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Les and Susan Stephenson
FIGHTING
TO AXE ALS Words and images Dwain Hebda
Les Stephenson’s eyes scan the room like a hummingbird. They’re a window to his soul, providing subtitles to what the former fire battalion chief is thinking at any given moment. His gaze isn’t the only way he communicates but ever since he lost the ability to speak, a byproduct of amyotrophic lateral sclerosis (ALS), the eyes have been key, turning from sparkling to haunting in a breath. “I’m here,” they seem to say. “I’m still IN HERE.” Susan Stephenson knows his looks with an almost telepathic understanding. It’s a skill that at its core has less to do with Les’ condition than their nearly thirty years of marriage. But ever since his diagnosis two-and-a-half years ago, ALS has sharpened those senses, even on days when her knees buckle under the weight of it all. “You just have to have respect for each other,” she says. “We’ve always had that. We’ve never been one to argue and fight in front of people. We didn’t. I mean, we did get into little spats, but then it’d be over with. “We cry a lot. You know, I’ll cry, and get on a crying spell, and he’ll ask me why. I’m like, ‘You know why: life.’ And he’ll do the same thing because he feels like he’s a burden to me, which he’s not. You’re not. It’s not a burden.” **** ALS, commonly known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease affecting the nerve cells in the brain and spinal cord. The disease robs people of muscle movement, leading to the loss of various body DOSOUTHMAGAZINE.COM
