Thursday, April 10, 2025 - Day 240

Thursday, April 10, 2025

Good morning, y’all!

I’ve never quite gotten used to saying “y’all,” but I’m still giving it a shot. A couple of years ago, Zack gave me a baseball cap with “y’all” embroidered on the front—his way of helping me get comfortable with it. The hat’s definitely comfy. The phrase? Still a work in progress.

It’s hard to believe it’s been nearly eight months since I was diagnosed with ALS on August 13, 2024. Looking back, those days leading up to the diagnosis were filled with fear and confusion—but nothing truly prepares you for hearing those three letters spoken out loud.

Even when I was diagnosed with cancer in August 2019—an equally terrifying moment—there was still a sense of hope. And that hope turned out to be well-founded. I had a brilliant surgeon, Dr. Bilimoria, who not only removed the tumor in my leg, but he saved my leg and gave me clean margins. No chemo. No radiation. Just healing. I walked away from that experience with deep gratitude and relief.

ALS, though, felt different from the very beginning.

I still remember the exact moment Dr. Post said, “I think you have ALS.” The room went completely still. I was in the hospital bed, the doctor to my left, Cindy and Barb at the foot of the bed, and my nurse standing quietly to my right near the doorway. No one said a word. Faces froze. Hands covered mouths. The air felt like it had been sucked out of the room.

Then, gently, Dr. Post added, “I hope I’m wrong,” and encouraged us to get a second opinion. That tiny thread of hope was all we had in that moment, and I clung to it—but the fear, disbelief, and anger were overwhelming. I just wanted to leave. I didn’t want to stay in that hospital bed, in that shared room, feeling trapped in someone else’s bad dream.

Barb and Cindy were ready and willing to take me home if that’s what I wanted. Thankfully, my nurse helped talk me off the cliff. I stayed one more night for further tests and was discharged the next morning—still unsure how to face this new reality, and honestly, desperate to find a way off the path I’d just been placed on.

And yet—eight months later—here I am. Still on this path. Still living with ALS. But I’m moving forward. I’m more optimistic now, more accepting of my physical changes. And I’m learning, each day, how to walk this road with steadiness—even if it’s not always on my own two feet.

As my walking becomes more difficult and my range shrinks, I turned to Peggy—my care coordinator and my angel—for help submitting an application to Team Gleason for a free power wheelchair.

Team Gleason was founded by former New Orleans Saints player Steve Gleason, who was diagnosed with ALS in 2011 at the age of 34. Their mission is more than just providing tools—they help people with ALS not just survive, but live. Their motto is “No white flags.” So far, they’ve raised $55 million to help people live and thrive with ALS.

Yesterday, I had a brief phone interview with them—just 15 minutes. The main question was, “Can you tell us about yourself?” Simple enough. I shared a snapshot of my life since the diagnosis—and just like that, they told me I was a good fit for the program. That was it. Nothing else needed. A 60-second elevator pitch, and I was approved. Wow… that was easy. Too bad Medicare doesn’t work that way.

They’ll be shipping the chair soon. One of the last questions was whether my caregiver could lift 44 pounds. I said, “Of course she can.” And quietly thought to myself, if not, I’ll help her. Which, let’s be honest, is not likely—but the instinct to pitch in is still there. Cindy laughed and said it might be time to hit the gym. Now she’s got a solid reason to start lifting weights!

The chair should arrive early next week, just as the weather starts to warm up. With that and my electric scooter, I’ll have the mobility and freedom I’ve been missing. I’ll be able to get outside, move through the world, and stay connected to life in a way that matters deeply to me. And I’ll be back to walking Bear—now that winter is finally on its way out.

It’s amazing how perspectives evolve. Last August, the idea of being in a wheelchair devastated me. It felt like a symbol of everything I was losing. But now? I’m excited. I’m practically counting down the days until it arrives. Who would’ve thought I’d be giddy about a wheelchair?

This next phase of living with ALS won’t be easy—but it feels more hopeful than before. I’m still able to walk short distances, and I’ll keep doing that as long as I can. But now I know I have options. I have tools—and people—to help me stay independent, stay present, and continue to find joy.

And for that—for Peggy, for Team Gleason, for Cindy, for you, and for every small step forward—I am deeply, genuinely grateful.

Have a great Thursday. I’m off for the final tax day.

Love you guys!❤️