Thursday, February, 20, 2025

Sunday, February 23, 2025

Good morning! Day 190

Yesterday was a mixed bag. Trying to lead a somewhat normal life continues to present its fair share of road bumps.

Tim, Shawn, and their oldest daughter, Felecia, invited us to lunch. Tim is spearheading an early summer celebration on May 31, 2025 (Day 291), at Illinois Beach State Park. His enthusiasm for bringing together family and friends, both old and new, is infectious. More than just a social gathering, he sees it as an opportunity for people to come out, see me, and perhaps gain some awareness about ALS.

I’m incredibly grateful for his effort and dedication. His energy and commitment to making this happen are a solid 10 out of 10. When he first asked me a couple of weeks ago if he should move forward with the plan, I said yes without hesitation—without even considering the details. That was probably a misstep on my part, but the old me, the one without ALS, would have been all in. So, Tim charged ahead, booking the venue, mapping out the event, and eagerly preparing to send out save-the-dates.

This past week, however, has been a harsh reality check. The progression of my condition is becoming increasingly evident. A sheet of paper hangs on the fridge, a reminder about energy conservation—guidelines given to me at my first ALS clinic visit in October. At the time, I waved it off, telling my occupational therapist that energy wasn’t an issue. It was abundant then.

Fast-forward four months, and now I understand. Energy conservation isn’t just a recommendation; it’s a necessity. Each day, I have the capacity for one significant activity—just one. On Tuesday, it was a combination of a shower and tax preparation. Yesterday, it was lunch at a restaurant, which meant I had no reserves left for the dinner party I had hoped to attend. Back-to-back events don’t seem to be a good plan going-forward. So this morning I’m still feeling bad about missing last night’s dinner party. Cindy went and when she came home at 9:30 pm and told me that everyone missed me and also reminded me that the party was setup, primarily for me…I felt guilty. 🙁

Which brings me back to the May 31st celebration. It’s four months away, and I’m deeply apprehensive about how far along this unforgiving and shitty disease will have progressed by then. The guest list is expected to be around 150 people. That’s starting to feel like a wedding reception, and I remember well how exhausting those were—even when I had the stamina for them. Will I have the physical endurance and voice to get through an event of that magnitude? I don’t know. The uncertainty gnaws at me, leaving me stuck between my desire to be present and my body’s on-going decline.

So here I am at a crossroads. Or, as Yogi Berra so wisely put it, “When you come to a Y in the road, take it.” I think I’ll pull over for a bit, let the engine idle, and figure out exactly where I’m headed before it’s really too late to go back.

Today, my significant event will be tax preparation. What else did you expect? it’s Thursday. 😉

Everybody have a great day with their significant event(s) and their significant others.

Love you guys!❤️