10/06/2025
The Day the Earth Stood Still
I was only thirty-six when I was diagnosed. My girls were just six and four. The news came through an MRI, one day before my oldest’s seventh birthday. That was a hard party to get through. The whole time I kept thinking, “Holy s**t, I’m going to die.”
Up until that day, life had felt like a dream. We’d moved to Austin four years earlier and I swear we were the four luckiest people alive. We did everything together — camping, boating, chasing down every BBQ joint within driving distance. And we’d drive just about anywhere in my Jeep, top down, year-round. We were the happiest family I’d ever known.
Then our world came crashing down. In the early days of the disease, hope poured out of us. Hope for a cure. Hope for something to slow down this beast. Hope that their dad wouldn’t die a slow, cruel death. And while we still managed to squeeze joy from those years — full of adventures and misadventures — deep down we clung to the belief that a cure was waiting just around the corner.
For a while, I convinced myself I’d get that cure and slip right back into my old life — maybe even with some Fabio-like hair thrown in for good measure. But that fantasy never came. No one has ever been cured of ALS. Ever. At best, treatments buy you a few more months. And stem cells? Just false hope wrapped in a glossy sales pitch for the desperate. I was one of those desperate people — desperate to watch my girls grow up, desperate to grow old with my wife, desperate to hold onto my perfect little life.
Even now, part of me believes that if by some miracle my body returned, I’d pick up exactly where I left off. I’d have my boat, my Jeep, my beefcake body, and my little girls back, cruising Lake Austin. But eleven years have been stolen from us. My daughters are now sixteen and eighteen, remarkable young women — maybe shaped, at least in part, by this struggle.
For the past ten years, I’ve been trying to get some of my old life back by recreating my voice from hours of old recordings, but the technology just wasn't there yet. Finally, through I was able to recreate it—intonation and all. But when I tried to use it, the girls didn’t like it. They’ve grown up hearing Microsoft David as my voice, so that’s what they associate with me.
Peyton even said she doesn’t remember what my real voice sounded like. I’ll admit, I cried a little when I was alone that night before going to sleep. Still, I’m grateful that technology allowed me to raise this incredible girl, even if it’s with the help of a robot named David.
Today I sit here, nearly twelve years in — propped up in my wheelchair like Weekend at Bernie’s — reflecting on this life and the next. Wondering how much more I can endure when my eyes are the only things that still obey me, and they are failing me now too. I dream about food — particularly cheesesteaks, micheladas, and a late night Taco Cabana burrito, mmm. Maybe that’s what the afterlife is like: being returned to your happiest days, in perpetuity, with endless chips and queso, and the wind catching my long blond locks, making every bald guy jealous.
And yet, I still dream that I’ll wake up and discover the earth really did stand still on that day before my daughter’s birthday — and that I’ve been granted another chance. Another chance to be a better father, a better husband, a better son, a better human being.
Until then, I’ll stay here like Bernie, trying to love as fiercely as I am able to with the time I have left.
