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.
I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational treatment is designed to make the cells in my body that are damaged by FA work more efficiently, or more normally. I’m hopeful that this can slow down my progression.
I had to take several qualifying tests to see if I am a good candidate for the trial. One big factor was a comprehensive blood panel. Researchers checked a number of things, including blood pressure, cholesterol, liver enzyme health, and others. When I returned for a follow-up visit, my nurse and trial coordinator gave me a surprising result. She showed me my blood panel readout and said, “I know this doesn’t mean much to you as it’s just a bunch of random numbers, but I had to share. Your bloodwork has some of the best levels I’ve ever seen. Besides FA, you are in perfect health.”
Now, granted, I work really hard for that. I’m mindful about what I eat and drink, and I exercise as often as possible. I do this for a number of reasons — the biggest of which is FA. I can’t control the progression of FA, but I will do everything in my power to make good choices with what I can control. I also want to be a healthy example for my kids. I want to fuel my body well so I feel more equipped to fight FA.
Don’t get me wrong — I am far from perfect. On some mornings, I eat peanut M&M’s for breakfast. I demolish my son’s leftover pizza. I indulge in giant spoonfuls of Nutella. I am an imperfect person, just like everyone else. Which really got me thinking about the idea of “besides FA.” Yes, FA is a huge, all-consuming, unavoidable part of what makes me who I am. But besides FA, I am just like everyone else.
This statement made me realize that I have accomplished a lot in life, despite FA. I have grown into a complex, adaptable, sensitive, and hard-working person, and just like everyone else:
I get insecure.
I love to travel and have big plans for future trips.
I’m all for a good Netflix binge session.
I worry about the future.
I get excited when the seasons change.
I want to be liked and accepted.
I love people-watching.
I struggle through highs and lows.
I get sad.
I love a good laugh.
I do what I can to make it through the day.
I get excited when I see packages at my front door.
I wish I were better at sports.
I can’t say no to a rerun of “The Office” or “Friends.”
I strive for better relationships with friends and family.
I’m addicted to Target and Amazon Prime.
I love good food (especially food that I don’t have to cook!).
I question my parenting skills daily (OK, hourly).
I want to have a positive impact on the world.
Besides FA, I am just like you. It is just a part of me, and it does not define me. I have big, big plans for my life, and I don’t plan on letting FA ruin those. The execution of those plans might look different because of FA, but I’m not letting that hold me back. I’m living the dream, despite my disability. I challenge you to overcome your “besides FA” traits instead of hiding behind them.