Sunday, May 4, 2025 - Day 264

Sunday, May 4, 2025

Yesterday, I gave ALS the finger—literally and symbolically—by posting a photo of the license plate “F ALS.” It was raw, cathartic, and hit a nerve with a lot of people. The reaction was overwhelming. We’re all in agreement: this disease deserves every ounce of contempt we can muster.

But sometime later in the day, the anger gave way to a different need. I started thinking about what I really want to be known for—I don’t want to be defined by ALS, I want to stand for love, joy, encouragement, stubborn optimism—anything but ALS. I want this ALS to be gone from my life. And that shift in thinking hit me like a wave. I fell back in the chair, covered my face, wept, and let the tears rain down. Cindy looked over, saw my sadness and came over to me. I stood up we and we wrapped up in a big hug. She held me steady—literally and figuratively. And the moment passed. Everything was good again.

These emotional eruptions are part of the process. I don’t resist them—they clear the path so I can return to the fight with renewed fire.

At my clinic visit on Thursday, I told the PT and OT team that I want to play golf again. Golf was always going to be a part of my retirement plan, but life took me in other directions. No regrets there, I did other things I loved instead.

After the diagnosis, August 13, 2024, I made a point to swing the clubs again. Tim didn’t hesitate—we were on the course two weeks later. We’ve kept at it weekly through October 30. Friends and family joined in, and even Alex came out to play. He’s no golfer, but with some form and a strong swing, he made those clubs of his Papa, proud.

At PT on Friday, Diane and I worked on golf stances that wouldn’t leave me on the ground. It wasn’t elegant, but I stayed vertical. I joked with her about my “over/under” bet—three falls per nine holes. She refused to play along. I took her silence as “under,” which made her roll her eyes and call me a brat.

Then in OT, Amanda modified my club grips so I could actually hold one. Just when I thought we were done making adjustments, she pulled out a bag of whiffle balls, a mat, and cleared a hallway. She set up my first indoor driving range. Diane coached, Amanda cheered, I think or she was playing catcher behind me. Legal was no where in sight, Cindy was at the end of the hallway and the video was set to record. I swung away, partially and awkwardly, under hospital lights and let it rip.

No injuries. No lawsuits. Just laughter. The whiffle balls survived. I did too. My pride? Eh, slightly bruised as I hit 5 of 6. But I felt alive.

Best OT and PT sessions one can have. Thank you Diane and Amanda for humoring me and helping me get me ready to tackle golf this spring. It was a fun and successful morning of therapy.

I still predict three falls over nine holes. But if I land softly, and laugh loudly, I’ll call that a win.

Have a great Sunday.

Love you guys!❤️