The night their son Mads died at just 25 years old, Trude and Robert Steen were sitting on the couch in their living room in Oslo with their daughter Mia. they couldn’t sleep. “Everything was a blur,” Trude recalls of that day 10 years ago. “Then Robert said, ‘Maybe we should contact Mads’ friends at World of Warcraft.'”
Mats was born with a disease called Duchenne muscular dystrophy. Duchenne muscular dystrophy is a progressive disease that gradually weakens the muscles. Mads was diagnosed at age 4 and started using a wheelchair at age 10. In his later years, he could only move his fingers and needed a tube to clear his throat every 15 minutes. As my disability progressed, the amount of time I spent gaming increased, reaching 20,000 hours (about the same as a full-time job) over the past 10 years.
It’s not a screen – it’s a gateway to what your heart desires
Trude and Robert wondered how they could share the news of his death with their online acquaintances. Although they were unable to access his WoW account, Robert found the password to Mads’ blog and wrote a post. It began: “Our beloved son, brother and best friend left us tonight…” But they wondered, will anyone read it?
Trude and Robert were surprised by the reaction. E-mails began pouring in from all over the world saying, “Mads’ death had a huge impact on me.” “Mads was wonderful.” “You should be proud of your son.” “Mads was a true friend to me.” While I was struggling, here was a multi-page message from some of my closest WoW friends. To the uninitiated, WoW looks a bit like The Lord of the Rings. The story is set in a fantasy world called Azeroth, where trolls, elves, and glamorous medieval women wage war with flashy swords.
“Games are my sanctuary”…Mads Steen. Photo: Christopher Kumar/PR
Nearly 10 years ago, at the age of 17, Mads created an alter ego in WoW. Lord Iveline Redmoor was a private detective with flowing golden hair, a Thor-like physique, and a rogue’s charm. Mads had been playing as the character for years, but this email was the first time his parents knew how deep their connections were in the gaming community. This story is now told in the extraordinary documentary “The Amazing Life of Evelin,” four years in the making, which will be released in theaters soon and on Netflix later this month.
I met Trude and Robert at a hotel in London. Lately, Robert has been touring schools in Norway with his film. “I think I’ve seen it 150 times,” he says with a smile. They are a warm couple, frank and open. The closeness of their family shines throughout The Amazing Life of Evelin.
Steens had previously been approached to make a film about Mads. “We said no to everyone,” Robert says. “It was too intimate, too personal, too emotional.” But they felt a kinship with Benjamin Rees, a 35-year-old film director who would have been around the same age as Mads had he been alive.
The Steens love to film everything, and the documentary begins by telling the story of Mads’ life through home movies. At screenings, this part of the movie usually ends with half the audience in tears. The footage shows Trude, who was hospitalized after giving birth, stroking Mads’ cheek, amazed at this little miracle. We watched with great pride as Mats took his first steps at around one year old. At that point there was no indication that anything was wrong. By the time he was three years old it became more clear. “Mads staggered and fell several times,” Trude remembers. Doctors initially dismissed the couple as anxious first-time parents until Mads was finally diagnosed with Duchenne MD when he was 4 years old.
One of the most heartbreaking scenes in the film is when Trude reveals the guilt she feels about Mads’ illness, which is a carrier of the Duchenne gene. “I still feel that way sometimes,” she admits today. “I know it’s wrong. I talked to Mads about it. He said to me, ‘Mom, don’t say that.’ It’s not your fault. ” Her eyes filled with tears. She decided to give up her job as an advisor to the Oslo parliament and take care of Mads for 10 years. “The bond was very strong. We were very close.”
You can also hear Mads’ words in the documentary. His words on the blog are narrated by the actor. He’s funny, insightful, and passionate about the game. “This is not a screen. It’s a gateway to where your heart desires.”
The film then takes a complete turn and suddenly switches to animation, drawing the audience into the world of “WoW”. This may be disconcerting to some, but to others it may feel like a stroke of genius. Reese asked his animators to recreate Mads’ virtual life, extracting every line from 42,000 pages of dialogue written by Mads and his role-playing friends as they collaborated on the in-game world. “It feels like I’m writing a book in real time,” Reese says.
In Norway, most media coverage of the game is negative. But this film is a celebration of online community
We see Eveline’s first kiss with Rumor, the alter ego of a Dutch gamer named Lisette Reuvers. Mads wrote about the kiss on his blog: “It was just a virtual kiss, but you could almost feel it.” This moment is especially poignant because Mads also writes about feeling like relationships were out of his reach: I feel like it’s not directed at me. ”
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Mads has made close friends online and influenced their lives. But for years, he hid his illness in WoW, a place not defined by disability. “Games are my sanctuary,” he writes. “I’m safe here, I care.” But in the summer of 2013, he started a blog, which he eventually shared with some gaming friends.
“We were very close”… Trude and Robert Steen. Photo: Christopher Kumar
The Amazing Life of Evelin comes at a time when parents are wondering how much screen time they should give their children. There is a saying in Norway: “Good people climb trees.” However, because of Mads’ disability, Trude and Robert made him spend more time playing games than the other children. During school breaks, he played his Game Boy while other kids played soccer. Looking back, Robert wishes he had tried harder to understand how important it was to Mads. “He often invited us to come and sit with him to experience what this gaming world was like,” he says. “But I thought it was boring.”
Rees was keen to create a balanced portrait of the game. “In Norway, I think 95% of the media is negative. But this film is a celebration of the online community.” He also hopes it addresses the complexity of the issue. “It was a big advantage for Mats to be in that game. He felt free. It was his sanctuary, but he could also hide. That caused a lot of problems for him. I think so.”
Reese risked everything to make the documentary. He worked on it for three years before getting permission from Blizzard, the company that owns WoW. “We said to them, ‘We’re a small production company in Norway. Can we get the rights for free?’ Blizzard’s bosses invited him to California to inspect Evelin in their offices. “I had to take extra asthma medication before the meeting,” Reese says with a laugh. But like everyone else, the bosses finished the movie in tears.
Trude and Robert invited all of Mads’ great friends, some of whom they had never met, to his funeral. Were they worried at all? “Should I invite strangers to my funeral?” says Robert. “Should we share this story with the documentary producers? We just asked ourselves, ‘What does Mads want?’
Mats said he wanted to be remembered well. “If you know you’re going to die young, that makes sense,” Robert says. Isn’t it? One of my biggest fears is not being remembered. No one will notice. ” Trude nodded, “He wanted to make a difference in other people. He said it well.”
The Remarkable Life of Ibelin will be released in UK cinemas and on Netflix from October 25th.
