palsy, though certainly something he has struggled with, he at least understood. He was slower to grasp that he could die at any time. That realization came in pieces.

He remembers overhearing his parents talking about it with other adults and slowly understanding that something was terribly wrong with his body. As children his own age grew stronger, he began to realize all the things he couldn’t do.

He wondered in high school if he’d live to see his graduation day. The fears resurfaced in college, when he began to worry that he could die without saying goodbye to his parents, sister and friends. His deepest fear is that he’ll die tonight without time to tell them.

***

Chike spends much of his time in his bedroom on the Internet, often going downstairs only for meals.

“Even hermits gotta eat!” he says.

He blogs about movies and chats with friends he meets online. The Internet provides a mobility he doesn’t have in life. It even allows for a little bit of romance now and then.

“Ninety-five percent of the time I feel like I don’t have a chance with any girl.”

Online, that can be a different story.

One night, after perusing his OKCupid matches, he started up a conversation with a young woman whose virtual compatibility with his profile was too much to ignore.

As they chatted another night, she asked him his real name.

“Chike,” he typed.

“How is that pronounced?” she asked. “Does it rhyme with Mike?”

“No it does not. Chee-kay.”

And they quickly delved into his conditions.

“Frankly, I’m surprised my disability doesn’t frighten you.”

“I’m a bit concerned, I guess,” she typed. “But writing someone off completely because of that — well, that’s just plain mean.”

They chatted through the night, for nearly six hours. She took his phone number and said she would think about text messaging him. He really hoped she would.

Most of his free time, Chike listens to jazz — a favorite recording of Chicago jazz vocalist Kurt Elling and his trio is playing just now. He knows every inflection, scat and purr of this particular recording from 2006. He sings in his room, his left hand — his good hand — gripping the computer mouse, his right hand in its permanent position with thumb and finger forming an askew U, the three remaining fingers curled into his palm. As he sways his small frame in his chair, the pointer finger of his right hand hits the tempo up and down as if he is conducting.

He does the Louis Armstrong voice, deep and scratchy and round, with his eyes squeezed shut, his head bowed and a smile on his face. He does the Nat King Cole voice, smooth and silken and weightless, leaning back and tilting his face skyward. He pretends to smoke a cigarette, something he would never do in real life. His health is bad enough.

***

Every night before sleep, Chike allows himself five minutes for tears. “Five minutes a night,” he says. “That’s all I get.”

It’s never because of any particular difficult moment of his day or because of his terrible genetic luck. It’s because of the collection of millions of hardships and fears and uncertainties he feels at every moment, the awareness that at any second, during sleep or waking hours, some Aspergillus fumigatus or Blastomyces dermatitidis or Cryptococcus could creep into his body.

He wonders: Will I die in my sleep from something the doctors haven’t found? Or will medicine progress so that I might live long and healthy?

“I just keep going the best I can.”

The past few weeks have brought hope to Chike. The girl from OKCupid finally texted him back. She wrote, “Boo.” They’ve been chatting every day since, and he can’t stop smiling.

He also was accepted into the journalism graduate program at the University of Illinois. He’s expecting at least one new friend, some difficult classes and the rekindled independence of apartment life back on campus.

Of course, the apartment search isn’t going smoothly — nothing ever does. In the first one he toured, his wheelchair got stuck on a rainbow knotted rug and the chair wouldn’t fit in the bathroom. The second wasn’t much better.

“You know, I’m going into it with some trepidation,” he says. “Am I going to get through this without an incident?”

Yet Chike’s determined to stay optimistic, hoping graduate school will lead to a life beyond the walls of his boyhood room and the confines of his disease.

After all of it, he says simply, “I’m just grateful.”

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.

Continue reading

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.

Continue reading

Why Theresa Lalanos Became a Nun

Why Theresa Lalanos Became a Nun

By: Erin (Walsh) Gibbons

(Originally published in The Catholic Digest, October 2002)

Author’s Note:

When I interviewed Sister Miriam and the other nuns in her convent, what surprised me most was their candor. I didn’t think Sister Hannah would admit to having a hard time walking by a good-looking man, or Sister Miriam would open up about her strained relationship with her father. But I’ve since found that most people will be remarkably honest if you get outside of your own comfort zone and just ask the question.

Writing this story also taught me the power of detail. Some of it’s simply doing the legwork – being there at 4:30 a.m. for morning prayers so you can make note of the flickering candle and one of the nuns blowing her nose. But it’s also gathering enough anecdotes and color through the interview process so that – even when you can’t observe something firsthand, or it happened in the past – you have the authority to tell your subject’s story as if you were there, without having to attribute every sentence. I think that makes the difference between a straightforward newspaper article and a piece of literary journalism.

- Erin Gibbons

The houses on Robert Drive are still asleep. It’s 4:58 on a Friday morning, and the sun won’t start rising for another hour. For now, the neighborhood is dark and silent. Only a single window on the street glows with dim light. Behind the thin curtains, inside the old, plain brick house, a different kind of morning routine is already beginning.

Sister Miriam Palanos, cheeks still flushed with sleep, is the first to enter the small room that is a chapel. She takes her place on the kneeler in the back left corner and, eyes turned downward, awaits the others. Sister M. Jacinta Fecteau and Sister M. Veronica McDermott file in a few minutes after 5 a.m. and kneel quietly. Sister M. Hannah Minor, blowing her nose, is the last to arrive. Everything in the room is simple, including the women themselves. They are all dressed alike, with long gray habits and black veils hiding their hair. As the clock ticks methodically, the women face an altar covered with white cloth. On it sits a small candle, flickering wildly and sending spirals of smoke dancing toward the ceiling. Suddenly, Sister M. Jacinta speaks.

“In-the-name-of-the-Fath-er,” she says, a rhythm in her high-pitched voice that pierces the silence. “And-of-the-Son, and-of-the-Ho-ly-Spir-it,” the other three women answer in unison.

Continue reading

Vice Verser

Vice Verser

By: Courtney Greve

(Winner of the 1996-97 Department of Journalism’s Brody Creative Feature Article Writing Award)

Author’s Note:

Writing this piece taught me the importance of observation. Scribble down every detail, no matter how silly or small; you never know what will be crucial to the narrative later. Since the subject was a poet, it was crucial to capture not only his passion, but the rhythmic pace of his art. Finally, I learned to list questions to ask the subject later — a lesson that stuck with me.

-  Courtney Greve

People listen when he speaks.  They might not always agree with him, but they listen.  A platform to spread the good Word can be found in any room.  At least that’s what 19-year-old Kynshasa Ward believes as he prepares to take center stage at The Red Herring’s Thursday night open mic, where the odd assortment of people in the crowd tend to be more accepting of his churchy topics than your average Joe’s.  From his table for one in the back of the room, the University of Illinois sophomore can see everybody as they weave between cliques, lighting clove cigarettes and sipping cappuccino.  Body-pierced freaks and long-haired neo-hippies dominate the scene.

Kynshasa Ward knows he doesn’t really fit in with this rag-tag gang and that he will be one of the only people performing poetry.  He doesn’t think it matters.  He waits more than an hour for his chance to speak and during this time he wonders if God will speak through him tonight and if people will hear His message.

Continue reading

Good for the Head

Good for the Head

By: Kavitha Cardoza

(Originally published in the C-U Cityview, August 2-8, 2002)

 

Author’s Note:

There were many lessons I learned but the main one was the power of asking questions. Even if you know nothing about a subject, you can learn about it by asking the right questions. It also taught me not to be nervous about going into a situation that was out of my comfort zone/I knew nothing about because that’s what journalists do! And I use those lessons every single day.

- Kavitha Cardoza

 

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.

***

Chike — pronounced Chee-kay — was born with a rare genetic disorder: chronic granulomatous disease, an immune deficiency that hinders his body from fighting off fungal and bacterial infections.

The condition was once called “fatal granulomatosus of childhood.” But with medical progress — vaccines, surgical abscess drainage and better medicines — it is no longer necessarily fatal. One victim lived to be 63. Four out of five sufferers, of which there are only about 1,200 in the country, are boys. Many never live to become men.

Life with the chronic granulomatous is difficult, but Chike’s cerebral palsy makes it even harder. He cannot walk without a walker. He can suffer from multiple infections at once that come from any of the millions of invasives most people breathe in and fight off. They come without warning, and he often doesn’t know he has them until a doctor points them out.

“There’s absolutely no way to know,” he says. “It could get worse for me. It could get better right now. It’s kind of in the worse column, but…”

When he commented to a blogger with similar health problems, “My body is constantly fighting WWIII,” he wasn’t exaggerating.

Every day is filled with calculated risks:

— Does he balance on the legs of his chair to reach up and get a plate so he can make a meal for himself?

— Does he hoist himself up into the newly remodeled bath that is utterly dangerous when slippery?

— Does he climb out of his manual wheelchair in his room and down the stairs to his electric chair yet another time that day to get the one small thing he forgot downstairs, knowing full well he could slip and get a cut or bruise that could take forever to heal?

The answer is usually, “Yes.”

“I could be a germaphobe and still get hit with something.”

***

Chike has two very different kinds of days: neverending days at home and days out in the dangerous, dirty world. On the dangerous days, he catches the 8:25 a.m. bus. Some days he goes to film his three weekly TV shows at Urbana Public Television, two about film and one about sports. Some days he goes for physical therapy to keep his leg muscles loose.

Being out and about so much may not be wise. The Chronic Granulomatous Association says, “Remember, you cannot be too cautious with your health.”

People with Chike’s disease are not supposed to work with hay or grass clippings, go barefoot, play at a park with wood chips, go into barns, repot house plants, go inside newly renovated buildings or go near construction sites. People like Chike need to tell the doctor immediately if they have a fever. They are supposed to be vigilant, supposed to live in fear.

“You do end up playing that head game with yourself, worried that you’re not doing enough to keep yourself going,” he says. “I just can’t do that.”

As a boy, the wheelchair made Chike feel special, like a pint-sized celebrity. Girls couldn’t get enough of the boy with the wheels. In high school, though, he got looks, ones he viewed as saying, “What the hell are you doing invading the space of us normal people?”

The cerebral palsy, though certainly something he has struggled with, he at least understood. He was slower to grasp that he could die at any time. That realization came in pieces.

He remembers overhearing his parents talking about it with other adults and slowly understanding that something was terribly wrong with his body. As children his own age grew stronger, he began to realize all the things he couldn’t do.

He wondered in high school if he’d live to see his graduation day. The fears resurfaced in college, when he began to worry that he could die without saying goodbye to his parents, sister and friends. His deepest fear is that he’ll die tonight without time to tell them.

***

Chike spends much of his time in his bedroom on the Internet, often going downstairs only for meals.

“Even hermits gotta eat!” he says.

He blogs about movies and chats with friends he meets online. The Internet provides a mobility he doesn’t have in life. It even allows for a little bit of romance now and then.

“Ninety-five percent of the time I feel like I don’t have a chance with any girl.”

Online, that can be a different story.

One night, after perusing his OKCupid matches, he started up a conversation with a young woman whose virtual compatibility with his profile was too much to ignore.

As they chatted another night, she asked him his real name.

“Chike,” he typed.

“How is that pronounced?” she asked. “Does it rhyme with Mike?”

“No it does not. Chee-kay.”

And they quickly delved into his conditions.

“Frankly, I’m surprised my disability doesn’t frighten you.”

“I’m a bit concerned, I guess,” she typed. “But writing someone off completely because of that — well, that’s just plain mean.”

They chatted through the night, for nearly six hours. She took his phone number and said she would think about text messaging him. He really hoped she would.

Most of his free time, Chike listens to jazz — a favorite recording of Chicago jazz vocalist Kurt Elling and his trio is playing just now. He knows every inflection, scat and purr of this particular recording from 2006. He sings in his room, his left hand — his good hand — gripping the computer mouse, his right hand in its permanent position with thumb and finger forming an askew U, the three remaining fingers curled into his palm. As he sways his small frame in his chair, the pointer finger of his right hand hits the tempo up and down as if he is conducting.

He does the Louis Armstrong voice, deep and scratchy and round, with his eyes squeezed shut, his head bowed and a smile on his face. He does the Nat King Cole voice, smooth and silken and weightless, leaning back and tilting his face skyward. He pretends to smoke a cigarette, something he would never do in real life. His health is bad enough.

***

Every night before sleep, Chike allows himself five minutes for tears. “Five minutes a night,” he says. “That’s all I get.”

It’s never because of any particular difficult moment of his day or because of his terrible genetic luck. It’s because of the collection of millions of hardships and fears and uncertainties he feels at every moment, the awareness that at any second, during sleep or waking hours, some Aspergillus fumigatus or Blastomyces dermatitidis or Cryptococcus could creep into his body.

He wonders: Will I die in my sleep from something the doctors haven’t found? Or will medicine progress so that I might live long and healthy?

“I just keep going the best I can.”

The past few weeks have brought hope to Chike. The girl from OKCupid finally texted him back. She wrote, “Boo.” They’ve been chatting every day since, and he can’t stop smiling.

He also was accepted into the journalism graduate program at the University of Illinois. He’s expecting at least one new friend, some difficult classes and the rekindled independence of apartment life back on campus.

Of course, the apartment search isn’t going smoothly — nothing ever does. In the first one he toured, his wheelchair got stuck on a rainbow knotted rug and the chair wouldn’t fit in the bathroom. The second wasn’t much better.

“You know, I’m going into it with some trepidation,” he says. “Am I going to get through this without an incident?”

Yet Chike’s determined to stay optimistic, hoping graduate school will lead to a life beyond the walls of his boyhood room and the confines of his disease.

After all of it, he says simply, “I’m just grateful.”