Life as a Creative with Friedreich's Ataxia
BY LIBBY SCHWERS
When I was a freshman in college, studying art and graphic design, I was walking with my friends through the parking lot of my dorm building. I was struggling to keep up with their normal walking pace. At one point, I lost my balance, tripped over my own feet, and fell to the cement. I overheard another group of college students laughing and one of them said, “How did she just fall?! She’s not even wearing high heels.” My friends helped me up, and even though we all laughed it off and kept walking, I couldn’t help but feel like something was wrong with me. Those kids were right, how did I just fall out of nowhere?
Throughout the remainder of college, similar instances like this kept happening–I’d fall down suddenly, walking to class was a struggle every day, I’d hang onto the railing for dear life when using the stairs. I could barely carry my art supplies to the studio. I always told myself and others, “I’m so clumsy!” but I was actually really scared because I felt like my condition was getting worse. At the time, I didn’t know what to do or how to explain what I was going through. My social anxiety was crippling.
I eventually started seeing doctors and getting assessments done to get answers. After about six months of appointments with no luck, I finally saw a neurologist at the University of Iowa that told me, “I think you have Friedreich's Ataxia.”
The only reason I had previously heard of FA was through my extensive Google searching to try and figure out what was wrong with me. My symptoms made perfect sense. The doctors took a blood sample, sent it off to a genetic testing lab, and a few days before I graduated college, I got a phone call telling me my test for Friedreich’s Ataxia was positive.
At first, I felt such a sense of relief. I had an answer to why I’d been feeling so off for years. Then, I went back to Google’s definition of FA:
Friedreich's ataxia is an inherited disorder that affects the nervous system. Symptoms often begin in late childhood and can include trouble walking, fatigue, changes in sensation, and slowed speech. The symptoms get worse over time. People with FA tend to have a shorter life expectancy than normal. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.
Yikes.
At age 21, I had so many aspirations for how my life would look. FA was not what I envisioned. I was crushed.
I’ve been a creative person my entire life. I worried that my FA diagnosis would limit my creative abilities and that I’d eventually lose that creative energy.
I decided that in order to get through this, I needed to have a positive mindset. If my body was going to slowly stop functioning, at least I still had my personality and outlook on life. That’s what matters most.
“Keep moving” became my mantra–I got it tattooed on me and designed t-shirts and stickers with the saying to support research for a cure for FA. I used my creative talents to design apparel for my friends in the FA community for their own fundraisers.
Fast forward to now. I’m 25, own a creative studio, and I get to collaborate with other creatives for a living. What a dream.
I didn’t get here on my own, though; I have the most amazing support system behind me. My friends and family are a huge reason why I am able to achieve my aspirations, and I’m beyond thankful.
It’s not easy. Some days, I’m too fatigued to be creative or productive. My body doesn’t always allow me to accomplish everything I feel like I should during the day. I feel frustrated when I’m reminded that I can’t do everything by myself. I’m learning to let go of these stubborn tendencies and let people help me when I need it.
Often times, I get inspired to do things like paint a mural in my room, hang picture frames, or rearrange my plants, but I know I need to repress that creative energy and wait for an able-bodied person to assist me. In a lot of ways, I’ve become more of a “creative visionary,” and I get help from others in order to execute my ideas. Which, honestly, isn’t so bad; it’s just taking some getting used to.
The first treatment for FA just got approved by the U.S. FDA. This is huge! After years of uncertainty, I (and the rest of the FA community) have hope. The treatment, Skyclarys, will slow the progression of FA by 50%. I couldn’t be more excited to start treatment within the next few months.
Over time, Skyclarys may help me regain some of my physical abilities, which will be such an amazing feeling. I’ve been reflecting a lot on my FA journey and how it’s affected me as a creative. I’ve come to realize that no matter the outcome of my diagnosis, I will always be a creative person, overflowing with new ideas. It’s who I am, and always will be, no matter what.
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