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A Physical Presence in Our Lives

On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…

Zooming Past My Previous Predictions

During these final weeks of 2020, I’ve been reflecting on the various ways this world health crisis has affected the ALS community. One evolving activity that has held my interest ever since I included it in my post-pandemic predictions in a column last April is online ALS support groups.

Giving Thanks With 2020 Vision

“I am a rock, I am an island, And a rock feels no pain.” In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I…

Growing Up With a Parent’s Illness

I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…