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In the <a href="https://www.barbie-themovie.com/" rel="nofollow">&#8220;Barbie&#8221; movie</a>, 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.
[recommended-reading id=85137]
I can relate. We live in a culture addicted to happiness. <a href="https://www.imdb.com/title/tt20042368/" rel="nofollow">TV shows</a>, <a href="https://www.pushkin.fm/podcasts/the-happiness-lab-with-dr-laurie-santos" rel="nofollow">podcasts</a>, and <a href="https://www.tenpercent.com/dan-harris-books" rel="nofollow">books</a> center on how we can be happier. Thomas Jefferson listed the pursuit of happiness among our inalienable rights in <a href="https://www.archives.gov/founding-docs/declaration-transcript" rel="nofollow">the Declaration of Independence</a>.
I want happiness, too, but my husband, Todd, has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and I haven’t been able to shake <a href="https://alsnewstoday.com/columns/wearing-grief-backpack-office-ladies/">my grief</a> since his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a> 13 years ago.
We’ve had happy moments sprinkled in over the years: seeing <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">our children</a> 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.
<h3>Changing the narrative</h3>
I came across an episode of the &#8220;Hidden Brain&#8221; podcast that intrigued me: &#8220;<a href="https://hiddenbrain.org/podcast/healing-2-0-change-your-story-change-your-life/">Healing 2.0: Change Your Story, Change Your Life</a>.&#8221; 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 <a href="https://teamgleason.org/#">foundation</a> that provides trips, technology, equipment, and care services to people with ALS. Or Brad and Tiffany Smith starting <a href="https://www.alsmemorial.com/als-family-scholarship/about-us">a scholarship organization</a> to help kids and spouses affected by ALS go to college. Or Jodi O’Donnell-Ames beginning <a href="https://hopelovescompany.org/history">a nonprofit</a> 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 href="https://nevastory.com/heavy/">a memoir</a> 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 href="https://www.youtube.com/c/ALS411">a YouTube channel</a> sharing practical things we&#8217;d learned in our years with ALS. I wrote <a href="https://nevastory.com/copper-island-novels/">three novels with an ALS storyline</a>.
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 <a href="https://alsnewstoday.com/joyful-sorrow-kristin-neva/">this column</a> and in sharing some of what we’ve learned with the <a href="https://alsnewstoday.com/forums">ALS community</a>.
A pervading happiness may be out of reach due to my circumstances and personality, but meaning I can find.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

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

My late husband, Jeff, made a dream come true for me.
When I was a kid, my dad would take our family on our small powerboat to explore the waters near my hometown of <a href="https://www.visitannapolis.org/" rel="nofollow">Annapolis</a>, Maryland. If we had enough time and the weather cooperated, we’d take a slightly longer trip a few rivers south of our home. I enjoyed this trip best of all, simply because of one particular house we’d see each time.
Nestled on the shores of the river was a small, older farmhouse with a sloping backyard that abutted a pond. Beside it was a large red barn. I imagined how wonderful it must be to live there.
As I grew into adulthood, I’d continue to see this house on boating excursions with family and friends. I always maintained my affection for it; this home, which I knew nothing about other than its charm and peacefulness, came to represent both future dreams and a connection with my past.
[recommended-reading id=86355]
When Jeff, then my boyfriend, and I were relocating to <a href="https://www.visitmaryland.org/" rel="nofollow">Maryland</a> after several years away, he suggested that we settle near Annapolis. He loved boating and the water just as I did, and I was elated that he was willing to give my favorite town a try. Reasonably, he wanted to rent while we got reacquainted with the area, so I began a home search. The only catch: We had a difficult time finding a place willing to accept our 80-pound husky mix, Rudder.
As our move drew worryingly near, I found a potential rental. Online, the owner shared no pictures of the house, only the pretty waterfront view, and she was happy to accept Rudder. We set an appointment to visit, at which point I realized that, unbelievably, the house was the childhood home of my dreams. Jeff, Rudder, and I were delighted to move there just a few weeks later.
<figure id="attachment_86547" aria-describedby="caption-attachment-86547" style="width: 271px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-86547 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/08/farmhouse-271x380.jpg" alt="A couple poses for a photo on the porch of a farmhouse at sunset. The man is sitting in a chair, and the woman stands behind him, resting her arms on his shoulders. " width="271" height="380" data-wp-pid="86547" /><figcaption id="caption-attachment-86547" class="wp-caption-text">Jeff and Juliet pose for a photograph on the porch of their rented farmhouse, early in Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
That summer, I couldn’t imagine being happier. Jeff cared for the sprawling yard, Rudder napped on the small pier, and I decorated our place with family pictures. The three of us spent most evenings watching the sunset, hosting friends, and simply being present in each moment. We joined a boat club and set off on the Chesapeake Bay on the weekends. Things felt surreally content.
<figure id="attachment_86548" aria-describedby="caption-attachment-86548" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-86548 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/08/Rudder-on-pier-380x285.jpg" alt="A husky mix stands on a wooden pier that extends out over a river. His mouth is open, as if he's in mid-bark. The pier is surrounded by lush greenery, as is the opposite bank." width="380" height="285" data-wp-pid="86548" /><figcaption id="caption-attachment-86548" class="wp-caption-text">Rudder enjoys his pier at home in Annapolis, Maryland. (Photo by Juliet Taylor)</figcaption></figure>
<h3>Life takes an unexpected turn</h3>
As summer turned to fall, our days were increasingly defined by Jeff’s concerning, seemingly unrelated <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a>, which seemed to grow worse with each passing week. He’d developed a <a href="https://www.mayoclinic.org/diseases-conditions/foot-drop/symptoms-causes/syc-20372628">foot drop</a> that spring, and by early fall, he was noticeably slurring his speech and choking, which frightened us. An astute young pain doctor raised the specter of <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, which alarmed us both.
The ensuing weeks and months were an unrelenting series of highs and lows as we got alternatingly hopeful and pessimistic medical news through frequent appointments and sometimes painful tests — a process that may sound familiar to other families <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>. Often, the disease can take a year or more to diagnose, but by October, Jeff’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> was confirmed.
In the first days after his diagnosis, I realize now, we were both in shock. I wanted to be supportive, but I could tell that Jeff didn&#8217;t want me to see him cry and needed time to process. I&#8217;d walk in a nearby park with Rudder and sob. Jeff and I agreed in retrospect that the days and weeks following his diagnosis were among the worst days of the ALS journey, a sentiment that I’ve heard others in the <a href="https://alsnewstoday.com/forums">community</a> share as well.
I lamented, too, the loss of our simple, now fleeting joy — our sweet, quiet contentment, our peaceful days and evenings on the patio. I felt selfish for having focused so much on our physical space and surroundings when life seemed to have just fallen apart.
Jeff, however, had different thoughts.
He reembraced the new life we’d just built. He doubled down on our peaceful surroundings, recognizing them for the gift that they were. Yes, we were heartbroken, but we were together in a place that made us happy. He continued to mow, feed the ducks, play fetch with Rudder, and host friends.
It was the first of many lessons Jeff taught me during his time with ALS — recognizing that happiness and sorrow can occupy the same space. After his diagnosis, our relationship grew even stronger and healthier. We gained perspective. ALS was terrifying and hard, but we approached it together.
Shortly after his diagnosis, Jeff and I got married in that sweet farmhouse on the river with eight people and four dogs in attendance. Though we later moved to a more mobility-friendly place, I still see it from the river sometimes, recognize it for the dream that it was, and thank the universe for bringing joy amid sorrow.
<figure id="attachment_86549" aria-describedby="caption-attachment-86549" style="width: 184px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-86549 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/08/wedding-pic-184x380.jpg" alt="A newly married couple poses for a photo on their wedding day. The man is wearing a gray suit over a pink shirt, and the woman is wearing a sleeveless wedding dress and holding a bouquet of flowers. His head is turned to kiss his wife's forehead, and in his right hand, he holds the leash to the couple's husky mix, who sits at their feet." width="184" height="380" data-wp-pid="86549" /><figcaption id="caption-attachment-86549" class="wp-caption-text">Jeff and Juliet with their dog, Rudder, on their wedding day, shortly after Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: happiness

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

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