ALS limits the shared experiences my husband and I can enjoy
Because of his disease progression, Todd can't comfortably leave our home
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My brother and his family visited from out of town for a few days, so I planned a couple activities away from home and hired a caregiver for my husband, Todd, who has ALS and is paralyzed. Now that his neck is very weak and he needs noninvasive ventilation, he doesn’t find it comfortable to leave our home.
One of our outings was to our friends’ camp, where they have a cabin, sauna, and other outbuildings on a small inland lake. When we arrived, they showed us around.
These friends have visited Todd and me many times over the past year, and we’ve heard about the work they’ve been doing on the camp and their upcoming family reunion. Todd even helped design a reunion shirt for their family that features a block print their daughter made of the sauna. It was fun to see the actual sauna and the rest of the camp in person. I took videos and texted them to Todd.
Todd really wished he could have gone because he grew up in northern Minnesota in a house on a lake. One of his dreams, if he had remained healthy, was to one day purchase a cabin on a lake.
As I looked around the yard, I found myself analyzing how accessible the place would be for Todd. If riding in the van weren’t so uncomfortable, he might have been able to enjoy his time there. He wouldn’t have been able to get into the house, but he would have been able to see the lake from the yard and been a part of the fun. And the bugs were surprisingly few.
I thought back to a trip we made to my mom’s church retreat center on Lake Superior one previous summer. Todd and I sat by the water while our kids ran in and out of the lake from the sauna.
It didn’t feel that long ago, but when I stopped to think about it, I realized it was at least seven years ago. Todd quit going out when the pandemic hit, and by the time it was over, his ALS had progressed so much that he didn’t want to leave home.
I set those thoughts aside and focused on having fun with my nieces. I went canoeing with them, and then the adults sat by the lake while the kids swam and ran in and out of the sauna.
Several of Kristin Neva’s family members canoe on an inland lake. (Courtesy of Kristin Neva)
Later that evening, my friend said, “It must be really hard to be here without Todd.” Her comment brought the loss back to the surface, and I got teary-eyed for a moment. It’s been so long since Todd could join us that the absence doesn’t always register. I’ve learned to carry on, but the loss is still there.
We had a fun evening, and I brought back stories, pictures, and a plate of food for Todd.
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