Tag Archives: lets make als history

ALS Awareness Month

May is ALS Awareness Month. Last year at this time, I changed the Speed4Sarah Facebook profile picture to this:

I like to stay optimistic about my future, to recognize that no one knows what’s going to happen and that we could, in fact, find a solution to slow down this demon—in my lifetime. But I also appreciate statements like the one above, because I think they help people begin to understand the absolute INSANITY of ALS. It sounds like science fiction, but it happens to people every day. Today, someone will experience the first signs of ALS, and they will have no idea what the hell is going on. Someone (many someones) will be officially diagnosed. People will die of ALS today.

It’s a conundrum for me, as I try to share my love of life on this blog, while not sugarcoating the reality of how everything has changed, and will continue to change.

I am someone who could walk—and who did, even at times when driving made a lot more sense. I am someone who could run—and ran miles. I am someone who cooked—and loved trying new recipes. I am someone who traveled—all over the world.

Those things are gone, and it’s completely true that I’ve found new ways to release stress and find happiness. But I miss my abilities, which now feel more like they were superpowers. Read More>


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>