'Would not wish it on my worst enemy,' says Winnipegger sidelined with rare pain syndrome

Ethan Belcourt wants his life back. 

In 2019, after a year of constant pain, Belcourt was diagnosed with complex regional pain syndrome, or CRPS. 

Since then, the Winnipegger's life has dramatically changed. He is on disability and spends most of his time at home, save for appointments and errands. 

"This disease has sucked me basically to the point where I am tired all the time, that I am fighting pain every day," said Belcourt. "It just sucks the energy out of me."

CRPS is relatively uncommon, and is often the result of an injury, though the pain is not commensurate with the injury. There are different classifications and causes of the pain, and treatment is varied too.

In Canada, an organization called PARC, or Promoting Awareness of RSD and CRPS, hopes to shed more light on the condition. (The syndrome was formerly known as reflex sympathetic dystrophy, according to the organization.)  

"[The] pain is excruciating, way more than you would expect," said Dr. Javier Webar, a pain specialist in Winnipeg who treats patients with CRPS.  

"The nerve endings that are responsible for carrying the pain information from everywhere in your body become hyperactive."

Belcourt says the condition has turned his life upside down. He expects to be on disability for the rest of his life.

"I'll put this simple — with the amount of pain I get with this, I would not wish it on my worst enemy," said Belcourt. "That's how bad the pain can get some days."  

Belcourt's story and CRPS are the focus of a new three-minute documentary by students in the Create program at Winnipeg's Sisler High School, a post-high school program that trains students in the creative digital arts, including filmmaking. 

Create students Shai Vilenski East, Shea Miller and Maya Reuther produced the new short video.

Meet the filmmakers 

Shai Vilenski East has been fascinated with the world of film and entertainment since an early age. He made his first stop-motion film when he was nine and has continued to make films for the sake of entertainment and fun.

In junior high, he was an editor for his school's news program, and he created multiple short films in high school. Now, his dream is to become an editor, creating films that are nothing short of awesome.

Shea Miller immersed herself in literature, music and movies beginning in childhood. She is now an aspiring filmmaker and has a strong passion for storytelling. As a filmmaker, she hopes to voice life experiences for herself and for others.

She has enjoyed expanding her knowledge and learning different ways to tell stories through documentaries and journalism. 

Maya Reuther has been making videos since childhood. She loved recreating famous movie scenes or making stop-motion videos. She has recently gained an interest in Foley and creating music videos.

In her spare time, Maya likes to listen to and make music, create sculptures and try new, crazy makeup looks.

More about Project POV: Sisler Create

CBC Manitoba's Project POV: Sisler Create is a storytelling collaboration that partners filmmaking students with CBC Manitoba journalists to produce short docs. You can see past projects here. 

The Winnipeg School Division's Create program is hosted at Sisler High School and trains post-high students in the creative digital arts.

During fall 2024, CBC journalists taught storytelling to filmmaking students and led producing workshops at Sisler.

Create focuses on education and career pathways into the creative industries. Students can take courses in animation, film, game design, visual effects, graphic design and interactive digital media.