My Darling Disability - a Column by Kendall Harvey

Over the holidays, we spent time with family that we don’t see regularly. I get so wrapped up in my own excitement to see my loved ones that I often forget that they haven’t seen me in a while. Or more specifically, they haven’t seen my Friedreich’s ataxia (FA) symptom…

Lately, I have been falling into a funk easily. All of the “little things” that bother me about life as a Friedreich’s ataxia (FA) patient seemed insurmountably huge and sucked all of my drive away. I didn’t feel joyful or enthused about much of anything except sleeping. So, I…

I was diagnosed with Friedreich’s ataxia (FA) in 2013. At that point, I was still pretty “normal.” I could still do almost everything except walk in high heels or perform well in sports. I was independent and capable. After seven years of symptom progression, I am now disabled. I am…

2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate or plan for. Add in a progressively degenerative disease like Friedreich’s ataxia (FA), which doesn’t pause to consider any external…

Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible diagnoses to rule out. For example, I never knew there was such a thing as gluten ataxia, but I…

When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” for you. When I was 23, I began noticing that my balance was different than it used to be. I…

Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my FA is affecting my current experience and measure it against previous years. This might seem masochistic or like I am…

I am beyond blessed to be “Mom” to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. They are wonderful, healthy, happy, energetic, smart, and funny. I feel a mix of emotions when I watch them run and play. I am so proud of them that it overwhelms…

One of the most difficult parts of using a mobility aid is unavoidably revealing that I am “not normal.” Since becoming dependent on my walker, I feel like I’m constantly broadcasting my most all-consuming source of fear and frustration to the world, regardless of my mood or the people…

Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, fear, and disappointment. Life in Texas is getting back to normal, and our routines are crazy. We went from being quarantined in our house for over…