When ALS Isn't The Only Thing That I Am Carrying

AI ART, HE HAS US COVERED 

When people think about ALS, they often imagine it as the biggest challenge a person could face. They see the physical losses, the medical appointments, the equipment, and the uncertainty, and assume that life must surely pause enough for me to process all of it.

But life doesn't work that way. The world doesn't stop delivering heartbreak simply because I am already carrying more than most people could imagine. One of the most difficult realities of living with ALS is discovering that the disease doesn't exempt me from the rest of life's tragedies. Financial stress still exists, friendships can fade, unexpected crises can happen. Sometimes unimaginable losses appear in my life, leaving me trying to make sense of grief while already navigating a life altering illness.

People often ask how I cope with ALS. What they don't always ask is how I cope with ALS and everything else.

The truth is, there are times when the emotional weight feels impossible. I find myself grieving multiple things at once. I grieve the abilities I have lost. I grieve the future I once expected. And suddenly, another loss arrives, demanding its own space in my heart.

The challenge becomes figuring out where to put it all. There is no instruction manual for carrying layered grief.

One moment I'm processing change in my physical abilities. Then the next, I am comforting family members, friends and neighbors, planning a memorial gathering, and trying to understand why someone I love is gone. The losses overlap and intertwine until it becomes difficult to separate one grief from another.

Sometimes people assume because ALS is so significant, everything else becomes smaller by comparison.

It doesn't.

The loss of the loved ones still hurts.

The end of a relationship still hurts.

A family crisis still hurts. 

A broken dream still hurts.

Pain does not compete for importance. It's simply accumulates.

Living with ALS has taught me that resilience is not about being strong all the time. It's not about pretending the losses don't matter. It's not about finding a silver lining in every tragedy. Resilience is allowing myself to acknowledge that multiple things can be true at once.

I can be grateful and heartbroken.

Hopeful and exhausted.

Determined and overwhelmed.

I can be fighting ALS while simultaneously mourning someone I love. I can be moving forward while feeling shattered.

The human heart has a remarkable capacity to hold contradictory emotions at the same time.

What has surprised me the most is even during seasons filled with profound loss, life continues to offer moments worth noticing. Beautiful sunrise. Music that reaches something deep inside. The comfort of a pet. Time spent in nature. Laughter. A conversation with someone who truly understands.

These moments do not erase grief.

They simply remind me that grief is not the only thing that exist.

Some days, survival itself is the victory.

Some days, getting out of bed is courage–or at the end of the day, saying to my spouse, “Well, we made it another day.”

Some days, choosing to keep my heart open after another loss is the bravest thing I can do.

Living with ALS a journey of constant adaptation. Adding additional grief and tragedy can feel overwhelming. Somehow, one day at a time, I learned to carry both.

Not because I want to.

Not because it is fair.

But because life keeps moving, and so do I.

The reality is that ALS may change everything, but it does not stop life from happening. New challenges arrive. New losses appear. New grief finds its way to my doorstep. And somehow, amid all of it, I continue.

I keep loving.

I keep remembering.

I keep grieving.

I keep hoping.

I keep living.

It may not look like strength in the traditional sense, but I have come to believe it is one of the strongest things a person can do.

One thing I learned early on is that being grounded spiritually continues to carry me through, no matter what life places at my doorstep. The peace that comes from knowing I am loved, covered by grace, and never walking this journey alone provides the resilience I need to keep navigating each day.

Gail D. Clauss RIP 5/27/26

In loving memory

This blog is dedicated in loving memory of Gail D. Clauss, my mother-in-law, who we lost on May 27, 2026.

While we deeply miss her presence, we find comfort imagining her at peace, surrounded by lush gardens of hosta and pink and yellow peonies at full bloom, with birds singing nearby and beloved dogs resting contently in her lap.

Her spirit remains woven into the lives of those who knew and loved her. We will carry her memory forward with gratitude, love, and affection.

Rest peacefully, Gail.

You are deeply loved, missed, and forever remembered.

One of the hardest parts of losing Gail is that she is no longer here to share in life's moments with our family. She was someone who always cared about others, would jump right in, and always advocated for what was right. As I continue navigating life with ALS, there will be times when I wish I could hear her voice, share a funny story, cry on her shoulder, or simply spend time with her again.

I will carry with me the memories of her wicked sense of humor, the moments of laughter we shared, and our discussions about all things gardening and birding. While I miss her every day, I'm grateful that her soul is at peace and for the time our family and her friends shared moments with her.

June 2026