Revisiting Both Sad and Happy Memories of Life With ALS

Caregiver journals and family photo albums show the dichotomy of ALS life

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by Kristin Neva |

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I filled the last page of another journal and then reread some of the entries over the last year. I had written about the fear I felt when my husband, Todd, who has ALS, stopped breathing and I had to restart his lungs; the feelings of sadness when family visited from out of state and Todd and I had to stay home while they went to Lake Superior; missing Todd when I went to Duluth, Minnesota, with my daughter for a medical procedure. And I reminisced about easier times, when Todd had ALS but could drive his power wheelchair down a bumpy sidewalk to Pizza Lucé.

I felt sad leafing through the journal. Most of the pages captured my raw emotions, although I did write a couple snippets of happy life, like the funny things my daughter said as she came out of anesthesia and getting to know my nephew’s kids when they visited. But I mostly journaled about my angst.

When I came to the last page again, it didn’t seem like a balanced picture of my life, so I added a list of highlights — appreciating natural beauty on the ski trail, hearing my daughter recount her days at school, biking with my son, watching the TV sitcom “Frasier” with Todd, and laughing at “The Big Year” on family movie night. My daughter played the snobby cheerleader in the musical “Freaky Friday,” and she was the Grinch in her winter dance show. My competent son built a computer along with a desk. He does home repairs and helps move snow with the tractor.

Our life with ALS is really hard, but it’s not all bad.

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For the last five years, Todd has made me photo albums for Christmas of each year’s highlights. After I open my gift, I smile as I look back at the year. Most of the pages capture happy times, although we did take pictures of poignant events, like when Todd’s dad visited for the last time two years ago. He died a few months later.

For the most part, though, the photo books are our happy memories. It’s fun to see how the kids have grown up. We’re smiling in most of the pictures. The pages document birthdays and achievements.

If a stranger were to see our picture books, she might think we have a charmed life. Because Todd has been in his power wheelchair for all of those last five years, she might not notice that he has a progressive disability. She might think we are handling ALS with ease. But she would get a fuller picture of our life by reviewing my journals.

An overhead photo shows four journals and five photo books displayed on a counter.

The author’s journals and photo books. (Photo by Kristin Neva)

Joy and sorrow are both part of being human. To exclude sorrow feels fake, and focusing only on the difficulties doesn’t tell the full story.

Now that I’ve surveyed my journal from the last year and revisited the hard stuff, I’m looking forward to opening my gift from Todd on Christmas Eve to relive the pleasant memories.

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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