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.
Although biology is a fairly standard requirement in the American educational system, and genetics is a frequently covered topic in biology, I’m realizing how little understanding most of us have about it.
I was blissfully unaware of how little I’d retained from my adolescent studies until I had to try to explain the cause of my disabilities. This new burden of knowledge is one of the countless unexpected results of life with Friedreich’s ataxia (FA).
I can’t count the number of times I’ve had to explain FA to friends, strangers, family members, neighbors, acquaintances, and so on. While it seems that the general public is becoming more familiar with medical terms like cancer, autoimmune, remission, neurological, contagious, benign, viral, and bacterial, without fail, I see the wheels turning and questions forming when I use the word “genetic.”
Some frequent questions include “Do your parents have FA?” “What about your brother, grandparents, and cousins?” “Did your parents know you could develop FA?” “If it’s genetic, how did you have children?” “Will your kids have FA?”
All of these are valid and have scientific answers. Currently, I’m the only person in my biological family to be diagnosed with FA. My parents are both symptomless carriers of the FA-causing gene mutation, and FA wasn’t on our radar until 2013, when I learned I had it. My husband is not a carrier of the FA-causing gene mutation; therefore, our children won’t suffer from FA and will instead be symptomless carriers.
I’ll leave to more qualified scientific minds the exact explanation of rare and recessive genetic mutations and how my DNA can work against me by slowly developing this disease. Instead, I’ll stick to what I know: living with FA.
Although I technically inherited FA from my family, FA is the last thing I think about in terms of what they “gave” me.
Family values and life lessons
My family taught me about kindness and love. My family values celebrating life and creating memories. My family prioritizes physical and mental health while making peace with the lack of control we all eventually encounter with a “do your best, let God take care of the rest” attitude. My family loves deeply, laughs often, works hard, takes responsibility, gives generously, and has faith in a brighter tomorrow.
All of these values have had a greater impact on my life than FA because they’ve influenced how I face adversity, FA included.
I wish my children could’ve seen me run, jump, play, and generally be active and silly so they’d know they inherited some of their physical abilities from me. But for now, I’m thankful I have other traits to pass on, as well.
FA is incredibly humbling, and it’s taught me how unreliable and short-lived physical abilities can be. I appreciated and maximized my abilities as best I could when I could, and I’ll encourage my children to do the same.
The further I journey into my FA progression, the more hope I find in a popular adage: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
My children may not know that they inherited their swimming skills, tumbling power, and passion for entertaining from me because I can no longer do those things adeptly. But I pray they’ll know their grit and grace are their genetic inheritance from me. I pray that, despite my physical disability, the love and life that was poured into me is my legacy, and that they’ll feel my love and pride.