ABOUT

The story of Steve and ALS

By Trish Bentley

The thing about memories that eventually hurt your heart is that you have no idea in the moment that one day they will. Lake-soaked hair, hot sun, beers in the afternoon, and the familiar hollers of the people you've known most of your life. You never think those hollers could ever be a whisper or that they would be gentle after years of roaring. Suddenly, you miss the roars, the obnoxious cacophony of silliness and laughter. Everyone lovingly rolling their eyes, like, oh, here he goes again. And now. 

And now.

A few months ago, there was a time when the worst thing in our lives was a global pandemic, homeschooling our children and gaining the Covid 5. Then one night, Steve, my brother-in-law, slurred at dinner. 
 "Did you hear that?" he asked.

"Yeah. How many drinks have you had?" I said.

But Steve never slurred before this. He could have ten drinks, wear a lampshade on his head half-naked in the middle of the dance floor, and still hold a deep conversation about parenthood later that night. 

"And I can't sing anymore." He said it in a devastated, casual way if that's even possible, but it was in this case. I tilted my head as the thought sunk in, "Noooo, that can't be right." 

I looked around the room, and there was my sister, buzzing around the kitchen island picking up dishes and kicking one of her four kids off their phones and their butts to help. "It's true," she said, pausing for a moment to ponder it. We all stopped, stumped at the fact that the loudest guy in the room, with a voice that could jam comfortably with Eddie Vedder around a campfire, suddenly just… couldn't sing. 

"My doctor says it's acid reflux. I'm on medication, but it doesn't seem to be working." I knew this already, as I know almost everything about their lives. My sister and I have talked daily, multiple times a day, for as long as I can remember. It is hilarious to both of us when our dad or brother has ever alluded to secrets in the family and whether the other knows something. Lol. Of course, we know. We tell each other everything. Our husbands know this too, and God love them, they have accepted it. 

So, after Steve talked about the medication for his inflamed throat, we kept on with the story he was telling. The moment moved forward. Life sustained motion. And that was that. 

Until one morning, my sister, my heart, said to me, "So, Steve googled the slurring. And the muscle spasms. And the uncontrollable crying. And ALS kept coming up." 

As we walked towards High Park with the dogs, the sun finally visible after being hidden for the previous six months, I focused on the cracks in the sidewalk. "No way. Shouldn't google symptoms." 

Like we do when we pass a car accident, we look at it, feel a tug on our heart, and then we keep driving. We have to; there are cars behind us, police waving us forward, and if we look too long, we might cause an accident of our own. So, we head straight and avoid the grim reality only inches away from us. 

But then Steve's crash came. 

A few weeks later, on a Sunday morning, Steve got in touch with a neighbourhood doctor friend and relayed his symptoms. Within a few days, he had had multiple MRIs, CT, blood work, and the biggie, an EMG. By Thursday, a man they'd only met that morning told him he had amyotrophic lateral sclerosis, ALS: an incurable, neurological disease.  

In the same positive, gracious fashion, my sister and Steve have received the good fortune in their lives, they accepted the bad. We all cried—a lot. We hugged and shared whispers of I love yous. 

But then we laughed. Dua Lipa came back on the speakers. And tears became intertwined with the possibility that good memories aren't only created from moments of joy; they are born from the hope and connection you feel towards the people you love. And man, do I love this man. And so do so many others. He is the love of my sister's life, but he's also the bright light in every room he occupies.

ALS may turn the volume down on his voice, but it sure as hell won't touch his spirit.