Columns

A New Paradigm for the Future of ALS

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…

Learning the Rules for the Medicare Guessing Game

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…

Ordinary Outings Are Arduous with ALS

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…

Even Trees Die with No Known Cause or Cure

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…

The Art of Declaring War on ALS

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.

In Defense of Delight in the Midst of Suffering

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…

What (Not) to Say to a Friend Who Has ALS

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.

Grief Is a Wolf that Demands Attention

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…

I’m Thankful for the People Who Enrich My Life

It’s Thanksgiving Day tomorrow in the United States. Unsurprisingly, the evolution of its celebration has been shaped by our nation’s cultural dynamism.  Rooted in religious ritual imported by the initial European settlers, it was institutionalized by the constitutional congress, with specific…