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Each year, the daughter of one of my friends hosts an annual “Friendsgiving” event the day after Thanksgiving. I’ve never gone because I haven’t met her daughter, but my friend assures me it’s really fun. I love the idea because it reminds me how intentional people must be to build…

I imagine that many homes like ours, especially those with someone who has Friedreich’s ataxia (FA), can become quite loud. It’s common to hear requests shouted across our home, like asking for longer socks or a sweatshirt that was left on the bedroom floor. As my 13-year-old daughter Amelia’s…

For Thanksgiving break, my extended family rented a cabin in a small town in Oklahoma. It was a lovely week to unplug, unwind, play board games, laugh, go on adventures, and enjoy nature. We all agreed we must make the trip again and do it regularly. I truly loved getting…

While walking with my service dog, Wendy, I reflected on a question that’s always with me: Who am I? Even at 63, with more of my life behind me than ahead, this question still arises. I am many things: daughter, sister, wife, aunt, friend, dog mom, rare disease patient, rare…

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,…