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.
What do election years and Friedreich’s ataxia (FA) have in common? A lot more than you’d think. Let me explain.
As I’m writing this column, it’s midterms election week, so it’s very front of mind, just as FA has been for me for the last nine years. This got me thinking about the parallels between these two seemingly unrelated topics. And since FA is so rare and hard to relate to, I thought I’d use this opportunity to possibly shed some light on my experience with it using our shared experience of an election year.
Both FA and elections are relentlessly all-consuming. FA is unavoidable when I do anything physical, such as getting a glass of water, sitting down to read a book, exercising, showering, cooking dinner, and everything in between. FA inserts itself and causes inconvenience or inability in every single scenario. Election coverage is just as unavoidable. Ads are on your TV, social media, text messaging, phone calls, billboards, news media, and even in your neighbors’ yards.
Everywhere you look, you’re reminded that the election is coming up, just as with everything you do, you’re reminded of your FA.
They both highlight the negative, forcing you to dig deep to find the good. Candidates air negative ads that focus on what they see as their opponents’ detrimental policies. They spin them to the extreme to scare voters. Living with FA, meanwhile, encapsulates all of your worst fears: disability, pain, expense, missing out, and ultimately, a shortened life expectancy. Neither FA nor elections focus on the good.
You have to research candidates to find out what good they plan to do if elected. Similarly, you have to seek out the experiences of others in the FA community to understand what you’re facing and realize your options. You have to examine your reality with curiosity, vulnerability, and acceptance, and use your findings to form your perspective. When you have an accurate understanding of the present and can focus on what you want of the future, you can cast an educated vote and or choose a productive path forward.
They both affect your day-to-day experiences and larger issues. Governmental policies shape taxes and local, state, and federal laws. This affects what you can and can’t do. FA affects your abilities, priorities, and commitments. It takes control of your body and dictates what you can and can’t do. They both creep into almost all areas of your life. And the longer politicians are in office, the more changes they can make, just as how the longer you live with FA, the more effect it has on your body.
Whether or not the candidate you voted for wins the election, the results will affect your life. I didn’t vote to have FA, but the results affect my life.
With both FA and elections, the results are largely out of your hands. All you can do is your part and then wait and see. You can educate yourself on the candidates, bonds, and everything on the ballot and cast your vote. You can go to physical therapy, participate in clinical trials, fundraise, take precautions, and try to keep moving forward.
You don’t know what the election results will be any more than you know what the outcome of all of your FA-related efforts will be. Will your candidate win? Will you see a cure for FA? You don’t know. But you keep showing up, doing your part, hoping for the best, and preparing for the worst because you never know what tomorrow might bring.
“Keep your eyes open, hold tight to your convictions, give it all you’ve got, be resolute, and love without stopping.” 1 Corinthians 16:13-14 (The Message)