Friedreich’s ataxia (FA) is a disease that receives very little fanfare and public awareness; there aren’t months dedicated to it and it is seldom the focus of donation campaigns, yet it is a degenerative condition that has debilitating effects on those who are afflicted.
“It’s a genetic, neuromuscular, life-shortening disease, and it affects things like balance and coordination. It leads to fatigue, but it also leads to heart disease and other things like that,” says Joel Kleine, a Grade 5 teacher and bassist for local indie-rock band Bombproof the Horses. “I think there’s maybe 10 of us in Edmonton that might have it.”
FA emerged on many people’s radar in January thanks to Amanda Renneberg, also known as “the girl who met Justin Timberlake.” Kleine was pleased to see FA receiving some much-needed awareness and wanted to keep the name in the public eye, so he created a benefit concert in which proceeds will be donated to the Friedreich’s Ataxia Research Alliance (FARA). Plus, having the show filmed for the new TV series Secret Setlist, to be aired on Telus Optik TV, won’t hurt either.
“When I was diagnosed and the doctor said, ‘you have Friedreich’s ataxia,’ I was like, ‘OK, what is that?’ I have no idea and nobody around me has any idea,” Klein recalls. “Within our family and communities that we’re connected to, those people know what it is, but the idea is let’s get it out there so there’s more awareness.”
Kleine was diagnosed with FA seven years ago when he was 32, an age when a diagnosis of the disease is considered “late onset,” as it’s most often diagnosed in children between the ages of five and 15. Kleine had begun to realize things weren’t quite right when his legs were becoming increasingly fatigued—initially thinking he was just out of shape—but as the gait in his walk became more and more off, he knew it was time to see a doctor. The disease has resulted in Kleine depending on a wheelchair, and despite his coordination not quite being what it used to be, he has continued to play music and is determined not to let his condition get in the way of Bombproof the Horses progressing—the band recently released its debut EP The Ground The Sky.
“It was hard to become dependent, and there are still lots of times where I have to be. For instance, being in a band, we played at the Black Dog two weeks ago and they’ve got two little steps to get on stage, so the other guys in the band, they all kind of grabbed part of my wheelchair and hoisted me onto the stage,” Kleine explains, noting the camaraderie and teamwork is a benefit of being in a band, but there are things he does miss. “I have two boys that are ages seven and nine and I miss being able to say, ‘Hey, let’s go outside; let’s go for a walk,’ because [now] that’s a big ordeal for those things to happen.”
Kleine’s experience has also raised the larger issue of music venues being wheelchair accessible. Just think about some of Edmonton’s most popular venues: how many of them are only accessible by a flight of stairs? This was one of the reasons Kleine chose Avenue Theatre for the show—he can easily get in and out and owner Steve Derpack offered to build him a ramp to get onstage.
“I have had good conversations with venue owners and some that I haven’t had conversations with yet, but I plan to,” Kleine says, musing that increasing accessibility may become one of his main focuses, but it can be a frustrating process. “It feels a little bit futile sometimes; it feels like your ideas are falling on deaf ears because a lot of these venue owners, they’re scraping by—we don’t have 1000 bucks to build a ramp kind of thing—but people so far have been receptive to the ideas that I give them.”
Sat, Apr 5 (8 pm)
With The Gibson Block, F&M, Two Bears North, Jesse Northey
Avenue Theatre, $13 (advance), $18 (door)