Thursday, May 15, 2025 - Day 275
Thursday, May 15, 2025
Good morning friends, family, and curious onlookers
📣 LIVE EVENT ANNOUNCEMENT 🌻 Season’s Sunflower Hour — Special ALS Episode
In just five days, we’ve got something real to share.
🗓 Tuesday, May 20th 🕖 7:00 PM CST 📍 LIVE on YouTube
Join me and the family for a candid conversation about life with ALS — or as we’ve come to call it, that shitty disease.We’ll talk about the hard stuff, the funny moments, and even those questions people haven’t had the nerve to ask out loud.
💬 Got questions? Bring them. 🎥 Tune in live, interact in real time, and be part of the story.
Copy the following link and paste in your browser.
Hope to see you there — your curiosity is welcome, and so is your compassion.
We had our first call yesterday with Season, the host of the show. She wanted to hear the backstory — the whole winding path of this ALS journey and how it’s hit me, Cindy, our family, and our wide net of friends. And let me tell you: it’s been huge for all of us.
We walked her through it — from the first weird symptoms last June, to that gut-punch of a diagnosis on August 13, 2024, and everything that’s followed. Sharing all of that again stirred up the emotional soup I usually keep on simmer.
I told Season about the moment the doctor said, “I hope I’m wrong, but I think you have ALS.” And from there, every time she asked a question, my voice would crack, tears would sneak out, and I’d quietly pass the baton to Cindy. She handled it like the seasoned pro she is — calm, steady, rock-solid. I, on the other hand, was a leaky faucet for 90 straight minutes.
Season’s questions were thoughtful and dug deep. She pulled forward memories we’d parked in the furthest corners of our minds — the stuff we thought we’d packed away for good. Cindy stayed strong throughout, and honestly, I don’t know how she did it. She was, once again, the MVP of the day.
Season has this mix of energy, empathy, and genuine curiosity that somehow makes even the hardest parts of our story feel worth sharing. She made it feel like this conversation matters — because it does.
If I get emotional during the live show (and let’s be honest, I probably will), I’ll pass the mic to Andy’s Army while I regroup. Team effort, as always.
I think it’s important we do this — to show how ALS has reshaped our lives, how it weighs on those around us, and how incredible the support has been. We’ve been blessed with people who show up every single day, asking, “What can I do?” Sometimes, just showing up is more than enough.
Truth is, I used to know of ALS — mostly from The Pride of the Yankees. But that was it. I’m embarrassed now at how little I understood. And honestly, it’s infuriating that after 84 years, we’re still in the dark. Billions of dollars spent, and the best we’ve got is maybe slowing the disease down a little? That’s not good enough. We need A.I., science, and every brain out there solving this. I’m on a short leash, people — so please, pick up the pace.
Yesterday’s highlight: lunch with Rob H. (a.k.a. Chief Idiot) at Lindy’s Landing in Wauconda. Gorgeous day. Lakeside table. Cool breeze. Good food (no, really — the food’s actually good). And a good friend to share stories with. Rob and I go way back — hours of runs, rides, and swims. The kind of friendship that’s built over sweat, sarcasm, and shared sunrises.
I could see it in Rob’s eyes — he wished he could fix this. So instead, he did the next best thing: bought us all Powerball tickets. One each. Because hey, if we can’t cure ALS, maybe a hundred million dollars can at least soften the blow. I haven’t checked the tickets yet. If I don’t share the results tomorrow, it’s either because I forgot… or I’m negotiating with lawyers. Stay tuned.
When it was time to leave, I tried to stand — and the legs weren’t having it. Rob jumped into action. First try: no dice. Second try: feet planted, double grip, full heave — success! I was vertical. Rob, you’ve still got it. But maybe hit the gym — next time might require a deadlift PR.
Thanks, Rob, for the lunch, the lift (literally), and the laughs.
Have a great Thursday.
Love you guys! ❤️
