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 Pressure of Caregiving Makes Self-care Difficult

Knowing that so much is riding on me creates a lot of pressure. I don’t get sick days, vacation, or weekends off. Taking time off to attend to my health issues requires finding and paying for caregivers for my husband, Todd, who is paralyzed due to ALS. For example, I…

Grabbing Bits of Beauty to Rejuvenate

“I am so sick of being sick,” Todd said. He’s having trouble kicking this bug that he’s been fighting for two weeks. His lungs keep filling with mucus, and I keep clearing them out. Just when we think he’s on the road to recovery because he has a long stretch…

ALS + a Cold = Stress x 10

My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out. Todd had a sore throat and a runny…

Looking Back on 11 Years of Our Joyful Sorrow

On occasion, I’ll page through the photo books my husband, Todd, made for me as Christmas gifts. I feel a sense of gratitude as I look back on all we’ve been able to do since his ALS diagnosis. Family game nights. Outings to sporting events. Family movie nights. Several…

I’m Wearing a Grief Backpack

On one of my recent daily walks, I listened to an “Office Ladies” podcast in which Jenna Fischer shared her ongoing struggle with anxiety. She used the analogy of a backpack to describe the burden she lives with. Some days it weighs her down, while other days she…

Shifting My Mindset to Play the Game of Life

Last week, I went to the doctor to get a problem with my ear checked out. The medical assistant went through a list of screening questions. The last was, “Are you depressed?” Tears welled up in my eyes. “Yeah, I’m depressed. My husband is terminally ill.” “I’m sorry,” she said.

When the End of Life Feels Imminent

We had a health scare a couple weeks ago, and I had to take our 8-year-old goldendoodle to the vet. Earlier in the week, Comet didn’t have his usual zip. Instead of eagerly greeting visitors, he stayed on his doggy bed. By Thursday evening of that week, Comet began…

If Only My Husband Could Try NurOwn

Two years after my husband, Todd, was diagnosed with ALS, I read an article that gave me hope. An Israeli rabbi who had ALS saw improvement with NurOwn, an experimental stem cell treatment by BrainStorm Cell Therapeutics. The man went from being in a wheelchair to walking. I…

ALS Awareness Is Good, but Action Is Better

In the summer of 2014, people across the world dumped water over their heads in the ALS ice bucket challenge and shared videos of the experience on social media. Our son, Isaac, who was 4 at the time, did it, saying, “I’m having my aunties and uncles do the…