After my husband Todd’s ALS diagnosis, he said, “We need to sell the house and move near your parents.” He anticipated that their day-to-day support in rural northern Michigan would be more important than being near an ALS clinic in Milwaukee, Wisconsin. We appreciated the convenience of seeing Todd’s…
Joyful Sorrow
— Kristin Neva
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.
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On a walk in the field near my home, I passed by fruit trees that my dad had planted for me in 2014, two years before his death. He dug holes with his backhoe, planted two cherry and three apple trees, and then fenced them in so deer wouldn’t ruin…
I went parasailing during a vacation in Florida 10 years ago. I talked my brother into going with me, because my husband, Todd, wasn’t feeling up to it at the time. He had a weak left arm, but we didn’t know then that he had ALS.
Sometimes I’ll pick up a magazine in a grocery store checkout line and see a marriage article about sex or the division of household chores. I’ll sigh wistfully. Healthy people problems. In “Flying Without Wings,” Arnold Beisser describes his journey to become a psychiatrist, which was nearly impossible after…
My husband, Todd, recently asked me, “What do you think our life would be like if I hadn’t gotten ALS?” I’ve done this mental exercise before, but never with him. He’d be working and trying to advance his career. Our two kids would be in school. I might be working…
A few months after Todd’s diagnosis, our ALS clinic put me in touch with a woman who was further down the road that I had just begun. Similar to our situation, her husband was diagnosed in his late 30s when they had a newborn son. I spoke with her on…
ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below…
Before my husband, Todd, got ALS, we had minor problems, but we were full of hope. We had a small baby so I wasn’t getting much sleep, but I knew that things would get better. Todd was sometimes frustrated with his work, but he hoped to be promoted. Our obstacles…
My heart ached for my kids after my husband, Todd, was diagnosed with amyotrophic lateral sclerosis (ALS). Isaac was 9 months old and Sara was 4. How would ALS affect them? I had no idea how to help them navigate our future. A year after Todd was diagnosed, I…
Being a caregiver for a spouse with ALS is a heavy load, and at some point it becomes too much for one person to handle. When ALS took from my husband the ability to walk, I helped him move from his wheelchair to the bed. He would sleep most of…
Spoiler alert: This column describes plotlines from the film “The Art of Racing in the Rain.” Friday movie night has become our favorite pastime, as it’s something we can still enjoy as a family despite my husband Todd’s paralysis. We typically find a funny movie on Netflix or Amazon Prime.
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…
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…
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