Columns

How ALS Is Teaching Me to Start Over — Again and Again

I’ve been living with ALS for 12 years now, and it’s certainly taught me many lessons. They’ve involved having patience and perseverance, as well as getting back up over and over. The most important lesson, however, has been to let the present moment be what it is, instead of…

How ALS Weakness Made My Husband Stronger

If you asked my late husband, Jeff, what he’d lost while living with ALS, he might have told you via text-to-speech technology that he missed his voice. His dry wit, irreverence, and affinity for gentle teasing relied, in some part, on his ability to speak. Or he might…

How a Little Headlamp Helps to Calm My ALS Mind

One of the many things I love about living in Arizona is its unique weather patterns. For 10 months out of the year, we have warm temperatures and clear skies, followed by two months of thunderstorms. But lately, my ALS has made me dread each downpour — until I…

The Challenges of Hiring Nighttime ALS Caregivers

“It’s just one night. It’ll be fine,” my husband, Todd, said after his night caregiver contacted me late one evening to explain she was dealing with a family emergency. Todd is paralyzed from ALS and needs to be turned and have his limbs adjusted throughout the night. It was…

‘Life Is Pain’: Living Day by Day With ALS

Months after my husband, Todd, was diagnosed with ALS, our church’s worship leader asked us to participate in a Sunday morning service with “Cardboard Testimonies.” We watched an example on YouTube in which music played while people stood in front of the congregation and shared their stories. Presenters didn’t…