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Former YSU recruit Kaitlin Rohrs battles rare disease head on
Tuesday 3 January 2012
Former YSU recruit Kaitlin Rohrs battles rare disease head on
Maybe the best place to start this story is at a table outside a gym.
It's almost 4:15 p.m. on Dec. 6 and a tall redhead named Kaitlin Rohrs is sitting just outside Youngstown State's Beeghly Center. In an hour, the YSU women's basketball team — her team, once — will play Bowling Green. Her roommate of three years, Brandi Brown, will score a team-best 15 points. The Penguins will trail by just one with seven minutes left against a team that beat them by 46 a year earlier, then falter down the stretch.
Rohrs won't see any of this. She'll be downstairs by then, working with the trainers before that night's men's basketball game, putting in a few of the 20 hours she needs to maintain her athletic scholarship. In fact, she admits she's missed every women's game this season, then quickly adds that she's not trying to avoid anything.
She might even believe it.
Sometimes a career ends after high school, with a coach (or a tape measure) telling you it's time to think about intramurals. Sometimes it ends with a college degree and sometimes it ends with a press conference and sometimes it ends with a 22-year-old intern telling you the coach wants to see you, and oh-by-the-way, can you bring your playbook?
And sometimes it ends inside a hospital room with doctors telling one of the most restless athletes you'll ever meet that there's a reason why she's been feeling so tired all the time. And they start using phrases like "chronic active Epstein Barr virus" and "chronic fatigue syndrome" and start explaining that her impulse to solve every problem by working through it was very likely the reason why this problem will never go away.
And sometimes, when that woman's father racks his brain trying to think of the right thing to say, he instead blurts out this: "Sometimes, you have to realize your dream is over."
And all she can think is, But what if my dream was just beginning?
Misconception No. 1: CFS sufferers are lazy.
"It's actually the exact opposite," Rohrs said. "The people who end up getting it are usually hard-working and go non-stop. That's the problem I always had.
"I don't know how to relax and kick back."
The problems began at the end of Rohrs' senior year at Liberty Center. A three-sport athlete, Rohrs finished her volleyball career ranked No. 7 all-time in Ohio in kills, scored more than 1,000 points in basketball (and grabbed more than 600 rebounds) and spent countless hours in her dad's car, listening to Led Zeppelin and AC/DC and Pink Floyd ("I feel bad for kids who grew up listening to all that crap they had in the 1990s," her father, Kurt, said) as they traveled the roads of northwest Ohio, going from this practice to that game to this tournament and back again.
At 6-foot-1 and more than 180 pounds, she developed into a strong and skilled post player capable of scrapping down low, then stepping outside to shoot the 3.
"Kaitlin was a tremendous student-athlete in high school and she would have made an impact right away on the court in college," said former YSU coach Cindy Martin, who recruited her. "We saw right away that she was a first-class person."
Problem was, her pace on and off the court — Rohrs graduated as class valedictorian — took its toll, forcing her to play through nagging injuries and illnesses. Her senior track season, she developed what she thought were shin splints. She eventually had to run relays because she could no longer explode out of the blocks, possibly because she was still dealing with a leftover hamstring injury from basketball season.
In hindsight, her body was telling her to stop, which was like telling an eye not to blink. Rohrs comes from a family of overachievers. Her mom, Karen, worked full-time, raised three kids and earned more degrees than a thermometer. Her father skipped college and became a farmer, but only after graduating as his school's valedictorian. Rohrs was the third of three daughters and seems to have decided, "Well, that's the last time I'm finishing last."
So, Rohrs pushed through it. Things got worse. Two weeks into her summer basketball workouts, her legs locked up completely. She took a month off, enrolled at YSU and, in her second open gym, tore her MCL after colliding with a teammate. She walked (well, hobbled) to all her classes the next day, then finally saw an athletic trainer. She didn't find out the extent of the damage until a week later.
Rohrs threw herself into rehab, hoping to be ready for the start of the season. While warming up for YSU's first game, her legs again locked up.
She'd later look back on that moment and realize it was the closest she would ever come to playing in a college game.
Hoping to be back for the start of conference play, Rohrs started lifting four days a week at 5:30 a.m. But her legs wouldn't cooperate and the coaching staff opted to redshirt her.
She kept the same workout schedule. By January, she was feeling exhausted almost all the time. She couldn't sleep. Her throat felt sore.
She pushed through it. Things got worse.
Karen started to worry. She urged her daughter to go to the hospital. Rohrs put it off. She got worse. Finally, one night, her mom made the three hour and 15 minute drive to Youngstown and took her to an urgent care facility. The doctors diagnosed her with tonsillitis, gave her antibiotics and told her to rest. Instead, she went to all of her classes the next day while her mom read books in the CVS parking lot. After several days of pleading, Rohrs finally agreed to come home and visit another urgent care center.
They diagnosed her with mono and gave her a steroid shot. It helped. A month later, she resumed everything. Her leg injuries returned. At the end of May, doctors told her she had "exercise-induced exertional compartment syndrome." Doctors recommended rest.
She pushed through it. Things got worse.
"Through all her struggles, she was really strong," said Brown. "I remember praying with her a lot and just trying to be encouraging. She's always been someone who tried to push through things and not give up anything."
But as the weeks dragged on, Rohrs couldn’t deny the obvious — something was very, very wrong. She started pulling herself out of open gyms because she couldn’t breath. Workouts that would have been easy in high school were brutal now. She lost weight. Sleep left her feeling worse. Finally, her sports medicine doctor recommended she give up basketball.
He might as well have told her to change her name.
“It was like a surgeon losing his hands or a pilot losing his eyesight,” Karen said.
In October, 2010, Rohrs was diagnosed with chronic active Epstein Barr virus — aka chronic fatigue syndrome, a rare (and so far incurable) disorder marked by fatigue, muscle and joint pain, sore throat and unsatisfying sleep.
In mid-March 2011, YSU determined she had suffered a career-ending injury, allowing her to keep her scholarship but putting an official end to the dream she’d carried with her since she was a little girl.
It was time to find a new one.
Misconception No. 2: CFS sufferers are sad and angry.
“I may not look all bright and cheery all the time but people don’t understand how hard it is to get through a day,” she said. “I wonder, ‘Am I going to stay awake in my classes? Am I going to be too burnt out to study? And looking into my future, am I always going to be this fatigued?”
Over and over, Rohrs kept hearing there is no cure for CFS and kept thinking, “Yet. There’s no cure yet.”
A strong Christian, she gave her testimony at her church, which opened up opportunities to speak at other churches. She emailed reporters, sharing her story to raise awareness of the dangers of overtraining. She created blue wristbands that read “CEBV & CFS AWARENESS” on the outside and “I WILL PREVAIL #31” (her jersey number) on the inside, selling them for $2 each and donating more than $650 to the Morton Fund of CFS research at the University of Miami (Fla.).
In short, she did what she always did. She pushed through it.
“When I go through my rough times when I feel bad, I’ll have people say, ‘Why do you keep bringing awareness for something that makes you upset?’” Rohrs said. “I say, ‘I think it helps me to talk about it.’
Misconception No. 3: It affects everyone the same way, every day.
Laura Hillenbrand, the author of the bestselling books “Seabiscuit” and “Unbroken,” contracted CFS in college and almost never leaves her apartment. But on a typical day, Rohrs seems pretty typical. She doesn’t speak slowly or slur her words or move lethargically or give off any sign that there’s anything wrong, other than maybe seeming like she’s had a tough day.
But if she pushes herself too far — either through stress or exercise or diet or anything else that can trigger a flareup — she feels the effects for weeks.
“I’ll sleep for 15-16-17 hours and just not wake up,” she said. “Naps make me feel worse. I sometimes break out in hives.
“When people ask me what it feels like, I tell them it feels like having mono every day of your life.”
Back to the table outside the gym. A few feet away there’s a sign listing all the YSU athletes with a GPA of 3.0 or better for the spring semester. The ones with 4.0 GPAs are in capital letters. Just over her shoulder are the words KAITLIN ROHRS.
Rohrs got a 4.0 in the fall semester, too. And last year’s fall semester. And the one before that. The last time she didn’t get a 4.0? Fifth grade, when she got her one and only B.
Rohrs’ scholarship doesn’t count against YSU. Her GPA does. There are worse deals.
“She’s just a great person,” said YSU’s current women’s coach, Bob Boldon, who has never seen her so much as dribble a basketball but knows he missed out on coaching a terrific player. “She did everything she could to come back.”
Rohrs still tries to exercise every day — “Sometimes my legs ache really bad and it feels like I’m being stabbed with knives,” she said — and her mom still pleads with her to take it easy, but to keep her scholarship, she has to take at least 12 credit hours (she took 16 during the fall semester; she’ll take 15 in the spring) and work 20 hours a week in the athletic department.
When they gave her a list of options, she chose the training room.
“The one thing I can be is a positive influence on injured athletes,” she said. “I want to give them what I wish I could have had.”
She’s on track to graduate in spring, 2013 with a business marketing management degree and plans to either attend grad school or try to get a job with either a college or a pro sports team. And if the Cleveland Cavaliers want to hire her to help with marketing and promotions? Well, she’d probably take the call.
“Maybe her dream of being a college basketball player is over,” Karen said, “but she still has a relationship with basketball.”
If this were a movie, this would be the moment when we tell you that they’re close to finding a cure, that there’s an experimental program in Paraguay that’s having great success with lab rats.
But this isn’t a movie. It’s a life. And Rohrs will wake up Christmas morning feeling the same way she does every morning. But just because this story may not end happily ever after doesn’t mean it won’t end happily.
“When it comes down to it, you can’t control what happens to you but you can control how you react,” she said. “Instead of being miserable and asking, ‘Why me?’ Well, why not me?
“Yeah, this might not be the ending I wanted, but when one door closes, another one opens.”
When Rohrs walked onto YSU’s campus 21/2 years ago, she wanted to leave her mark.
Funny thing. Who knew it would be in something other than basketball?
The above originally appeared here.
And here's a video of an interview with Kaitlin from July last year:
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