Columns

Sometimes people ask me what I do with myself all day. I know the question is probably meant casually, maybe even kindly, but it lands hard. I’ll feel myself get flustered, the way I often do when a question carries an assumption I cannot quite name in the moment. Before…

Today, the cabinets, tiles, and other materials for our new kitchen were delivered, and suddenly the renovation feels real. I love the cabinet colors, flooring, backsplash, and everything else I picked out. But now that it is all here, stacked in boxes and waiting to be installed, I keep worrying…

At the end of June, I sustained a fall that resulted in a leg fracture. It happened while boarding the plane home from a fabulous vacation with my husband, my children, and my parents. My son and daughter were very concerned about what, if anything, was broken. After we…

Aug. 13 marked eight years since I first started working with Bionews as a columnist for Friedreich’s Ataxia News. Anniversaries have a way of making us look backward, and this one has me thinking about how different my career looks from the one I once imagined before Friedreich’s ataxia…

My husband, Dave, and I recently drove by the mansion where we were married and had our reception. Back then, it was a beautiful, grand old stucco building with a yard behind it where we had our ceremony and a breathtaking view of the ocean. We were lucky: It was…

Enduring three fractures over nine months — my femur in September, my nose in February, and my fibula in June — has certainly taken its toll on me. Not only are fractures and recoveries disruptive, painful, and exhausting, but they’re also emotional for me as someone with Friedreich’s ataxia…

Ever since I was a teenager, my mission has been to leave this world a better place than I found it. I have done my best to do so in small ways, like thanking and smiling at the waiter serving me shrimp scampi, and in bigger ways, by designing a…

Lately, I’ve noticed a word used very frequently in casual conversations. It can have multiple meanings, depending on the context, but in my case, as someone living with visible differences, it seems to imply a problem. In public, I’ll hear kids ask their parents, “What’s the matter with her legs?”…

Recently, my sister Lisa asked me, “Why do you always write your column about sad things? You’re a happy person.” I had to think about that. I think part of the answer is that I write about Friedreich’s ataxia (FA), the biggest and most ever-present challenge in my life.

Sometimes when I think my own little victory is simply about existing, I imagine myself answering questions that my 14-year-old self would’ve loved to have asked if he could see me now. I’m talking about the kid who was just beginning to understand Friedreich’s ataxia (FA) after reading about…

As I write this, noise fills my house: the nail gun, the power saw, and the construction workers’ radio. I can feel my hard-earned routine for living with Friedreich’s ataxia (FA) slipping out of reach. I keep reminding myself that each bang and disruption brings us closer to an…

My family, including my parents, recently took a grand vacation. We started in West Yellowstone in Montana, where we watched a juvenile black bear hunt a squirrel, swim across a river, dig for grubs in a downed tree, and relax in the sun. We also saw waterfalls, canyons, thermal pools,…