I recently read a column by my colleague Ben Hofmeister for Multiple Sclerosis News Today. He wrote that, for him, disability pride is about celebrating the advocates who came before us and who made the Americans with Disabilities Act possible. He also made the point that…
Columns
“My mom is kinda crazy,” my daughter Amelia said with a half giggle while talking with one of her friends. If you ask me how often that’s said, my response would be “a lot.” Though sometimes the reference is about how far I’ll go to advocate for her, I’ve…
I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a vast understatement. For example, when I was 9 months old, I could walk. I know I…
My daughter Amelia, age 12, almost missed being diagnosed with Friedreich’s ataxia (FA) because of me. I think about that sometimes when I need reassurance that I’ll put Amelia’s needs before mine while navigating her medical care. It was the summer of 2020, and I was sitting with…
I’ve heard and read so much about the topic of fear, yet I still wrestle every day with my own fears related to Friedreich’s ataxia (FA). I fear for both my present and my future. I’m afraid of falling. I’m scared I’ll be injured. I fear being judged,…
My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not curable, disorder in which one or more of the fingers is permanently contracted. People with DC…
Summer is here! In our home, that means fun things like trips to the pool and sleeping in. It also requires us to constantly be careful about the temperature in our house and keep an eye out so that our daughter Amelia doesn’t overheat. Even before she was diagnosed…
Like many Americans, I recently got caught up in the Netflix docuseries “America’s Sweethearts: Dallas Cowboys Cheerleaders.” I love it for several reasons, but mostly because I’m from Texas and have a cheerleading background. Before Friedreich’s ataxia (FA) forever changed my life when I was 25, in…
As our parents know, those of us with Friedreich’s ataxia (FA) persevere through all of the challenges life throws our way — and there are many. I’m proud to belong to a group of such scrappy and fierce people, even though none of us would’ve chosen to live this…
I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to replace it before it gets to that point. If you want to save for yourself or…
From the moment I moved out of my childhood home, traveling became a passion of mine. It wasn’t just about seeing new places or tasting unique cuisine. (Well, maybe food had a little to do with it.) It was mostly about seeing different ways of living and meeting new people.
I’ve noticed that one-liner advice tends to stick with me, such as “Treat others how you want to be treated” or “If you don’t have anything nice to say, don’t say anything at all.” I’m sure I’m not alone in this. Since I’ve become a parent, I frequently catch myself…
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