Columns

I celebrated a birthday toward the tail end of Rare Disease Week, matching my mother’s age on the sticky summer night when she brought my sister, Taylor, into the world. It’s been decades since our family of four became a family of five, and yet I haven’t forgiven my…

In January 2022, I had major surgery on my left ankle. Afterward, I spent the better part of a year relearning the simplest mechanics of walking and, later, running — the sport that saved my life when my little sister was dying from CLN1 disease (Batten disease). That’s why…

My husband and I are renovating our primary bathroom and have been using the Jack-and-Jill bathroom down the hall since early December. The Jack-and-Jill bathroom’s scant coastal decor features a small shelf filled with sweet-smelling soaps, bath beads, and a beach-inspired picture frame. Behind the glass, three women sit on…

I’ve always loved the Christmas season. But Christmas, like other holidays, can be hard because it delivers a stark reminder of what — and whom — we no longer have. And I can’t help but think about the fact that this will be my fifth Christmas without my sister.

Have you ever celebrated Thanksgiving without turkey? Maybe you don’t like the taste of America’s famous game bird, or perhaps it’s just not worth the work. But what is Thanksgiving — a holiday focused on food — to someone who can’t eat? More than four years after her death, I…

My sister, Taylor, always loved All Hallows’ Eve. But the beginnings of blindness hampered Halloween fun almost a year before we knew she had CLN1 disease, or Batten disease. I remember that crisp, cool autumn night in 2005 almost like yesterday: Taylor often stumbled while trick-or-treating and occasionally…

In the terminal days of August, as summer made one last stand, I completed a couple of two-mile jogs on the streets of the South Carolina border town I’ve called home since 2016. I used to regularly log 60-mile weeks, so in one sense at least, these abbreviated “runs” shouldn’t…

I didn’t have high expectations when I slipped into the crowd at the starting line of this month’s Beach to Beacon 10K race in Cape Elizabeth, Maine. After all, I hadn’t gone for a run in seven months following major ankle surgery. Instead, I spent most…

At 8:12 a.m. on Saturday, Aug. 6, about three hours after the sun’s first light washes over the coast of Maine, I’ll take the first steps in the back half of my quest to complete a race in all 50 states. But I won’t be racing. When I won the…

I recently stumbled across a LinkedIn post by Joe Monaco, a business development manager at Motorola. But Joe’s words, which garnered more than 206,000 likes and 3,100 shares in just two days, had nothing to do with his day job. Instead, they accompanied a photo of two of his…