Name: Lily Pierce
Age: 26
Where do you call home? The suburbs near Greensboro, NC
Education: I have a Bachelor’s degree in English.
Who do you live with? I live in a big house with my fiancé, dad, mom, and brother.
What’s a typical day for you? I work for a local newspaper part-time from home; I serve in volunteer roles through the United Methodist Church and in United Methodist Women (a women’s mission organization in the church); and I blog at retrospectivelily.com. A typical day for me is a mixture of doing my paid job, doing things related to my volunteer roles, reading, writing, and attending meetings (ha!). I also devote a good chunk of time to working out…more on that below.
How long have you known you are living with FA? After years of grasping for answers to no avail, we flew halfway across the country for three days of medical tests. I was diagnosed at the Mayo Clinic at age 16.
Describe your transition from walking to walker/wheelchair: Like other FA’ers, I resisted the transition as long as possible. It took a few embarrassing public falls (with my anxiety about walking escalating daily) over the course of a few months for me to finally try a walker. After a few months with a mobility device, I was so much happier because I was no longer carrying the weight of constant self-consciousness. My identity kind of changed after that–suddenly, I was fully “out” about being disabled…and I embraced it to the fullest.
What do you like to do to stay active and what type of exercises work for you to stay strong? I met my trainer seven years ago, and we’ve worked out together ever since. Right now, I work out with him in the gym twice a week and try to squeeze in a third workout at home (depends on how busy I am). Our workouts are a mixture of “normal” exercises (using machines, doing things able-bodied people would do) and physical therapy (walking across the gym with my trainer–would be nothing to an able-bodied person but is the most exhausting part of the workout for me).
When FA gets you down, what do you think/do to feel better? I remind myself of the ways I am positively impacting the world and the things God is calling me to do, regardless of my disability. I also think of how many people in the world that have a worse hand than me, which puts my problems in perspective. Yes, I have Friedreich’s Ataxia, but let’s get real–I’m incredibly blessed. I don’t work in a foreign sweatshop, I don’t live in a war-torn country, I’ve never worried about having food in my belly and a roof over my head–I could go on forever.
What is one way living with FA has POSITIVELY affected your life? Though the more cynical FA’ers will undoubtedly cringe here. I like being in a position to inspire others. My attitude, my determination, and my big smile illustrate for others that life doesn’t have to be perfect to be wonderful and that God makes lemonade out of lemons.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? You can still be beautiful or handsome, driven, funny, talented, athletic, social, and anything you want to be from a chair. Also, start working out ASAP; I cannot stress enough how beneficial it is for your mental and physical health!
What is the first thing you want to do when a cure/treatment to FA is found? Well, I have always wondered how it feels to walk in high heels. 😉
“I have FA, but FA doesn’t have me” What does this statement mean to you? How do you live your life in the face of adversity? After transitioning to the walker, and embracing my new status as “the cute, friendly girl who uses a walker,” the tables turned; I had FA, but FA didn’t have me. Around that time, I uploaded a mirror selfie while sitting in a wheelchair for the first time EVER to social media, and I received so much support. A new confidence in myself began to develop and enabled me to do things like advocate for my needs with my university’s handicapped office. Thank God, I never have to go back to the old mindset of fear and shame.
Tell us a little more about you…I am so blessed to have a fiancé who treats me like gold, a loving family, a tight-knit church family, a job related to my dumb humanities degree (ha!), opportunities to serve my community, and so much more.
Interviewed by
Brittany Sommerfield