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.
One of American poet Robert Frost’s famous quotes is, “In three words I can sum up everything I’ve learned about life: it goes on.” As I approach the ninth anniversary of my Friedreich’s ataxia (FA) diagnosis, I can say I wholeheartedly agree.
Amid FA symptom progression, the ongoing nature of life can sometimes be wonderful, but other times, it feels like an inescapable merry-go-round spinning out of control. Here’s what I mean.
Even when FA is at the center of my universe, the calendar doesn’t stop to accommodate my battles. My children don’t stop playing, learning, growing, and exploring. My friends don’t stop all of their busy plans. The scientific community doesn’t stop searching for treatments or cures. Retailers don’t stop selling, and consumers don’t stop buying. Social media doesn’t pause. My pets still need tending. My husband doesn’t stop taking care of us. My FA symptoms don’t stop. All around me, life goes on.
When FA demands to be the center of my world, my life seems to fly down an uncomfortably unpredictable trajectory that throws my focus and priorities out of whack. The disease consumes me, and every other part of my life becomes a distracting blur. I get so frustrated about missing big and little moments while I’m constrained by FA and trying to adapt to whatever new obstacle it’s thrown my way.
During these times, I wish I could go back to my previous stage of FA, when I had things relatively figured out. I wish scientists would hurry up and find a way to slow, stop, or reverse the effects of this terrible, progressive disease. I wish everyone would wait for me to figure out how to cope so I don’t have to miss things. But I also wish I could just retreat and figure things out for myself while everyone continues living a life that’s uncomplicated by the battles I’m forced to fight.
Occasionally, I am mentally strong enough to force my FA-consumed mind to pause and look elsewhere. And when I focus on other things, I find I get caught up in the fulfilling and productive flow of life rather than the all-consuming riptide of FA. If I strive to be the best mom, wife, friend, daughter, sister, and advocate I can be, being a good patient naturally follows.
When I focus my efforts on moving the non-FA-related parts of my life forward, I have more energy, patience, and peace to accept my disease in stride. When I invest in things that bring me joy, my tank is full enough to handle health complications. I can manage the ongoing nature of life and FA.
In other words, I haven’t yet mastered how to handle the fact that the world goes on around me when my life is consumed and forcibly paused by my progressive disease. In my years of living with FA, time has felt incredibly disjointed. It has flown, it has dragged, I have dreaded, I have eagerly anticipated, days have been jam-packed and busy, and days have been calm and lazy. But no matter how time seems to progress, and no matter what FA brings my way, one thing is certain: Life goes on.
The world will keep going whether FA is trying to derail me or not. I’ll continue to adapt and try to find the best way forward so that I can go on, too.
“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” — Isiah 41:10 (ESV)