Ohio native Elizabeth Hamilton felt her world flip when her younger daughter’s health unexpectedly declined. It took six hospitals in five different cities and three states to obtain the diagnosis of Friedreich’s ataxia in 2020. A licensed social worker, Elizabeth believes that relationships are a healing force, and most problems can be solved if you have the right tools and the right people. Life takes unexpected turns, so we must take a moment to reexamine where we are and recalibrate.
Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital…
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When our daughter Amelia first started showing symptoms of Friedreich’s ataxia (FA) and we headed off on our diagnostic odyssey, something else important happened: The laughter was sucked out of our home. I didn’t notice…
Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life…
After 15 minutes on hold, I hesitantly opted for a callback when an operator was free. Though I am sure this feature was created with the best intentions, it is a one-time pass. Meaning that I am committed to…
I love systems. From a professional standpoint, they fascinate me. I spent 20 years working as a social worker within a large system where I “grew up” professionally. Even when that system was frustrating, I understood it. I developed…
I have a confession: I’ve made some pretty big mistakes in my life. They were never intentional, but they were still harmful. They involved silver linings, overly positive thinking, and a perpetual need to immediately fix things. Does any…
When my children were young, one of my favorite moments was story time before bed. Nothing felt better than having a child under each arm with a good book in the middle. I know that the lessons from…
I love my “FAmily.” The network of incredible individuals that Friedreich’s ataxia (FA) has brought into my life since my daughter’s diagnosis has been such a blessing. I often say, “I hate this disease, but I love my…
“Mom, come look at Amelia! It’s hilarix.” The gap-toothed smile of our then 6-year-old warmed my face, as did her inability to pronounce the word hilarious. I peeked around the door frame and immediately understood the complexity of what…
As I stared at my fists gripping the steering wheel, I realized my muscles could not squeeze any harder. There was an absurdity here. I was white-knuckling my steering wheel, and my car was in park. The call that…
As I raised the phone to my ear, I immediately heard crying. My friend and former co-worker was on the way to a family emergency and was looking for help. As a social worker, I balance the need to…
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