Columns

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…

I love systems. From a professional standpoint, they fascinate me. I spent 20 years working as a social worker within a large system where I “grew up” professionally. Even when that system was frustrating, I understood it. I developed a new appreciation for the challenges of such systems as…

I was recently driving in an unfamiliar city one night after work. As I exited the freeway, I noticed that the headlights behind me abruptly entered my lane and were right on the rear of my car. After realizing the other vehicle wasn’t law enforcement, I wondered if I’d inadvertently…

Activity is a basic physiological need of all living things. For humans, it goes right alongside food, water, and air. And for people like me, who are living with Friedrich’s ataxia (FA), that activity must take the form of intentional exercise. Time out of the day must be…

I have a confession: I’ve made some pretty big mistakes in my life. They were never intentional, but they were still harmful. They involved silver linings, overly positive thinking, and a perpetual need to immediately fix things. Does any of this sound familiar? Perhaps you’ve done something similar. My youngest…

I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time…