Stephanie Zaia is like any other student at the University. She has goals, dreams and ambitions that, with hard work, will eventually reach fruition.

Arriving on campus with a debilitating neurological disorder called dystonia is more of a technicality than a hindrance as far as she’s concerned.

The condition causes her muscles to spasm and contract involuntarily. More than 300,000 people in the United States have it. Zaia, 20, is the only known University student who has dystonia. What is more perplexing is that she was born without any medical issues and doctors can’t explain how or why Zaia ended up with it.

Her first 13 years of life were those of a physically active girl growing up in her hometown of Medfield, Mass. But in the past seven years, dystonia set in, resulting in three major surgeries and numerous medical emergencies, which have restricted her ability to control much of her body. She uses a power chair to get around campus as a result.

What may surprise some people is that Zaia never complains about the abrupt physical changes that have severely restricted her motor skills. Many may consider Zaia heroic and courageous because she has been through so much. But she feels she’s quite ordinary.

Though the road through which Zaia has traveled to matriculate at the University has been anything but an ordinary ride.

It all began at the pool

Zaia was an avid swimmer during her middle school years. Like many young athletes, she had aspirations of going pro. But those hopes began to fade in her eighth grade year. Home videos from several of her swim meets show Zaia struggling for breath and coaches coming to her aid after finishing a race. At first, she didn’t think much of it.

“It was happening after I exerted myself really physically in the water after a meet, so at first I thought, ‘Whatever. I’m dehydrated, no big deal,'” she said. “‘I’ll be fine in a couple of minutes.'”

But her issues were not limited to the pool. She had trouble walking around the house, stumbling into walls and tripping over herself. Zaia did it so often that her father, John Zaia, assumed she was being too careless.

“Steph, you have to be careful,” he would tell her. “Don’t go walking into things and falling on the ground. You have to be careful.”

He had no idea that “Steph’s” struggles had nothing to do with her being careless. And his daughter’s incidents at the pool were “a big deal.”

It was dystonia setting in.

Over the course of a few years, the condition began limiting her ability to walk on her own, so she began using leg braces and arm crutches interchangeably. Her days as a competitive swimmer ended soon after.

But her problems worsened. Zaia’s back started arching, preventing her from lying flat; thus, making it even harder for her to walk with braces and crutches. Her feet began turning inward.

Worst of all, no one knew why this was happening to Zaia. Doctors’ visits were particularly difficult for her and her parents. It was a frustrating experience for them to visit one specialist after another who could give them no diagnosis.

“When they didn’t know, they just referred you to somebody else, and then you go there, and they’d refer you to somebody else,” said Zaia’s mother, Diane, about their frequent doctors’ visits. “It was pretty discouraging because we knew something was wrong, and they just couldn’t give us an answer.”

In her junior year of high school in 2005, Zaia had her first major surgery: a feeding tube was placed into her intestine because she started vomiting everything she ate. Zaia feels it’s connected to the dystonia, but she admits that doctors don’t know why she can’t hold her food. Zaia had a second surgery in April 2007, which helps to prevent her muscles from tightening to the point where she can’t breathe. Through all of this, she still managed to make it to her senior prom and arrived at the University for her freshman year in fall 2007.

Thinking the worst was behind her, Zaia moved into Snyder Hall ready for what she hoped would be an exciting first year.

It was a nightmare.

While in her dorm room, she slipped into another dystonic storm that contorted her body in uncontrollable positions, causing incredible pain.

Emergency medics eventually drove her to Northwestern Memorial Hospital in Chicago where Zaia recovered for a week and underwent intensive therapy at the Rehabilitation Institute of Chicago for three months.

Despite these setbacks, she returned to campus last fall. When Zaia reflects on the rollercoaster of events she’s been through, she brushes it off.

“There are other people worse off than I am,” she said.

It is this ordinary yet mature attitude that has sustained Zaia’s resolve to control her own future. And it is through resources at the University that she has been able to do so.

At Beckwith, Zaia strengthens her independence

Zaia lives in Beckwith Residence Hall, a dormitory specifically designed to help students work through their disabilities and live as independently as possible once they graduate. Zaia and other Beckwith residents go through what is called a Transitional Disability Management Plan (TDMP). It’s an individualized program designed to improve each resident’s management of his or her disability-related needs.

The design of the building itself also helps the residents live independently. The widths of Zaia’s entrances in her dorm room, for example, are wider than average so she can maneuver her power chair around as easily as possible — barring the notebooks, homecare products and other things that always seem to be scattered out of place on the floor.

The facility, located on Second and John streets, houses 21 students with various physical disabilities and six live-in personal assistants to work with them. Many of the residents have medical conditions that restrict their ability to do certain household tasks on their own, so 24-hour staff is available just in case they need assistance.

Though Beckwith is designed to help ensure that students like Zaia have a full and successful college experience, the goal is to eventually prepare them to live as best they can without the safety net the facility provides.

Katherine Johnson, associate director at Beckwith, said she and her staff focus on what their residents can do rather than what they can’t do.

“They will always have the disability but they have abilities, so we focus on that,” Johnson said. “What can they do? We push for their independent management of their disability. They don’t have to be dependent on parents and family. They can live independent lives.”

Zaia has several personal assistants who help her get out of bed each morning and assist her back into bed in the evening.

Dystonia has not paralyzed Zaia. She can feel every part of her body and can do a great deal for herself. She simply needs more time to do it.

An e-mail that may take someone 10 minutes to type may take 30 minutes of pecking for her. She doesn’t take her own notes in class, but she has a reliable classmate to take them for her. When final or midterm exams require essays, she goes to the DRES building where she has more time to work on them.

Paige Lindahl-Lewis, disability specialist at Beckwith, is responsible for helping residents manage their disabilities. Each resident’s progress varies depending on a number of factors, such as the severity of their condition. Personality also plays a part.

Lindahl-Lewis describes Zaia as upbeat and someone who she feels is maximizing her Beckwith experience.

“She’s embracing what we’re working on here with her,” Lindahl-Lewis said. “So working in terms (of) the disability management plan, she’s in a good place. I’m not worried about her from that perspective.”

Yet, her greatest challenge may not be herself, but rather others, who take one look at her chair and assume she can’t do or speak for herself.

While overcoming dystonia, Zaia repels stereotypes

Zaia remembers going to a mobile phone store with one of her personal assistants one afternoon. Immediately, the sales representative began speaking to her assistant, ignoring her completely.

“What kind of phone does she need?” Zaia said she remembers the clerk asking her personal assistant.

“I’m sitting right there, like ‘I’m the one who needs the cell phone, not her,'” she remembers thinking to herself. “That kind of stuff I notice very much.”

But these are not common cases. She says most people on campus treat her well and are quite helpful, whether that means opening a door for her or giving her an extra push through the snow if she’s stuck.

But there are times when Zaia reacts to the occasional people who can’t seem to keep their eyes off of her.

“Sometimes I give them the evil look, then other times I’m like, ‘I actually go to college, thanks.'”

When Zaia’s not giving someone “the evil look,” she’s cheering on the Illini football team at Memorial Stadium with thousands of other screaming fans.

She goes out dancing at the campus bars with other students, both those in wheelchairs and those not. And how does she dance in that power wheelchair, you might wonder?

“I don’t,” she said, giggling. “It’s kind of whatever we feel like doing, whatever body parts (I) feel like moving. Or if it’s just (me and my other friends in wheelchairs), we’ll do something stupid and be like ‘We’re doing drums,'” she said as she beats her arms into the air, imitating a drum roll.

Zaia can’t drink alcohol because it won’t react well with the medication she uses to treat her dystonia. She’s underage, so she can’t buy a martini for herself even if she wanted. Then out of the blue, she jabs herself with some mildly self-deprecating humor.

“First of all, I have enough trouble walking as it is, so think about what drinking does,” she said, laughing.

A future helping others

Zaia hasn’t declared a major, but she definitely knows what she wants to do.

The nursing profession is appealing to her because of her fond memories with the nurses who helped her recover while she was hospitalized. She’s not naïve about the challenges that lie ahead of her, though. Her body doesn’t always move like she would like it to, and she can barely hold a pencil.

But just because she may not be able to carry out the duties of a nurse now doesn’t discourage her from striving to practice the profession in the future.

“In a year, I could be up walking, and no one would ever know that I had anything wrong with me,” she said. “I don’t know what will happen in a year or two, so why sell myself short right now?”

And perhaps, neither should anyone else.