Imagining Our Lives Without ALS

My husband, Todd, recently asked me, “What do you think our life would be like if I hadn’t gotten ALS?”

I’ve done this mental exercise before, but never with him. He’d be working and trying to advance his career. Our two kids would be in school. I might be working at a nonprofit, or maybe I’d be at home with younger kids, as we planned on having a couple more children.

After Todd’s diagnosis, I was too sad to even think of what could have been. But now, nine years later, it was fun and cathartic to imagine how our lives might have turned out.

“I would have my boat, and we would spend weekends on a lake,” Todd said. “Maybe we’d have a cabin in Northwest Wisconsin.”

“Wouldn’t we have problems?” I asked. “You’d probably be frustrated with your career.” As successful as he was, Todd was always driven to pursue more. “What would we have fought about?”

“I don’t know,” he said. “We had a pretty good marriage.”

“There would have been something,” I insisted.

“Maybe whether to buy my boat.”

“We can’t afford a boat,” I argued. “We’re sending our kids to private school.”

Todd laughed. “You want to argue about me thinking we’d buy a boat in a life we never lived?”

“Fine. You can have the boat.”

It’s easy for me to acquiesce when talking about a hypothetical life.

“Maybe we’d be foster parents,” I said. We talked about fostering after our biological children were older. “But then our hearts would have been broken when a kid we loved had to go back to a bad situation.” I imagined a life in which I’d still confront the world’s suffering — just in a different way.

An old friend who had listened to me wrestle with faith questions once asked, “If you could go back to who you were before, would you?”

If it meant that Todd didn’t have ALS, I would in a heartbeat. We’d have family vacations on Florida’s Siesta Key. We’d hike the Grand Canyon with the kids. Or maybe we’d spend our money on that boat. More importantly, Todd wouldn’t have to endure such suffering. Our daily lives wouldn’t be so hard, so laden with grief. Todd would live to see our kids graduate from high school and college. He’d be around to meet our grandchildren.

I hesitated in answering because she asked if I could go back to who I was — not the life that once was, but who I was.

I am not the same person I was before Todd had ALS. My eyes have been opened to the suffering in this world. In some ways, I would love to go back to being the young, idealistic woman who believed she had a formula for making life work. But our reality has brought me to a place of knowing that I don’t have all the answers — a place where I have more empathy for others and a better understanding of other points of view.

High school senior Payton Leutner was 12 years old when she was stabbed 19 times and left for dead in the woods by a best friend and classmate. It was a horrific experience, but Leutner recently spoke up about the attack: “Without the whole situation, I wouldn’t be who I am.” She likes who she is and has aspirations of going into the medical field.

And here I am, wishing we could live a life free of ALS, but liking who I’ve become.

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