When you live under the banner of a degenerative disease such as Friedreich’s ataxia (FA), you become well acquainted with fear. You fear what your body has in store for you tomorrow, next month, next year, and the years after that. You fear falling or accidentally doing something that…
Columns
Today at work, my small team visited two of our stores and facilitated friendly competitions in the grocery sport of bagging. July is the beginning of our monthslong pursuit of identifying the best bagger of our company, Nugget Markets, so we can send them to represent us at the national…
In a conversation with a friend, she said, “I guess everything happens for a reason.” Hearing this really bothered me, even though that phrase is pretty ubiquitous; I’ve heard it repeatedly. Behind the phrase is the message that everything will be all right. Sometimes, we desperately need to hear this…
Friedreich’s ataxia (FA) is incredibly rare. So rare, in fact, that I’d never even heard of it before I was diagnosed with it in 2013. Getting that rare, 1-in-50,000-people diagnosis (given to an estimated 2,500 people in the United States) has had a huge impact on my…
I thoroughly enjoy the unexpected twists and turns and the adrenaline rush of roller-coaster rides. I’ve loved roller coasters since I was old and tall enough to ride them. My first experience on one, however, before I was tall enough to technically be allowed to ride it, terrified me. It…
Life with Friedreich’s ataxia (FA) can feel daunting as we face hardships, struggles, and countless tribulations. Most FA patients I know have a positive attitude and try to keep moving forward despite what FA throws in our paths. We don’t necessarily like our diagnosis, nor do we like…
About five years ago, I packed about three DVDs before my buddy and I left for a weekend at a fishing camp. We didn’t plan on watching many movies, I just brought them in case we got bored after the sunset and the bayou mosquitoes chased us indoors. When that…
I can’t exactly put my finger on why, but for a long time, I thought success had to do with how many friends I had. How many of them called me by name and went out of their way to say hello at social gatherings was important to me. But…
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…
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…
Recent Posts
- ‘Iron overload’ in mitochondria linked to heart damage in FA: Mouse study
- Getting the flu always makes my FA symptoms worse
- Yet another fall results in nose reconstruction surgery, part 2
- What it’s like on the hard days, when hope comes up short
- Skyclarys improves nerve cell function in new Friedreich’s ataxia lab study