A Daughter's Notebook: Notes from an Unprepared Daughter

“My close friend.”

“My ex’s mom.”

“My best friend’s wife.”

I’d only heard about ALS in the news. Lou Gehrig’s disease. The actor Eric Dane, of Grey’s Anatomy, died from ALS on February 19, 2026 at age 53.

One week later, on February 26, my dad was diagnosed with ALS. I told a few friends and coworkers, people I knew would care or people is would affect due to work. And right away, I started hearing from friends and colleagues about others who’d died from the disease. Word spread as they shared the news. Others reached out, sharing their own ALS connections.

It felt like some secret club I never knew existed. Only, I didn’t want to be a part of this club. This sounded like a pretty terrible club. I can’t compare it to being the person in the real ALS club, the one battling the disease. That one sounds even less fun. I can only tell you that watching someone you love fight unknown changes in their body for more than a year without answers, struggling and getting weaker and weaker, only to be told this is the diagnosis, well, that sucks.

According to the ALS Association website, around 5,600 individuals are diagnosed with ALS each year. It’s estimated that around 30,000 Americans have ALS at any given time. There are more fun stats on there, but they’re really not that fun.

But what I’m learning very quickly is that I’ve been only 2 or 3 degrees of separation from someone who died from ALS this entire time. And now I’m part of the club. And I don’t like it one bit.

I guess if we’re going to “bright-side” this conversation, the good thing is that there are many people like me out there who know how this feels. Wait, good thing? I don’t want anyone to feel this. It makes me not feel so alone, but I also don’t wish this upon anyone. It’s a very confusing feeling, let’s say that.

Yesterday I tried to work like things were normal, with apologetic sentiments rolling in from every angle. Mostly, I stared at the computer screen and tried to figure out how to move things around on a PowerPoint. My brain wouldn’t function. I couldn’t focus. I wanted to cancel out this week and restart.

We’ll see how tomorrow plays out, but I’ll leave you with this: I hope nobody else has to join this club anytime soon.