I remember: I was sitting on the floor in my bedroom, August, maybe September. Mom entered my room as she often did, but not to tell me it was time for dinner or even to ask about my day. Tonight she came to tell me that my grandpa was dying of an incurable disease, one I never knew existed.
Lou Gehrig’s disease — ALS, Amyotrophic lateral sclerosis, she calmly explained all of the names and symptoms. He might live a few months, he might live a few years and I’d hoped, he could go on forever. ‘Incurable,” like expiration dates and bedtimes, was just another suggestion. My mind wouldn’t register that Grandpa Ed, 68 and spry, had anything but life ahead of him.
Over the next few months I pushed thoughts of the disease aside. Save for updates from my mom and the painful weekly reminders when I’d see Grandpa Ed at church, I resorted to a comfortable denial. How? I wasn’t prepared for this. For the first time I was forced to think about life without him at birthday parties, Thanksgiving dinner, my wedding day. It didn’t make sense.
Months advanced and so did the disease. I now clung to his words and presence knowing I needed to collect and carry everything from those days forward. As ALS continued to chip at his motor skills, he went from standing, then with a cane, then he didn’t stand — and then, he couldn’t eat, go to the bathroom, hold up his head. His decline was heartbreaking. The last time I spent with Grandpa Ed was Christmas day, 2003. He sat at the head of the dining room table as he always had, a sliver of the man he physically once was. He passed away in his home two days later, surrounded by his wife and children. He made it through mere months with ALS.
When I hear ice bucket I think of that day in 2003, sitting on the floor in my bedroom, where I learned I didn’t have long with him. It brings me chills, because at that moment I assumed he’d make it. After all, he was strong, and when he couldn’t be strong, he’d be resilient, and when he couldn’t be resilient, he had us, his family, to cheer him on and shower him with love.
Now I feel the chill again, and the surfacing of emotions that I have felt for 11 years. It brings tears to my eyes to think about this all again and to write of it at length; alternately, beyond the sadness it brings back great memories of someone I have loved deeper and more true than I’ve ever known.
So here is the face that I associate with ALS: Edmond Chester Leonard, husband to Alice Germaine Vandal, father of six outstanding children, grandfather to 17 grandchildren. Architect and lover of solving problems. He designed libraries and water slides and board games, could solve Rubik’s cubes, barbecued. He built houses and gardens, he was involved in his community, he cared deeply for his family. He drove a Blazer then a Cadillac, he played games with his grandchildren by the fire, he loved walks in the park, he always washed the dishes. He was a classic and his laugh, unforgettable — from the heart. He carried us through and held us together.
He loved us so much, and we loved him.
Me and Grandpa, Minot International Airport, 1988.