the night after the death of their son Mats, aged just 25, Trude and Robert Steen sat on the sofa in their living room in Oslo with their daughter Mia. They couldn’t sleep. “Everything was a blur,” Trude remembers of that day 10 years ago. “Then Robert said, ‘Maybe we should reach out to Mats’ friends at World of Warcraft.'”
Mats was born with Duchenne muscular dystrophy, a progressive disease that causes muscles to gradually weaken. He was diagnosed with the disease at age four and began using a wheelchair at age 10. By the end of his life, Mats could only move his fingers and needed a tube to clear his throat every 15 minutes. As he became increasingly disabled, he spent more time gaming: 20,000 hours in his last decade (about the same as if it were a full-time job).
Trude and Robert wondered how they could share the news of his death with their online acquaintances. They didn’t have access to their WoW account, but Robert found Mats’ blog password and they wrote a post. It began: “Our beloved son, brother and best friend left us tonight…” But, they wondered, would anyone read it?
Trude and Robert were stunned by the response. Emails began to arrive from all over the world: “Mats’s death has hit me very hard.” “Mats was AWESOME.” “You should be proud of your son.” “Mats was a true friend to me.” The couple had been distraught because Mats’ existence was lonely, because the illness had isolated him, but here were messages, a few pages long, from his close friends in WoW. To the uninitiated, WoW is a bit like The Lord of the Rings, set in a fantasy world called Azeroth populated by trolls, elves, and medieval glamourpusses who wage war with fancy swords.
Almost a decade earlier, at age 17, Mats had created an alter ego in WoW. Mr. Ibelin Redmoore He was a private investigator with flowing golden hair, Thor’s physique, and a mischievous charm. Mats had played the character for years, but the emails were the first indication his parents had of how deep his connections were in the gaming community. The story is now told in The Remarkable Life of Ibelin, an extraordinary documentary, four years in the making, about to hit theaters and hit Netflix later this month.
I meet Trude and Robert at a London hotel. Recently, Robert has been touring Norwegian schools with the film. “I think I’ve seen it 150 times,” he says with a smile. They are a warm, direct and open couple. Her family’s closeness shines throughout Ibelin’s Remarkable Life.
The Steens had been approached before to make a film about Mats. “We said no to all of them,” Robert says. “It was too close, too personal, too emotional.” But they felt a connection with Benjamin Rees, a filmmaker who, at 35, is the same age Mats would have been had he lived.
The Steens like to film everything and the documentary begins by telling the story of Mats’ life through his home movies. At screenings, this part of the film usually ends with half the audience crying. It features footage of Trude in the hospital after giving birth, caressing Mats’ cheek in wonder at this small miracle. We see Mats take his first steps at one year old, very proud. There was no suggestion that anything was going on at the time. It was clearer when I was three years old. “Mats wobbled and fell a lot,” Trude recalls. Doctors initially wrote the couple off as anxious first-time parents, before Mats was finally diagnosed with Duchenne MD at age four.
One of the most painful moments in the film is when Trude opens up about the guilt she feels for Mats’ illness, because she is a carrier of the Duchenne gene. “Sometimes I still feel that way,” he admits today. “I know it’s wrong. I spoke to Mats about it. He told me: ‘Don’t say that, mom.’ It’s not your fault.’” Her eyes fill with tears. She left her job as a parliamentary adviser in Oslo to care for Mats for a decade. “The bond was very strong. “We were so close.”
In the documentary we also hear Mats: his words, in the blog, are spoken by an actor. He’s funny, insightful, and passionate about gaming: “It’s not a screen, it’s a gateway to wherever your heart desires.”
Then the movie comes full circle and suddenly switches to animation, immersing the audience in WoW. It’s a move that will baffle some, but others will find it a stroke of genius. Rees commissioned animators to reconstruct Mats’ virtual life, with every line written by Mats and his role-playing friends as they collaborate in the in-game universe, culled from 42,000 pages of dialogue. “It almost feels like they’re writing a book in real time,” Rees says.
We see Ibelin’s first kiss with Rumour, the alter ego of a Dutch player named Lisette Roovers. Mats wrote about the kiss on his blog: “It was just a virtual kiss, but I could almost feel it.” The moment is especially poignant because Mats also wrote about how relationships felt out of reach: “Love was always a complicated topic for me. I feel like it’s not for me.”
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Mats made close friends online and shaped their lives. But for years he hid his illness in WoW, a place where he was not defined by disability. “Games are my sanctuary,” he wrote. “I’m safe here, valued.” But in the summer of 2013 he started the blog, which he eventually shared with some of his gamer friends.
Ibelin’s remarkable life comes at a time when parents are agonizing over how much screen time to give their children. In Norway there is a saying: “Good people climb trees.” But because of his disability, Trude and Robert let Mats spend more time playing than other children. He was on his Game Boy during breaks at school while other kids were playing soccer. Looking back, Robert wishes he had made more of an effort to understand how important he was to Mats. “He invited us very often to sit with him to experience how the world of video games was going,” he says. “But I thought it was boring.”
Rees wanted to make a balanced portrait of video games. “In Norway,” he says, “I would say 95% of the media is negative. But this film is a celebration of online communities.” He also hopes it addresses the complexity of the issue. “For Mats it was a great advantage to be able to play that game. He felt free. It was his sanctuary, but at the same time he could also hide. “I think that created a lot of problems for him.”
Rees took a big risk in making the documentary. He worked on it for three years before asking permission from Blizzard, the company that owns WoW: “We wrote them an email: ‘We are a small Norwegian production company. Could we have the rights for free?’ Blizzard bosses invited him to California to screen Ibelin in their offices. “I had to take extra doses of asthma medication before the meeting,” Rees says with a smile. But, like everyone else, the bosses finished the movie in tears.
Trude and Robert invited Mats’ friends in WoW (people they had never met) to his funeral. Were they at all worried? “Should you invite strangers to the funeral?” says Robert. “Should you share the story with a documentary producer? We just asked ourselves, ‘What would Mats want to do?’”
Mats often spoke of wanting to be remembered. “That’s natural,” Robert says, “when you know you’ll die young. Isn’t it? One of the biggest fears is that they won’t remember you. “No one will notice.” Trude nods: “I wanted to make a difference for other people. He said that many times.”