School gives chronically ill students a chance

[September 21, 2009]  CHICAGO (AP) -- Cecilia Reyes 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."

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Royster had watched her son fade throughout his teen years, like a light slowly dimming. Patrick Holaday had always been a good student. But after his illness hit in 1986 at the age 12, he often just lay in bed in their suburban Chicago home, sleeping hour after hour.

His mother sought help and advocated for her son as best she could. But no one seemed to know what was wrong and, even worse, his mother says, they felt judged -- by doctors, by teachers, by other parents and even members of their own family.

Here she was, an accomplished woman, a college professor with a law degree, a master's and a Ph.D. She was used to digging for answers and finding solutions.

But this time, as a mother grasping for answers, she felt helpless. She desperately wanted her son to get better, wanted him to be able to participate in the process of learning that he loved so much.

"There has to be something I can do," she thought. "I have to fix this."

Royster moved with her son to Arizona, without her husband and daughter, in an attempt to deal with her son's severe allergies. There, he was diagnosed with severe chronic fatigue syndrome.

They tried special diets to eliminate food allergens and ridded the house of any other potential toxins.

Some of it helped. Young Patrick would sometimes revitalize enough to go back to school. But he'd get involved with the track team and his studies and then burn out, time after time. Eventually, he dropped out of school and got his GED.

He tried a few college classes, but eventually rebelled against that and against his family and his illness. He tried to make it on his own in California.

"If people didn't blame him, they blamed me," Royster says. "So I gave up, and he just quit trying to go to school."

There were cycles of denial and anger -- and finally acceptance, her son says. Realizing he needed at least some help from his family, he moved back to the Chicago area, where the whole saga had begun and where his mother was now teaching at DePaul's School for New Learning, a branch of DePaul aimed at adult students whose lives don't fit the traditional college mold.

While school hadn't worked out, Patrick never gave up on learning. He read on his own, taught himself what he could.

Royster knew there were many others like him.

And then it hit her: What if the School for New Learning offered a program for students like her son -- one that would allow them to finish classes at their own pace, no matter how sick they were?

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."

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Reyes understands about that love of learning, and the struggle.

The importance of education were instilled in her from a young age by her parents -- a plumber and a Chicago city worker -- and by her grandmother, an immigrant from northern Mexico who never got a college degree despite her lifelong passion for reading and learning.

Reyes' quest for a degree was never easy. At first, she struggled to find her place in college.

She started at DePaul in 2001, but unsure of what she wanted to do with her life, transferred to a community college. Then in the fall of 2003, she started feeling a numbness on her left side. Her foot would go to sleep; she started stumbling. People thought she was drunk.

Doctors told her she had MS, a disease in which the body's immune system eats away at nerves' protective covering.

"I really didn't know the magnitude of what was happening to me," says Reyes, a slight young woman with earnest brown eyes. "I just wanted them to fix it and make me better."

She continued for two years in what she would call a "state of denial," not ready to accept the limitations of her illness or the fact that it would seriously interfere with her studies. She transferred from the community college back to DePaul -- more mature, she says, and more certain that was where she wanted to be.

But around Christmas 2005, her illness hit hard. She couldn't get out of bed, couldn't see well, couldn't function. She had congestive heart failure, a possible side-effect of one of her medications, and was in and out of the hospital. She had to have help even getting to the bathroom.

"It really hit me then," says Reyes. She had to drop out of school for nearly a year. She had chemotherapy treatments, tried other new medications and spent months in physical therapy, learning to walk again.

Her dream of a psychology degree, and a career as a social worker, had never seemed more distant. Then her sister read about the Chronic Illness Initiative on DePaul's Web site.

Reyes started online classes in late 2006. As her health improved, she worked her way up to a few classes on campus, despite continued trouble with balance and vision.

Like a lot of students in the program, she coped partly by getting her assignments early and working ahead. But if she did fall behind, her professors gave her more time.

Now, she's on a new medication that is helping her more than any other, and she's able to volunteer for two organizations that help people with disabilities.

She handed in her final paper in August and began interviewing for jobs; she also is considering applying to graduate schools to study social work. She has to pace herself. Ultimately, she hopes to get a job helping students like herself -- perhaps even starting a program like DePaul's at another university.

In a strange way, she says, her illness has helped her -- by making her more appreciative of the chance to get an education, and by showing her what she can do.

"I will never give up," she says.

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On the Net:

DePaul's School for New Learning: http://www.snl.depaul.edu/

[Associated Press; By MARTHA IRVINE]

Martha Irvine is an AP national writer. She can be reached at [e-mail] or http://twitter.com/irvineap.

Copyright 2009 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.