Good memories sustain us when life with ALS is hard

I like the Maroon 5 song “Memories” because I’m soothed by the melody, borrowed from Johann Pachelbel’s Canon in D, and I’m moved by the lyrics. One line in particular resonates with me: “The memories bring back you.” Though my husband, Todd, is still with me, ALS has forced us to face many losses.

Todd still has his intellect and wit, but after 14 years with the disease, he’s mostly homebound and needs noninvasive ventilation. Our daughter was 4 years old and and our son only 9 months when Todd was diagnosed, and since he lost the ability to walk a few years later, they don’t have many memories of their father from the days before he used a power wheelchair.

Last weekend, we gathered with family here in Michigan to celebrate Todd’s 54th birthday, a milestone we never expected him to reach, but here we are. Todd’s sister came from Minnesota, our daughter came home from college, and her boyfriend joined us for dinner, along with our son and my mother. I smoked a pork roast, beef steaks, and Cornish hens, and I made mashed potatoes and boiled corn on the cob.

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At some point, the topic of high school sports came up, and Todd said that he’d wrestled in high school.

“How did I not know that you wrestled?” our son asked.

“I also studied karate from something like age 12 to 24.”

“Didn’t you once fight a judo guy?” our son asked.

“Yeah, but he was a friend,” Todd said. “We got to talking about what constituted a legitimate martial art, and we ended up wrestling in somebody’s front yard. After I pinned him, he complained that I wasn’t wearing a gi.”

As we laughed at that story, Todd asked, “Did I ever tell you about the time I caught a guy picking my pocket?”

“What?!” our daughter exclaimed.

Todd told the story from sometime in the early ’90s when he and his cousin and sister were at the Taste of Minnesota in St. Paul. He felt someone reach into his jacket pocket, and he instinctively grabbed the man’s wrist and swept his legs. The guy lay on the ground as Todd held his wrist and demanded his wallet. Todd retrieved his wallet, and the guy ran off.

“It was over in about three seconds,” Todd said.

Our kids looked in disbelief. Hearing his stories gave them a glimpse into the man he was before ALS.

The narrative changed

I miss the healthy version of Todd.

I like remembering our life before the diagnosis, including our honeymoon, when we traveled to Bar Harbor, Maine, and stayed at a bed and breakfast. We hiked on Cadillac Mountain in Acadia National Park and sailed on the Margaret Todd, a four-masted schooner. We ate lobster at bayside restaurants and explored the local shops. After purchasing a print of a landscape painting from a local artist, the artist himself invited us to sit on his bench in front of his house and view the real-life subject of his art.

I think fondly of our family vacation two months before Todd’s diagnosis, when we spent time on the beach on Siesta Key, Florida. Todd carried our infant son in a backpack as we walked in powdery, white sand along the shore.

Those were the happier days before ALS devastated Todd’s body, and before ALS crushed my dreams. Our life is often stressful, such as when Todd struggles to cough or breathe, or when we can’t find nighttime caregivers. And when it’s not stressful, it’s often boring and isolating.

Life will never be the same — not with ALS, and not after.

Even so, we created good memories after the diagnosis, too. We’ve spent afternoons at the lake and taken family vacations within driving distance.

Those days are gone now, but we still find joy in watching our kids grow up. Having breakfast with our daughter before she left for college was one of the most beautiful moments of my life.

After our food settled, I served Todd a piece of carrot cake with cream cheese frosting and topped with candles representing 5 and 4. I lit them, and we sang happy birthday. Todd asked me to blow out the candles using his ventilator.

We played Codenames, splitting into teams: the over-40s and the under-20s. The competition was fierce, and the laughter was frequent. The kids won the game, and we all banked another memory.

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