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It’s been an intense couple weeks of winter weather on Michigan’s Keweenaw Peninsula. After a mild January with many sunny days, the first two weeks of February made up for it with over 40 inches of snowfall, along with below-zero to single-digit temperatures. I had been getting out…

“Ride a painted pony, Let the spinnin’ wheel spin.” Recently, I had a flashback to those lyrics by David Clayton-Thomas and recorded by the band Blood, Sweat & Tears. They speak to me on many levels.  The…

Ten years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was during my first year with ALS, a time when I felt the weight of worry and having a life…

Some people take a long time to get an ALS diagnosis, which is a drawn-out, stressful journey. Our story was stressful in a different way, in that my husband’s diagnosis came almost too quickly. In the fall of 2009, Todd first noticed that his left arm was becoming weak.

The 1987 song “Elvis Is Everywhere” by Mojo Nixon and Skid Roper asserts the omnipresence of Elvis Presley. Despite the first-glance outlandishness of the song’s premise — fittingly, the single is found on the album titled “Bo-Day-Shus!!!” — I am…

I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…

When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do much vehicle maintenance beyond having the oil changed. I put gas in the tank, and I figured as long as…

If the sky above you, Grows dark and full of clouds, And that old north wind begins to blow, Keep your head together, And call my name out loud, Soon you’ll hear me knocking at your door. ……

As I hung up the phone following a short chat with my neurologist, an old saying bubbled up in my mind: “You don’t know what you’ve got until it’s gone.” What was I bemoaning the loss of? My ALS clinic. I’ve been missing the interaction, the idea-sharing, and being…

It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. Loss is often talked about as an event that happened in the past. It’s difficult to process grief when you know you haven’t reached the bottom yet, when the losses keep coming. In Brené Brown’s…