TThe night after their son Mats died, 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 confusing,” Trude remembers that day 10 years ago. “Then Robert said, ‘Maybe we should contact 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 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 his WoW account, but Robert found the password to Mats’ blog and they wrote a post. It began: “Our dear son, brother and best friend has left us tonight…” But, they wondered, would anyone read it?
Trude and Robert were surprised by the answer. Emails started coming in from all over the world: “Mats’ passing hit me hard.” “Mats was AMAZING.” “You should be proud of your son.” “Mats was a true friend to me.” The couple were distressed that Mats’s existence was lonely, that the illness had isolated him, but here were messages, a few pages long, from his closest WoW friends. For the uninitiated, WoW feels a bit like The Lord of the Rings, set in a fantasy world called Azeroth, populated by trolls, elves, and medieval glamourpusses waging war with fancy swords.
Almost a decade earlier, at age 17, Mats created an alter ego in WoW. Lord Ibelin Redmoore was a private investigator with flowing golden hair, the physique of Thor, and a roguish charm. Mats had played the character for years, but the emails were the first hint 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, set to debut in theaters and hit Netflix later this month.
I meet Trude and Robert at a hotel in London. 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. The closeness of her family shines throughout Ibelin’s remarkable life.
The Steens have been approached before to make a film about Mats. “We said no to all of them,” says Robert. “It was very close, very personal, very emotional.” But they felt a connection with Benjamin Rees, a filmmaker who, at 35, is the same age as 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 images of Trude in the hospital after giving birth, stroking Mats’ cheek in wonder at this little miracle. We watched Mats taking his first steps at about a year old, very proud. There was no suggestion that anything was happening at that time. It became clearer when he was three. “Mats was staggering and falling a lot,” Trude recalls. Doctors initially considered the eager couple first-time parents, before Mats was finally diagnosed with Duchenne MD at age four.
One of the most painful moments in the film is Trude opening up about the guilt she feels for Mats’ illness, as she carries the Duchenne gene. “I still feel that way sometimes,” she admits today. “I know it’s wrong. I spoke to Mats about this. He told me, ‘Don’t say that, Mom. It’s not your fault.’” His eyes fill with tears. She gave up her job as a parliament counselor in Oslo to look after Mats for a decade. “The bond was very strong. We were so close.
In the documentary, we also hear from Mats – his words, from the blog, are spoken by an actor. He’s funny and insightful – and passionate about games: “It’s not a screen – it’s a gateway to wherever your heart desires.”
Then the film takes a complete turn, suddenly switching to animation, immersing the audience in WoW. It’s a move that will confuse some, but will seem like a stroke of genius to others. Rees hired animators to reconstruct Mats’ virtual life, with every line written by Mats and his friends as they collaborate on the in-game universe – culled from 42,000 pages of dialogue. “It’s almost like they’re writing a book in real time,” says Rees.
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 man, I could almost feel it.” The moment is especially poignant because Mats also wrote about how relationships felt out of his reach: “Love has always been a complicated subject for me. It feels like it wasn’t made for me.”
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Mats made close friends online and touched their lives. But for years he hid his illness in WoW, a place where he wasn’t 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 ended up sharing with some of his gamer friends.
Ibelin’s remarkable life comes at a time when parents are distressed by the amount of screen time they should 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 the other children. He was on his Game Boy during school breaks while other kids played football. Looking back, Robert wishes he had tried harder to understand how important this was to Mats. “He would often invite us to sit next to him and experience how the gaming world was happening,” he says. “But I thought it was boring.”
Rees made a point of creating a balanced portrayal of the 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 expects you to engage with the complexity of the issue. “It was a big advantage for Mats to be able to play in 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 show off Ibelin in their offices. “I had to take extra doses of asthma medicine before the meeting,” says Rees with a smile. But, like everyone else, the bosses finished the film in tears.
Trude and Robert invited Mats’ WoW friends – people they had never met – to his funeral. Were they worried? “Should you invite strangers to the funeral?” says Roberto. “Should you share the story with a documentary producer? We just asked ourselves, ‘What would Mats like to do?’”
Mats always talked about wanting to be remembered. “That’s natural,” says Robert, “when you know you’re going to die young. It is not? One of the biggest fears is not being remembered. No one will notice. Trude agrees: “He wanted to make a difference for other people. He said that a lot.”
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