Writing about a loss to ALS

ALS takes everything except the person inside. By the end, the body cannot do what it used to, but the mind is usually still there, watching it happen. Writing for an ALS service means writing about the person who stayed, even as their body let go. This page is for that.

Honor the person, not the diagnosis

ALS is loud. By the end, the wheelchair, the feeding tube, and the communication board can feel like the whole identity. They were not. Your father was a person for sixty years before the diagnosis. Your wife was a person for forty. The eulogy is your chance to give those years back to the room.

A useful starting point. Write one paragraph about who they were at twenty-five, one about who they were at forty, and one about who they were the year before the diagnosis. Then you have the bones of a life. The ALS years can be a single paragraph near the end. For the broader shape, see how to write a eulogy.

Brave, specifically

Almost every ALS eulogy uses the word brave. That word has been worn smooth from use. Make it specific instead. He kept showing up to his daughter's soccer games until the very last weekend, in the chair, in the cold. She wrote her last birthday card to me with a keyboard she controlled with her eyes. Those sentences land. Brave on its own does not.

Use their own words

Many people with ALS write a great deal in their last months, sometimes through eye-tracking software, sometimes through dictation early on, sometimes through letters they wrote when their hands still worked. A short passage from something they wrote, read aloud at the service, is often the most powerful moment in the room. Find a paragraph that sounds like them and read it slowly. Pause after.

A short example, two minutes

My uncle was diagnosed with ALS three years ago this March. By the end he could move only his eyes. I want to tell you who he was before any of that, and what stayed with him until the very last morning.

He was a high school math teacher for thirty-four years. He could do long division in his head faster than most of us can do it on paper. He coached the chess club. He had a small workshop in his garage where he built model trains, and every grandchild got one for their tenth birthday. In the last year, when he could not speak, he wrote to me on his tablet. The last thing he wrote was, I am still here. Tell them I was here the whole time. So I am telling you. He was here the whole time.

After the service

ALS communities are tight. Many families find that the relationships formed during the years of caregiving last well past the service. The ALS Association has free bereavement groups that some families find helpful. For more general grief support, see our crisis and grief support resource, and our piece on the anniversary of a death for what the first year tends to feel like. Families in major medical centers like Boston often have stronger local ALS bereavement networks; see our Boston memorial planning page.

Common questions

Should I talk about how much they lost physically?

Briefly, if you want to. The room already knows. Spend most of the eulogy on who they were as a person. Their humor, their work, their relationships. Those did not go away when their body did.

Is it okay to mention how brave they were?

Yes, and be specific. Brave on its own is a word the room has heard a hundred times. Brave like, he still made his daughter laugh on the bad days, lands. Specific bravery is real.

Their voice was the last thing to go. Can I include something they wrote?

Yes, and many families do. A short passage from a letter, a text, or an email is often the most powerful moment in the service. Read it slowly. Pause after.