Guest Voice: ALS hasn’t stopped this go-to guy from showing up as ‘Dad’
My roles as father have shifted in ways I never expected
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“I don’t want to go to the doctor,” I said. “What if it’s something bad?”
“What are you afraid of? What’s the worst it could be?” my wife replied.
“ALS …”
That was the first time I said those three letters out loud — half joking, half hoping that if I said it, it couldn’t possibly come true.
It was February 2024. My wife, Mindy, and I had just come home from a date night over dinner and drinks with my sister and brother-in-law. Sitting on the edge of our bed, I finally admitted what I had been quietly worrying about for weeks. I told her how oddly difficult it had been to carry our drinks that evening. How the dog nearly pulled me over when I took him outside after we got home. I showed her my twitching muscles, jumping wildly like a poorly wired electrical project — symptoms I had noticed the week after Christmas.
Like many people, I turned to “Dr. Google.” Every late-night query returned the same ominous result: ALS.
Naturally, I handled this information with calm rationality. By insisting it was probably nothing while continuing to Google things that were very clearly not nothing.
Challenging my assumptions about being a father
Months of appointments, tests, and waiting rooms followed — an emotional roller coaster flying off the tracks. We followed every rabbit hole to its dead end. On Aug. 9, 2024, a week after my 42nd birthday, I received my diagnosis.
God, I wish I had the receipt so I could return that birthday present.
The Ramirez family, from left: Gigi, Mindy, Elli, Justin, and Landon. (Courtesy of Justin Ramirez)
After 16 years of marriage, Mindy and I believed the life we had built together was right on track, moving along in a comfortably ordinary fashion with careers we enjoyed, a home we loved, three kids who were thriving, busy schedules, never enough hours in the day, the expected unexpected chaos of family life, and the quiet belief that things would continue smoothly in that direction.
ALS does many things, but one of its most surprising effects is how quietly it disrupts identity. Before my diagnosis, my roles as a father felt automatic. I was a provider, protector, lifter of heavy things, jar opener, bug squisher, and all-around, go-to guy. These weren’t formally assigned duties; they were simply assumed.
ALS quietly challenged those assumptions. Things became too heavy to lift. Jars were suddenly closed too tightly. The bugs moved too quickly. And if I couldn’t do those things, how was I going to maintain my most important roles of provider and protector? The go-to guy no longer felt quite so reliable.
Being a father is hard. You can read every book, absorb every piece of advice, and still find yourself constantly adjusting and adapting. ALS forced me to confront something I never anticipated: What happens when I can no longer be the version of Dad my family always assumed I would be?
I’m still showing up
But my role has shifted in ways I never expected. I am no longer always the one completing the task; now I sit beside my children as a teacher and coach, reassuring them along the way — less focused on control, more focused on presence. ALS may have changed how I show up, but it has not changed why I show up.
And I do still show up for them; that is one thing I make sure of. Sports events. School productions. The everyday moments in between. They see me there, supporting them, present in the ways that matter most.
Elli Ramirez takes the family cat, Jerry, for a ride on her dad’s rollator. (Courtesy of Justin Ramirez)
On a day-to-day basis, I try to keep my kids as comfortable as possible with the situation. I show them that I’m not giving up. I include them in my care. I even let them play with my new accessibility “toys.” My rollator doubles as a cat stroller, and my robot feeder now dons a hat and googly eyes — small acts that help them feel more at ease with all the changes.
And then there’s humor.
Humor has become one of my most powerful coping tools — not as denial, but as defiance. ALS is heavy. Emotionally complex. Physically frustrating. Often frightening. But humor has a remarkable ability to change the atmosphere in a room.
Jokes diffuse tension. They put people at ease. They give my children permission to laugh in a situation that might otherwise feel overwhelming. When I make fun of myself or the absurdities of daily life with ALS, I’m not minimizing the disease; I’m reclaiming power from it.
Most importantly, humor tells my kids something words alone cannot: Dad is still Dad.
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