Joyful Sorrow - a Column by Kristin Neva

patients, strength, bittersweet

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

The Clock Starts Ticking After an ALS Diagnosis

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…

Desperate Places Don’t Always Come with a Choice

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…

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…

We Have No Guarantees with ALS, but We Do Have Choices

“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…

Learning New Skills I Wish I Didn’t Need

I love learning some new skills, but not all of them. Thirteen years ago, I took a creative writing class that set me off on a journey that has included three novels, a children’s book, and now a weekly column. This week, I hope to take a…

Normal Déjà Vu: Life As We Used to Know It

Life with ALS is absurd when I think about it. It’s so different than it was before the disease, and with each setback, life gets even stranger. We tried to maintain a normal life, but nothing seems normal about feeding one’s husband in a restaurant. Just a year ago, Todd…

Defining The Relationship: We’re More than Our Roles

When I was brainstorming ideas for the name of this column, before settling on “Joyful Sorrow,” I asked my husband if he had any ideas. “How about ‘The Caregiver’?” Todd suggested. I dismissed it out of hand. He pushed back. “I think it’s a good name. It’s descriptive and it’s…

Embracing the Joyful Sadness of Life

This year for Father’s Day, I ordered a basket of gourmet caramel apples from Amy’s Candy Kitchen, a little shop in Cedarburg, Wisconsin. Amy’s Granny Smith apples are large and covered with sweet caramel, salty pecans, or other nuts. It is an explosion of flavor, magnifying both the…

Faced with Incurable Disease, Fighting Is Winning

I am by nature a fixer. After my husband, Todd, was diagnosed with ALS, I found out modern medicine didn’t provide a cure. There’s no option for surgery. No drugs significantly improve outcomes. So, I turned to searching the internet for alternative therapies that might help. “I want to fight…