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Ataxia is not a foreign cab

The spiritual ‘taxi ride’ of Sister Mary Erwin Baker

by Bob Uhlar

LEAVENWORTH — For 28 years, you’d see Sister Mary Erwin Baker bustling around the campus here of the University of Saint Mary, her arms full of teaching materials for her math or computer science classes. 

“She walked more quickly than most people,” said Sister Kathleen Wood, a fellow faculty member and Sister of Charity of Leavenworth. “It is such a contrast to her journey the last few years.”

When pain in both her hips slowed her pace, Sister Erwin retired on May 13, 2000. She had both hips replaced the same year. The surgery was successful, but her rehabilitation took a U-turn a few months later.

“In January 2001, we noticed that I started to walk as if I were drunk,” said Sister Erwin.

It would take almost two years of tests, and finally an MRI of her brain, for her doctors to arrive at the correct diagnosis: ataxia. Nobody knows what causes it or how to cure it.

“I had never heard of ataxia before,” said Sister Erwin.

She is not alone. About 150,000 Americans suffer from the neurodegenerative disorder that shrinks the cerebellum — the lower portion of the brain that controls motor function.

“That is three times the number of individuals who suffer from Lou Gehrig’s disease (amyotrophic lateral sclerosis or ALS),” explained Sister Erwin. “But nobody famous has brought it to national attention.”

Many people compare ataxia with ALS, or with multiple sclerosis (MS), because the symptoms are similar. But instead of attacking the nerves that carry commands from the brain, ataxia attacks the portion of the brain closest to the spine. The rest of the brain continues to function properly, meaning a sharp mind slowly finds itself in a body that won’t respond to thoughts.

Every few months, Sister Erwin would find new difficulties surfacing: from needing a walker, and then a three-wheeled scooter for cross-campus trips, to slurring her words and finding it difficult to write or speak. Finally, she began having trouble using forks or spoons, getting out of bed, and getting dressed.

Before you start feeling sorry for her, however, you should know that Sister Erwin is embracing this journey as one more chapter in both her teaching career and spiritual journey.

“It’s not what happens to a person,” she firmly believes. “It’s how he or she responds to it.”

Sister Erwin, for one, is going to respond to the challenges of ataxia as she has to all the challenges she’s encountered in life — as a learning opportunity.

Every day, she said, is a new adventure.

“What will I discover missing, and how will I adapt to it?” she said. “I have eliminated the word ‘frustrated’ from my vocabulary.”

When she started using an electric scooter, something many disabled people rely on, she began to understand what her new condition could teach her — and in the process,

“I went around the campus identifying places where we needed to make things accessible for the disabled,” she said.

Sister Erwin also began keeping a journal of her symptoms, recording their onset and severity. Then, she put together a computer slide show for USM nursing students about her condition and the progression of the disease.

She also enjoys playing “patient” for the same students, who need volunteers for health examinations and for practice transfers from wheelchair to bed and vice-versa.

“She just lights up the room when she is here,” said Kathy Ducey, assistant professor of nursing.

Sister Erwin grew up in Leavenworth. She wanted to be a teacher and noticed all her teachers at her Catholic school were Sisters of Charity. 

“As a teenager, I assumed you had to be a Sister to be a teacher,” she said. “So at 17, I approached the Sisters of Charity of Leavenworth in 1952 about entering the community.”

After making her profession of vows in 1955, she taught elementary school for seven years, followed by nine years teaching high school. She returned to Saint Mary in 1972 to teach mathematics and eventually computer skills.

Noticing that many students were intimidated by math, Sister devoted herself to helping her students overcome the anxiety that was inhibiting their learning.

“By coaxing the student to engage the process,” she said, “he or she will not only learn math, but gain self-confidence.”

“She took me under her wing,” confirmed 2002 graduate Elizabeth Nester Resman, “and continues to this day to be one of my most valuable friends.”

Elizabeth started at Saint Mary in 1973 but had to drop out. She returned 25 years later to find the same teacher in the math classrooms.

“She pulled out her grade books from the 1970s and found me: ‘Elizabeth A. Nester, Trig I,” said Elizabeth. “I remember her contagious enthusiasm for learning.”

Now in the sunset of her years, Sister Erwin has even figured out how to continue teaching after she dies.

“I’m donating my body to science,” she said. “Maybe a scientist out there will figure out how to prevent or cure ataxia.”

About the author

The Leaven

The Leaven is the official newspaper of the Archdiocese of Kansas City in Kansas.

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