When those of us living with ALS become someone’s Calcutta

“Find your own Calcutta. Find the sick, the suffering, and the lonely, right where you are — in your own homes and in your own families, in your workplaces and in your schools. You can find Calcutta all over the world, if you have eyes to see.” — Mother Teresa, on the city now known as Kolkata in India, where she did service work

The leaves are starting to turn on northern Michigan’s Keweenaw Peninsula, and while we try to embrace fall and then winter here, life will get harder come December, when snow begins to accumulate. We’ll get a few inches virtually every day of January, and snow will continue to fall well into April. In our elevated location, 400 feet above Lake Superior (itself roughly 600 feet above sea level), we get over 200 inches of snow each year. Removing it each winter is a never-ending job.

My husband, Todd, took care of snow removal when we lived in southeast Wisconsin. He loved using his snowblower, but we didn’t get too much snow, so he liked to clear what was there off the sidewalk for our neighbors. He joked that it was his snowblowing ministry.

But then he got ALS, and we moved to Michigan to be near my family. For years, my dad took care of our snow removal. He died six and half years ago, and since then, much of that responsibility falls on me and my mom. But our neighbor helps on many days by dropping the blade of his plow truck to give our driveway a swipe on his way home from work. We’re thankful for good neighbors.

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My mom has a plow on her truck, too, and she pushes snow aside when she comes each night to give Todd a massage. She and I went in on a tractor with a 6-foot-wide snowblower, and I use that to clean up every few days.

We keep the tractor outside, and it’s been difficult to check the oil and take care of other maintenance in the middle of our dark, windy winters. It was almost as much work to get the tractor ready to clear snow as it was to clear snow. Last spring, my mom offered to pay for us to put up a snow canopy to shelter the tractor in the winter.

The grace of a helping hand

After we weren’t able to find a contractor, a friend from my mom’s church felt called to help us. He’s not a contractor, but he built his own log-and-timber-framed home. This project would be relatively simple, and Todd drew up plans for a structure with eight 6-by-6-inch poles and a roof.

Our friend told Todd he could save us some money by cutting trees and milling timber headers. Todd was delighted by the idea. He’d hoped to use timbers to build our accessible home, but he abandoned the idea after he found out how much it added to the cost. But now we’d be getting beautiful timber beams for our snow canopy.

Construction of our snow canopy, which will shelter our tractor, is underway. (Photo by Kristin Neva)

“I know I’m doing what I’m supposed to be doing,” our friend told us.

He happened to be driving past a tree service company that had cut down several trees. He pulled over and asked if he could inspect the logs. Two white pine logs were within inches of exactly what he needed, and he asked if he could take them.

“I rarely go on that road,” he said. “If I had been there two minutes later, they would have been firewood.”

His sons have also been helping with our project. “Your parents used to take teenagers down to Mexico on service mission trips,” he told me. “I can’t do that, but I want my kids to learn to serve.

“It’s been good for me to be here and get to know you a little bit,” he continued. “It gives me perspective.”

Last Saturday, I grilled hot dogs for our work crew, and Todd rolled out to the patio for me to feed him his lunch. Todd ended up talking a little too much, and he began to struggle to breathe. I ran to get his ventilator, but then, in the bright sunlight, I couldn’t see the screen to start the machine.

“I’m panicking,” Todd said. He was losing his tidal volume.

“I’m trying to see to start it,” I said, holding the screen next to my eyes. I stepped inside where it wasn’t so bright and started the machine.

“Put it on sick,” Todd said, and I changed the machine to its strongest setting. After he caught his breath, Todd joked, “She saved my life again.”

I can see how witnessing that situation could give someone perspective. Because of ALS, we’ve become Calcutta for this man, our neighbor, my mother, and many others who help us. It’s a humbling position to be in, and yet it’s beautiful to witness the love of those who give to us.

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, and are intended to spark discussion about issues pertaining to ALS.