My Darling Disability - a Column by Kendall Harvey

When I find myself talking about the hard part of battling Friedreich’s ataxia (FA), the word I use most is “relentless.” FA is a rare, genetic occurrence that causes our cells to betray us with the progressive deterioration of dexterity, coordination, energy, and more. FA relentlessly worsens all of…

In my humble, nonmedical opinion, adrenaline is an amazingly complicated feature of the human body. It always seems to have tricky and unpredictable effects on my ever-changing Friedreich’s ataxia (FA) symptoms. Here’s why I think this: My late-onset FA began exhibiting symptoms that were worrisome enough that I began…

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will not accomplish!” Getting diagnosed with…

We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like if the walls could tell us the story. What celebrations, collaborations, conspiracies, or moments of genius have those walls witnessed?…

They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident and competent adults. As the mom of a nearly 6-year-old son and a 3-year-old daughter, I can certainly confirm that.

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, degenerative, life-shortening disease in any capacity. So much has happened since that day in August 2013, and my seventh…

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family, hard-working, and my best friend. I met my dream guy in high school, and Kyle and…

Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on the coast for a week. We had worked out all of the logistics and packed everything so we could remain…

I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set in our minds that if we could just cross the figurative fence, grass would be greener and life would be better.

With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware of the ticking clock that has started the countdown on my ability to do just about…