Columns

I’m writing this column from vacation in a place I once traveled with my late husband, Jeff, long before he was diagnosed with ALS in 2018. It was a dream trip of his, and we went together for his birthday more than a decade ago. On this trip, we…

A couple months ago, I planted zinnia and strawflower seeds in two plastic bins and set them in the sunlight under our patio window in my dining room. I’ve grown vegetables from seeds in the past, but never flowers. Vegetables feel practical because food is necessary to sustain life, while…

I’ve recently started meeting with a therapist through telehealth to try to better cope with life as my husband’s caregiver. Todd is homebound now, so we have been more isolated, which is hard on my mental health. It’s stressful to always be on duty, ready to move an arm,…

Earlier this month, I played host to a two-week online event in the ALS News Today Forums: “Funny Moments: Finding Humor in ALS.” I was anxious about it and wondered if members would even bother to participate. Boy, was I wrong. But I’m getting ahead of myself. Let’s…

Last summer, a large limb on our old mountain ash died, and this spring, our teenage son cut it off, leaving only one limb coming out of the stump of a once beautiful tree. “Is it time to take it down?” I asked my husband, Todd. “I think so,” he…

My husband, Todd, and I just finished watching the TV series “Person of Interest,” about a type of super artificial intelligence (AI) that predicts crime. The series, which ran from 2011 to 2016, was prescient about current issues resulting from AI and mass surveillance. In the penultimate episode, one of…

I am always looking for ways to simplify my life and help my days go by a bit more smoothly. But when you live with ALS, like I do, there is always one extra thing to do, plan, or think about before you can even begin an activity. It’s…

Every May for the past five years, the nonprofit I AM ALS hosts a summit to raise ALS awareness, the hallmark of which is a display of 6,000 small blue flags planted on the National Mall in Washington, D.C. Each flag represents a person who is living with…

You don’t know what you don’t know. Sometimes I feel like we are flying blind. Maybe we are. Maybe because we live in a rural area and don’t have access to an ALS clinic, we are just figuring things out as we go. When my husband, Todd, was diagnosed…

The longer I live with ALS, the more I’m forced to learn about myself by constantly adjusting to my body’s limitations and learning how to pace my days. Lately, I’ve been taking lessons in how to thrive from a large, graceful houseplant on our back porch. We are both,…