Columns

I’m writing this column on a tough and emotional day — the anniversary of the 2018 ALS diagnosis for my late husband, Jeff. For the day I might have planned, I’d be hiking up Old Rag Mountain in Virginia, perhaps sharing the pretty view on social media,…

My 16-year-old-daughter, Sara, watched a TED Talk by Angela Duckworth on grit in her AP Language class. Sara was not impressed. “I don’t want to have grit,” she declared. Many of her high school friends are taking college math classes while she is on the standard math track. She sees…

I love scrolling through the short videos people post on social media with tips and tricks to help make everyday tasks easier. Commonly called “hacks,” these are easy shortcuts that often involve repurposing items found around the home. For people like me who live with ALS and the…

I contend that most people diagnosed with physically debilitating illnesses later in life previously had a favorite activity that consumed much of their time. Cycling was that for me. My cycling life ended nine years ago, and even then, I reluctantly stopped because of my inability to unlock my…

On my daily walk, I take a detour from the field and into the woods because I’m on the hunt for birch bark and pine cones. It’s the season for collecting natural accents to use on my Christmas wreaths, which I’ll start making in a month. I sell them…

Hoo-wee! Am I glad summer is over. Not because of any changes or challenges from my ALS, but because of a series of unexpected life events. This year, my summer months felt as if I were on an airplane that hit turbulence, and the “fasten your seat belt” sign…

ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed. When people ask about the process of Jeff’s ALS diagnosis, I usually recount the chronological story…

After college, I worked at an after-school youth program. I loved my work, and I made ends meet on my modest salary. I met and married my husband, Todd, who had a good job, so when we started a family, I decided to stay home with our children. I…

You might assume from reading my column over the past few years that I’m the model of positivity. I certainly try to be, but sometimes I’m not. Like many who live with ALS, I also have moments of frustration that open the door to me saying the…

Often, as we discuss the ravages of disease, we give short shrift to one of the most vital aspects of debilitating illnesses like ALS. We offer our sympathy, prayers, money, remedies, and sentiments, which are all very positive and appreciated. What’s missing, though? A little imagination and a broader…