Tom Archdeacon: WSU student a good story, and can write one, too

For Alan Hieber, Saturday morning marked a role reversal from the night before.

Soon after Jason Brosseau crossed the finish line in 2:46.01 to win the Air Force Marathon and had the gold medal draped over his head, Hieber, a Wright State senior and a sports reporter for the student newspaper, The Guardian, maneuvered himself into position to ask a couple of questions.

Friday evening Hieber had been the one wearing the medal, his reward for finishing the accompanying Air Force 5K race that had gone from the Nutter Center, through campus and back again.

When Brosseau — still amped from adrenaline and jubilation — happened to glance beyond the bank of TV and still cameras that surrounded him and spotted Hieber, who was sitting in his motorized wheelchair, he came over, grinned and held out a hand for a high five.

When Hieber didn’t reach up with a reciprocal slap, Brosseau turned to answer a question that had come from behind, then returned to Hieber and offered his raised palm again.

And when the young reporter responded the same as before, Brosseau suddenly realized that he could not raise his arm. And so the winner leaned down and in for a personalized conversation.

Alan has Duchene Muscular Dystrophy (DMD), a genetic disorder characterized by progressive degeneration of all voluntary muscles, weakness and fatigue. Although DMD can be treated by steroids and various heart and respiratory medicines, there is no cure.

Not long ago boys with DMD didn’t survive much beyond their teens. Today, with advances in care, young men living into their early 30s are becoming more common, although the average life expectancy is still estimated to be around 25.

Alan is 21.

“Certainly there are times now where I’m scared,” Alan’s mom, Susan, admitted quietly as she waited for her son to conclude his interviews. “I think he feels that way, too. And I think that’s why he’s willing to share his story with you now.”

And when he does, you quickly realize he is — as Rich, his dad, put it — living life to the fullest.

“We don’t talk about the (down side) that much,” Rich said. “Our general thing is we want Alan to do things and challenge himself and understand he can have a full life. Potentially it could be shorter than other people’s, but then none of us is going to live forever.

“Although there are times he might have to speed things up along the way, there’s no reason he can’t do many of the things other people do.”

And even some things others might not.

Take the Peach Tree Road Race in Atlanta a couple of years back. The event bills itself as the largest 10K in the world, but Rich — an accomplished master’s runner who even does ultra marathons — said the Peach Tree does not take people in wheelchairs who are pushed by others or where the chair is motorized.

“I entered Alan anyway,” Rich said with a shrug and a smile. “I put his name and age down, didn’t tell them he was in a wheelchair and got a (bib) number for him.

“And he did the 10K. Well, to be exact, he did the whole race minus maybe 400 yards.

“We went just beyond the start line and he went out from there. It was far enough out that none of the race officials could tell him to ‘get the hell out’ and then he just kept going. He finished and he got his t-shirt and no one said anything.”

Alan would later admit that wasn’t quite true:

“People on the sidelines were cheering me as I came toward the finish and one guy told me, ‘You’re an inspiration!’ ”

Family of runners

DMD initially may weaken the pelvis and legs and then spread to the arms, legs and neck. In later stages it can lead to heart and respiratory problems.

Alan’s uncles — his mom’s brothers, Michael and David Robenal — had DMD. Back then there wasn’t as much known about the disorder or treatment and the prognosis was dimmer.

Michael died in 1980 when he was 23 and David, who in 2001 was in the latter stages, died in an auto accident. He was 29.

“It’s an X-chromosome-linked disease and women are the carriers of it,” Susan said. “You can be healthy but still pass it on.”

So the Hiebers’ oldest child — Elisabeth, 24, who is now working toward her master’s degree at the University of Cincinnati — doesn’t have it, but Alan, a “surprise pregnancy,” Susan said, does.

For several years now he’s been treated at Cincinnati Children’s Hospital Medical Center, which, the Hiebers said, provides some of the best DMD care in the nation.

Even so, the disease is ongoing.

Alan said he could walk until he was about 10. Now he gets around in a wheelchair. His dad helps him get out of bed in the morning and into the chair.

During the day he often wears splints on his legs to keep them straight and at night he sleeps with them on his arms for the same reason. People with DMD often break bones and Alan has had a few fractures. Among other things, he’s also had spinal surgery.

And he takes lots of pills.

“Kind of the way a person over 65 takes a lot of pills,” Rich said with a smile.

The irony is that he was born into a family of runners.

While Rich is now the most accomplished, Susan, a Wayne High School English teacher, has done everything from 5 and 10Ks to marathons, and back in the mid-1980s she was on the first women’s cross country team at Wright State.

And Elisabeth ran track and cross country for three years at Fairborn High.

While Alan likes sports, especially running, it was while he was at Fairborn High that he first got involved with the school newspaper.

Once it was time for college he said he chose Wright State because it was close and “is probably one of the best in the country for being wheelchair accessible.”

Over the years the family has readjusted to deal with Alan’s needs. Rich, who used to work as an engineer for Boeing when the family lived in Georgia, now brings his son to school every day, helps him push the buttons for the elevators, gets his food in the cafeteria and does whatever else is needed.

When Alan goes to class, Rich either reads in the library or goes for a run — sometimes both.

The Hiebers have made sure not to interfere with the relationship between Alan and his professors. They want him to fend on his own as much as he can.

Even though he gets fatigued easily, Alan has shown some of his mom’s stubbornness — her self-description — and has refused to give into his circumstances. That’s enabled him to maintain a 3.5 grade-point average.

The one problem he had in his first couple of years at WSU was his shyness. It was compounded by the fact that the DMD makes his voice soft and so, fearing he wouldn’t be heard, he didn’t say anything.

Then two years ago he joined the staff of The Guardian. Initially, he was a news reporter and then he switched to sports.

“The good thing about joining The Guardian was that it forced me to overcome some of that shyness,” he said. “If I wanted to find something out, I had to ask the questions.”

Along the way he enrolled in a class taught by WSU journalism professor and former Dayton Daily News editor Ray Marcano, who was able to coax him and challenge him and prod him to new heights.

In the process, Alan has had scores of Guardian bylines (in the paper’s current edition he has a story on WSU’s soccer-playing sisters, Natalie and Kelsey Sedlock) and three stories in the Dayton Daily News as well.

And then there was his interview with Super Bowl XLIX star Malcolm Butler, the New England Patriots cornerback whose goal-line interception with 20 seconds left in last February’s championship game sealed the 24-20 victory over Seattle.

“Ray told me that Malcolm Butler’s last interception had been in college (at West Alabama) against Central State,” he said. “He said, ‘Alan, why don’t you try writing on that?’

“So I sent an email to the Patriots and they told me about the press conference they were having over the phone the next day. I got on with all these media people from around the country and I asked two questions. I found out about the Central State interception.”

Then he smiled and admitted his shyness had kicked in:

“I wanted to ask him why he didn’t tell Tom Brady to give him the truck that he (Brady) had won for being the Super Bowl MVP.”

‘Pretty astounding’

Alan admits he’d rather be playing sports than writing about them.

He regularly watches ESPN with his dad. His bedroom is decorated with Fathead likenesses of LeBron James and Jeff Gordon and, of course, there’s also the collection of his race bibs on display.

“By being a sportswriter though, I can still have a connection to sports and athletes,” he said.

And when he does enter the 5Ks — or write about running as he did with his coverage of the marathon on Saturday — he feels a connection with his running family.

“Sometimes I think I want to do as many things as I still can right now,” he admitted. “But then when I think about it, I realize I already have done some great things.

“I wanted to be a sportswriter and I am one. And just going to college is an accomplishment. And I think I’m the only one doing 5K races in a power chair.”

When he’s in the chair, he must be sure to stay sitting straight. If he gets jolted a little to one side he might not be able to right himself again. And yet Friday, even with the crowded field and what he said was “a pretty bumpy course,” he finished in 31 minutes.

“It’s not dangerously fast,” he grinned. “But it feels fast.”

Susan, who is coming back from an injury, finished three minutes ahead of her son Friday night.

“He said when he runs it makes him feel free from the wheelchair, free from everything,” she said with a bit of emotion welling up in her voice. “He feels the wind, the movement. And afterward last night he said, ‘Mom, I’m tired, but it’s a good tired.’ ”

It’s efforts like that that make his sister Elisabeth call him her “motivation” in life.

“It’s pretty astounding to me that he can do so much,” she said. “He doesn’t let life stop him. He is a real inspiration.”

With a big-sister laugh, she also admitted he can be “hilarious.”

“You probably heard he really gets into watching sports?” she said, the glee already creeping into her voice.

“Well, he got so mad watching an Ohio State basketball game a few years ago that he somehow hit the joystick on his chair and that thing shot forward with him in it and slammed right into the piano. It scared our dogs out of the room.”

His dad did say he might have to speed things up along the way.

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