Defining Yourself - a column by Jean Walsh

This morning, I rolled into my office and found papers scattered across my desk. It looked as though a mischievous sprite had emptied the file cabinet. Unfortunately, I knew the sprite was me. Being organized makes life with Friedreich’s ataxia (FA) easier. When everything has an accessible home, I…

Last week, I sat with my service dog near my home’s entrance, waiting for public transportation to take me to a doctor appointment. It was a cool fall day with drizzling rain — the kind of day that made me want to cancel the appointment and cozy up by the…

A few days ago, I celebrated my birthday. I love a party, so I love this occasion. It’s a reason to be with friends and family and eat cake. It is one of my happy places. My birthday is also a reminder of my journey with Friedreich’s ataxia (FA).

About a week ago, I sat in my husband Dave’s car with butterflies in my stomach. My new service dog, Fresco, sat calmly in the back seat. Fresco and I were about to take the public access test for service dogs. I didn’t want to do it. After only…

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…

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…

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…

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.

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…