It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. Loss is often talked about as an event that happened in the past. It’s difficult to process grief when you know you haven’t reached the bottom yet, when the losses keep coming. In Brené Brown’s…
Joyful Sorrow - a Column by Kristin Neva
My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round…
“Be nicer,” my daughter whispered to me when I was on the phone telling a restaurant employee my pizza takeout bill was $20 higher than it should be. My tone was apparently sharper than I realized as I went through the math of half off the second pizzas with add-ons…
“I forgot how dark it is all the time,” my brother commented when he visited us in Michigan’s Keweenaw Peninsula over the holidays. The sun was trapped behind cloud cover for the entire week he was here, and some years, it only peeks out occasionally during January with near daily…
This Christmas season, we reflect on Jesus’ entering into this beautiful, yet broken world. God incarnate entered into human life where he would know both love and betrayal. Fellowship and forsakenness. Hospitality and hostility. He experienced the joy of eating and drinking with close friends. He celebrated at a wedding…
It’s time again to send our annual Christmas letter and picture card to our friends and family. Since my daughter could talk, I’ve kept a list of cute things the kids say throughout each year. I pick the best to include in our letter. When Sara was 2, we…
A Physical Presence in Our Lives
On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…
I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…
I’ve written before about how the world has been shrinking for my husband, Todd, and me. Some activities, such as going on vacation or visiting people in their homes, became too difficult, even before social distancing mandates, due to Todd’s worsening ALS symptoms. But we still made an effort…
My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives. Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then…
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