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Freshman with muscular dystrophy adjusts to college life
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Steve Mellon, Post-GazetteClick photo for larger image
Pittsburgh Post-Gazette
Slideshow: Ryan Ballou discusses the joys and challenges of his first semester at college.
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Settling In
This is the second part of an occasional series on Ryan Ballou's first year of college.
Part One: First day in the dorm is tough for any freshman, including Ryan Ballou
EDINBORO -- Like most college dorms, Scranton Hall at Edinboro University is a pretty noisy place once the sun starts to set, and classes and homework give way to video games, friends and loud music. At 9:30 on a recent Tuesday morning, however, the fluorescent-lit corridor that leads to freshman Ryan Ballou's room is perfectly silent, save for the squeak of Deb Roberts' sandals as she strides toward his door.
This late in the morning, many kids already have headed off to class or parked themselves in the library with a Starbucks latte. Yet Ryan, 19, who was born with Duchenne muscular dystrophy, knew better than to schedule early courses during his first term in college. Dependent on a wheelchair, he can't get himself out of bed without someone's help -- a detail that adds a precious 20 minutes to the daily routine.
This is where Ms. Roberts -- one of 19 regular personal care aides who staff the first floor of Scranton Hall 24/7 -- fits in.
After rapping lightly on his door, she enters the pitch-black room and flips on the light. Ryan, his head barely visible under a navy-blue comforter, groans. But Ms. Roberts, who's been a PC for 10 years, isn't buying it.
"Time to rise and shine," she quietly sing-songs, pulling down his blanket. "Another day, another day closer to the weekend."
As Ryan struggles to wake up, Ms. Roberts pulls him by the arms into a sitting position. "You OK?" she asks, as he reaches for the wheelchair parked at the foot of the bed. Nodding, Ryan slowly swings his legs around to the floor, revealing the overdeveloped calves that characterize the disease. But his face, still dopey with sleep, suggests otherwise.
Like many college kids, Ryan of Ben Avon has turned into a night owl. Most nights after studying, he plays PlayStation and hangs out with friends until way after midnight.
"I didn't fall asleep until 4," he mumbles.
Steve Mellon, Post-GazetteAide Deb Roberts helps a sleepy Ryan Ballou get dressed as part of Ballou's morning routine in his dorm room at Edinboro University.
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After discussing whether he wants long or short socks (it doesn't matter), Ms. Roberts begins dressing her sleepy charge. "Toes good?" she asks, as she pulls his socks on. Another nod.
Once his shoes are slipped on, Ryan takes over. Many kids this age with Duchenne have lost their ability to use their arms and legs. But Ryan, who didn't start using a wheelchair full time until his senior year at Avonworth High School, still has fairly good motor skills. Rolling from side to side, he manages to wiggle the pants up over his hips.
Now comes the hard part.
"You ready?" she asks softly, as Ryan pulls the wheelchair closer and swings apart the footplates.
Placing his knees between hers, she wraps her arms around his waist and then counting -- one, two -- pulls his 190-pound body up to a standing position and pivots him into the chair.
"I was afraid at first the aides might drop me," Ryan admits earlier in the month. "But in some ways they can care for me better than my family because they're trained and deal with it a lot more."
Once seated, she pulls a sweatshirt over his head, gently feeds his arms into the sockets and pulls it down over his T-shirt. Mission completed, Ms. Roberts wishes him a good day and heads off.
"It was so weird," he recalled recently about the first few days of school, when he was worried about how he'd get along with the PCs.
"I guess I was a little shy about being naked in front of them." Yet now, 10 weeks into the semester, he has settled into a comfortable routine. He doesn't even mind the student workers, whom he occasionally sees in class.
Ryan has grown so comfortable with their care that he's even become friends with a few of them. "It's nice because it's kind of like a family."
A growing independence
Despite having Duchenne, a progressive disease in which few of those afflicted survive past age 30, Ryan always knew he'd continue his education past high school. The challenge, he notes, was in finding a school that could accommodate his special needs.
"It's a part of life," he says matter-of-factly. "In order to move on with my life, I have to go to college."
As it turned out, one of the best schools for kids in his situation was virtually in his back yard; just 100 miles from Pittsburgh, Edinboro is ranked among the nation's top 10 universities for its services for students with disabilities. So complete are the state-funded support services, that all Ryan really has to worry about is showing up for class and -- one can dream -- making the dean's list.
Still, it's taking some effort getting used to so much freedom.
In high school, Ryan recalls, he tended to blow stuff off. Here, he needs to be a lot more responsible. Yet it's been tough learning how to balance school with play because "no one here is pushing you to tell you when to work."
Assignments are coming in hot and heavy, he writes in his journal on Sept. 8. It is somewhat overwhelming, and I find myself stressing over just remembering the assignments.
Add one of your meatier majors to the equation -- business -- and it gets tougher still. Almost from the get-go, he's had trouble with accounting; by Sept. 22, the class has turned into a "living hell of statistics and figures." He's starting to think about changing his major.
On a positive note, Ryan says, he's quickly making friends. The first floor of Scranton is reserved for students with mobility issues (even the R.A. is in a wheelchair), so there's almost an instant camaraderie. No one stares or makes ignorant comments like they did in high school. He's become particularly good friends with two kids on the floor: Nevin Grove, an 18-year-old freshman from Williamsport who has cerebral palsy, and Rory Mulhern, a 20-year-old sophomore from West Chester who also has Duchenne.
"We can relate," says Ryan.
A month into it, he's settling in.
I am having great fun with my dorm mates and other students and am starting to enjoy the college student lifestyle, he writes on Oct. 2. Late nights of doing absolutely nothing but hanging out, studying (on occasion) and anything else that strikes my fancy.
It helps that unlike everyone else in the dorm, Ryan can get off campus pretty much whenever he likes, thanks to his customized van. At least twice a week, he drives to a nearby Wal-Mart to pick up snacks and smokes and also regularly takes friends to the movies in Erie. The van also allows him to ease any homesickness; he goes home almost every weekend the first part of the semester. By late October, though, he's looking forward more to staying on campus.
"It's kind of nice to be on my own," he says.
He also likes being able to set his own schedule, particularly when it comes to bedtime. Back home, he has to go to bed when his father does. At Edinboro, he can stay up to 2 or 3 in the morning. (A practice most likely linked to his "addiction" to energy drinks.)
Not that he doesn't miss his family, because he does. But daily phone calls, e-mails and instant messages from his dad and sister are starting to be enough. And besides, he kinda, sorta has a girlfriend, a sweet-faced, able-bodied freshman named Kayte.
Some of the wheelchair-bound students just sit in their rooms, except for class, and look pitiful, notes a journal entry from Oct. 6. My van has given me freedom beyond question.
Figuring out his place
In addition to his new-found freedom, living in a dorm with similarly handicapped people has unexpectedly made Ryan realize he has a lot to be thankful for.
Being surrounded by students with different disabilities, especially those that are more severe than his, makes him realize how fortunate he is, he says. Sure, he gets depressed sometimes that he can't walk. But unlike a lot of Duchenne kids his age, he can still lift his arms and get stuff off the ground and clean himself in the shower. And when his wheelchair was broken last month (the battery cable came unplugged from all the bumping around) he was able to push himself up a ramp in a manual wheelchair. His friend Rory, by contrast, has almost no motor skills.
"Your problems are your problems, but I feel kind of guilty sometimes," he says.
Just how fortunate was made clear a few hours earlier when, on their way home from Wal-Mart, Ryan swung his van by Burger King to pick up dinner. Ryan wastes no time devouring his Whopper once back in his room. But Rory's severe scoliosis makes it physically impossible for him to feed himself unless he is at a table. So Kayte had to hand-feed him the fast food, one bite at a time.
At the same time, Ryan's starting to realize that despite the college's efforts to make life for wheelchair students as easy as possible, it can't force anyone to accept them. True, no one bats an eye when Ryan rolls into his accounting class and positions his wheelchair at the end of a table near the door. (It's the people off campus who tend to stare, especially children.) But truth be told, he still feels like he doesn't quite fit in.
"Sometimes it feels like people don't want to be seen talking to a person who's handicapped," he says. "It's like they think I'm slow or not mentally capable or stupid."
Maybe that explains why few of the able-bodied guys on Scranton's other floors ever wander down, other than to bum a cigarette. Maybe, Ryan guesses, they don't want to be seen with someone who's "sick."
He and his friends understand, of course, why the university needs to segregate all the handicapped kids on the same floor (boys on the left, girls on the right). But Ryan wonders whether grouping them together actually accentuates their differences.
Or as Nevin puts it, "It'd be nice to have a few able-bodied people in the mix."
Then there's the segregation within the disabled population itself, or what Ryan calls "stratification." You'd think their similar circumstances would help build bonds. But the students who can still do things for themselves tend to look down on those who need the care of others, he says. For instance, kids in push chairs feel superior to those who use electric chairs while those with MD might look down on classmates with cerebral palsy.
"I guess the more you can do, the better you feel about yourself," he says.
So far, though, that cynicism hasn't crept into his psyche. He's more worried about the approaching snow season, developing his blossoming romance and -- seriously, Dad! -- bringing up that accounting grade.
Blah, blah, blah!, he writes on Nov. 8. Classes are ruining my usual cheerful demeanor ... Dad is breathing down my neck, and I dread talking to him about things regarding classes. Ah, I just want to sleep all day.
He'll have plenty of time to talk with his father about his grades when he returns home today for Thanksgiving break.
"I do what every other 19-year-old college student does," he says. "Hang out, play video games, slack off, don't do my homework, study on occasion, go to Wal-Mart and eat fast food."
Steve Mellon, Post-GazetteRyan Ballou: "It's kind of nice to be on my own."
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First Published November 22, 2006 12:00 am
