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My husband, Todd, is homebound due to <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and I am his primary caregiver. That often makes our lives feel small.
While I appreciate <a href="https://alsnewstoday.com/columns/finding-beauty-little-things-living-als/">the small joys of life</a> at home — watching birds perch in the tree outside my kitchen window, enjoying a cup of loose-leaf tea, or figuring out the daily Wordle in The New York Times — I wish we could live the life of a healthy family.
We would hike, eat out at restaurants, and attend Michigan Tech hockey games. We would travel, perhaps vacationing on the white sands of Siesta Key, Florida, or hiking in the Grand Canyon. ALS has squashed our sense of adventure, because <a href="https://alsnewstoday.com/columns/husbands-als-progression-takes-us-different-season-life/">it’s just too difficult for Todd to get out of the house</a>, and I can’t be away from him for long.
[recommended-reading id=83667]
<h3>Vicarious reliving</h3>
ALS has taken much from Todd and me, but we still find vicarious joy in the lives of our children and their friends. Our daughter is a senior in high school, and she and her friends are applying for colleges and scholarships. I enjoy hearing about their plans as I fondly remember that season of my life. I’m excited to see what their futures will hold.
Todd loves <a href="https://alsnewstoday.com/columns/how-were-living-purpose-our-struggles-als/">working on projects</a> with our son. When he was healthy, Todd was fairly handy, and now our son is using many of Todd&#8217;s old tools. Our son has developed many skills, and now Todd doesn’t have to coach him much more than with general objectives and a few tips.
We enjoy vicariously reliving things that we had the opportunity to experience.
<h3>Vicarious learning</h3>
Todd and I try to expand our worlds by reading, listening to podcasts, and watching YouTube videos.
One of Todd’s favorite YouTube channels is <a href="https://www.youtube.com/@SailingLaVagabonde/videos">Sailing La Vagabonde</a>, by an Australian couple with two children who circumnavigate the globe. They share their life at sea and in various ports around the world and explain how to sail. Todd learned that a section of a sail is called a reef — a useless bit of information for a man in a wheelchair who can’t even leave the house to go to the doctor, but interesting nonetheless.
Since all of the household duties and Todd’s care fall on me, I don’t have time to sit and watch videos, but I feel similarly about podcasts. I enjoy &#8220;<a href="https://podcasts.apple.com/us/podcast/how-i-built-this-with-guy-raz/id1150510297">How I Built This with Guy Raz</a>,&#8221; which tells stories of entrepreneurs, most often ordinary people, who started businesses that ended up taking off and becoming iconic brands. Most recently, I listened to the story of <a href="https://podcasts.apple.com/us/podcast/liquid-death-mike-cessario/id1150510297?i=1000641472937">Mike Cessario</a>, who created a viral water brand sold in aluminum cans called Liquid Death.
After hearing the fascinating story, I mentioned it to one of Todd’s caregivers.
“Oh, yeah, Liquid Death,” she said. “I got pulled over once when I was drinking it because it looks like a can of beer. The cop pointed to the can in the cup holder, and I turned the label around, and he said, ‘Oh, you’re good,’ and walked away.”
Vicarious learning makes our long days more interesting.
<h3>Vicarious longing</h3>
It’s not always easy to escape being stuck at home when we see what others are doing, because we wish we could be doing it ourselves. On Facebook, friends post pictures of their family vacations, and I’m reminded of all that we’ve lost with ALS. We traveled early in our marriage, and a little bit when the kids were young, but within a few years of Todd being <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, we weren’t able to do much as a family far away from home.
I know that sounds like envy, but I wouldn’t describe it as such. No one would tell someone who is starving they shouldn’t want food as they watch others eat. I don’t necessarily want a far-flung vacation; I just long for a more normal life.
But I try to keep in perspective that we had a normal life until my husband was 39, yet some people are diagnosed with ALS at even younger ages or had childhood diseases and didn’t even have the opportunities that we had when Todd was healthy. And I think about how much more difficult this disease would have been to manage 100 years ago, or even 50, before we had <a href="https://www.youtube.com/watch?v=v2wuJPV3--E">the technology to connect</a> with the broader world.
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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.

Vicarious living helps us deal with being homebound due to ALS

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.

Tag: meaningful living

Vicarious living helps us deal with being homebound due to ALS

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