Columns

The grief that accompanies ALS is multifaceted. I grieve my husband’s loss of function and the loss of our dreams. Just when we find a new normal, there is further decline. I let my grief out on the pages of my journal. I cry, I scream in the car when…

The new year arrived bearing good and bad news. The good news is that 2020 marks my 10th year of living with ALS and I’m still here! The bad news is that I still have ALS. And, gosh darn, I thought we’d have a cure by now. But we…

Like many families, we played games over the holidays. Because my husband, Todd, is completely paralyzed due to ALS, we chose games in which he could participate. Apples to Apples worked well for him. I set his cards in the game’s box top, and he told me which card to…

Last year, while serving as a moderator for the ALS News Today Forums, I added more than 355 people to my circle of ALS friends. And in the short time since the launch of the forums, it has become a trusted space where members can ask questions, share…

My Facebook friends post accomplishments like completing a 5K run. If I were to post my accomplishments, I would include taking my husband, Todd, to my daughter’s school concert. Going on a simple family outing with ALS can be challenging. With about 200 inches of snow falling annually, traveling is…

I tell potential customers that my Christmas wreaths will last until Easter. That usually gets a chuckle and often a sale. At a holiday craft fair, a gray-haired man topped my claim: “I bought one from you last year, and I just threw it out last week.” Longevity is an…

Upon the death of someone with ALS, a common theme is often invoked. Words such as heroic or courageous may be chosen to characterize the deceased. The disease’s course is invariably described as a battle or fight. The implication is that ALS is a brutal and unscrupulous enemy.

If my husband, Todd, did not have ALS, there would still be someone else with ALS. And there’s cancer. Childhood illness. Tragic accidents. But winter has arrived on the Keweenaw Peninsula, and I’m compelled to get out and delight in God’s creation. Would He have made nature so beautiful…

Whether I’m at a social gathering or in the middle of a lighthearted chat in the grocery store, there’s no doubt about it — people can say the darndest things! This is particularly true when they’re stymied over what to say to me about my ALS. Don’t get me wrong.

As I approached the one-year anniversary of my husband, Todd’s, ALS diagnosis, I wrote in my journal: “I want to be happy, healed, and whole again. But the grief that I am experiencing is not something one can easily get over.” I read books such as “Getting…