Columns

I have a secret: I talk to mirrors. Six years ago, I would’ve pulled out a Diagnostic and Statistical Manual of Mental Disorders with some concern about that, but much has changed since then — one of the biggest changes being my daughter’s diagnosis of Friedreich’s ataxia…

Living in a disabled body in a predominantly able-bodied world is a rare experience that, frankly, I never anticipated having. Especially in my 30s. But thanks to my progressing Friedreich’s ataxia symptoms, it’s an existence I’m now, unfortunately, getting more and more accustomed to every day. While many of…

From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking my immediate family members to share their thoughts. My columns have…

I’ve always valued people’s advice, especially when I ask for it. However, nothing beats living and learning. Due to the progressive nature of Friedreich’s ataxia (FA), I’m constantly learning. As I age and my FA symptoms worsen or become more noticeable, I’ve realized that just as I…

Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was incredibly overwhelmed, to say the least. I’d never…

“Here, can I help with that?” The calm, low voice interrupted my ongoing battle with the payment station in the parking garage at our local children’s hospital. My dollar bills and credit cards had been rejected, and I was fishing in my purse for quarters while words were streaming out…

When I was diagnosed with Friedreich’s ataxia (FA), my greatest worry was how it would affect my future. What would living with a disability look like? What would FA add to my future? What would it take away? Now that I’m nearly a decade into life with…

As I sat in the darkened movie theater recently, the screen showed a colossal battle filled with too much reliance on CGI. I yawned and checked my watch. Not even halfway into the movie’s run time and I was already losing interest. I was surprised that the scene bored me…

I’ve recently been asked a couple questions that have stayed on my mind. As someone with Friedreich’s ataxia (FA), I receive many questions regarding my mobility device and overall disability. I’m often asked, “Why do you use a walker?” And the politically incorrect way of posing the same question,…

In my experience, much of what it takes to be a mother is the opposite of what’s required to live with a disability. As a mom, I constantly pour my all into my family. I manage the calendar and set the tone for the household, on top of all…

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…

Living with Friedreich’s ataxia (FA) has created for me a complex relationship with the concept of help. I believe it’s important for everyone — not just people with disabilities — to humbly and graciously learn how to ask for and accept help. Fortunately (and unfortunately), FA rewrote the…