‘I knew FA was present, but I refused to acknowledge it — to protect my heart and my free spirit.’: After years of denial, woman embraces mobility aid and life with a rare genetic disease

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“A few weeks before my high school graduation (almost 9 years ago), I received some overwhelming and grim news. I had a rare, progressive, and debilitating disorder called Friedreich’s Ataxia (FA). I had a pretty typical childhood, but grew clumsier as a teenager. I developed anxiety in what seemed like the weirdest situations, like climbing the bleachers in the gym, walking in front of my classmates to turn in a paper, and standing with my friends in the stands during Friday night football games.

I visited many different specialists and physical therapists, who gave me exercises to combat the clumsiness. But it never got better. Finally, my primary care physician referred me to a neurologist. Overall, I’d like to think I had a normal high school experience. But I think I knew, underneath it all, there was something seriously wrong.

Courtesy of Kelly Barendt

Then, in May 2011, in a dimly-lit doctor’s office, a gray-haired doctor gave my dad and I the news. My dad was expecting it. He sighed and told the doctor he would explain it to me. The next few hours felt surreal. I felt some relief; I wasn’t doing anything wrong, it wasn’t my fault I wasn’t getting better.

However, as time went on, I could sense my dad was seriously upset. I can’t remember our exact conversations, but I remember him telling me I might end up in a wheelchair. I instantly had my guard up and didn’t believe it. ‘Can’t they just give me a pill to fix it?’ I asked. It was hard for me to wrap my head around such an enormous, complex diagnosis.

Friedreich’s Ataxia is a rare genetic disease which causes difficulty walking, loss of sensation in the arms and legs, and impaired speech. It can also cause cardiomyopathy, impaired vision, and hearing. Most patients diagnosed with FA become wheelchair-bound in an average of 6 years.

Regardless, I went off to college at Ohio State University, where I fell into a deep state of denial. I never talked about FA with friends, classmates, or professors. When my parents brought it up, I instantly started sobbing. Logically, I knew FA was present, but I refused to acknowledge it — to protect my heart and my free spirit.

Photo credit:  Jackie Duckett

For four years of undergrad, I pretended FA didn’t exist. Friends and classmates pretended as well, to protect my feelings. I exhausted myself doing so much walking around campus, attempting to keep up with friends and pretend everything was ok.

One night, while lounging on the couch in my sorority house, one sorority sister asked if I could drink. I looked at her, puzzled, and the other girls in the room quickly shushed her and changed the subject. I went out with friends in my sorority most weekends, and was able to disguise my clumsiness and lack of coordination as being drunk. No one outside my sorority seemed to take notice.

Courtesy of Kelly Barendt

In hindsight, I resisted the help of a mobility aid for too long. I was stubborn and relentless in pursuit of maintaining my ability to walk freely. I had tunnel vision; walking on my own was all I cared about… until I had no choice.

In 2015, I was accepted into a rigorous graduate program for early childhood education at Ohio State. That summer, I fell in the garage at my parent’s house and severely hurt my foot. Crutches weren’t stable enough for me, so I was forced to start using a walker. I came so close to quitting and giving up grad school on multiple occasions; it was an exhausting year and a half — physically, mentally, and especially emotionally.

Courtesy of Kelly Barendt

For student teaching, I was placed with a cooperating first-grade teacher who, after a few days, told my supervisor she wasn’t ‘comfortable’ with me being her student teacher. For months I was left without a student teaching placement. When I was finally placed in a new school, I didn’t have the time or resources to pass student teaching.

My supervisors offered me the option to complete another semester of student teaching, in the hopes I would do better and earn my degree. Eventually, I was able to complete graduate school and earned my license to teach K-3 in the state of Ohio. But not without tears, frustration, heartache, ableism, and exclusion.

Courtesy of Kelly Barendt

I taught as a substitute teacher while I began searching for a job. After exhausting myself every day, I realized teaching wouldn’t be a sustainable career choice for me. FA is progressive, and I was already struggling to get through a full workweek.

Courtesy of Kelly Barendt

I lived at my parents’ house for about a year, while I tried to sort out my career since teaching wasn’t a viable option. I ended up working remotely, for my cousin’s small business, as a virtual assistant. I gradually increased my hours and responsibilities. I also took on a few of her friends as clients.

Eventually, I started earning enough each month to move back to Columbus, where I still live and work in a lovely apartment in the city, surrounded by a supportive community. I enjoy volunteering at the local library, riding my scooter to the gym, and delighting in brunch with friends on the weekends.”

Photo credit:  Jackie Duckett

This story was submitted to Love What Matters by Kelly Barendt of Columbus, OH. You can follow her journey on Instagram. You can also visit her blog hereSubmit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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