In a cozy living room lined with books, Joël Bernier’s fingers dance over the fretboard of his acoustic guitar. The clever chord sequence conjures a pensive yet hopeful vibe. He’s written a riff that resonates all the more during this trying period of his life.
A memoir by U2 frontman Bono sits on Joël’s coffee table. Tucked between the pages is a bookmark memorializing his Uncle Julien, who played guitar in a 1960s rock n’ roll band. Joël remembers fondly the family gatherings where brothers Julien and Simon would serenade everyone with renditions of songs by the Everly Brothers, Elvis Presley and the Beatles.
Inspired, Joël took up the guitar himself at 14. His younger brother, Nicolas, got a drum set, and they turned their basement into a cacophonous playground.
“At some point our mom says, ‘OK, guys — if you want to play music, you’re going to need lessons,’” Joël recalled. “We did, and, eventually, we got better.”
They saved up for some real instruments and, along with a few neighborhood friends, started their first band two years later. After 40 years, “we’ve never stopped,” he says.
Music has long been a source of joy and purpose for Joël. It’s continued to be an integral part of his life since he was diagnosed with glioblastoma (GBM).
Until his mid-20s, Joël earned a living solely playing rock music in southeastern Quebec bars. He got a steadier gig as a record store manager, and he went back to school and studied sound engineering. He became a store manager and then a buyer for Archambault, Quebec’s largest retailer of musical instruments.
All the while, he kept playing covers with Nicolas and writing his own music. His band in the 2000s played original songs that he describes as a cross between Coldplay and the Dave Matthews Band. He enjoys emulating the distinctive sound of The Edge, U2’s lead guitarist.
Joël met his wife through music. He was tuning up one night at a Montreal bar when a bandmate’s girlfriend introduced him to Danika. They didn’t exactly hit it off at first, she says, but she liked the music and came to see more of their shows. He fell in love with her on the third encounter and convinced her to go out with him.
Twenty years later, Danika is glad she agreed. She likes his quick wit and admires his creativity, his sensitivity and, more than anything, the emotional support he provides her. A grade school English as a Second Language teacher, Danika says Joël listens attentively when she recounts the trials and tribulations of any given day.
“He’s my partner,” she said. “I’m there for him, and he’s there for me.”
Danika knew something was up when Joël’s symptoms surfaced. Battling nagging headaches and constant fatigue, his wit and attention waned. She suspected he was experiencing depression.
Joël was worried, too. Multiple times on his hour-long commute to Montreal, he caught himself drifting out of his lane. In another few weeks, his fingers grew numb, making it feel as if he were playing his guitar “with boxing gloves on.”
Perhaps most alarming: Joël gradually forgot the songs he’d been working on. No matter how hard he tried to concentrate, the chord sequences and catchy series of notes eluded him.
“It was very strange and very scary,” he said. “I didn’t have any recordings of these ideas, so they were just… gone.”
Danika and Joël share a family doctor, and during her own appointment, she flagged Joël’s symptoms. When Joël visited shortly thereafter, the doctor saw what Danika was talking about. She ordered an MRI, which revealed a brain tumor slightly smaller than a billiard ball. Joël was hospitalized for the next 10 days and diagnosed with GBM.
“I went into a panic because I had no idea what to do,” Danika said. “I was ready to deal with depression. I was not ready to deal with a brain tumor.”
Joël says he was lucky — the tumor mostly sat atop his right temporal lobe rather than deep within, making it easier for surgeons at Charles-Le Moyne Hospital to remove. Soon after his craniotomy, he noticed that his pressure-induced symptoms were either gone or greatly reduced. He picked up his guitar a week after surgery, and the boxing gloves were gone.
Joël calls himself “a bit of a science geek,” and he couldn’t help but be fascinated as he learned more about the brain — “a very strange machine” — as well as the medical and surgical technologies used to treat GBM.
“I was keen to say, ‘OK, let’s go, let’s do all the treatments available,’” he said. “I’m grateful to live in a country where I could have access to this kind of medicine and technology.”
Joël began standard of care treatments and, through the University of Montreal Health Centre, accessed Novocure’s therapy, which had just recently become the first GBM treatment approved in Canada in more than 12 years.
He was overwhelmed by the support provided by friends, colleagues and family, especially Danika.
“I just realized, ‘Man, I’m loved. People care for me,’” he said. “I was really touched by all the good energy sent my way.”
"I’m grateful to live in a country where I could have access to this kind of medicine and technology."—Joël Bernier,
living with GBM
As he coped with ongoing treatment, Joël found additional comfort in playing familiar tunes on his acoustic guitar. He frequently opened his Beatles songbook to a random page, recalling memories of Uncle Julien and his love for the Fab Four. Joël also played classics like Elvis Presley’s “Hound Dog” and REM’s “The One I Love.” Another go-to was “Bobcaygeon” by The Tragically Hip, a Canadian band.
Slowly but surely, the guitar riffs and melodic lines at the heart of his newer material started to return. He’d be absentmindedly tinkering when a certain chord jogged his memory. That’s one of the missing chords, he’d think.
“It was all in there, somewhere,” he said. “And eventually, it all came back to me.”
As he coped with ongoing treatment, Joël found additional comfort in playing familiar tunes on his acoustic guitar. He frequently opened his Beatles songbook to a random page, recalling memories of Uncle Julien and his love for the Fab Four. Joël also played classics like Elvis Presley’s “Hound Dog” and REM’s “The One I Love.” Another go-to was “Bobcaygeon” by The Tragically Hip, a Canadian band.
Slowly but surely, the guitar riffs and melodic lines at the heart of his newer material started to return. He’d be absentmindedly tinkering when a certain chord jogged his memory. That’s one of the missing chords, he’d think.
“It was all in there, somewhere,” he said. “And eventually, it all came back to me.”
Joël now records all his songwriting sessions, using a smartphone app or his more advanced audio equipment at home. He recently bought his fourth electric guitar, a Fender American Ultra Telecaster. He’s excited for a long-discussed musical project with Nicolas and one of their nephews, a guitarist and singer who has inherited their love for music.
“The challenge always is finding the time,” he said. “But I’m playing like I used to.”
The health status of patients featured reflects their condition at the time the story was written and photographs were taken and may have changed over time.
patient experience
