Hope

This past Sunday dawned crisp and cool on the eastern shore of Maryland, with a hint of light rain falling from a few clouds dappled against an otherwise vivid blue sky. I dressed to be outdoors, making sure my orange Tim Lowrey Panel T-shirt was visible under my jacket,…

A widely used saying in the English lexicon, “Hope springs eternal,” was coined by the poet Alexander Pope to simply suggest that hope is always available to us. It means a great deal to patients with rare, fatal diseases and our loved ones to know that hope is…

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…

“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.

“The book I’m not reading is riveting The book I’m not reading keeps me up at night The book I’m not reading is better than TV Giving me insight.” These lyrics from “The Book I’m Not Reading,” by singer and songwriter Patty Larkin, vaguely describe a literary quest of…

“All the Bush League batters Are left to die on the diamond In the stands the home crowd scatters For the turnstiles.” Twice in my post-ALS life, Neil Young’s song “For the Turnstiles” has struck me smack dab in the center of my forehead. As the dust finally settled…

Renowned physicist and author Stephen Hawking, perhaps the most famous ALS sufferer after Lou Gehrig, had his final book posthumously published on Oct. 16. In “Brief Answers to the Big Questions,” one of the answers Hawking offers is that there is…

ALS life involves a lot of waiting. We wait for people to help us with daily tasks, we wait for medical test results, and we wait for new ALS symptoms. But it’s the constant thoughts of despair and hopelessness that put us in what I call the ALS…

“Hope is the thing with feathers” –Emily Dickinson Recently, my wife and I went to see a stand-up comedian at our local indoor stadium. My fervent hope was that our evening together would be a unifying, restorative one. It was in that spirit that we performed all of the mental and…