August 20, 2019, by Kristin Neva
Life with ALS is absurd when I think about it. It’s so different than it was before the disease, and with each setback, life gets even stranger.
We tried to maintain a normal life, but nothing seems normal about feeding one’s husband in a restaurant. Just a year ago, Todd preferred to eat as independently as he could, so we would ask the waiter to bring a stack of plates to put under his dish. I’d cut up his food and push it to the edge, and he would bend down and eat face-to-plate.
Before we had an accessible van, Todd was too heavy for me to get him out of his wheelchair and into the passenger seat by myself. I’d look for a familiar face in the crowd leaving an event or restaurant, but more often than not, I’d have to approach a brawny stranger.
“Excuse me. My husband is disabled, and I need help pulling him out of his chair so he can transfer to our van. Would you be able to help us?”
No one ever turned me down, and I cherished the helpfulness of people in our small town, but it felt strange.
Now, choking is an increasingly more frequent part of our bizarre world.
At a restaurant the other day, I could see panic in Todd’s eyes. He clearly wasn’t able to swallow his food, so I reclined him and repeatedly pressed on his abdomen until whatever was lodged in this throat came out.
Others looked on in horror, but for us, it’s the new normal.
It’s getting harder and harder to remember the life we once lived.
I do recall Todd saying to our toddlers, “You can pick your friends, you can pick your nose, but you can’t pick your friend’s nose.”
Now, my best friend can’t pick his nose. Yup, that’s on me, along with toileting and all other personal care tasks.
This is definitely not the life we had imagined we would live.
I had also never imagined we’d become hockey fans. Neither Todd nor I followed any sports. We both preferred to be the ones doing the physical activity, such as hiking or biking. Now, we cheer on the Michigan Tech Huskies. It’s something we can still do together as a family.
From the accessible seating right up against the glass, I looked around the crowded arena one evening and I was struck with a realization. Most of these people are able-bodied. They could be out doing something physical, and yet they choose to be here.
It felt oddly normal. I even found myself enjoying the game, vicariously competing through this team — my team. Who knew watching sports could be so much fun?
Hockey games are easy. It can be much more work to be normal.
We wanted to give our kids a spring break vacation seven hours away in the Twin Cities. We found a truly accessible hotel that could accommodate a lift under the bed and in the bathroom. We had to arrange for a Hoyer lift to be delivered to the hotel, and a nighttime caregiver traveled with us. The van ride was hard on Todd, and we both dreaded being away from our overhead lift, but the next day we made it to the Science Museum of Minnesota.
We went to the museum’s Omnitheater. Because Todd was in his chair, they let us into the theater before others were allowed in, and our whole family sat together.
When checking out the exhibits, our son Isaac went off in one direction with Todd, while I let our daughter Sara choose exhibits that were of interest to her. In that moment, I had this lovely feeling: We were enjoying an activity together like we would have done in a life without ALS. It was like déjà vu. For a moment, life seemed really normal.
This article originally appeared in ALS News Today: Normal Déjà Vu: Life As We Used to Know It.
My husband lived 16 years with ALS. His symptoms began at age 56. You both are so young to have to raise children and cope with this disease. You are a very strong family doing all you can together to create a wonderful childhood for your children and create a stable home life for those precious children. May your husband continue to progress slowly. I’m from ?Nebraska.
Comments are closed.