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 Straw That Breaks the Camel’s Back

A couple weeks ago, one of our toilet tanks developed a crack and started leaking. I turned off the water, and while we waited for a new tank to arrive, we filled a bucket with water from the tub to flush the toilet or used the other bathroom. On Saturday,…

Living With ALS Takes Courage

Editor’s note: This column discusses suicide. Please find resources for help at the end of the column. In the “Safety Training” episode of the sitcom “The Office,” Michael Scott, the boss, wants to prove that working upstairs in the office is just as risky as working in the…

Identifying 5 Types of Grief That Accompany ALS

Author and counselor Douglas C. Smith wrote in Health and Happiness U.P. Magazine about five types of grief people are experiencing through the pandemic. As I read through the article, I realized I have experienced all of them — anticipatory, general, disenfranchised, ambiguous, and vicarious grief — with my…

The Benefits of Physical Therapy for ALS

My husband, Todd, gets twice-weekly physical therapy, which significantly improves his quality of life with ALS. Six years ago, Todd was having pain in his shoulders, and his elbows would not fully straighten, making it difficult for him to use his wheelchair. His doctor ordered physical and occupational therapy evaluations…

Our Bittersweet Spring Break Trip

I got away for a couple of nights during spring break with my 12-year-old son, Isaac, and 16-year-old daughter, Sara. It was good to have a mini-vacation, although I was sad my husband, Todd, couldn’t join us because his ALS progression makes travel too difficult. Three years ago, we all…

Finding Hope Alongside the Ski Trail

Last Sunday, the temperature was in the high 40s, making the tracks in the cross-country ski trail smooth and fast. A gurgling brook carried away snowmelt from a long winter. Birds sang. Two chipmunks scampered up a tree, one chasing the other. Spring skiing is one of my favorite…

Is It Too Much to Wish for Marital Bliss?

I felt twinges of grief as I shopped for a card for a young couple’s wedding. First card: “Wishes on this special day for happiness, joy, and love, along with a future that will bring everything you are dreaming of.” Sigh. I wish my husband and I had a future.