Columns

Mother’s Day is a tough one for me. My husband, Dave, and I lost a much loved, wanted, and planned-for baby in 1999. My mom died in 2016, and Dave’s mom died in early 2023. So we decided to honor Mother’s Day this year by going to Portland, Maine.

The pig was supposed to fly, but fear was holding her back. One summer night several years ago, I was watching the movie “Sing 2” with a child tucked under each arm. Both of my daughters were encouraging the character on screen to jump. Rosita, who my girls were…

I knew in my bones that something wasn’t right with my body. I wanted nothing more than to find out what was happening, understand why it was happening, and learn what I could do to stop it. In 2013, I began my desperate search for answers. I had no idea…

My husband, Dave, and I love to watch the TV show “Top Chef,” which we stream on Peacock on Friday nights. It’s a little treat to end the work week. We’re usually eating dinner as we watch — not the most mindful practice, but enjoyable. Our…

“I know you!” The stranger’s surprise utterance greeted me at the elementary school of Amelia, my youngest daughter, who’s now 12. It happened years before she was diagnosed with Friedreich’s ataxia (FA). This type of encounter happened occasionally: A random stranger would recognize me, which caught me off…

I was in high school when I first encountered a famous line by Shakespeare’s Hamlet: “There is nothing either good or bad, but thinking makes it so.” At the time, I thought it was relativistic nonsense. I believed the world was divided into good and bad, and confusing the…

Almost every morning I wake up intending to eat well. Sometimes I do eat healthily, sometimes not. This sunny May morning I plan to make myself a berry smoothie with lots of healthy stuff in there like flaxseed and Greek yogurt. A healthy smoothie is one of my go-tos in…

The smooth, yellow rivets on the school bus caught my eye as it pulled up to pick up my 11-year-old daughter, Amelia. How often had I stared at them and not seen them? Then I noticed the grinning face of a young child waving at me through a window of…

I don’t know if it’s self-preservation or just my personality, but I’ve become quite the creature of habit. Lately I’ve noticed that when I’m separated from my habits, I either thrive or shut down. Breaking my routine and the comfort it provides occasionally reminds me that I’m more than…

I was struggling to transfer unassisted from the couch into my wheelchair when I slowly fell on the floor. I worried that my osteoporosis-weakened bones had broken, even though I wasn’t in pain. Recent experience had taught me that broken bones can be very painful: I’d broken both my…

“It’s not accessible enough.” That thought passes through my mind regularly as I look at the world. Not because of my younger daughter, Amelia, who has Friedreich’s ataxia (FA), but because of my mother. I’ve never fully understood my mother’s disability, and neither have many of the medical…

Now that I’ve lived with Friedreich’s ataxia (FA) for a decade, I’ve found that I get into the habit of explaining my journey in bullet points to those who ask. I frequently describe my situation by saying such things as “I’m unfortunately fully dependent on my walker. It isn’t…