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Grads with debilitating diseases triumph with degrees

8:28:27 AM CDT - Thursday, May 13, 2004

By Amy Geiszler-Jones

JPEG Image (250x163)
Rachel, left and her mom, Phyllis Fletcher, a School of
Nursing instructor, share a moment together after
Rachel's name was put on a waiting list for a double-
lung transplant in 2002.  In March, Rachel received the
transplant, and this month she'll receive her
communication's degree.
A little more than two years ago, Rachel Fletcher was given about two years to live if she didn't get a double lung transplant to replace hers, which were giving out because of cystic fibrosis.

She was two semesters shy of finishing her degree.

This spring she's gotten a new lease on life, and now she's getting her degree in integrated marketing communication, earning summa cum laude honors.

Most people on the WSU campus have seen Jim Boyce in the 16 years he's been at WSU, working on his degree, but few have probably approached the severely disabled Boyce, who has cerebral palsy.

Doctors had told his mother he'd only live until about age 5, but this summer he'll turn 53. About to earn his degree in general studies, Jim thinks he's finally found a purpose for his life: helping people understand what it's like to be disabled.

Both Rachel and Jim are triumphing over diseases that have threatened their bodies but not their minds and spirits. Both will earn their degrees at the Fairmount College of Liberal Arts and Sciences commencement ceremony at 5:30 p.m. Saturday, May 15, in Charles Koch Arena.

A pair of new lungs

Rachel, the daughter of Phyllis Fletcher from WSU's School of Nursing, and Lee Fletcher, received a double-lung transplant during a six-hour surgery March 24 at Barnes-Jewish Hospital in St. Louis.

"I've got a lot more stamina that I had before," said Rachel, during a phone interview one month after the surgery. "It feels so remarkable."

She's been in the St. Louis area for post-operative care, but her doctors have cleared her to return for commencement. After the ceremony, she'll return to St. Louis until she can return home in June.

"This is something I've worked so long for, I want to do it," she says about attending commencement.
Indeed it was a struggle to get that degree, as Rachel battled failing lungs, which were working at less than 30 percent capacity; anemia; infections and osteoporosis while she and her family waited for a transplant.

Rachel even switched from the Barnes-Jewish Hospital's waiting list to one at a Denver hospital because its list was shorter. When she didn't make any significant movement on that list, she re-listed with the St. Louis center in January, where officials told her she would probably have lungs in three months.

With new lungs, Rachel faces an even more regimented drug treatment, and she'll need to be cautious about exposing herself to germs.

She'll continue rehab to strengthen her lungs and body while she helps her father and brother James, who also has cystic fibrosis, with marketing their west-side Roly Poly sandwich shop.
Rachel would eventually like to work for a nonprofit, and she plans to volunteer. "Organ donation has obviously become an issue close to my heart."

Finding a purpose
Bud and Jim
Adviser Bob Rozzelle, left, and Jim Boyce share a laugh
before they show a PowerPoint presentation Boyce
made about what it's like to be disabled to Larksfield
Place employees.  "I've come to know (Jim) as a friend,
and that's a good thing," says Rozzelle.

Writers are often told to write about things they are most familiar with. So when Jim Boyce took English composition classes, he wrote about being severely disabled. Jim, who has an IQ of 130, can move only his head and has limited movement of his left arm. He has limited vocal skills.

He paired up with communications graduate student Jou-Ling Ng to turn those writings into a PowerPoint presentation that he is sharing with community and church groups.

Bob Rozzelle, Jim's longtime adviser, premiered the piece in his Intro to the University class.

"Absolutely everyone was touched and thanked him for his courage and for helping them not to feel sorry for themselves," Rozzelle recalls. One student said Jim's story gave him hope: His son, too, has cerebral palsy.

The presentation follows Jim's life from a young boy, with interviews with his mother, to his being institutionalized for 19 years at the Kansas Neurological Institute and to his struggle to live independently at the Timbers in Wichita.

He reminds people that barriers for the physically disabled aren't only "bricks and boards, but unfriendly attitudes and friendly concerns," and that he's missed out on so many things many take for granted.

And yet, Jim says he has appreciated those unfriendly attitudes and friendly concerns, because they have "empowered me to overcome such barriers."

Rozzelle says he's been inspired by Jim's courage and determination.

"The first time I met him I had a similar experience to what many people have: You don't want to intrude but you don't want to ignore. His verbalization is more like moaning but I knew I wanted to get to know him," Rozzelle says. "I've come to know him as a friend, and that's a good thing."

As Jim and Rozzelle are interviewed, Rozzelle's patience and friendship is evident as he tries to decipher Jim's vocalization and often catches Jim's intent before a sentence is finished.

While Jim has many needs himself, he has a compassionate nature, Rozzelle says. The presentation includes photos of Jim, who has a deep sense of faith, on two mission trips to Ecuador.

Sharing his presentation is having a tremendous impact on Jim and those who view it. It's renewed Jim's sense of purpose, Rozzelle says.



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