When the Ground Shifted: What ALS Taught Me About Love, Family, and Holding On

There are moments in life that divide everything into before and after.

For me, that moment came when my father was diagnosed with Amyotrophic Lateral Sclerosis, known as ALS.

Before, life moved in a rhythm so familiar I barely noticed it. My dad was the constant in all of it — wise, steady, and always the one we turned to for advice. He was the person who knew how to fix things when they broke. He always seemed to know what to do.

He was strong-minded, discerning, and deeply devoted to his family. The kind of strength you assume will always be there.

Then, almost imperceptibly, something shifted.

At first, it was small.

He mentioned he wasn’t sleeping well. Then he said he couldn’t lie flat without struggling to breathe. There were pauses where there hadn’t been pauses before. Moments where something felt just slightly off — but not enough to name, not enough to alarm.

Until it was.

One night, after days without sleep, my dad called my brother and asked him to take him to the emergency room. He thought he was dying. That’s how it felt to him — like his body had quietly turned against him.

Hospitals have a way of slowing time.

The fluorescent lights. The steady hum of machines. The long stretches of waiting between conversations matter more than anything.

Days passed in tests and blood work. Doctors focused on his heart at first — something familiar, something explainable.

But this was different.

Eventually, a hospitalist walked into the room carrying something heavier than a chart. After reviewing everything, she said the words that didn’t seem to belong to our family:
“This has all the signs of ALS.”

She couldn’t officially diagnose it, she said. But she was almost sure.

My brother called me.

At first, I didn’t understand. ALS was something I had heard of somewhere, at some point — but it lived at a distance. Not here. Not in my family. Not in my dad. So I did what people do when they’re trying to outrun reality: I searched for answers. I read everything I could find, as if information might soften what those words meant.

It didn’t.

The weight of it settled slowly, then all at once. Still, we held onto hope. Maybe she was wrong. Maybe it was something else — anything else. There are so many things it could be, we told ourselves. We can handle anything.

Just not this.

Then my dad called after seeing the specialist. I could hear what he was saying, but it felt like I was in another reality.

His voice was steady — too steady. He said things like, “I’ve lived a good life,” and “I have no regrets.” I remember wanting to interrupt him. Wanting to pull him back from wherever his thoughts had gone.

But those words stayed in my chest. Instead, I told him something different. I told him we were lucky. That my brother and I had 42 and 44 years with an incredible father, and not everyone gets that. That he had given us a life full of stability, fun, love, and strength.

It was the kind of response he had taught us to give — measured, grounded, steady in the face of something that could easily unravel you.

That’s who he raised us to be.

But strength doesn’t cancel out grief. It just carries it differently.

And then there was my mom.

My parents have been married for over 50 years. She was 17 when she married him. Their lives are so intertwined that it’s hard to imagine one without the other.

How does someone begin to face that kind of uncertainty?

My dad worried about her. He said so. But he also found comfort in something simple and profound: we were all here.

Children. Grandchildren. Great-grandchildren. A life that had grown far beyond the two of them.
Then he said something I will carry with me forever:
“I haven’t been the best person, but I believe in Jesus. I believe in forgiveness. And I know where I’m going.”

There is a kind of peace in that. But peace doesn’t erase pain. They exist together, side by side.

Life didn’t change all at once after that. It rarely does.

Instead, it unfolded in a series of moments.

Around the same time, my mom learned that her cancer had returned. The news didn’t feel separate — it felt connected, like everything was shifting at once. Like the ground beneath us was no longer stable.

There wasn’t much discussion after that. We knew what we needed to do.

My husband, children (and adult children), and I lived 200 miles away. My parents and brother live on 21 acres of land — land my dad had added to, two years ago, almost as if he had been preparing for something he couldn’t have known. Within a few months, we moved. We didn’t overthink it. Some decisions don’t require analysis. They require clarity. We needed to be together. Because when you’re together, you can face things you couldn’t face alone. And slowly, quietly, the reason for that decision revealed itself.

The changes in my dad became more visible. More undeniable.

Things he had done his entire life without thinking began to require effort. Then assistance. Then, eventually, they would become things he could no longer do at all.

Loss doesn’t arrive all at once. It comes in pieces. But something else came with it.

We began to notice things we had once overlooked. Conversations stretched longer. Silences felt fuller, not empty. Time — something that had always felt abundant — became something we held carefully, almost reverently.

The idea of “normal” slipped away. And in its place, we built something new.

If there’s anything this experience has taught me, it isn’t only about illness. It’s about people. About love. About family. It’s about what remains when everything unnecessary falls away.

I have seen strength, but not the kind people often talk about. Not loud or dramatic or heroic in the way stories sometimes portray. This kind of strength is quieter. It shows up every day.

It looks like continuing. Like adapting. Like choosing to face what’s in front of you without turning away.

I have learned that love is rarely grand in moments like these. It doesn’t announce itself. It shows up in small, consistent ways.

Sitting together. Helping with something simple. Staying when there’s nothing to fix. And resilience — real resilience — is not pretending everything is okay. It’s continuing forward when it isn’t.

There is still loss. There is still uncertainty. But there is also clarity. Time matters. Presence matters. Even laughter — especially laughter — matters.

I don’t know what the future holds. That may be the hardest part. But I do know this:

I pay attention now in a way I never did before—and if you are walking a road like this—if someone you love is facing something heavy, something uncertain—there may not be answers that make it easier.

But you are not alone—And somewhere, in the middle of everything that feels overwhelming, there will be moments. Small ones. Quiet ones. The kind you might have missed before.

Those are the moments that will stay with you.

Nina John Galentin, DBA
Educator | Advocate | Caregiver