We Are All the Stuff of Legends
“All the world’s a stage, And all the men and women merely players; They have their exits and their entrances; And one man in his time plays many parts …” – William Shakespeare Some months back, I…
Columns
Rebuilding My Confidence and Avoiding Life’s Banana Peels
One of the first symptoms of ALS I experienced was a sudden weakness in my legs and feet. This meant that without warning, whenever I walked I felt as if I had stepped in a hole, and more than once I ended up taking a nasty fall. Even when I…
A Physical Presence in Our Lives
On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…
Stumbling Upon the Sublime in a Minefield of the Ridiculous
“Well I don’t know how to tell the weight of the sun, … How the home computer has me on the run, … Of all the Nobel prizes that I’ve never won, … Please be upstanding for the Mayor of…
Zooming Past My Previous Predictions
During these final weeks of 2020, I’ve been reflecting on the various ways this world health crisis has affected the ALS community. One evolving activity that has held my interest ever since I included it in my post-pandemic predictions in a column last April is online ALS support groups.
Giving Thanks With 2020 Vision
“I am a rock, I am an island, And a rock feels no pain.” In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I…
Growing Up With a Parent’s Illness
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…
Adapting With the Hope That a Tradition Can Be Toppled
“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…
Banishing Thought Loops and Living One Day at a Time
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…
How ALS Affects the Hierarchy of Needs
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…
Recent Posts
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- Clene working with FDA on accelerated approval for CNM-Au8
- An author discusses ALS and how she became an activist
- Longitude Prize on ALS encourages use of AI to find new treatments
- Living near toxic algal blooms tied to shorter survival in ALS patients