Since my husband has ALS and is paralyzed, his life is much the same under COVID-19 stay-at-home orders. Todd still spends his days on the computer, except now there are many more people online, so he feels more connected. However, the kids and I have had to find a new rhythm to our days.
I didn’t realize how much time I had spent playing taxi mom, running the kids to and from school and various extracurricular activities. Now we’re homeschooling and finding activities at home to fill the days to keep our family from going stir-crazy. We’ve spent some time organizing and cleaning.
I’ve tackled a few neglected areas of the house. I’ve scrubbed the grout lines on the bathroom floor. I’ve cleaned the range hood above the kitchen stove. I’ve organized the junk drawers in the kitchen island.
It’s sad enough that I have more than one junk drawer, but they were filled with mystery objects that had accumulated over eight years since we’ve been in this house.
If I hadn’t needed an item in years, I probably wouldn’t need it again. Nonetheless, my sorting turned into a game of “Identify the Junk” with Todd.
“That’s a spring from the trampoline we sold,” he said. “And that’s the puller to stretch the spring for the trampoline.” He identified replacement blades for our son’s toy helicopter, the handle of a broken magnet-on-a-stick for working on cars, and a funnel that snaps onto the top of a soda bottle.
I transferred the funnel to a utensil drawer now that I know what it is.
I found theater tickets from when my daughter and I got to see Hamilton in Chicago a few years ago. The tickets were a gift from a pen pal whose husband also has ALS, and we lined up caregivers for two days so Sara and I could travel to see the musical. Holding those tickets brought back wonderful memories, so I put them in my dresser drawer. I’ll get the chance to delight in finding them again another day.
Todd enjoyed playing “Identify the Junk.” For him, the drawer was full of memorabilia of an unexpected life — years of living beyond his original prognosis of three to five years. He didn’t think he would see our kids outgrow the trampoline that his brother bought for us the first summer we were in this house seven years ago, when our kids were only 7 and 3 years old.
Over the last few weeks, Todd has recruited their help to scan pre-digital photos of places he’s traveled. He’s been posting landscape photos on social media, asking his friends “Where on Earth?” He gives kudos to the one with the correct answer, and then he follows up with a travel blog.
It’s fun to travel down memory lane to relive our pre-ALS life. Our trip to Paris a year after we married was the trip of a lifetime. “We were so young and in love,” Todd says. “And now we’re old and in love.”
Not long ago, I sometimes felt sad and a little envious when I saw friends’ vacation pictures online — especially photos of beach vacations with their kids. I wish we could give our kids those memories.
But now all of us who are quarantined live off memories of better days. Those junk drawers and old photo excursions are the farthest anyone is traveling.
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 Services, and are intended to spark discussion about issues pertaining to ALS.
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