My Journey to Accepting My Responsibility With FA
I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Throughout my journey with Friedreich’s ataxia (FA), I’ve wrestled with people calling me an inspiration. My feelings about it have changed and progressed just as quickly as my disabled body.
When I was diagnosed with FA in 2013, my symptoms were relatively mild. The only things I couldn’t do anymore were running and wearing high heels. I conducted a lot of research into typical FA progression, and I was determined to do whatever I could to prevent that future from becoming my present.
So when I started raising funds and awareness for FA research and people told me how inspiring that was, I thought, “I am just doing what I need to do to secure my future. How are my intrinsically selfish actions inspiring?”
I didn’t understand why people saw inspiration in that, but I was so thankful that they did. I was glad that I was stirring up some emotions because it made my efforts more productive. People were willing to donate and support my cause because they viewed me as an inspiring fighter.
As my symptoms progressed and FA increasingly affected my everyday actions, I lost all shame. I became transparent and vulnerable, all for the sake of putting an end to this disease and, in turn, preventing a future that now seemed more tangible, unavoidable, and daunting.
In my updates, I began to share more about my feelings and my faith. I expressed my dark fears, desperate prayers, and hopes for the future. In my mind, the responses calling me inspirational started to make more sense. Inspiring people was my goal at that point, as I now had two audiences. I was trying to inspire people outside of the FA community to become aware of this disease and to help our community put an end to it. I was also trying to inspire my fellow FA patients not to lose heart.
My symptom progression made me feel like I had a leg to stand on, no pun intended, when speaking to the FA audience. I felt like I was truly a part of the community now, and I wanted to make my presence mean something.
Then I became dependent on mobility aids. Clinging to a walker 24/7 made me think about FA just as often. Nothing I did was mindless, and I became hyperfocused on safety. I was constantly consumed by thoughts of FA, which gave me ample time to gather my resulting feelings and share them accordingly.
I began writing more consistently for Friedreich’s Ataxia News, and this practice helped me find my voice and share my journey online. I was able to use my social media platforms and my column to speak to multiple audiences. Something about feeling like I was truly a part of the FA community and had a valid message to share changed the way I saw my journey.
I realized that FA comes with a responsibility. Because the disease is so rare — as is a 34-year-old mom who’s dependent on a walker — I have a unique perspective on life and an unexpected platform to share it from.
Before FA, I never aspired to be an inspiration, but perhaps that is my purpose in life. Even though most of my struggles are visible, countless people in my circle of influence face invisible struggles. The hardships of my journey are only wasted if I keep them to myself. If I openly share, maybe my experience can help someone else, making this horribly cruel and ugly disease represent something beautiful: hope.