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.
Life with Friedreich’s ataxia (FA) can feel daunting as we face hardships, struggles, and countless tribulations. Most FA patients I know have a positive attitude and try to keep moving forward despite what FA throws in our paths. We don’t necessarily like our diagnosis, nor do we like having to fight, persevere, and overcome every moment, but we choose to do so for the sake of our sanity and quality of life.
If you’ve followed my journey, you know I believe in the power of perspective and choice. As my mentor, Julie Richard, says, “Any feeling is OK to feel. It’s what we choose to do with that feeling that matters.”
FA brings mostly negative feelings into my life: frustration, disappointment, sadness, loneliness, and fear. I have to constantly process and choose a way to rise above these feelings if I hope to find any joy, happiness, fulfillment, or contentment.
The parts of my journey that I choose to share publicly, through social media, group texts, or in person at Bible study or lunch dates, are generally when I’m at the “choice” part of my latest obstacle.
I’ll notice a new problem that FA has introduced into my life and study how it makes me feel. I will think about my options realistically. First, is there a solution to this problem? Can a doctor help me resolve this issue? Second, is there something that somebody has invented to help cope with this problem, like grab rails or a different mobility aid? Would it improve my quality of life by saving my small reserve of energy or making tasks safer?
And lastly, how can I move forward from this so that it isn’t the “straw that broke the camel’s back”? What choices can I make to keep my life moving forward in a positive direction?
When I share updates, I provide a high-level summary of my latest personal trial, how it made me feel, and what I resolved to do going forward. I usually incorporate a little detail about my adapted perspective and my faith. My updates are generally positive and usually generate a lot of “you’re so inspiring” responses.
Yet now and then, I will share an update before I’ve come to a peaceful resolution, resulting in a vulnerable and bleak synopsis of my problems. Without fail, a relative stranger will comment about how I can’t give up, how I just need to keep my chin up and stop sweating the small stuff.
These comments discourage me. I just want to reply, “You obviously haven’t been following my journey because I choose a positive mindset 99% of the time; I think I’ve earned the right to periodically share the hard moments surrounding my journey with this disease, even if my ‘pull yourself up by your bootstraps’ moment is just around the corner.” But I don’t. Social media debates just aren’t my style.
I choose to keep searching for the best perspective and path forward. I remind myself that the stakes are too high and I’ve come too far, overcome too much, to let FA defeat me now. I focus on the loving support from my village, and I keep moving forward.
One of the Bible verses I’ve clung to in recent years is John 16:33 from the New Living Translation: “I have told you all this so that you may have peace in me. Here on earth, you will have many trials and sorrows. But take heart, because I have overcome the world.”
Other translations for “take heart” are “have courage.” Yes, FA is an endless source of tribulations and sorrows. But I don’t have to face them alone. I can “take heart” because I know that God is with me, as are the people he put in my life. I can be courageous because I have already overcome so much, and I’m empowered by the one who overcame death.