14
people
Les and Susan Stephenson
FIGHTING
TO AXE ALS Words and images Dwain Hebda
Les Stephensonâs eyes scan the room like a hummingbird. Theyâre a window to his soul, providing subtitles to what the former fire battalion chief is thinking at any given moment. His gaze isnât 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. âIâm here,â they seem to say. âIâm still IN HERE.â Susan Stephenson knows his looks with an almost telepathic understanding. Itâs a skill that at its core has less to do with Lesâ 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. âYou just have to have respect for each other,â she says. âWeâve always had that. Weâve never been one to argue and fight in front of people. We didnât. I mean, we did get into little spats, but then itâd be over with. âWe cry a lot. You know, Iâll cry, and get on a crying spell, and heâll ask me why. Iâm like, âYou know why: life.â And heâll do the same thing because he feels like heâs a burden to me, which heâs not. Youâre not. Itâs not a burden.â **** ALS, commonly known as Lou Gehrigâs 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
