Striving for Normalcy

Published: June 11, 2005  |  Source:  | Spinal Cord Injury:

061205health1Rebecca Wylie has learned how to live what she calls a normal collegiate life despite an illness that has left her paralyzed

Every morning, Rebecca Wylie, 20, gets dressed, brushes her teeth and eats breakfast. A junior graphic design major, she goes to class, hangs out with her friends and downloads everything she can find by heartthrob John Mayer, just like hordes of other MU students.

But life requires something more of Rebecca.

A personal aide dresses and feeds Rebecca and brushes her teeth. She uses a motorized wheelchair to get to classes. A 12-inch mouth stick with a charcoal pencil attached allows her to draw.

“My whole life has been trying to find some normal balance or real reality because there are certain days that I feel like I’m living in a dream and going to wake up and walk again,” Rebecca said.

Rebecca suffers from transverse myelitis, a post-viral infection that damages the spinal cord. The infection that has paralyzed her from the neck down began attacking her body in the early afternoon of Aug. 2, 1992, at a pool party.

Driving home in the Chicago suburb of Deerfield, Ill., Rebecca began complaining of neck pain and a tingling sensation throughout her body. Her parents, Matt and Christie Wylie, thought it was a pulled muscle.

When the pain got worse, Matt Wylie took Rebecca to Highland Park Hospital. Doctors administered steroids in an attempt to stop what they diagnosed as swelling in her spinal cord.

The damage was done. In 12 hours, Rebecca lost the ability to walk and feel anything below her neck.

Rebecca was soon transferred to Lutheran General Hospital, which was better equipped to treat children. Doctors at this hospital wrongly diagnosed her disease three times before realizing the cause of her sudden decline, Christie Wylie said.

When they diagnosed Rebecca’s disease as transverse myelitis, the Lutheran General doctors offered a grim prognosis: Matt and Christie Wylie’s oldest child would never breathe on her own again.

White blood cells began attacking the Myelin sheath, the white fatty tissue that protects the spinal cord. The injury rose to the C-4 vertebrate, causing damage to the nerves in her spinal cord and the rest of her body.

A few weeks earlier, Rebecca had a case of stomach flu, and the transverse myelitis entered her body by attaching itself to the stomach virus, her doctors now say. Rebecca’s body was able to fight off the flu but not the neurological disorder, Dr. Lawrence Vogel said. Vogel is a specialist in pediatric spinal cord injuries at Shriner’s Hospital in Chicago and is treating Rebecca.

“Usually, your immune system is smart enough to not attack itself, but sometimes it gets confused by a virus and attacks it,” Vogel said.

After a month in intensive care at Lutheran General, Rebecca was moved to the Rehabilitation Institute of Chicago. She stayed there for two months, including her eighth birthday.

The therapy helped Rebecca regain some movement on her left side, with most of the progress occurring the first year after her injury.

She is capable of moving her left fingers enough to push buttons on her wheelchair, place the mouth stick in her mouth and turn her neck slightly to the left and can now breathe on her own.

If she concentrates, she can lift her left foot but has no use or feeling in any of her limbs.

While her mobility improved, Rebecca lost more than 30 pounds in those two months because a nurse would not take the necessary time to feed her complete meals, Rebecca said.

“I was just sick and it took so much energy to eat and breathe at the same time and swallow … I looked like a skeleton,” Rebecca said.

Top: Rebecca Wylie works on a drawing in an art class as instructor Curtis Erlinger critiques her work in March. Wylie, a graphic design major, developed a post-viral infection that left her paralyzed as a child. Bottom: Wylie’s mouth pointer rests on four facial drawings that she completed in class.
Top: Rebecca Wylie works on a drawing in an art class as instructor Curtis Erlinger critiques her work in March. Wylie, a graphic design major, developed a post-viral infection that left her paralyzed as a child. Bottom: Wylie’s mouth pointer rests on four facial drawings that she completed in class.

Rebecca weighed 38 pounds when discharged, and the rehab center took an emotional toll as well. Her memories of that time haunt her, and she has to pass the hospital when back home on family visits.

“I can’t stand the smell of the place,’’ Rebecca said. “I can smell it from two blocks away. The smell revolts me.”

Rebecca said her care improved greatly at the Shriner’s Hospital, a religious and charitable organization that pays for all of her hospitalizations, surgeries and treatment.

“Their services go beyond caring for the person’s ailment, the surgery, the therapy … they really work on your whole lifestyle,” Rebecca said.

At 11, Rebecca received a hip replacement when her right hip came out of socket after an uncontrollable muscle spasm. Two years later, she underwent scoliosis corrective surgery where three metal rods were inserted into her back to stabilize her alignment.

After the surgery, she was incapable of sitting up more than 40 degrees for six weeks.

After depending on a breathing tube for more than two weeks, undergoing two major surgeries and facing three near-death experiences, it was time for Rebecca to adjust to her new “normal,” or try to be as normal as a junior high student stuck in a wheelchair could be.

Her parents tried to create a life for Rebecca that was as unaffected by her Disability as possible.

So when the other kids wanted to have water gun fights, Matt Wylie found Rebecca a voice-activated squirt gun.

When disability caseworkers at Caruso Junior High recommended Rebecca take four classes while her peers took five, her parents refused.

When Christie and Matt were faced with deciding how to raise Rebecca after the onset of her injury, they chose to treat her no differently from her younger siblings, Zach, Alissa and Patrick Wylie.

Matt Wylie, an architect, remembers the doctors, surgeons and nurses at Lutheran General gathering together shortly after their final diagnosis and settling on “this is how it’s going to be forever.” As tears rolled down his face at that moment, he realized his daughter would not settle for that.

The Deerfield School Board wanted to send Rebecca to another school across town that was more wheelchair-accessible, but her family put up a fight. It was not going to let her lose her school and her friends after losing so much.

So Rebecca stayed put.

But her new life would be a far different one from the life she had known. For almost two years, Rebecca endured recurring nightmares. In her dreams, she could walk, but in the morning she would wake up screaming and panicking.

It was almost like realizing I was paralyzed over and over again every day, Rebecca said.

Adjusting to complete dependence on others came as no simple task either. Christie Wylie, a second-grade teacher, remembers countless times when Rebecca would go hours without asking for a sip of water or to be taken to the bathroom because she did not want to be a bother.

During the summer before she got sick, Rebecca loved to ride a new 10-speed pink-and-blue bicycle with magenta handlebars. She said she can feel the wind hitting her in the face during those rides.

When it came time for spring cleaning, Matt Wylie hung his daughter’s bike in the garage.

“He told me it was only up there temporarily until I could ride it again,” Rebecca said.

Thirteen years later, the bike hangs in the garage on the same rusty nail. No one can get rid of it.

As Rebecca got older, the obvious differences her friends and classmates once ignored became another physical barrier.

“If they couldn’t see the chair, it would make me so happy because when I look at the mirror, I don’t see the chair,” Rebecca said.

Rebecca began to stop reaching out to her classmates because she assumed they would treat her differently. Becoming isolated from her peers, Rebecca wallowed in self-pity and resentment, she recalls.

As high school neared the end, Rebecca’s attitude changed. Instead of hating the world, she began to embrace the life she had been given.

The Wylies taught Ashley Becker, Rebecca’s best friend, how to drive their van with the accessible wheelchair lift and allowed the girls to take the van out for a spin on occasion.

Although Rebecca’s condition prevented her and Becker from attending Friday night parties, they managed to make it to several John Mayer concerts.

“Maybe we’re missing out on drinking parties or roller skating, but she doesn’t seem to mind and neither do I,” Rebecca said.

When special events like homecoming and prom came around, Rebecca rode in the limo with the rest of her friends. She never took a date, but it did not stop her from enjoying herself.

Taking extra steps to accommodate Rebecca became the norm, Becker said. Whatever it took for Rebecca to belong, her best friend saw that it was done.

The community saw that accommodations were met as well. Every year Deerfield High School organizes an extensive fund-raiser for a specific charity. When Rebecca was in third grade, she was the beneficiary of the fund-raiser.

The community raised more than $30,000 that was put into a trust fund for lifetime medical expenses. The high school built a special lift to move her into the football stadium seats as well as other handicap accommodations for most buildings and classrooms.

Rebecca became something of a small-town celebrity after being on the front page of the Deerfield Review and featured in the Chicago Tribune when she first got sick. But it was not only her disease that made her stand out.

Suzanne Hebson, the Deerfield High School principal, remembers her excelling in the classroom and as a soprano in the school’s music program.

Jeff Berger-White, Rebecca’s senior English teacher, describes how Rebecca amazed him every day.

“Some days, I (would) look up from my own writing and watch Rebecca Wylie,’’ Berger-White said. “Below her neck, she has some movement in her left arm…but that’s all. From the neck up, it’s a different story.”

Although Rebecca wrote with a mouth stick, her writing was not only legible, but many times she also wrote even more than her peers, Berger-White said.

Rebecca received an award named for John F. Kennedy at her high school graduation. In Berger-White’s nomination letter, he remembers describing how he was personally affected by having Rebecca as a student.

“I think it’s impossible for most of us to imagine what it means for Rebecca Wylie simply to come to school each day,’’ he wrote. “That she comes with humor and convictions and thoughtfulness and grace and insights and honesty and a smile every goddamn day is as remarkable and inspiring as anything I have ever seen or expect to see in a classroom.”

Berger-White placed the JFK medal around Rebecca’s neck as she remained humbly sitting in her wheelchair while the audience did something she would never get the chance to do: give a standing ovation.

Although all universities are mandated to adhere to Americans with Disabilities Act requirements, some universities are more wheelchair accessible than others. The University of Illinois is considered one of the top colleges in the country in terms of wheelchair accessibility, which is why Rebecca’s parents were advocating that she go to school there.

After visiting the Illinois campus and seeing its dormitories, Rebecca chose MU. Residential life at the University of Illinois puts all the handicapped individuals in one dorm, Rebecca said. She did not want to feel “institutionalized.”

Rebecca first moved into Johnston Hall as a freshman and began to pursue her bachelor’s degree in graphic design, which requires her to take mostly art classes. University aides are provided to assist her in setting up her workstation, but after her mouth stick is in place, she is on her own.

“In the end, to say that she is an average student would already be acknowledging that she overcomes a tremendous amount, but she is better than that, which speaks volumes,” said Eric Landes, Rebecca’s graphic design professor.

Federal law requires MU to provide classroom lab assistants to students with handicaps, but the university aides stop at the classroom door. Rebecca advertises for, hires and organizes her personal aides, who are mostly MU students. At any given time, she has about seven on staff to provide the daily help that she needs. This includes anything from feeding her, giving her a shower or cleaning up her dorm room in Excellence Hall. The State of Illinois Vocational Rehabilitation Office pays her personal aides about $7.50 per hour.

Kate Roth was one of the first personal aides Rebecca hired when she first came to MU. Two years later, Roth, a Physical Therapy student, wants to work with spinal cord injury patients.

Lindsay Banta, a junior and a nursing major, not only sees Rebecca as a friend but also says her experience has made a profound impact on her life.

“This has helped me to see handicapped people as normal people,” Banta said.

That’s exactly what Rebecca wants, to be seen as a normal person despite her handicap. Although she joins her friends for lunches at Shakespeare’s and was an avid viewer of Friends, Will & Grace and other staples of NBC’s Thursday night lineup with her friends from Johnston Hall, she searches to belong.

“I think I am struggling every day not just to be normal and ordinary, but to belong and through that struggle, coming out on the other side and waking up from the nightmare,” Rebecca said.

Molly Boggs, a sophomore at MU, lived next door to Rebecca in Johnston last year. Boggs soon learned that Rebecca’s wheelchair was only a mechanical device to make her more mobile, not a barrier to friendship.

“If you go out to lunch with Rebecca, you have to help her eat,’’ Boggs said. “That’s different than me, but it just is something you have to get used to.”

At Shakespeare’s, Rebecca shows no shame when her friends feed her Shakespeare’s pizza and several onlookers begin to stare. Instead, she is a complete chatterbox, enjoying the lunch hour and catching up with her friends.

Just like any other college student.

Rebecca frets about her future after failing to secure a job the past three summers. She said she believes people see the chair and automatically assume it makes her incapable of holding a job.

“People don’t realize I can do everything else,’’ Rebecca said. “I can get a job and make money. I can be anything and do anything.”

Rebecca also fears no young man will look past the chair and see her for who she is. She remembers never being asked to dance at school events, and today she is waiting for that dance. Her dream love affair might be to marry Mayer, but in reality, she desires a romance.

“I’m scared no one will ever want to fall in love with me,” Rebecca said.

Nevertheless, she pushes onward with the support of so many who believe in her. Gean Strobeck, Rebecca’s grandmother, sees her as a true fighter who takes on any challenges and finds a way to overcome them.

“I think how in the world is she going to move into an apartment and into the work world, but I thought how in the world is she going to go to college,” Strobeck said.

Said Berger-White: “Her body may be immobile, but her mind and her heart are alive, lively, pulsing with thought and feeling.”

An advocate for stem cell research, Rebecca plans to be a pioneer in this field. Despite being several years away from being able to receive any type of stem cell, she continues to prepare her body for the possibility of a cure. This requires Rebecca to get exercise each day, which is painful and involves making her wheelchair manually stand her up so that she is working her muscles.

Most of all, Rebecca’s biggest dream is to be as normal as a human being can be. She wants to help the general public better understand the disabled community and lessen the stereotypes.

Rebecca wants everyone, especially her generation, to understand what her life is all about.

“It’s not about the chair, it’s not about any sort of ability, Disability, inability, it’s not about me going to school or what I’m wearing or what I do every day or how I do it,’’ Rebecca said. “It’s just about me being normal.”

Copyright © 2005 Columbia Missourian