Columns

I wrote this speech last week for a group of middle-schoolers. I like the topic and think it is relevant for people like me, decades past the age of junior high students. Now that the school year is coming to a close, students are about to make a big transition:…

Since the beginning of my journey with Friedreich’s ataxia (FA), worries about the future have plagued me. Would I have a future? What would it look like? As I learned more about FA, one word stood out: progressive. Everything boiled down to progressing symptoms: My balance and coordination…

Welcome! Summer is not officially here yet, but the heat has definitely arrived in Alabama, where I live. The days are getting longer, and the craziness of the end of the school year is in sight. It seems like time slows down just a bit once schedules open up and…

It’s not uncommon for me to throw myself pity parties. Living with Friedreich’s ataxia (FA) is a constant battle. I have to choose to be strong every moment of every day and to keep fighting for independence, normalcy, safety, and hope. It’s exhausting to maintain the defensive wall that…

When I was younger, I believed in destiny wholeheartedly — that my life unfolded with very little input from me. I was just a passenger on the journey of my life, so no matter what I did, I still barreled toward a future written long ago. My belief in destiny…

I met a friend for dinner recently, and we talked about the changes I’ve observed in my capabilities in the last several months. Not only did we have a pleasant conversation, but in celebration of Cinco de Mayo, we also enjoyed a margarita with dinner. One question he asked me…

Throughout my journey with Friedreich’s ataxia (FA), I’ve wrestled with people calling me an inspiration. My feelings about it have changed and progressed just as quickly as my disabled body. When I was diagnosed with FA in 2013, my symptoms were relatively mild. The only things I couldn’t do…

Friedreich’s ataxia (FA) has changed so much about who I am. The physical effects have changed how I think, act, feel, and relate. Some of the changes are good, some are bad, and others are just complicated and hard. My parenting abilities have changed in all of the above ways.

Somewhere, it’s like a whistle has been blown urging me to get off of the sidelines and into the game. Finding a treatment for my rare disorder is a lot like a professional football game. Crazy metaphor, I know. The progression of Friedreich’s ataxia (FA) ended my athletic career right…

One of my favorite books to read to my children is “What Do You Do With a Problem?” by Kobi Yamada. In it, the book’s main character suddenly finds himself facing a problem. He worries about “what would happen, and what could happen.” The more he worries about his…

I’m often entertained every time I search online for any “national day of” lists. I don’t know who is in charge of them, but they seem to change often, and no one source agrees on every recognition. With May just around the corner, I am proud of a few things…

Hello there! This time of year, the weather can be very unpredictable. I always associate spring with signs of new life sprouting up all around, but tend to forget it takes rain to make things grow. As the saying goes, “April showers bring May flowers.” Unfortunately, along with the rain…