Although Amyotrophic Lateral Sclerosis (ALS) is considered a rare disease, it has touched my family in a deeply personal way—two mothers of my son’s friends have been diagnosed. One of them is Amy, someone I’ve known for 20 years—since our boys met in second grade and remain best friends today. ALS has profoundly affected Amy’s life and, through her, it has touched ours as well. With her permission, I’m sharing a powerful piece she wrote titled What I Would Do in a Day Without ALS.

May is ALS Awareness Month—a time to shine a light on this rare and devastating disease. Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative condition that affects nerve cells in the brain and spinal cord, gradually leading to loss of muscle control.
– ALS Association

What I would do in a day without ALS – Amy Steins

ALS is relentless. It takes from you in small, unnoticeable ways at first, things so subtle that they feel more like inconveniences than losses. But over time, it steals more and more until even the simplest acts of living become impossible. When I imagine a day without ALS, I think about all the things this disease has taken from me, the things I once did so naturally, so effortlessly, that I didn’t even realize they were gifts.

If I woke up tomorrow without ALS, the first thing I’d do is stretch my arms and legs as wide as I could. ALS takes away that beautiful feeling of freedom, the ability to move your body exactly how you want. I’d stand up from bed without needing help or devices. I’d take those first steps of the day with ease, savoring every footfall as though it were the first step of my life.

I’d make my way to the kitchen and brew my coffee. ALS takes away your grip, your strength, your coordination. Simple tasks like pouring water or holding a mug become insurmountable challenges. But not today. I’d fill my cup without spilling, stir in cream and sugar, and cradle it in my hands, feeling its warmth spread through my fingers.

Breakfast would be a celebration. ALS robs you of independence in ways that feel cruelly intimate, like not being able to cook a meal or lift a fork to your mouth. I’d chop, mix, and fry, savoring the rhythm of my hands working in harmony with my mind. I’d sit down, feed myself bite by bite, and taste the joy of doing something so simple, yet so profound, entirely on my own.

The rest of the day would be about reclaiming movement, because ALS steals that, too. Walking, running, dancing, these are things most people never think twice about. But ALS takes them one by one, until even sitting upright becomes a struggle. On this day, I’d walk outside, feel the earth under my feet, and let the breeze carry me forward. I’d run, really run, feeling my heart race and my lungs fill with air. I’d dance to my favorite song, spinning and laughing until I collapsed from joy, not exhaustion.

ALS takes away spontaneity. Planning becomes a necessity, and even then, things can go wrong. So, I’d embrace the thrill of an unplanned day. Maybe I’d hop in the car and drive with the windows down, gripping the steering wheel with strong hands, the radio blasting my favorite tunes. ALS doesn’t just take away movement, it takes away the ability to do things on your own. On this day, I’d relish every moment of independence.

ALS robs you of your voice, one of the most personal and painful losses of all. It’s not just about speaking—it’s about the ability to express yourself, to laugh out loud, to say “I love you” in a way that’s uniquely yours. Today, I’d talk endlessly. I’d tell stories, laugh until I cried, and sing my favorite songs at the top of my lungs. I’d whisper words of gratitude to those I love, knowing they could hear me clearly, without devices or barriers.

And then there’s touch. ALS takes away the ability to hug someone tightly, to hold a child’s hand, to feel the warmth of another person without limitation. On this day, I’d hug my loved ones as if I’d never let go. I’d hold their hands and feel their embrace without my body resisting.

ALS even takes away the small, private joys—scratching an itch, wiping away a tear, or brushing your own hair. On this day, I’d savor those quiet moments. I’d brush my hair, tie my shoes, and pick up a pen to write a heartfelt letter in my own handwriting.

As the day came to a close, I’d sit outside and watch the sunset, free from the fatigue that ALS brings. I’d soak in the beauty of the sky, feeling the warmth of the setting sun on my face, and I’d let myself dream of all the tomorrows that could look like this.

But here’s the thing: ALS may take away my physical abilities, but it cannot take my love, my gratitude, or my will to live fully in the ways I can. While I imagine this day without ALS, I remind myself that the essence of life, the joy, the connection, the meaning remains, even when my body betrays me.

ALS takes much, but it cannot take everything. And that is where I find my strength.

Thank you for being part of my journey and for walking alongside me through every challenge. Your presence reminds me that even in loss, there is so much to gain in love and connection.

With all my heart,

Amy Stiens

ALS Association – Resources in Kentucky