It’s 1:30pm on the second Friday of the month. One by one little boxes appear on the screen, with their names in the bottom left corner, giving the only clue to who’s behind the darkness that precedes their reveal. For the regulars this group is kind of a second family. I can sense a slight feeling of anticipation to see who will actually appear on the Zoom screen, because doctor’s appointments, a poor sleep the night before, or the general busyness of living with ALS make it hard to always show up. In short order we have our answer. There are 8 clients today. Zoom has been a necessary transition because of the pandemic, but it’s also afforded people the ability to connect with others across Northern Alberta. Vermillion… Barrhead… Edmonton… St. Albert… Morinville.
There’s Nancy in her kitchen… then Colleen with stylish wallpaper as her backdrop... Richard with the safe blurred background so we can’t see how messy his kitchen is. Jim comes on and in hushed tones, says goodbye to his wife who is on her way out the door. She leaves the frame, but then does an about face and leans into the picture with a big hello to the group. There’s a refrain of hellos! Dennis and Lorne are regulars. Lorne is there with his BiPAP on, making it a little hard for him to talk, but not to listen. Dennis, our 2022 Edmonton Walk Ambassador, is leaning in, trying to read the tiny lettering of everyone’s name, welcoming everybody by name. Morgan shows up, a little reserved, since it’s only his second time, but that quickly fades as the group draws him in. The always affable Danny comes last, rounding out the group with his wit and smile, bringing a boost of energy to the group.
After the round of greetings subsides someone asks where so-and-so is? “I think they said they will be vacationing in BC this week,” Colleen says. The regulars know each other. And the new people are not strangers for long, just family that haven’t met yet. It’s a community of kindred spirits that have gathered from across the province courtesy of technology. A group of individuals that are as different, as they are the same. That likely never would have crossed paths. Save they all share one common, terrible thing: an ALS diagnosis. And that has forged a bond not often seen.
We take turns going around the group, sharing our updates from the month. One person shares that for some reason every time he brushes his teeth, he cries. Someone chimes in, “me too!” The rest nod in solidarity. A discussion around mental health ensues. “Maybe we should get a speaker to come in to talk about it?” “Great idea! I see a counselor I was given through the ALS Clinic who would be perfect!” Several others concur as they have seen the same counselor.
One of the women shares how when her hands aren’t working right, she is driven in circles, “is this ALS? Or arthritis? Or is it something else?” There’s a chorus of agreement. “It happens all the time!” Richard says he feels like a dog chasing his tail, “Is it the meds? ALS? Something I ate?”
Someone shares they are thinking about buying an accessible van and asks for advice. Even though they are still mobile, they want to be prepared. Jim gently suggests that maybe they’re “overthinking it.” It’s so hard to prepare when ALS doesn’t follow a set course and goes where it goes. Maybe you’ll never need it? Morgan remarks that ALS is so different for everybody. Lorne offers what worked in his situation. Nancy empathizes, “If it’s any consolation, my mind always jumps ahead.” It’s hard not to.
One of the guys asks if swollen feet are common and that leads to a range of helpful, and some amusing remedies, thrown into the pot of communal wisdom. He takes notes and promises to report back next meeting on what worked.
Danny says, “this is what makes this group special, everyone’s eyes are different.” They see solutions that you might not see. Jim says that after he was diagnosed, he felt like “a bug swimming in a bowl of water.” Looking for anything to grab onto, but not able to climb out. “This group is fantastic,” he says, “it helped me take it one day at time!” Richard says this group has become a safe place. “This group is a second family, where you can talk about things you might not want to talk about with you own family.”
Time flies and before you know it, it’s time to say goodbye. Farewells are said and one by one the screens disappear. This family of ALS warriors have helped each other make it possible to carry on and fight another day.