Reaching back in time to remember our ‘normal’ life before ALS
To contribute to ordinary conversations, I have to draw on old memories
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I’ve been living with my husband Todd’s ALS for a long time, and while the disease is always there in the back of my mind, I’ve learned to compartmentalize it. I don’t want to talk about ALS all the time, and I like having conversations beyond the topics of how Todd is declining and my life of caregiving.
Months after Todd’s diagnosis in 2010, I found myself learning to set aside the intense grief of our situation as I talked with a friend about their upcoming adoption. They had been doing the math, thinking about how old they would be when their kids graduated from high school.
“We hadn’t thought about the age factor before,” she told me.
“Todd thought about it,” I automatically replied. “He didn’t want to be a really old dad when our kids graduated.” I paused as I remembered our new reality. At the time, we thought it was likely that Todd wouldn’t see the kids through high school. But I didn’t bring that up.
After I hung up the phone, I felt sad thinking about our future. But I was encouraged that I could have the conversation without crying. I had been able to set aside our ALS life for a moment and just be normal.
I have had years of these moments when ordinary conversations prick at my heart, and I’ve learned to set aside ALS.
I’ve recently noticed that in these conversations, I often find myself going back a long while to contribute. For example, at a recent football game, another mom mentioned camping near a beautiful beach an hour from us.
I chimed in. “That’s a really pretty area. Todd and I stayed at a bed and breakfast near there for our anniversary when Sara was a baby.” I was struck by the fact that our daughter is now 20 years old. So many of mine and Todd’s shared memories, like vacations and trips, are from many years ago, before his diagnosis 16 years ago.
Todd Neva enjoys Lake Superior on an anniversary getaway in 2008. (Photo by Kristin Neva)
And even after ALS, our world has continued to shrink. It’s been 15 years since Todd has been on a plane. We flew to California for a vacation the year after his diagnosis. It’s been seven years since we traveled as a family with our accessible van for a spring break trip. It’s been six years since we’ve been out to dinner at a restaurant as a family or attended hockey games and cheered on our local college team.
As the disease progresses, “normal” days feel increasingly far away. Still, I like remembering them. I just have to reach pretty far back sometimes to find a story to contribute to an ordinary conversation.
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