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“Ordinary Stories, Clothed in Love”

Read this reflective ALS patient story about a volunteer who helped a man write his autobiography.

There’s a kind of script that comes with ALS, a debilitating neurological disease that attacks the body’s voluntary muscles and eventually leads to death. It’s like a play put on by many different troupes — the form it takes varies, but the sounds, the emotions, and the finale stay the same, no matter where it’s performed.

I saw this play staged for the first time in my grandmother’s final years, and I was committed to doing what I could to changing that script for others facing the disease, in whatever small ways I could. That’s how I met Ron and his family.

Ron wanted to preserve stories from his life before he died — to have something to leave behind with his family — and as a volunteer with the ALS Association of Greater St. Louis, I was granted the privilege of capturing what he wanted to share.

I was happy to meet Ron and his family, and so grateful that they let me into their home and into their waning time together, but I had to brace myself the first time I met him. I knew what I’d see when I walked in that door – and I knew what he’d remind me of. His voice, the knotting of his hands, the way his neck wouldn’t quite move when he struggled to turn to me when I spoke — it was too familiar in a way that’s particular and painful.

Those suffering from ALS sound remarkably similar in voice — I heard it in both my grandmother and in Ron. It’s a voice that has been stripped of its nuance —  and it requires every bit of concentration, breath, and strength from the speaker. It’s a voice that, for the energy and care it takes to utter a single word, carries with it a triumph of the will and the body.

As an outsider, to hear a person with ALS speak is sad and painful — and often confusing, as the speaker sounds like they’ve got a mouth full of marbles. But to those who have seen the battle with ALS firsthand, that voice — for as long as it lasts — is a gift.

It’s that voice that Ron used to tell me his story. Over the course of a few months, I would travel to his home every week and sit with him in his living room. His wife and his young adult daughters would leave and Ron would tell me about his life. I’d listen, and nod, and laugh, and type. As Ron used every ounce of strength to utter the words he held in his mind, I would do what he no longer could — flex my fingers and reach them across the keyboard, piecing together the words and memories he shared so as to make them permanent for his family.

He saw his diagnosis, knowing that his time on Earth was coming to an end; he saw his wife, who’d spend more of her life without him than with him; he saw his two daughters — one a junior in college and the other just entering — and he saw everything that wouldn’t be. He knew that he wouldn’t see their weddings, their careers, their futures. But he also recognized what they would no longer have.

Time was fleeting. There were few — if any — nights left to sit around a fireplace, sharing the stories we tell about life, about what matters, about the memories that make us who we are. There was no relying on another day, no sharing life stories as they came to mind. For Ron, simply writing down a note or a story to his loved ones was no longer an option. He was running out of time.

To be frank, what we wrote was nothing special. Ron didn’t start a multibillion-dollar company or save a drowning child. His life story consisted of everyday, simple memories and moments: riding his dirt bike; vacationing in the Ozarks; riding a school bus for the first time. They weren’t breathtaking or revolutionary on their own — but these were the moments he chose to leave with his family.

Putting these words down on paper wasn’t easy. We’d meet for an hour, maybe two, and when I left, Ron would be exhausted. He could no longer speak, could hardly keep his eyes open. And we would have gotten through one, maybe two stories. But what we wrote was far more than what he’d said. The stories held more than a legacy, more than a simple memory — they carried him.

Ron understood the pain his daughters and wife would feel when he was gone, the loss and emptiness of not having a husband and father by their sides, and he invested his vanishing time and energy to give them glimpses of his life — advice, anecdotes, memories, and laughter. He needed a way to give them himself, and so he gave them his stories.

What struck me most about Ron’s gift to his daughters was the incongruence of it. After all we’d gone through to put these words together, after the strain he’d placed on his body to get the stories out, it seemed so small, these 20 or so pages of paper. But that’s precisely what made the gift of his autobiography so special. It was the ordinary, clothed in love — love that took form in stories with immense effort and foresight.

How do you capture a life in words? Can sentences communicate who we are? What stories will we leave behind us?

After I finished working with Ron and his family, we lost touch. It was expected — as a volunteer, I wasn’t meant to stay around after the project was finished. But I’ll never forget Ron’s story. Helping him document his life changed the way I think about the stories we share and the gifts we receive. He reminded me that small things can transform us. The stories of our lives, no matter how consequential they seem, are golden gifts if we share them in time.

I recently learned that Ron died the day after my wedding this summer. Something about this confluence of events makes more concrete for me the feeling that Ron and I and his family are intrinsically connected now. We crossed paths for only a few months, but something in me changed as I wrote down his words. I can see them shining in the threads of my own story now.

Grotto quote graphic from an ALS patient story: "How do you capture a life in words? Can sentences communicate who we are? What stories will we leave behind us?"

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