A story of a family’s loss offers guidance amid my grief with ALS

The outside temperature was cold, just 15 F, but the sun was shining, so I decided to forgo my elliptical machine and instead walk down our country road.

I checked on my husband, Todd, to make sure it was OK to leave, and then slid into my snow pants and put my winter jacket over my light shirt. I didn’t think I needed a sweatshirt, and I chose my thinner mittens. Halfway down the driveway, I realized my mistake; the sun pouring through the windows had deceived me. I was dressed too lightly for the weather.

But I kept going.

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What good may come

As I walked, I listened to an episode of Radiolab titled “Gray’s Donation,” the story of Sarah and Ross Gray and their decision to donate their son Thomas’s organs for medical research after his death.

I’m drawn to stories of loss, having myself lived with ongoing grief during my husband’s 15 years with ALS. Even when the circumstances are different, the emotions are often the same, and remind me that grief is part of being human.

My eyes filled with tears as the Grays recounted their son’s death and the way grief reshaped their lives. I became so wrapped up in the story that I forgot about the cold.

In trying to process the loss, Sarah said, “It sort of shook my faith in God and how the universe works.” Me, too, I thought as I headed up a hill. Before ALS, I didn’t think that following God would guarantee a pain-free life, but I did believe I’d feel more comfort in suffering.

I walked past the point where I usually turn around, listening as the Grays described contacting the labs that had received their son’s organs. They wanted to know what good had come from their tragedy. They said that learning how their son’s donation contributed to research caused something to shift for them.

Sarah later said she no longer believed the universe treats people the way it should. But she does believe there are really amazing, kind people in the world, and that science and medicine are a part of that. She described moving from feeling like she was in a boat being slapped by waves to feeling that her choices were making a difference. “It has made me feel powerful,” she said.

We have so little control over a disease like ALS. The image of being slapped by waves resonates with me as the losses continue to come. There is no steady season of stability, only ongoing decline. It is hard to find agency in that.

But I have seen the power of the small ways people choose to make a difference. I see it in the ALS Facebook groups where caregivers share advice and encouragement. I felt it recently when I reached out to a Facebook group during a difficult stretch, and people responded with feedback and encouragement.

The episode ended, and I turned for home, clenching my hands into fists inside my thin mittens, once again aware of the cold.

Sarah’s conclusion stayed with me. I no longer believe the universe treats people the way it should, but I do believe there are remarkable, kind people in the world.

Over the past 15 years, many have stepped into our suffering. Some help because they have suffered themselves. Some came to support us because their faith calls them to love. Their choices do not erase the suffering ALS brings, but they help us manage the disease and keep going. And that is powerful.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.