Columns

As my battle with Friedreich’s ataxia (FA) and my progressively diminishing physical abilities — primarily balance, coordination, dexterity, and energy — wages on relentlessly, I’m forced to adapt. While I’m used to depending on mobility aids, as I’ve done since February 2019, I often notice the reactions of others…

My husband, Dave, and I had a tough year in 2023, when Dave lost both parents. Our grief has lessened, but we’re still working through it. At times our ability to grieve was blocked because Dave and his siblings were trying to figure out what each parent would’ve wanted in…

I loved pop-up books as a child. The pieces that moved — delicate structures jumping off the page — captivated me, as did finding all of the flaps with hidden pictures. So it was no surprise that when our two girls were young, I littered our house with them. These…

People often speak about the strength it must take to be a young person living with a progressive neurological disease. While I was diagnosed with Friedreich’s ataxia (FA) at age 25 and have found that yes, it takes every ounce of my strength sometimes simply to check off my…

Unsurprisingly, after steering my wheelchair into a wall for the fifth time that day, I found myself amid a temper tantrum. For me, these usually involve yelling curse words at Friedreich’s ataxia (FA), the disease I have. In this particular meltdown, I wanted to ram my wheelchair into the…

I’m frequently asked how I handle the relentless progression of Friedreich’s ataxia (FA) with a smile on my face. My answer is simple: I don’t do it on my own. Without the support of all the wonderful people in my life, I’d still be that scared and confused statue…

I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind me of the Friedreich’s ataxia (FA) community, but it did. That’s because we’re also a…

Today is another brutally cold January day here in Massachusetts. Both my Friedreich’s ataxia (FA) and my wheelchair use mean I don’t spend as much time outside as I’d like. Why? FA limits my outdoor time when it is either super hot or super cold. Right now, the…

Friedreich’s ataxia (FA) is progressively degenerative, and its reach is far and wide. What started as trouble staying on my feet during sand volleyball matches became an inability to walk unassisted 10 years later. With that progression, to say that FA has demanded adaptation from me would be an…

Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed. For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to endure lots of difficult testing. Today, the FA gene is identified through a blood or…

This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor…

“The Real Housewives of Beverly Hills” is one of my pleasures. I’m intentionally not writing “guilty pleasure” because I don’t feel guilty for watching the show, even though it’s silly and does nothing for me except that I enjoy their petty arguments and hurts. But cozying up with…