Why I can be thankful in the bad situation of life with ALS

As I drove through town, I cringed reading a church’s changeable-letter sign: “Be thankful for everything that happens to you. It’s all part of the experience.”

There’s scientific evidence promoting the benefits of gratitude, so I try to practice it, but I get tired of counting my blessings under the cloud of ALS. My husband, Todd, was diagnosed with it 14 years ago, and I watched the disease take his independence — first with weak arms, then weak legs, and now with difficulty breathing. He’s paralyzed from the neck down, and he needs help with everything.

I asked Todd what he thought about the phrase. “It’s kind of a summary of that verse in Romans 8,” he said. “All things work together for good for those who love God and are called according to his purpose. Good can come out of the bad.”

“Yeah, but there’s a difference,” I said, “between being thankful in a bad situation and being thankful for the bad situations.”

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“Oh yeah,” he agreed. “I’m not thankful for ALS. It’s a terrible disease. But I’m thankful for the ways I’ve grown since having the disease.”

“Like what?”

“Well, I have less pride and more empathy for those who are suffering.”

The gift of understanding

Lately, I’ve been struggling with an aching back at night, which has disrupted my sleep. The pain goes away as I move during the day, but after resting an hour or so, I wake to my back hurting, and sometimes with pain so sharp I can hardly get out of bed.

It’s been rough, especially with all the caregiving Todd needs. But when I manage to get a long enough stretch of sleep to feel sane, I then realize that the experience of pain at night does give me more empathy for what Todd deals with when he’s in bed and uncomfortable from lack of movement.

I’ve witnessed this empathy, which was born from hardship, firsthand over the past decade. Many of the people who’ve supported us have experienced their own tragedy and loss, and I’ve grown in my ability to sit with people in their grief and pain.

I’m not thankful for everything that’s happened, but I am thankful for those who are companions on this journey of difficult experiences: those who wrestle with the existential questions of life, other caregivers who share honest and painful moments on social media support groups, and people who have suffered and, out of that suffering, feel called to help us.

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