Genetic disorder means daily battle with calculated risks
By: Megan Graham
(Originally published in The News-Gazette, August 1, 2012)
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.”