Columns

“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought,…

Living with Friedreich’s ataxia (FA) means I’ve learned to expect the unexpected. Sometimes when everything seems lined up just right, something completely out of my control will change the script. This week, that something was a spider bite. It started small, a mark on my arm I noticed when…

I am entering the joyful, frenetic, and sometimes frustrating fundraising season for my Friedreich’s ataxia (FA) patient organization, the Friedreich’s Ataxia Research Alliance (FARA). Every year, I go into it with big numbers in my head about how much money I am going to bring in. Deep down,…

My husband, Dave, came home the other day to me screaming cuss words in the bathroom. This time, I was yelling at my bladder, which was threatening to explode before I could get to the toilet. Dave strode past the bathroom without greeting me, as he usually does. These very…

Two years ago, our family attended an event hosted by the local chapter of A Kid Again, a nonprofit dedicated to providing monthly adventures for families raising a child with a life-threatening illness. We were invited because in 2020, our youngest daughter, Amelia, then 8 years old, was diagnosed…

My family and I recently started streaming season 20 of the popular show “America’s Got Talent,” also known as “AGT.” I love seeing my children react to the beautiful singing, athletic dancing, mind-blowing magic, edge-of-your-seat danger, and much more. To quickly summarize, all acts must audition for four judges, who…

I imagine young people with Friedreich’s ataxia (FA) must search the internet to learn more about their diagnosis. Maybe they will come across this column. So this week, I will write to them. When we are young, our friendships are central to our lives. But after I was…

I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…

I recently watched a video that showed people dancing, hugging, and laughing together, their sense of community shining through. The video, which was shared on Friedreich’s Ataxia News‘ YouTube account from April’s Annual Ataxia Conference, filled me with both envy and pride. When I was diagnosed with…

I’ve been mostly using a wheelchair for more than eight months, after relying on a walker or rollator for seven years, so I’ve done a fair amount of explaining to people what Friedreich’s ataxia (FA) is and what living with it is like. Explaining FA — what…

Since writing my last column, I’ve been struggling to find hope after being denied participation in a gene therapy clinical trial. That may seem strange coming from me, since most of my writing over the years has been about the stubborn kind of hope that people living with…

Today I went into my kitchen to make a chicken sandwich with cheese, which sounded like the perfect idea for lunch. Fresh bread, some lettuce, a little mayo, salt and pepper — all these ingredients would make my sandwich sing. First, I pulled the ingredients out of the fridge. My…