I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…
“Put me in, coach, I’m ready to play today, Look at me, I can be center field.” John Fogerty’s homage to an aspiring baseball player is reminiscent of my pre-ALS relationship with nearly any game of skill. It was the rare…
As one of the moderators for the ALS News Today Forums, I get to welcome new members and learn a little bit about each person. Many of these new members are newly diagnosed patients. Besides wanting to learn as much as possible about ALS, they also tell me they…
I’ve written before about how the world has been shrinking for my husband, Todd, and me. Some activities, such as going on vacation or visiting people in their homes, became too difficult, even before social distancing mandates, due to Todd’s worsening ALS symptoms. But we still made an effort…
“Run away, run away/ It’s the restless age/ Look away, look away/ You can turn the page/ … Take away, take away/ This house of mirrors/ Give away, give away/ All the souvenirs.” The other night, I awoke to a…
ALS is certainly a serious condition, and there is nothing funny about it, but many funny moments can happen. For my caregiver husband and me, holding on to a sense of humor is such an important part of our relationship that we can’t imagine letting a day go by without…
My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives. Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then…
“Your lifelong membership is free, Keep a-giving each brother all you can. Oh, aren’t you proud to be in that fraternity, The great big brotherhood of man?” Those lines, written by Frank Loesser for the musical…
Although it’s hard to find much to celebrate in 2020, this year happens to mark an important milestone for my husband and me. I’m celebrating achieving 10 years of living with ALS, and for my husband, 2020 marks a decade of his role as a caregiver — to me. I…
Last week, we had an early snowfall, even for Michigan’s Keweenaw Peninsula. Snow frosted the tips of trees and blanketed the grass, leaving small bits of green peeking through. I posted a picture on social media and wrote, “It’s beginning to look a lot like Christmas. Gearing up for…
