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.
When I find myself talking about the hard part of battling Friedreich’s ataxia (FA), the word I use most is “relentless.”
FA is a rare, genetic occurrence that causes our cells to betray us with the progressive deterioration of dexterity, coordination, energy, and more. FA relentlessly worsens all of my physical abilities, no matter what I do to slow, stop, or reverse the disease.
I can’t simply take some Advil or slam a cup of coffee and power through it. I can’t tweak my diet to avoid it. I can’t reverse the effects of FA by going to the gym. I can’t have a doctor perform a miraculous surgery or prescribe a magical cocktail of drugs to overcome it. FA claims victory no matter what I try, because it relentlessly battles me in every cell.
I have to hand it to FA — it’s a ruthless opponent. Day after day, battle after battle, FA remains consistent and predictably problematic.
Some comfort is to be found in knowing what to expect. Planning and accepting my reality become just a little bit easier. While I have good and bad days, the basics of my disability remain relatively consistent. For example, I know that I will need my walker all day, no matter where I go or what I do. So, it’s easier to plan now that my walker is a necessity. And I take comfort in knowing that I will have the help I need.
When discouragement sets in
I have accepted the relentless physical nature of FA. I know my limitations and my abilities, and I know how to safely function in that space. However, my mind and my heart get discouraged.
For example, today was a special day. My son, Brooks, who is in kindergarten, had a field day with his classmates called “Kindergarten in the Garden.” The kids had various activity stations set up in their on-campus garden center, including a scavenger hunt, seed planting, taste testing, and more. Parents were invited to watch.
As always, I did my research before the event, and I knew it would be rough terrain that would make it difficult for me to navigate safely, even with my walker. Luckily, my husband, Kyle, was able to attend, too. He held my arm for extra support when I needed it, and I was able to watch most of the fun activities.
I was proud of myself for getting out there and being a part of this memorable event, but my heart broke bit by bit the entire time, as the relentless reality of FA stole my ability to truly be present in the moment.
On the way home, my husband asked if I had enjoyed the event. I would have loved to enthusiastically answer yes, but the truth was that it would have been a lot more fun without FA.
FA makes everything less fun, a lot more complicated, and exhausting. I missed seeing Brooks grab a friend’s hand because I was busy watching the ground to avoid tripping hazards and other obstacles along the path that my walker wheels would get stuck on. Also, in an embarrassing and scary moment, I nearly fell, which made my heart race and my legs shake for a while.
An important reminder
It was the first time I had met many of the parents in Brooks’ class, so my walker received many curious looks. I didn’t approach the other moms and introduce myself as freely as I wanted to, because I knew they were wondering about my walker. And standing around with a bunch of impressionable kindergartner ears isn’t the right time or place to address FA appropriately with others.
Afterward, I was whiny, telling Kyle, “It’s so unfair how relentless FA is. I never get a break from my failing body, and it’s only getting worse. Having FA drains me. I wish it would give me a break here and there, and let me participate in my life like ‘normal,’ healthy people do.”
“But you are just as relentless!” Kyle replied. “You fight FA at every turn to keep living the life you want. And I know it’s draining, and I know it’s daunting. But you don’t accept FA without a fight, and that mission has to provide you with a little more fuel to keep being relentless, too.”
I pondered his words.
Going forward, when I describe FA as relentless, as I often do, I can now imagine FA describing me that way, too. Yes, it’s exhausting. Yes, it’s overwhelming. No, it isn’t ideal. But it is worth the fight. Life is worth the fight.
And who knows, maybe one day, I will win a battle or two.