Laughing and Crying
Humor and a family’s love help Jay Smith cope with a terminal illness he describes as “like being trapped inside a body that refuses to cooperate, while your mind is fully awake.”
Jay Smith’s life changed dramatically in May 2014, when he was diagnosed with amyotrophic lateral sclerosis, or ALS. ALS has taken much from him in the years since, including the ability to move and breathe on his own, but he continues to remind people that he’s so much more than his disease: father, husband, son, inventor, leader, advocate for others who share his diagnosis. He’s also an ingenious prankster; just ask his father, who is often on the receiving end of his good-natured pranks.
Originally from Bucks County, Smith and his family—Missy, his wife, and their two daughters, Loghan and Peyton—now live in Texas. He ran his own tech company in Austin until he had to shutter the business in the aftermath of his diagnosis.
I recently spent more than an hour talking about Smith with his parents, Barb and Gene, who live in Doylestown. At their suggestion, I reached out to him by email for his perspective about daily life and the future. He responded about a week later, apologizing for the delay; he explained that his eyes “have slowed down a bit,” making the eye-movement technology he uses to communicate more challenging. Here’s what he had to share.
Q&A
What is it like for you every day, living with ALS? What would you want people to know about your experience—challenges, discomforts, positives, etc.?
Living with ALS every day is like being trapped inside a body that refuses to cooperate, while your mind is still fully awake. I’m on life support now with a hole in my neck doing the breathing for me, and total paralysis as my constant companion. Not exactly what I had in mind for my 40s.
What is it like for you every day, living with ALS? What would you want people to know about your experience—challenges, discomforts, positives, etc.?
Living with ALS every day is like being trapped inside a body that refuses to cooperate, while your mind is still fully awake. I’m on life support now with a hole in my neck doing the breathing for me, and total paralysis as my constant companion. Not exactly what I had in mind for my 40s.
Every move, every breath, every itch I can’t scratch—it all requires help. It’s frustrating. [It’s] infuriating. It’s exhausting. But weirdly, I’ve never been more aware of how deeply I’m loved. My wife, my kids, my friends, even some incredible caregivers—they show up. They carry me, literally and emotionally.
Yeah, there’s extreme pain and discomfort. There’s sadness. There’s this slow, relentless loss. But also? There’s laughter. There’s love. There’s my kids growing up right in front of me—my oldest heading off to college at the University of Tennessee, and my youngest still sneaking into my room just to say, “I love you.” Those moments are everything. And I’m still me. Still a wise ass. Still finding ways to live fully, even from a chair, even with machines keeping me alive.
You’re known in your family for your good humor. Please tell me about the role of mindset in coping with what you’re going through—for you, your family, your caregivers, etc.
Humor is how I breathe—metaphorically, of course. The machines do the literal breathing these days. But really, it’s how I’ve stayed sane. If I didn’t laugh, I’d cry. And crying’s a mess when you can’t wipe your own tears.
Humor is how I breathe—metaphorically, of course. The machines do the literal breathing these days. But really, it’s how I’ve stayed sane. If I didn’t laugh, I’d cry. And crying’s a mess when you can’t wipe your own tears.
Mindset is the engine that keeps this whole thing running. Not just for me, but for my wife, my girls, and everyone who steps into our world. Things are heavy enough—sarcasm and humor give us some oxygen. They remind us we’re still a family, still in this together, and still allowed to find joy even when things feel impossible.
My daughters, now 15 and 18, have grown up with this disease in the room, but they’ve also grown up with a dad who still cracks jokes with his eyes and still finds ways to connect. My wife, Missy, has every reason to feel crushed by the weight of this, but she still laughs with me. Still rolls her eyes at my smartass comments. That’s the stuff that keeps us going.
How would you describe your relationship with the future, in terms of how you think about it?
The future used to be a wide open road. Now it’s more like a hallway—one step, one blink at a time. But I’m still walking it, in my own way.
The future used to be a wide open road. Now it’s more like a hallway—one step, one blink at a time. But I’m still walking it, in my own way.
I don’t daydream about ten years from now. I focus on today, and maybe tomorrow. I look forward to a soccer game, or a family movie night, or seeing my daughter go off to college. I still make plans—I just don’t get too attached to how they’ll play out. I’m not afraid of the future, but I’m honest about it. I know what ALS does. I know where this ends. But until that day comes, I’m still here, I’m still showing up, and I’m still dreaming—just in smaller, more meaningful doses. And when I think about what really matters, it’s not the timeline. It’s whether I made my girls feel safe. Whether Missy knew how much I loved her. Whether I left something behind worth remembering.
So yeah, I think about the future. But mostly, I try to make today count so much that tomorrow has no choice but to follow.
Find Jay Smith on Facebook at “Jay Smith Austin Texas” or “Every90Minutes,” a reference to how often someone is diagnosed with the disease and another one dies. Go to every90minutes.org for more information about his family’s efforts to support research to find a cure for ALS, and visit doitforjay.org for details about the Jason Smith Medical Trust, with funds going to support his medical care.
Photo courtesy of the Smith family
Published (and copyrighted) in Suburban Life, July 2025
