I wrote an essay for The New York Times in 2013, about parenting with ALS. And every time a new comment came in online, I was nervous. I hadn’t talked to many people with ALS and hadn’t ever written something in such a public forum. I felt extremely exposed. Then a comment came through that began with the line “You and I share this journey…”

The poster was Trickett Fewell Wendler, mom to three young kids, who had lost her father to ALS and had been diagnosed herself earlier that year. Trickett’s version of the disease moved fast. She was dancing in March, wheelchair-bound in July. I felt instantly connected to her based on her comment, so I looked her up on Facebook (bless her beautiful and unusual name!) and we made a phone date. She was from Wisconsin and sounded like so many of the people I’d gone to school with there. Like so many members of my midwestern family. She was familiar.

I don’t even know what we talked about, we just talked. I had a three-year-old, but Trickett’s kids were a little older and she had to deal with their growing understanding of her illness. I do remember that she was working on an article for her local chapter of The ALS Association, and she was nervous and excited to see it in print. She was an activist for ALS awareness, and very vocal with ALS organizations about her expectations and frustrations around the work they were doing. People listened to her. Read More>