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I spent most of my day last Saturday picking things up, or rather, having my service dog, Wendy, pick things up. Exploding head emoji. Even though sweet Wendy always wags her tail and is happy to pick up an object when we fail to transfer it from her to me,…

My family and I are obsessed with the singer-songwriter Forrest Frank. His music is catchy, happy, positive, and full of bite-sized Biblical truths. We especially enjoy listening to his song “No L’s” before sporting events to remind ourselves that the outcome of a game is a matter of…

I didn’t expect a Frankenstein movie to move me, yet here we are. When I saw Guillermo del Toro’s “Frankenstein” on my birthday, I anticipated tension and a few unsettling moments in the retelling of Mary Shelley’s familiar story with modern effects. Instead, I was met with something…

Last Monday morning, I sat up in bed to take my thyroid pill. But I accidentally dumped the pills into the covers. I managed to scoop most of them back into the bottle and popped my pill into my mouth. I figured I’d find the stray pills when I got…

Life has not been easy lately. On top of the constant daily struggles with Friedreich’s ataxia (FA) and its various symptoms that I must adapt my life to accommodate, hardship has surrounded my village. I fractured my femur in September and required surgical repairs. Our Great Dane, Hank,…

My husband, Dave, and I worried about the possibility of rain on a recent cool, cloudy October Sunday. He was getting his bike ready for the 26-mile rideATAXIA’s Philly ride. If it had rained, it would have been slippery for a touring bike, like the one Dave and many of…

“You can’t miss us. We have a huge metal ramp attached to the front porch,” I explained while giving directions to our home recently. That particular line made me both chuckle and sigh. Getting the ramp installed was emotionally challenging. The former landscaping, once vibrant with spring bulbs and cheerful…

Yes, Friedreich’s ataxia (FA) is hard. Yes, its widespread symptoms are always on my mind. When I am at social events, I am overwhelmingly aware of my disability and the lifestyle adaptations it demands. Despite all of that, it is not the only thing I am capable of discussing,…

Surprises fuel me in life with Friedreich’s ataxia (FA). I normally don’t celebrate my birthday for more than a day, so I didn’t expect a party in September, especially considering that my birthday isn’t until mid-November. I’m turning the big 4-0 this year, but I’d planned to have a…

As my Friedreich’s ataxia (FA) symptoms have progressed, my abilities have deteriorated, forcing me to adapt. My progression has been fairly steady and predictable, all things considered. Except for temporary circumstances like injury or illness, I usually know what the next morning will bring, physically. When it became…

Last Monday, I decided not to listen to political podcasts. I get FOMO (“fear of missing out”) when it comes to political news, so I keep listening to it, even though it doesn’t nourish me. In fact, things I have little or no control over tend to upset me. I…

My son, Brooks, turns 11 this week. Birthdays tend to make me nostalgic, especially my children’s. As the day approaches, I reflect on the passing of time and the coming and going of phases. One of the most memorable phases of my parenting journey coincided with one of Brooks’…