Thursday, November 6, 2025 – Day 450

Thursday, November 6, 2025

LGood morning, friends and family.

Four hundred and fifty days since this shitty diagnosis. That’s a lot of days. The number made me think of the Grateful Dead song Truckin’ and these lines:

Sometimes the light’s all shinin’ on me,
    Other times, I can barely see.
    Lately, it occurs to me—
    What a long, strange trip it’s been.

That about sums it up. Most days the light feels warm and steady, shining through all the support and kindness we’ve been shown. Other days, more lately, the shadows creep in, and it’s hard to find my joy and air (air…that’s a real problem)

But always…and I mean always…the love around me pulls me back toward the light.

I often feel like I’m standing in that spotlight, surrounded by so many people who’ve lifted us through this journey. You’d think that after 450 days, I’d have seen everyone, exchanged hugs, said “I love you,” and called it done. But somehow, the calendar keeps filling. New visits. New laughter. New memories. I owe some people open dates…it will happen.

It’s funny—if I had been asked to write a script for how to survive this thing called ALS, how to manage my head and heart through it all, I never would’ve imagined this story. I couldn’t have written anything half as rich, half as human, or half as beautiful.

When I started writing a week after my diagnosis, it was just to keep the kids updated. Slowly, you all convinced me to open the window wider—to share my thoughts, fears, and small victories. Thank you for reading, for responding, and for letting me know my words matter. That connection keeps me going.

This past year has meant more to me than I can put into words. I wish it could go on forever. I know it can’t, and I know things will slow as my body continues its steady retreat. But my spirit still has some miles left in it—and with your encouragement, I’ll keep on rolling.

So here’s to the light, the strange trip, and the company along the way.
With all of you beside me, I’ll just keep truckin’ on.

Have a great Thursday.

Love you guys!❤️