Name: Stephanie Magness
Where do you call home? Santa Clarita, California
Education/Career: B.S. in Psychology; Minor in Religious Studies with a Concentration in Substance Abuse Treatment from Regent University (Not that I work in that field, lol).
How long have you known you are living with FA? I was misdiagnosed with Charcot Marie Tooth in 1994 after my scoliosis was found during 7th grade P.E. screening at school. That was right before the Friedreich’s Ataxia gene was discovered. Every doctor I had just seemed to go along with the initial diagnosis until my progression made it clear there was something else going on. So 10 years later, I finally ended up in Dr. Perlman’s office at UCLA where genetic testing confirmed FA. I was 22.
Are there any others with FA in your family? I have one younger brother, Keith. He does not have FA.
Describe your transition from walking to walker/wheelchair. Honestly, it was hard. I had a hard time accepting the fact that I needed a wheelchair because I had spent years dreading it, thinking it would change me. One of my best friends and her husband bought me my fist wheelchair. I couldn’t bring myself to take that step before she made it for me… Such a loving gift that made something scary a lot less scary. And you know what? It was freeing to use a wheelchair. And it didn’t change me. Don’t get me wrong, it wasn’t a tearless transition, but that’s okay. So if you’re facing this transition, try not to dread it too much and yet, know it’s okay to feel that. It’s also okay to enjoy the freedom it can bring.
Do you have any hobbies or special interests? I LOVE to read, and I love writing. I love live theatre and live music! Is eating a hobby?! Haha
When FA gets you down, what do you do do/think to feel better? I’m a Christian, I believe Jesus Christ is our Savior and sustainer. Reading or remembering my favorite scriptures always lifts me up. A good movie I can bury myself in helps too (even better if there’s dark chocolate involved!).
What is one way living with FA has POSITIVELY affected your life? I think it has made me more compassionate and understanding of others and what they might be going through in their lives. I think life with a disability can help you see things other miss (and not just because of the lower vantage point from a wheelchair). And the people I’ve met and friends I’ve made because of FA… definitely a silver lining on this storm cloud.
What is a favorite motivational quote of yours? “I have these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33 (ESV)
What is a piece of advice that someone with FA has givn you that encourages and inspire you? My dear friend, Holly LeBlanc, shared with me what someone once told her, “Don’t let FA make you bitter, let it make you better.” Holly lived that and her example will always be encouragement and inspiration to me.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Live your life. And I’m not saying that in the super cheesy, fairytale way that can often sound, but instead with a firm grip on reality. It will be hard. It will be disappointing and messy and confusing. BUT that’s not all it will be! There will also be joy and excitement and love. Even if life looks different than you thought it would… Different is not the opposite of beautiful. Live your life.
What is the first thing you want to do when a cure/treatment to FA is found? First thing? Cry. Definitely. Then laugh and go on vacation.