I’m frequently asked, “What happened to you?” The person asking usually points at my walker. What they’re really asking is, “Why are you using a walker?” People don’t tend to think of an obvious explanation as to why a healthy-looking, 34-year-old woman is using a walker, so they just ask…
Columns
I eagerly kept refreshing my inbox. My local doctor’s office had called about 20 minutes earlier, letting me know that it had received my genetic test results and would forward them to me via email. As I wrote in a previous column, I needed updated results to participate in…
Greetings! These summer temperatures are getting close to the triple digits down here in Alabama, and honestly, if it doesn’t involve air conditioning, I’d rather not go. I have a 6-year-old who loves baseball, and I love him, so you’ll find me most evenings at the ball field with a…
I often write about how important it is to have a strong village supporting you in life — not only for big things like parenting and disabilities caused by Friedreich’s ataxia (FA), but for all the ups and downs. I’m incredibly blessed to have several villages, including my…
The progressive nature of Friedreich’s ataxia (FA) has been a common topic for me lately. From talking with a friend over dinner about changes I experience to discussing on my podcast the many ways in which FA affects various people, I realize that this theme will…
I am the first to admit that I am a Disney fanatic. I have always loved the replicated ideas in Disney movies that friends and family can come together and discover strengths they never knew they had to help good triumph over evil. So, naturally, I love going to Disney…
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…
Recent Posts
- Redefining independence when faced with Friedreich’s ataxia progression
- Wearable sensors accurately detect FA in walking test, study shows
- I can honor my heritage by bravely managing my FA symptoms
- When I focus on what I can control, problems become opportunities
- Researchers spot new ultrasound patterns across peripheral nerves in FA