Archive for Monday, August 26, 2013

KU students with brain injuries relearn college life

August 26, 2013

— After a 2010 car accident left Amanda Thompson with a severe brain injury, the onetime pre-law student at Kansas University had to relearn everything, including how to feed herself.

A year later she returned to campus to begin school again. Coming from having to reacquire skills she learned as a child back into a university environment overwhelmed Thompson at times.

“It was terrifying,” she said.

Thompson slowly realized her own limits and pushed herself to start asking for help from instructors, friends and the university's accessibility staff. Now she is on pace to graduate as a speech, language and hearing major.

But when she first returned to campus, Thompson often felt alone, and she still does sometimes.

Over time she has re-learned how to live college life, and hopes her experience can help the often overlooked population of students with brain injuries and cognitive disabilities. And Thompson's experience might prove instructive for another KU student who suffered a traumatic injury earlier this year and hopes to return to school someday.

Recovering from a skiing accident

Ellie Cizek, along with some high school friends from her hometown of St. Paul, Minn., migrated to Lawrence looking for a college experience with a spirited campus feel. Once here, Cizek fell in love with her life at the university. The school and the campus sorority she belonged to, Kappa Kappa Gamma, are “just her world and her life,” her sister, Josie Sullivan, said.

But the KU sophomore suffered a severe brain injury in a skiing accident in Colorado in January. Cizek spent the days following the accident in a coma. Since then, months of specialized cognitive rehabilitation have helped her regain skills — such as walking, talking and eating — that once were routine.

One of the effects of Cizek’s injury is a limited ability to plan or look into the future. Partly as a result of this, Cizek has trouble understanding why she needs to go through the daily drudgery of rehab, according to her sister, Josie Sullivan.

Helping to motivate Cizek through the hard work needed for recovery is the hope of returning to KU at some point. “It’s the reason why she’s enduring what she thinks are these ridiculous classes,” Sullivan said.

After the accident, many at KU publicly embraced Cizek. Members of Cizek’s sorority quickly took to Twitter to show their support. KU basketball coach Bill Self sent her a get-well card. And at forward Justin Wesley’s prompting, players on the basketball team wore bracelets engraved with Cizek’s name to show support.

Much as Cizek might want to return, and much as her family might want her to be independent and finish college, Sullivan said Cizek is at least six months away from being ready to resume university life.

In the meantime, her family is scrambling to come up with the money to continue her treatment. Four months into rehab, her insurance company declined to continue payment for a rehabilitation center in Omaha. To help pay for Cizek’s treatment, Sullivan co-founded the “Joy Recovery Project,” which has raised more than $250,000 so far.

Invisible disabilities

If and when Cizek does return to KU, she will join a population on campus with little visibility. In fact, some have called cognitive and intellectual issues the “invisible disability.”

A 2012 survey by a KU Americans with Disabilities Act task force found only 15 people on campus who self-reported a brain injury. Among them was Amanda Thompson.

Thompson suffered her brain injury in a car wreck on July 4, 2010, when she was 19. Like Cizek, Thompson spent several days in a coma following her injury, and when she awoke, she had to relearn even some of the most basic motor and cognitive skills.

After rehab and a recovery whose success stunned many around her, Thompson still lives with a different brain than the one she had before the accident.

She gets drained when there’s too much going around her. She says riding the bus, for example, “sucks me dry” because “people are packed in like sardines.” The right side of her body still “feels different," though she's regained most function in it. And she can’t always fully moderate her behavior: Sometimes an ill-timed and situationally inappropriate laugh escapes.

After a year in rehab, Thompson returned to KU. There, she had to navigate a world in which people couldn’t see her disability. At the same time, Thompson herself struggled to become more aware of her limitations and vocalize them when she needed to. “I tried to push past the tired point. It’s hard for me to stand up and say, like, ‘I’m tired. I need a break.’”

The campus itself, its sights, its sounds, the collective energy of the mass of bodies buzzing around — in short, all the things that might energize another student — can quickly tire Thompson. “It’s a very overstimulating campus, and that’s a big deal for me,” she said.

Classes, too, posed plenty of challenges. Through KU’s accessibility office, Thompson was able to get someone to assist her in taking notes, allowing her to better listen to her instructors. She also is allowed to take tests in a separate room to ward off the overstimulation of a crowded classroom or lecture hall.

Accessibility ambassador

Thompson now serves as an accessibility ambassador for KU's Institutional Opportunity and Access office, as well as vice president of AbleHawks and Allies, a campus group that advocates for people with disabilities. The group has been the source of many new friendships for her. Once she graduates, she plans on doing graduate work in the field of speech, language and healing and going on to help people who share similar disabilities to hers.

She said that she feels connected anyone who has suffered a brain injury, even if she hasn’t met the person, and even if they suffered a different type of injury or symptoms. “Maybe it’s the shared experience,” she says.

That includes Ellie Cizek, who Thompson said she hopes to meet at some point.

Should Cizek eventually return to KU, Thompson’s advice is to speak up and make sure those around her know her needs.

“I know it’s scary," she said, "but you have to advocate for yourself."


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