OT: De University program for students who are chronically ill

[Guest guest]

School gives chronically ill students a chanceBy Martha Irvine

September 19, 2009

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 De 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 De'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

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

De'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. "

Royster had

watched her son fade throughout his teen years, like a light slowly

dimming. 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.

Young would sometimes revitalize enough to go back to school, but burnt

out quickly.

He

got his GED and 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, " his mother 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 De's School for New Learning, which is

aimed at adult students whose lives don't fit the traditional college

mold.

While school hadn't worked out, Holaday 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?

She started

coming up with a plan in the fall of 2003. Two years later, the Chronic

Illness Initiative had 50 students and now has more than 200.

For

them, victories often come in small increments: a few pages read, an

online assignment finished and, when they're at their absolute best, a

course completed.

Though he's usually only able to stay

in touch by e-mail, Holaday is part of Reyes' core group of

friends, along with Stallone, Wood and Winding.

The others meet regularly when everyone is well enough and speak at workshops

about their college experience.

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 De — something she never thought

she'd do.

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.

Reality is, they feel like quitting some days, but don't.

They also have help, often from family.

For

Winding, the 35-year-old former Marine who dreams of going to law

school, it is his wife, , who works at the School for New

Learning and watches over him as he tools through the hallways using a

rolling walker to keep steady.

He often has trouble concentrating

and holding thoughts. He records his classes to help him remember. And

looks over his work and helps him with his writing.

Accepting the help can be difficult.

At

age 35, Holaday demands independence wherever possible. But he

also has learned to accept assistance, from a paid helper 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.

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. "

That love of learning was instilled in

Reyes, too, 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.

Still,

Reyes found it difficult to find her place in college, starting at

De in 2001 and, unsure what she wanted to do with her life, later

transferring to a community college.

In late 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. "

For two years, she continued

what she would call a " state of denial, " not ready to accept that it

would seriously interfere with her studies. She transferred from the

community college back to De — 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.

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

had never seemed more distant, until her sister read about the Chronic

Illness Initiative on De's Web site.

Reyes started online

classes in late 2006 and worked 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. Ultimately, she hopes to help

students like herself — perhaps even starting a program like De's

at another university. She has to pace herself.

But 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.

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

http://www.rdmag.com/News/FeedsAP/2009/09/life-sciences-school-gives-chronically\

-ill-students-a-chance/