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.
With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware of the ticking clock that has started the countdown on my ability to do just about everything. I am also painfully aware of the disheartening reality that there’s not a treatment or cure to help me slow, stop, or reverse my progression yet.
Despite these odds and my threatening disability, I am doing what I can to maintain my abilities. I made this choice for several reasons.
The first reason I am trying my hardest to fight my relentless disease is for my mental health. If I keep pushing my body physically, I can rest easier knowing that I am doing everything in my power to lessen FA’s progression in my body. I want to be able to look at myself in the mirror and know that I did my best to fight FA that day, whatever that may have entailed. Plus, getting my blood flowing allows me to benefit from endorphins, even if my “workout” might not look like everyone else’s.
Second, I don’t want to give FA that much power to dictate how I live my life. While I want to be safe and smart, I don’t want to give up my ability to complete any task, big or small, just because FA makes it hard. I want to try to learn how to adapt whatever I can to safely maintain all independence. I am not ready to give up on anything (except for wearing high heels!) in the name of my disability yet — at least not without a fight.
Third, I am just plain stubborn. I don’t like being told that I can’t do something, even if it’s my own body setting these undesirable limitations. I want to live boldly. I want to experience life on my terms, not the terms dictated by FA.
Last, I want to be my best possible self for the day the treatment or cure does come so that I will have less to overcome or relearn on my path to a “normal,” healthy, FA-free life. I want to maintain whatever muscle strength I can so that I can run again one day! I want to keep my hand dexterity in its best form so that I can learn calligraphy one day. I want to keep talking no matter how hard or embarrassing it is so that I can flawlessly tell a story of perseverance one day.
It can be disheartening to see my walking getting worse despite all of the squats I do, physical therapy sessions I push through, and mental energy I spend willing my lower half to do what I want it to do. But then I remind myself that my body would likely be even worse off if I didn’t make that effort. I had to adjust my mindset that I am not doing all of this to “get better,” I am doing this to maintain whatever abilities I do have despite FA.
As the wise Dr. Martin Luther King, Jr. said, “If you can’t fly, run; if you can’t run, walk; if you can’t walk, crawl; but by all means keep moving.” I choose to keep moving forward however I can for as long as I can.