“I know all too well it don’t come easy, The chains of the world they seem to movin’ tight. I try to walk around, if I’m stumbling so come, Tryin’ to get up but the doubt is so strong, There’s gotta be a winning in my bones. I am looking…
I’d like to send a hearty congratulations to us all! Why the celebration? Well, we’ve survived the first three months of the year in a world that continues to surprise and challenge us. Plus, for many who live with amyotrophic lateral sclerosis (ALS), making it through another three months justifies…
An old friend stopped by with a gift of homegrown microgreens. She’s a retired nurse, and she used to help with nighttime care for my husband, Todd, who has ALS. She visited for a while, and we updated her on Todd’s health and decline in lung strength. I…
“By the rivers of Babylon Where we sat down And there we wept When we remembered Zion But the wicked carried us away in captivity Required from us a song How can we sing King Alpha song In…
Lately, I’ve been pondering the many ways our lives have changed for the sake of safety, like tamper-proof packaging, airport screening, and two-step password verification. I get it. Identity thieves are everywhere, so are scammers, along with the just plain crazies. We might be a little safer, but I…
Last Sunday, the temperature was in the high 40s, making the tracks in the cross-country ski trail smooth and fast. A gurgling brook carried away snowmelt from a long winter. Birds sang. Two chipmunks scampered up a tree, one chasing the other. Spring skiing is one of my favorite…
“To dream the impossible dream, To fight the unbeatable foe, … To reach the unreachable star, … This is my quest.” Vanquish ALS! Last week, my wife and I enjoyed a visit from a dear friend of ours. Interactions with him always have a quixotic effect on my psyche. Just…
I felt twinges of grief as I shopped for a card for a young couple’s wedding. First card: “Wishes on this special day for happiness, joy, and love, along with a future that will bring everything you are dreaming of.” Sigh. I wish my husband and I had a future.
“And you may find yourself living in a shotgun shack … And you may ask yourself, ‘Well, how did I get here?’ … Letting the days go by, same as it ever was.” Although I’m not proud of it, my life, pre-ALS, was largely a fortunate stream of autopilot idleness.
If you happened to read my column last week, you’re probably thinking I’m writing this while sitting on a sunny beach, gazing at the ocean, and sipping a tropical drink with a little paper umbrella in it. That’s because I wrote about my busy month filled with ALS-related events,…
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