Chicago university designs specialized program for students with chronic illnesses

From the intro to The AP story:

CHICAGO — Cecilia Reyes (pictured) stepped onto the auditorium stage, a bit unsteadily. Her legs were tired. She was so nervous, she hardly smiled.

She carried with her all the months spent in the hospital or holed up in her parents' Chicago bungalow, an intravenous line hooked into her arm as she tried to do her college work.

Now this 26-year-old woman with multiple sclerosis was about to take a careful but determined walk across a stage to receive her diploma, albeit four years later than she'd planned. Her parents, grandmother and siblings watched from the balcony, bracing themselves. Reyes wanted no help — no walker, no arm to hold.

"This time," she said, "I wanted to be like everybody else."

And this time, she was.

In another era, or even at another university, the illness that afflicts Reyes might have prevented her from taking this walk across the stage. Faced with the rigors of college, chronically ill students often end up having to take incompletes when they get sick, forfeit tuition and drop out. Others never even enroll.

But DePaul University has responded to the needs of Reyes and others like her with a program designed to help these students — the only one of its kind, according to school officials.

Through DePaul's School for New Learning, these students can take courses in the classroom or online. They also can take time off, even abruptly, when the symptoms of their illnesses hit, and finish coursework later with no penalty or tuition loss.

Reyes was just the 16th student to graduate from the program, and the first among the classmates who'd become some of her closest friends. She knew this slow walk across the stage was for them, as well.

It was for Teresa Stallone, her "student buddy" who returned to college years after health problems, and the stigma surrounding them, led her to drop out of high school.
It was for Lacey Wood, who anxiously awaits her own graduation so she can get a job to help her parents, who lost their California home because of huge medical debt they took on after Wood underwent heart and kidney transplants.

It was for Derrick Winding, a former Marine who has bipolar disorder, as well as MS; he promised his mother he'd go to college if she let him join the military.

But Cecilia Reyes' moment on the stage was also a triumph for a woman who had a very personal stake in the program's success — a woman who watched her intelligent son struggle with a mysterious ailment that came and went and threatened to derail his life. It was she who started DePaul's Chronic Illness Initiative four years ago.

This initiative, says Lynn Royster, tells these students that the university believes that they are truly ill, that they are not making excuses. And one more thing: "We think you can succeed."

In the fall of 2003, she persuaded her bosses to give her 10 hours a week to come up with a plan. Two years later, the Chronic Illness Initiative had 50 students. Now it has more than 200.

This has been a work in progress, to say the least.

Many students say they've felt like they've had to educate their professors about chronic illnesses to get them to really understand what it's like to have one — how they often work frantically to get work done before the next round of symptoms hit; how those professors often only encounter them on their "good days," and so have little idea how sick they really are.

The program has not made college easy for Royster's son and others, but it has made it possible. Victories come in small increments: a few pages read, an online assignment finished and, when they're at their absolute best, a course completed.

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Patrick Holaday is part of Reyes' core group of friends, along with Stallone, Wood and Winding. Because his illness is among the more debilitating, he most often stays in contact by e-mail.

The others are more often able to be active ambassadors for the program. They speak at workshops about their college experience and meet regularly as a group when everyone is well enough.

Wood, a 20-year-old from California, is the youngest of the group and probably in the best health. Having missed a lot of high school after her kidney transplant, though, she considers the program her "safety net," should anything go wrong.

Stallone, whose health challenges include epilepsy, connective tissue disease and severe food allergies, calls it "our little community."

"I'd never met people like this. You don't have to explain yourself," she says. At age 33, she is completing her second year at DePaul — something she never thought she'd do.

"I was one of the biggest anti-school people you'd ever meet, probably because I was never believed before. I was labeled as lazy — that I didn't care," she says. She dropped out of high school her junior year and later got her GED.

"I didn't understand what was going on myself," she says of her illnesses, "and people were making fun of me on top of it."

In Reyes, her student buddy, she's found a friend and confidante. Walking around campus, they joke about who has the worst balance — but each also makes sure the other doesn't fall. They exchange encouraging notes. And they vent.

"I am drained," Stallone, who also wants to be a social worker, wrote in one e-mail to Reyes last winter. "But I will be damned if I will allow my health or anything else to interfere with my passion and education."

Neither wants to be depicted as the brave, stoic student who perseveres against all odds and never complains. Reality is, they feel like quitting some days, but don't.

They also have help, often from family.

Stallone's mother, whom she jokingly calls her "roommate," drives her everywhere. Reyes lives in an apartment in her parents' basement and also often relies on them for meals and transportation to doctor appointments and school.

For Winding, the 35-year-old former Marine who dreams of going to law school, it is his wife, Shannon, who works at the School for New Learning and keeps an eye on him as he tools through the hallways using a rolling walker to keep steady.

Because of his bipolar disorder and MS, he often has trouble concentrating and holding thoughts. He records his classes to help him remember. And Shannon looks over his work and helps him with his writing.

Is he worried about how he'd handle law school, if he gets in?

"Hopefully, with the Lord's help, I will be able to do it," he says.

His wife isn't so sure. "I'm worried," she whispers.

Accepting the help from family, from anyone, can be difficult.

At age 35, Patrick Holaday craves independence and demands it wherever possible. But he also has learned to accept assistance, from a paid assistant who runs errands and makes meals when he can't — and from his mother, who lives in an apartment across the street from his.

"I'm a person with a disability. I'm not less of a person because of that. I can DO less because of it, but coming to that acknowledgment was painful," Holaday says.

In many ways, he has become a student of his illness, keeping up with the latest work by researchers who are trying to better understand it. Some people with his condition have gotten help from experimental drugs or drugs that help them sleep. But for him and many others, the illness continues to come and go without warning.

He usually remains at home, sometimes in bed with the shades pulled and a pillow over his head because of extreme sensitivity to light and sound. The energy he must exert, even for a simple visit to the doctor, can set him back a month.

On his worst days, his mother sometimes sits and reads to him.

Sadly, Holaday says, some people have given up on him. "But my mom never gives up on me."

As proud as he is of his mother's program, he knows all too well there are no guarantees that he will get a degree, let alone a job.

"There can be a sense of limbo," Holaday says, sitting on a reclining leather chair in his apartment, surrounded by a computer and trays full of books. "But for me, it has to be about the love of learning, not the credential."