In life with ALS, I focus on finding meaning rather than happiness

Feeling good isn't always an option, especially with a terminal illness

Kristin Neva avatar

by Kristin Neva |

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In the “Barbie” movie, Stereotypical Barbie, played by Margot Robbie, is living her best day, every day, in Barbie Land. When Ken has a mishap at the beach, he is whisked off to a mobile medical clinic and heals within seconds. Everyone attends Barbie’s blowout party. All the Barbies and Kens dance and have fun.

A group of Barbies chat among themselves: “Gosh, this night is just perfect … It’s perfectly perfect … And you look so beautiful, Barbie … Thanks, Barbie. I feel so beautiful … This is the best day ever … And so is yesterday, and so is tomorrow, and so is the day after tomorrow and even Wednesdays and every day from now until forever.”

All cheer, “Yeah, Barbie!”

And then Stereotypical Barbie asks, “You guys ever think about dying?”

The record needle scratches, the music stops, all are quiet, and everyone stares. Stereotypical Barbie’s smile fades as she realizes she committed a faux pas.

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Coaching my inner critic to help me live well with ALS

I can relate. We live in a culture addicted to happiness. TV shows, podcasts, and books center on how we can be happier. Thomas Jefferson listed the pursuit of happiness among our inalienable rights in the Declaration of Independence.

I want happiness, too, but my husband, Todd, has ALS, and I haven’t been able to shake my grief since his diagnosis 13 years ago.

We’ve had happy moments sprinkled in over the years: seeing our children grow, working on projects, and spending time together. But I live with an undercurrent of sadness because Todd has a terminal, progressive illness. And talking about that is a party stopper.

Changing the narrative

I came across an episode of the “Hidden Brain” podcast that intrigued me: “Healing 2.0: Change Your Story, Change Your Life.” Psychologist Jonathan Adler discusses how we can tell our stories in ways that enhance our well-being. Adler shared the story of how he reframed the narrative of his life with a redemptive spin. He also gave examples of others’ stories, including a woman who became blind and ended up working on adaptive technology.

Adler asked if the stories we tell put us in the driver’s seat or the passenger’s seat. When disability becomes a part of our lives, do we have a sense of agency? How will we take control?

It’s inspiring when people do big things after an ALS diagnosis, such as Steve Gleason starting a foundation that provides trips, technology, equipment, and care services to people with ALS. Or Brad and Tiffany Smith starting a scholarship organization to help kids and spouses affected by ALS go to college. Or Jodi O’Donnell-Ames beginning a nonprofit dedicated to providing emotional and educational support to children affected by the disease.

We felt a sense of agency in the early years after my husband’s ALS diagnosis, and we did what was within our capabilities. We wrote a memoir about our first year with the disease and gave book talks. Todd became a lay preacher at various churches in our community. We created a YouTube channel sharing practical things we’d learned in our years with ALS. I wrote three novels with an ALS storyline.

But as the years went on, especially after Todd became homebound, it became harder to feel like I was in the driver’s seat.

I was skeptical that Adler’s idea of changing my narrative to improve my well-being applied to me. But I listened carefully when he said, “Feeling good is not always an option for people.” Telling redemptive stories — or stories where people find agency or connection — isn’t always possible. Sometimes illness doesn’t teach us things. It’s just a sad, hard situation. But we can find meaning, even if we can’t feel better.

I find meaning in my role as Todd’s caregiver and in parenting our children. I find meaning in writing this column and in sharing some of what we’ve learned with the ALS community.

A pervading happiness may be out of reach due to my circumstances and personality, but meaning I can find.

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.


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