I’ve heard it a thousand times: “Experience is the greatest teacher.” And although there’s a lot of truth to that, I’m not sure it covers every situation. I, for instance, often repeat frustrating or disappointing experiences and wonder how I let myself continue the behavior that led me there. In…
Columns
If you’re unfamiliar with Fanny Crosby, allow me to introduce you to one of the greatest poets America has known. After singing one of her great hymns one Sunday as I worshiped at my local church, I later recollected the words and recognized their affinity to this column,…
A nearby candle slowly cloaked the room in the scent of a Christmas tree while my 11-year-old daughter, Amelia, and I sloshed through her homework. My phone lit up with a new memory notification, capturing Amelia’s attention. If you’re unfamiliar with this feature, it pulls photos or videos from a…
As my grandpa always said, “You need the right tool for each job.” Despite this, I always turn to the same tools out of habit when working around the house. My vise grip is almost always close, and I use it all the time. In fact, I often grab…
Before my Friedreich’s ataxia (FA) symptoms began, I was a healthy young adult with active hobbies, big plans, and an extroverted lifestyle. Now, after more than a decade with FA, I’ve seen so much change and many unexpected lessons. Some obvious physical struggles come along with a progressively…
When our daughter Amelia first started showing symptoms of Friedreich’s ataxia (FA) and we headed off on our diagnostic odyssey, something else important happened: The laughter was sucked out of our home. I didn’t notice it at first when a cloud of many hard emotions began…
“Friedreich’s ataxia.” After long months of visiting different kinds of doctors all over my home state, those were the words the neurologist uttered. My family and I had desperately sought a medical reason why I’d begun to doubt and question my functioning, even as my 9-year-old peers were getting more…
Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life upside down. Who’s excited? I hardly remember my parenting days before…
After 15 minutes on hold, I hesitantly opted for a callback when an operator was free. Though I am sure this feature was created with the best intentions, it is a one-time pass. Meaning that I am committed to keeping my phone free, with no bathroom breaks and a limited…
As a mother of two young children, I have a lot of discussions about what’s fair. My son will whine about how “unfair” it is that his sister gets to watch a movie while he’s at baseball practice, and my daughter will complain about how it’s “unfair” that my…
The decade that I’ve been living with Friedreich’s ataxia (FA) has been full of unanticipated highs and lows. It has also been full of chaos, monotony, blood, sweat, tears, laughter, praying, research, victories, failing, falling, rallying, trying again, and celebrating. Amid all of those moments, a few…
I can’t put my finger on exactly what triggered my recent musings about responsibility, but apparently, we can’t escape our thoughts. Trust me, I’ve tried. My last column focused on the heightened sense of responsibility I’ve learned to accept as a disabled individual. Since then, the topic has come…
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