Vicarious living helps us deal with being homebound due to ALS

My husband, Todd, is homebound due to ALS and I am his primary caregiver. That often makes our lives feel small.

While I appreciate the small joys of life 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 it’s just too difficult for Todd to get out of the house, and I can’t be away from him for long.

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Vicarious reliving

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 working on projects with our son. When he was healthy, Todd was fairly handy, and now our son is using many of Todd’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.

Vicarious learning

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 Sailing La Vagabonde, 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 “How I Built This with Guy Raz,” 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 Mike Cessario, 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.

Vicarious longing

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 diagnosed with ALS, 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 the technology to connect with the broader world.

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.