A New Twist

“I like it. But don’t you want to write about other things?” Ben’s reaction startled me. 

Of course I planned to write about subjects other than ALS. I was certain the center stage this fatal, incurable, horrific disease dominated since it barged into our family nearly five years ago had shifted aside. But the construct of my blog contradicted that belief. 

For the first weeks and months after Ben’s diagnosis, anyone I met on the street, at a party, or in the grocery store offered an opportunity for me to dump and ruin their day. The words just tumbled out of my mouth, as if spreading the news might diminish my distress. No one crossed the street when they saw me approach, but I’m sure more than a few people wished they had taken a different route. My husband Steve glued himself to the computer and the phone in search of a cure, a tonic, a reversal. 

After a while, we developed the vacant look that comes from feeling overwhelmed. Netflix films arrived and were returned unseen. We stopped inviting friends over. The tractor remained neglected in the barn. I quit a job I enjoyed. We gained weight and cancelled vacations. Was it alright for me to have a good day, to laugh, to play with our grandchildren, to write vignettes about growing up alongside children? I knew the answer was yes, but for a long time those pleasures felt like abdication. I stopped writing a novel I was deeply committed to, began another, tinkered with a few stories, accomplished nothing. My heart was elsewhere. 

“What would we be talking about if Ben didn’t have ALS?” Sarah, his younger sister, asked one afternoon over a rare lunch together. The question proved provocative. Babies, a story, a trip, work, play. If those aspects of life wriggled their way into our conversation, it was long after we’d digested the current nuance of Ben’s condition. 

When the children were growing up and someone was late getting home from school or disappeared from the backyard, I’d think of all the terrible things that could have happened, believing in some misguided way that if I did that, the bad thing couldn’t possibly happen. Since none of the horrors I conjured up ever occurred, the system worked. If I’d just thought about the terror an ALS diagnosis would bring, Ben wouldn’t have become ill. Madness creeps in like that. Crazy people think they’re sane. 

When we traveled to St. Louis after a long hiatus, Matt, our eldest son, defined our absence. “Welcome back,” was all he said but the words spoke volumes. We’d been distracted, unavailable and sadly missed. 

It’s been nearly five years and I still need a reminder to pay attention to my entire life. I’ve got three sons, two daughters, sons- and daughters-in-law, eight grandchildren, a husband and friends I love and care about. I’ve got yoga to take and trips to plan. I’ve got stories to write and novels to revamp. When ALS does splash onto the page, I've promised myself it will be one among the myriad of other topics that define my life. 

Steve and I travel to San Jose California on Monday for the world premiere of 'Indestructible' at the Cinequest Film Festival. The entire family will be there to cheer Ben and Rebeccah on. I'll post the happenings each day on Burnt Chocolate so those who can't attend can enjoy a taste of the festivities. My plan is to have a great time, laugh a lot, play with my grandchildren and write every day about this celebratory event.