On a muggy Fourth of July in Georgia in 1993, my husband, Dave, and I walked along the side of the road, returning to our car after watching fireworks. There weren’t any sidewalks, so I walked on the edge of the road to avoid tripping in the dark while Dave…
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At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see…
Like many of us who get diagnosed with a scary illness, the question of “why me?” ran circles around my head. I chased that voice hard, wondering what I did to deserve Friedreich’s ataxia (FA). The answer I came to and always give that voice in my head is…
What pops into your mind when you hear the word “strength”? I’m guessing that your answer will be based on the people around you. Anyone who was a child in the 1980s and ’90s will likely think about the Arnold Schwarzeneggers, Hulk Hogans, and Tom Cruises who filled the movies…
Navigating life with Friedreich’s ataxia (FA) involves traversing an unpredictable landscape where each step presents new challenges. This year began with particular frustration for me, yet I find solace in the unwavering support of the FA community and unexpected inspiration from the animated film “Flow.” Early 2025 was daunting.
When I was diagnosed with Friedreich’s ataxia (FA) in 1981, I was a sophomore in college. I lived in a newly renovated dorm that was wheelchair accessible, and, naturally, a woman who used a wheelchair lived with us. I did everything I could to avoid her. I remember heading…
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…
Recent Posts
- Yet another fall results in nose reconstruction surgery, part 1
- 5 Oxford research projects are aiming for new Friedreich’s ataxia treatments
- With PRV’s reauthorization, the rare disease community gets a rare win
- Finding grace for the FA caregiver during a long winter
- Finding meaning amid the darkness within