This Toronto actor tells the story of his mother’s Huntington’s diagnosis on stage

When Sébastien Heins was 10 years old, his mother, Shella, asked him if he would like to audition for the role of Young Simba in Toronto’s premiere production of “The Lion King”. A choirboy with no theater experience, he successfully auditioned for the part and played it for nine months, sparking his love for theatre.

Heins, now 34 and a thriving theater performer, wrote and stars in “No Save Points,” a play about his mother’s diagnosis of Huntington’s disease, a rare genetic disease. “It feels somewhat poetic that all these years later I’m using theater to tell my mother’s story,” he said.

The play is an innovative combination of video game storytelling techniques, motion-capture and haptic technology, and autobiographical performances, in which Heins becomes a video game character and spectators control him with hand controls. The concept of not controlling one’s own body becomes a metaphor for the experience of Huntington’s disease, which Heins describes on the show as “ALS, Alzheimer’s and Parkinson’s all rolled into one.”

The run of the production has been extended through July 2 in Lighthouse ArtSpace.

I interviewed Heins and his father, John, together on Zoom about what it was like to share such personal experiences publicly, and how they are evolving as a family with Shella’s experience with the disease.

“I think it was a bit difficult for Shella to put this out in the open because she doesn’t necessarily want anyone to look at her or see this happen to her. She wants to remain anonymous and enjoy what Sébastien is creating,” said John. “But as time passed, she can no longer hide. It’s very openly visible now,” he said of Huntington’s symptoms, which include involuntary jerks and fidgety movements.

Sébastien Heins with spectators in “No Save Points.” Later in the show, Heins becomes a video game character and the audience plays him with hand controls.

Born in Jamaica, Shella came to Canada to study at Ontario College of Art (now OCAD University), where she met John, who was born in Berlin and moved to Canada when he was two. They have been together for 48 years and Sébastien is their only child.

In the show, Sébastien tells a remarkable true story about a family trip to Jamaica 10 years ago. Shella had some symptoms but thought it was Ménière’s disease, an inner ear disorder. While walking through a market in Kingston, Sebastien noticed a woman with unusual and strangely familiar body movements, then realized it was his aunt, his mother’s sister.

The fact that both sisters moved in the same way was the beginning of the realization that their medical conditions were genetic and serious. “Suddenly it was as if this lens was looking into the future,” said Sébastien. “I remember going away pretty shaken.”

“It was well received,” John said of that experience. “We were hopefully trying to hide something, say it was from Ménière, but that didn’t feel quite right.”

One of the challenging episodes Heins narrates on the show is that his mother has to surrender her driver’s license. “It’s always a difficult situation, that someone wants to stay independent for as long as possible,” says John. “I think once you get to a certain age, it becomes really hard to accept that you can’t do things and to hold on for as long as you can.”

“I have a deep fear that my mother will lose her sense of purpose,” said Sébastien. “She’s always been such a dynamo in our family, such a driving force, and has inspired me in so many ways.”

Shella has a successful career as a designer and real estate agent and continues to work, with colleagues taking over aspects of the real estate business that require mobility. John worked as an industrial designer, sometimes collaborating with Shella, until he suffered a stroke in 2019 and left his job.

Early in their relationship, Shella and John traveled extensively throughout Europe and South America with a James Beard cookbook in tow: John cooked meals for people they met while hitchhiking. “They were in their late thirties, early forties when they had me,” Sebastien said, “so they’d already lived this huge life. I was welcomed to these adult dinners and great art, great friends, art openings and museum trips,” he said.

Sebastien met his friend and frequent collaborator Mitchell Cushman when both were students at the University of King’s College at Dalhousie University. Cushman is Artistic Director and Sébastien Associate Artistic Director of Outside the March theater company, which specializes in site-specific and environmental theatre, and produces ‘No Save Points’.

John and Shella clearly consider the extended family of the Outside the March team: they moved out of their home in Roncesvalles for six weeks in 2014 so the company could put on a show there.

While some might consider it a sacrifice to leave your house for more than a month, John doesn’t think he and Shella did anything out of the ordinary. “We enjoy what he does,” said John of Sébastien’s work. “Because we like to travel and live in different places, we didn’t really see anything that was a particular hardship for us.”

John and Shella have come to see “No Save Points” twice, during a preview performance and then on opening night.

“They are always your child,” said John van Sébastien. “You want to see what’s going on in their being, what they’re building, what they’re doing. And it’s also to see the reaction of the people… it’s good to hear them laugh because one of the things you worry about is it getting too serious. Shakespeare always smiles for people and also tells a story.”

John also learned a thing or two. “I didn’t know the Game Boy was such a big part of his life. But there are many things you don’t know about your child.”

Today, John and Shella’s world is getting smaller and everything revolves around their home.

“My parents have a beautiful backyard,” says Sébastien. “So that’s a place where we like to gather and eat together and enjoy the sun. It is now difficult for my mother to walk distances. But that backyard is our oasis at the moment.” Sébastien and his wife live in downtown Toronto and visit regularly.

“My wife did most of the gardening,” said John. “And I used to climb trees. But last time Sebastién and his wife harvested the apricots… It’s an existence where you live in the moment. And you just try to do what you can.”

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