My husband and I recently took a short trip out of town. On the morning we left, it dawned on me that I was going to have one of those days. You know the kind. A day when one thing after another gets in the way. The culminating moment happened…
Columns
After my husband, Todd, was diagnosed with ALS, we went on what we thought would be our last family vacation. We flew into Los Angeles, visited friends, and toured some sites. I took a lot of pictures — our 5-year-old daughter meeting princesses at Disneyland, our…
With apologies to Jimmy Page and Robert Plant: Chairway to Heaven I can no longer walk down the road Unable to take on any load Those facts cause much grievous woe…
After we got married, Todd and I bought an adorable, craftsman-style bungalow in a Milwaukee neighborhood. I believed living in the city would give me a better understanding of the issues faced by the families I served at an inner-city ministry, where I coordinated a tutoring program. Our next-door…
During my early childhood, I often played Chutes and Ladders. For those who are unfamiliar with the board game or have a foggy memory, the board is made up of 100 numbered squares. Beginning in the lower-left corner, players move a certain number of spaces, determined by…
What does smiling have to do with ALS? Or happiness, contentment, or feeling positive? These expressions of our sense of well-being are important to those of us living with ALS. According to a study of 224 ALS patients, participants who had good emotional well-being experienced a slower progression…
Suffering Connects Us All
“So tell us your story,” we often ask people who come to help with Todd’s care. Those who show particularly deep compassion tend to have their own story of suffering, or they’ve loved and cared for someone who suffered. A stage IV cancer survivor. A disabled parent. A sibling who…
ALS and My Hardly Mobile Phone
Would it surprise you to learn that I check my cellphone zero times a day? All around me, people are texting, emailing, chatting, and checking social media. Me? Nada. My eyes are forward, watching the world. I’m embracing “the joy of missing out” — a state of mind caused by…
“What? But there’s a guarantee on your website,” I told the customer service representative for the herbal company. I had requested a refund of a digestive supplement because it didn’t work for me. He repeated his scripted line: “That product is nonreturnable because it’s consumable.” “Wow!” I couldn’t believe my…
ALS: The Musical
The spark of inspiration for column topics sometimes comes to me from surprising sources. Last Saturday, with my submission deadline looming, I had nothing … nada … bupkis. Fearing I would to have to forgo my weekly passion, I passed the time reading, with some music playing in…
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