Isaac’s Journey

Isaac’s Journey

BY: Emily Siner

(Originally published in The News-Gazette, January 13, 2013)

Author’s Note:

When I first started talking to Rabbi Neuman, I noticed his way of speaking: philosophical, well thought-out, and at times very grand. I could tell he was used to giving sermons. I didn’t use a recorder – I had decided I didn’t want to use many direct quotes – but I would write down certain words or phrases he used that really resonated with me. Then, when writing the story, I incorporated his own words into my writing, even if I didn’t put direct quotes around it. That way, it was his voice telling the story, as if he was sitting down with the reader just as he sat down with me.

-Emily Siner

Some things he wants to remember; some things he tries to forget.

Isaac Neuman remembers a pretty woman who prepared the meals for the supervisors at St. Martin’s cemetery, an early Nazi camp in Poland. She took a liking to Isaac. “Stomarek,” she called him, a reference to the “one hundred marks” he had tried to hide from his captors. When they found the money, he had received a vicious beating. “Hey, Stomarek, come here,” she said and handed the 18-year-old leftovers from the supervisors’ meal. She would do this for him over the next year and a half. When he talks about her today, his eyes light up and his face breaks into a smile.

He laughs when he recalls a man named Joel Zolna, who sat next to him on a train to one of the last camps where he was imprisoned. The train slowed down as it curved around a mountain. Isaac was too weak to jump and run, and Joel couldn’t flee with his identification numbers painted on his coat. Isaac’s coat had the numbers sewn on, so he ripped them off and switched coats with Joel, who jumped off the slowing train and escaped. After the war, Joel would take Isaac out to nightclubs and concerts.

These are things Isaac, who is 90 now, wants to remember. He wants to remember every person who did something to lessen his pain.

“Sparks of holiness,” he calls them.

They lit the world in its darkest days.

Yet some things he can’t forget. He can’t forget the death and ugliness he saw as he was shipped from camp to camp, nine times. He can’t forget the boxcars or the beatings, the stifling heat, the burning cold. He can’t forget the cruelty that people showed. He can’t forget that they killed his brother, parents, six sisters, grandmother, mentor, aunts, uncles, and countless cousins and friends. The world was full of brutality and misery and stench. But despite it all, those sparks of holiness—they never died.

“Ani ma’amin,” he says in Hebrew.

“I believe.”

***

At the back of his house in Champaign, with a corner window overlooking a pleasant pond, is the study where Isaac spends most of his days. It is the study of a scholar: glossy leather armchairs, a wide desk in disarray, ten columns of built-in shelves holding books with titles such as “Sermons for the Seventies” and “The Rescue of Danish Jewry.” His rabbinic diplomas line one wall. He sits on a leather couch facing a TV and a picture of his son, David, shaking President Ronald Reagan’s hand. Piers Morgan is on CNN talking about taxes and gay marriage.

Isaac, who moved to Champaign in 1974 to be the rabbi of Sinai Temple, used to have more visitors. He has stopped encouraging them to come. It’s so hard to entertain anymore, and he has enough in his house to keep busy. He has his wife, who stops in his study for short conversations and a kiss on the cheek, and a caretaker who answers the phone when he’s busy (“Neuman residence”) and pours him mineral water or wine.

But most of all, he has his books. He takes them off the shelf as if they are old friends and stacks them on a side table. Reading takes his mind off the aches of his body, more so than whatever the doctor prescribes.

Yes, his body aches. His hands shake. It’s funny, when he was 60, he thought he was going to die in his 70s. He figured a human could only endure so much trauma and pain without skimming off a few years. But even after his second coronary bypass surgery at 73, he kept going. Always another birthday. Always another reason to keep living.

He moves to the kitchen for dinner – salad, chicken, peas, rice. He pushes up his sleeves before the meal and says a short prayer over bread. There, on his left forearm, are six numbers in dark ink: 143945. A souvenir from Auschwitz.

***

He was born in 1922 in Zduńska Wola, a Polish town of about 8,000 Jews living alongside 12,000 Poles and ethnic Germans. For the first 17 years of his life, Itsekel, as he was called, grew up as a pious boy studying Torah, Talmud, Midrash and any other Jewish text he could get his hands on. His teacher and mentor was Rabbi Mendel, a former soldier in the German army in World War I, legendary in Zduńska Wola for his wisdom.

The rabbi taught Itsekel about Judaism and life. He once told a Talmudic story, one of a second-century rabbi who stopped in the ruins of Jerusalem to pray. Elijah, the mystical Jewish prophet, met him outside and reprimanded him for praying in ruins. The story was supposed to warn readers to stay away from ruins because they might be unsafe. But Rabbi Mendel taught Itsekel his own interpretation. If you stand at the ruins of your civilization, he said, do not dwell. Your prayer should be short. Be careful, for it is hallowed ground.

Itsekel’s family fled Zduńska Wola when the German army invaded in 1939. They were less than 35 miles away when they turned back — escaping to Russia would be too difficult with eight children, they decided. They returned to a shattered world: broken windows, burned factories, ruined homes. Rabbi Mendel had been arrested and executed for studying Torah under the new Nazi rule.

***

Isaac was sent to his ninth and final concentration camp of the war in Ebensee, Austria, in April 1945, one month before the Americans came. He doesn’t remember much about the liberation. He was dying from starvation and tuberculosis. He weighed about 80 pounds.

He remembers the Americans setting up hospitals for the former prisoners and putting the new prisoners – the Nazi soldiers – in charge of caring for them. Isaac was brought back to health by doctors and nurses who had worn swastikas just a few weeks earlier. It was weird. At one point, the doctors sent him to the hospital psychiatrist, a former German officer, because Isaac’s hands wouldn’t stop shaking. The officer boasted that he had been trained in psychology by a disciple of Sigmund Freud. The Nazi officer, trained by an Austrian Jew. Isaac wasn’t sure if the officer realized the irony.

Some of the nurses assured him they had never hurt a Jew during the war. Someone asked: Did you ever care for Jewish patients? Well, no, they said, the Jewish patients never were brought to them. They only did what they were told.

Twenty years later, as a rabbi in Cedar Rapids, Iowa, Isaac wanted to attend Martin Luther King Jr.’s civil rights march in Selma, Alabama. The board members of his synagogue tried to convince him not to go. They didn’t understand why he should risk his life for black people in the Deep South. Isaac reflected on his Biblical knowledge, his companion since the age of 3. There, in Exodus 12:49, he found words that rang deep inside him, clear as the Ten Commandments: “One law shall be given to you and the stranger who lives among you.”

Didn’t he know what it was like to be treated like a stranger in his own land? Didn’t he know what happened when fear stopped good people from speaking out? He didn’t want to be like the nurses at Ebensee, like the silent, good Germans.

He went to Selma.

***

Sometimes, people ask him: “Where was God?” Where was Isaac’s God between 1941 and 1945, in Junikowo, St. Martin’s, Fuerstenfelde, Auschwitz-Birkenau, Fuenfteichen, Gross-Rosen, Mauthausen, Wels, and Ebensee? What God would give Isaac dreams almost 70 years later about frantically trying to escape from guards and killers? What God would extinguish entire families, generations of memories?

People ask: “Where was God?”

Isaac believes God was in the sparks of holiness that radiated through the darkness, in the people who maintained their humanity in the brutality and misery and stench. There is good and there is evil in the world; that cannot be changed. He believes it is our job–not His–to seek the good and stop the evil.

People ask: “Where was God?”

Isaac asks: “Where was man?”

***

It is said that during the Holocaust, some Jewish prisoners sang this Hebrew text on the way to death camps: “Ani ma’amin, ani ma’amin b’emunah sh’leimah” — “I believe, I believe, with perfect faith.” Sitting on his leather couch, Isaac sings this song in the traditional melody, the one that his congregation at Sinai Temple sings every year on Yom HaShoah, the day of remembrance for the Holocaust.

Isaac knows it is hard for those who were not there to remember it well. He knows that the best way to remember is to listen to the stories of witnesses. Yet so often people only remember the cruelty. Yes, the cruelty must be present in every story, but Isaac wants to warn people: Be careful not to dwell on it. The Holocaust is hallowed ground. It is the ruins of a civilization.

He wants the world to remember it the way he does: Despite the hunger and thirst, brutality and death, ani ma’amin — “I believe.”

In the sparks of holiness.

They light the world even in its darkest days.

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.

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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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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.”

On call and a-callin’

On call and a-callin’

By: Brian Stauffer

(Originally published in The News-Gazette, February 28, 1999)

Author’s Note:

Working on this story, I gained an appreciation for just how incredible the work that those writers who do this professionally — especially in book form, such as Tracy Kidder, Susan Orlean, and John McPhee — is. Their attention to detail, and their ability to weave that detail into cohesive stories amazed [me then] and continues to amaze me. I’m so glad I got the opportunity to take Prof. Harrington’s class and experience on a very small scale the challenges and rewards these writers must face daily

- Brian Stauffer

Jim Meyer slips his black rubber boots over his brown street shoes
and zips up his blue coveralls, which have a DVM … Doctor of Veterinary
Medicine … insignia stitched in white over the left breast pocket. Small
snowflakes zip in front of his face, propelled by a bitter northwest wind.
He grimaces against the zero-degree wind chill. It’s 8:30 Friday morning,
and “Doc” Meyer is making his first farm call of the day.

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