My Darling Disability - a Column by Kendall Harvey

Life is full of teachable moments, which are opportunities to share one’s experience, wisdom, and advice. When I became a parent 10 years ago, I anticipated being confronted with countless such opportunities. But I recently found myself uniquely qualified for a particular teachable moment. Because of my Friedreich’s ataxia…

Guilt is a plight of the human condition that comes in many forms. I wrestle with it often. One common form, for example, is “mom guilt,” a topic that inspires countless books, articles, social media posts, texts among friends, and so on. I grapple with mom guilt almost daily.

As I’ve grown more physically disabled with Friedreich’s ataxia (FA), I’ve developed a new ability: knowing quickly how to address a stranger’s concerns about my disability. Whether it’s a curious child inquiring about my walker, an older person curious about that or other mobility aids, or a fellow…

I’ve been living with Friedreich’s ataxia (FA) since 2013, and I’ve been a mom since 2014. FA is progressively degenerative, and I’ve slowly become more disabled as my children have grown up. I began using a walker full time in February 2019, when my son,…

I recently wrote a column detailing my initial thoughts about the latest chapter in my Friedreich’s ataxia (FA) story: the process of accepting that I need to transition to a wheelchair. This shift is incredibly daunting, not only physically, but emotionally, logistically, and financially. Where do I start?…

The Friedreich’s ataxia (FA) transition I have dreaded for over a decade is approaching, and I am beyond overwhelmed. Despite my best efforts, adaptations, precautions, hopes, fears, and routines, I think the transition to a wheelchair is right around the corner. You might be asking, “Why do you…

I’ve heard and read so much about the topic of fear, yet I still wrestle every day with my own fears related to Friedreich’s ataxia (FA). I fear for both my present and my future. I’m afraid of falling. I’m scared I’ll be injured. I fear being judged,…

Like many Americans, I recently got caught up in the Netflix docuseries “America’s Sweethearts: Dallas Cowboys Cheerleaders.” I love it for several reasons, but mostly because I’m from Texas and have a cheerleading background. Before Friedreich’s ataxia (FA) forever changed my life when I was 25, in…

I’ve noticed that one-liner advice tends to stick with me, such as “Treat others how you want to be treated” or “If you don’t have anything nice to say, don’t say anything at all.” I’m sure I’m not alone in this. Since I’ve become a parent, I frequently catch myself…

As with most vacations, I knew I’d be in for a lot of walking when we took our children to Boston this summer. That meant I had to think about which mobility aid I should bring after considering safety, practicality, transportability, and access. I first visited Boston in 2011…