Day by Day

Some days. . .

Black clouds swarm above my head. The weight of ALS bears down with a force so huge it takes my breath away. I have to wrench myself free, force myself to do something, anything, that will let in the fresh air. I’ve become difficult, I know, when I’m terrified and want only to stay in bed, under the covers and sleep forever.

But on other days. . .

I let optimism rule. I believe we will overcome these terrible circumstances. I project into the future and imagine Ben physically vibrant the way he was years ago when I drove him to the airport for his third year as a college exchange student in Paris, France. He hoisted a huge duffel over his shoulder as if it weighed a few pounds, kissed my cheek and was gone. When we visited him four months later, he’d already made dozens of friends who called out ‘Binyamin’ as they waved him into their lives. Ben lived in an apartment, a boat, then someone’s loft, while he studied Decontructionism, a difficult philosophy to comprehend in English, let alone, French.

He traveled throughout Europe that summer, visited friends from the states in each country, slept on the floors of their rented rooms. Ben returned in September, packed a few belongings into a pickup truck and drove to California to film, act and write. My wish for him to complete his degree at Indiana University vanished, replaced by the hope he wouldn’t lose his way in the West Coast jungle. I needn’t have worried.

In the early morning light, I soothe the ache with childhood memories of Ben, our independent, resilient little guy, who always found his way home without bread crumbs or pebbles in his pockets. Baseball season brought Little League tryouts. Ben practiced in the backyard for weeks before the big day. Having seen his wild throws and fumbled catches at more than a few softball games, I feared he wouldn’t make the team but said nothing, hoping for a miracle as we drove to the field. Tension mounted as parents vacated the premises until noon. Prepared for a rough afternoon, I returned, shocked to find Ben part of The Optimist team, managed by two brothers who wisely valued heart above skill.

When I look at Ben now, he’s still all heart. His spirit and drive pull me from under the covers. He’s the same strong, self assured human being who made the team, traveled the distance, proved his mettle. He’s a brilliant filmmaker, a wise guy, a funny man, a sensitive soul. Who else but such a person could construct a magnificent life from so much anguish and create a legacy of the magnitude of Indestructible. More than a thousand people gave Ben a standing ovation at the Cinequest Film Festival, in awe of his contribution. Ben, beaming in his wheelchair, reminded me of a favorite quotation by Thomas Edison. “Everything comes to him who hustles while he waits.”