Columns

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…

Friedreich’s ataxia (FA) is a cruel diagnosis in several ways, and those ways seem to frequently morph, multiply, and momentarily take over my life. When I first started to learn about FA and my particular prognosis as a late-onset patient, I concentrated on the disruption to my walking ability…

This year is an interesting time for those with Friedreich’s ataxia (FA). There are plenty of reasons to be hopeful for a treatment for FA, more than ever before. Finally, the first treatment seems on the horizon for this damned degenerative disorder. However, it’s important that the FA community be…

I fell head over heels in love with my husband, Kyle, when I was 16 years old. By 18, I knew I would marry him. Then it came time for college, and though we didn’t go to the same university, our schools were only 20 minutes apart. We continued dating throughout…

I’ve had a central theme rolling around my mind recently: Perhaps I overcomplicate things. More often than not, to be completely forthcoming, the exact question has been, “Do we overcomplicate things?” But who am I to question the human race about how we may or may not complicate certain situations?…

During the Fearless Mom 2022 conference in February, I learned about an interesting phenomenon from keynote speaker, clinical psychologist, and consultant Dr. Robi Sonderegger. According to Sonderegger, the English language is one of the few languages in which we describe our feelings or our pathology as a state…