Imagining Our Lives Without ALS

Kristin Neva avatar

by Kristin Neva |

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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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Michelle Osuski avatar

Michelle Osuski

I know what my life would be without ALS. Seeing Alaska and Niagara Falls
Fourwheeing snowmobiling fishing kayaking pontooning and sewing with my family, grandchildren and friends. I loved sewing for people. I wanted to teach kid's and adult's how to sew.I wanted to teach CNAs. So much I had plans for. All gone. I now live in a nursing home. The people who take care of me are wonderful and caring. I have been blessed.

Rick Jobus avatar

Rick Jobus

As someone who suffers from ALS,I second your perspective. While obviously, I'd have preferred a different method, I have emerged a better man for this unwanted journey.

Toshi Kii avatar

Toshi Kii

Ms. Neva,
The last paragraph of your story gave me an uncanny sense of my own feeling about myself - an evolution self. But I am certain it is because my wife has been so extraordinarily positive and forward-looking about her life with ALS. And this has lots to do with our caring friends and neighbors surrounding us. Thanks for sharing your story. Toshi Kii

ReasonAndWisdomMike avatar


So many things. Just thinking about it brings a tear to my eyes.
My two young kids I'll probably not be there for them growing up.

Cindy avatar


I’ve been living with ALS for 3 years. Have all but lost my legs. It’s working it’s way up. I would have continued to work in a job I loved, would have traveled to the Holy Land and cruised Alaska with my husband, Spent time on the floor playing with my grandkids. I am grateful that I met my new Grandson today.

Alison Spack avatar

Alison Spack

My husband had ALS. He went very fast, because he wanted to... but not so fast that I didn't have time to think about the life we had planned and to wonder about all the things that were never to come and never to pass. I miss all the things that never had a chance to happen. As horrible as it was watching his soul slowly disappear because of the daily struggle he went through of living with this disease, I even miss struggling alongside him trying to give him any hope or any reason to hang on.
I do not understand how anyone can say this disease makes them a better person. I guess I just miss him too much to think dying of ALS could ever have any positive aspects.

Kristin Neva avatar

Kristin Neva

I miss our old life and know one day, I will be missing my husband. Although I can now empathize with others who are dealing with all kinds of tragedy and have faced the painful reality of suffering in this world more fully, I don't think that growth outweighs the pain--and we aren't to the hardest part of ALS yet. This is a brutal disease that takes people out--not only those who die from ALS but the people who love them.

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