It is the summer of 1989 and a Norwegian couple return from hospital cradling their newborn son. Their names are Robert and Trude Steen, this is their first child and they have named him Mats. The early weeks pass in the delirious, hormone-flooded fug of new parenthood, Robert documenting his son’s wriggles and cries on his camcorder with a new-found paternal pride that has left him dumbfounded. And as the months pass, the camera keeps rolling. Mats grows. He sprouts bright blond Nordic hair. He drags himself to his feet and begins to toddle. His father films him waddling across their living room in a Tom and Jerry T-shirt. He was, Robert remembers, “the most beautiful, perfect child”.
From about the age of two, though, something changes. Robert and Trude cannot put their finger on it at first, but a concern for their child begins to gnaw at them. He struggles to get back to his feet when he falls. Playground obstacles become insurmountable. Robert films Mats as he stumbles and plonks to his bottom. But he just sits on the ground in his dungarees, crying and helpless. “As a parent, you know when something is wrong with your child,” Trude says. They just didn’t know what.
For two years they worry, watching purse-lipped as their son’s physical development slows then stalls. They push and persuade doctors to take their fears seriously. There are tests and examinations and then, finally, they receive the news. “It was 1pm on May 18, 1993,” Robert says. “I remember the hospital office where we were given the message. I remember everything.”
Mats aged five or six
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Their son, the doctor explains, has a condition known as Duchenne muscular dystrophy. It is a genetic disorder that causes progressive muscle wastage and will, over time, deprive Mats of all his remaining strength and mobility. Walking will become harder and harder for him. In a few years he will need a wheelchair and then, eventually, a team of round-the-clock carers as his condition gradually renders him physically helpless. There will be feeding tubes and machines to help him clear his lungs, because swallowing and coughing will be beyond him. He may, his parents are told, live to be 20. “Our world broke apart,” Trude says gently. “The message was devastating, brutal. It was the day we understood it wouldn’t go away. It would rule our lives and, inthe end, also take Mats away from us.”
Amid the shock and horror, there is also the quiet abandonment of the future they had hoped for their son: of skiing and football, of university, a successful career and perhaps one day a family of his own. Instead, they learn to focus on each day as it comes and to find and provide what happiness they can in each moment. Mats grows into an intelligent schoolboy with a droll sense of humour. By the age of eight he is in a wheelchair, but he bonds with his schoolmates in Oslo and shares in the communal passion for video games. He loves his little sister, Mia, and their pet dog. Everyone argues over who gets to be on Mats’ team during family quiz nights.
His teenage years are harder. His friends, inevitably, are drawn into a world of house parties and late-night cinema trips and early romantic relationships. It is a world Mats cannot enter. “No friends came knocking at the door any more,” Robert says, without bitterness. So Mats spends more and more time alone, playing video games. He discovers an online role-playing game called World of Warcraft, in which thousands of players can explore a vast, three-dimensional, Dungeons & Dragons-style fantasy world and work together to complete quests and defeat monsters. He sinks hour after hour into the game and his parents allow him to: he is already denied so many of life’s pleasures, it would seem churlish to deny him this.
At 18, he graduates from high school with excellent grades but is unemployable. He moves into an annexe, is looked after by a rotating team of carers and spends much of his time deeply absorbed in World of Warcraft, his right hand resting awkwardly on a custom-built keyboard, his head lolling to one side as he navigates an epic world. Robert and Trude sometimes sit with him while he plays, but after half an hour they find their attention drifting. “It was boring, just sitting there watching something on screen,” Robert admits. “We didn’t know what was going on.”
Mats around nine
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The years pass. Mats’ 20th birthday comes and goes. He begins to write a blog about his life and condition as his body seems to become smaller and more fragile by the day. In November 2014, he is admitted to hospital with respiratory problems. It is not the first time this has happened and, though these episodesare fraught, he has always returned home after several days of intensive care. This time, however, the Steens are roused by a telephone call not long after they have gone to bed for the night.
“It was the hospital,” Robert says. “They said, ‘We think you should get in your car and hurry here now.’ So we threw ourselves in the car. We had never driven so fast through Oslo, but it was at night, so the streets were quiet.” Robert and Trude flew into the hospital at 12.14am, desperate to see their child. “We were exactly 14 minutes late. He had died at midnight.” The feeling, he says, was “complete emptiness. What had filled our lives, for better or worse, physically, mentally, practically, was now over. It had come to an end.”
Their grief is deepened by the knowledge that their son had lived a small, discreet life of little real consequence. He had made no mark on the world or on the lives of anyone outside his immediate family. Mats had never known romantic love or lasting friendship, or the feeling of having made a meaningful contribution to society. They log in to his blog so they can post a message letting his followers know that he has died. And then they sit together on the sofa, unable to sleep, unable to do anything.
Then something rouses them. It is an email from a stranger, expressing their sorrow at Mats’ death. It is quickly followed by another email from another stranger, eulogising their son. The messages continue, a trickle becoming a flood as people convey their condolences and write paragraph after paragraph about Mats. He had a warm heart, people write. He was funny and imaginative, a good listener and generous. You should be proud of him, everyone stresses. A primary school teacher from Denmark writes that after hearing of Mats’ death, she broke down in class and had to return home. A 65-year-old psychologist from England says something similar. “Mats was a real friend to me,” writes another stranger. “He was an incurable romantic and had considerable success with women.” Someone else writes to them describing Mats’ empathy. “I don’t think,” they say, “he was aware of how big an impact he had on a lot of people.”
Mats aged about 16
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Robert and Trude cannot make sense of this. “Who are these people? Are they crazy or what?” Robert asks, frowning. Slowly, though, with each new email, the truth begins to reveal itself.
Their son had lived by another name. To his family he had simply been Mats. But within World of Warcraft he had existed for years as a charismatic adventurer named “Ibelin”, a strapping swashbuckler with auburn hair tied back in a ponytail and a butch goatee beard. And it was as this digital alter ego that Mats had thrived in a way his family had never appreciated. They had misunderstood what World of Warcraft really was. It had seemed to them like a frenetic action game of monster-bashing and point-scoring. To Mats and the many people he played with – the people now emailing Robert and Trude – it was something far more profound: an immersive world built on social interactions, friendships and shared storytelling. Robert smiles. “This window started to open up to us that let us see he had another life besides his physical life. And that it had been so rich, so big and so full of contentment.”
The story of Mats’ double life, and of the emotional impact its discovery has had on his parents, is told in a new documentary called The Remarkable Life of Ibelin. It is a moving and often deeply philosophical work that tackles questions around the nature of reality and relationships in an increasingly online world. In some ways it is also incredibly ambitious. How do you show the internal world of a terminally ill young man who has now been dead for ten years? How do you recreate the words and deeds that made such an impact on others but which took place within an old online role-playing game? These were perhaps the two greatest challenges facing the Norwegian director Benjamin Ree.
“I’ve spent the past four years trying to find out what kind of person Mats was,” says Ree, who is bearded, cheerful and, as he later discovered, was born within a few days of his subject. “I almost feel like I’ve done a doctorate degree in him, in trying to understand him better.”
In making Ibelin, however, Ree discovered he had a number of unique resources at his disposal. Mats had been a member of a World of Warcraft “guild”, a sort of formal club or fraternity that players can join, often by invitation only. Mats’ guild was called Starlight and had its own online forum on which he was a prolific poster, interacting with other guild members and swapping thousands of messages. The guild also kept a digital log of their members’ every action within the game itself: the transcripted text of every typed conversation their character had, every action and emote they commanded their avatar to carry out — laughing, curtseying, crying, dancing, eating, drinking, hugging — and the timestamped coordinates of every location they visited.
“Mats spent almost 20,000 hours in that world. He basically grew up in World of Warcraft,” Ree says. “And what I saw in all the logs and forums and transcriptions was that coming of age inside a game had a lot of similarities to coming of age in the real world.”
What makes Ree’s film so affecting is the way in which viewers are able to feel as though we are beside Mats as he goes through this coming-of-age process. Using animation in the style of World of Warcraft graphics, we follow Ibelin as he runs through a fantasy landscape of mountain peaks and deep forests. He sits beside a pond and is approached by a beautiful dark-haired young woman named Rumour, who begins to tease him playfully before snatching his hat and running off into the forest. Mats is 17 at this point and, like all teenage boys, he cannot quite work out that the woman is flirting with him. But he eventually twigs that he is supposed to give chase and the pair strike up a conversation. The young woman is, in fact, controlled by a teenage girl from the Netherlands. She is named Lisette and, like her avatar, she has long dark hair. Over the following weeks and months Ibelin and Rumour, controlled by Mats and Lisette, fall into the kind of intense but romantically ambiguous relationship that will be agonisingly familiar to anyone who has ever been a teenager. At one point, Rumour gives Ibelin a peck on the cheek. “It was just a virtual kiss,” Mats remembers years later on his blog. “But boy, I could almost feel it.”
Rumour and Ibelin in World of Warcraft
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Lisette and Mats swap addresses and send each other tokens: mix CDs and, in Lisette’s case, sketches of Rumour and Ibelin embracing. But Mats will not video-chat with her or attend any of the real-life Starlight meet-ups that take place. He does not want her — or anyone else — to know of his condition. In World of Warcraft everyone is physically perfect, so it is a player’s ability to project their personality and charisma that makes them attractive and popular. And Ibelin is attractive and popular. Why risk that by revealing his true nature? “In this other world, a girl wouldn’t see a wheelchair or anything different,” Mats will later reflect. “They would see my soul, heart and mind, conveniently placed in some strong body.”
But though Mats’ true identity remains hidden, what’s striking is how much he is able to affect the lives of the people he games with. Lisette’s parents confiscate her computer when her school grades dip, and don’t believe her when she tells them she will be cut off from so many of her friends without it. Isolated and lonely, she falls into a severe depression. “I couldn’t think of reasons to get out of bed,” she says. Mats intervenes. He writes a heartfelt but measured letter to her parents, introducing himself as an online friend of their daughter’s, expressing his admiration for Lisette, explaining how important World of Warcraft is to her and urging them all to work together to find a solution that will allow her some access to her computer.
Lisette’s parents are taken aback. But they reassess and Rumour returns, and she and Ibelin are reunited in the game once more. He helps Lisette unpack and understand her troubles. “Ibelin was a really big support pillar. He was a friend I could be open with about all the things that were going on,” she says. “It’s one of the things that got me out of the depression I was in.”
She is not the only person he helps. A man named Kristian plays the game as a blue-haired gnome and is overcome with feelings of worthlessness. Over time he admits all this to Ibelin. “I told him everything,” Kristian says. “I told him how terrible I had felt. Perhaps it doesn’t seem like much, but it meant the world to me.”
Trude and Robert Steen and Mats’ sister, Mia
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Having spoken to dozens of the people he knew online, Ree says it’s clear that Mats was a very good listener. “Which might seem a strange thing to say when they didn’t actually talk, because everything was written down,” he says. “But he would remember everything that his friends told him. He would ask them questions about it months later. Even towards the end of his life, when he was as sick as it’s possible to get, you could see how he would prioritise his friends and find the energy to be there for them. It’s quite extraordinary.”
Perhaps most moving of all is when Mats learns that one of his Starlight friends is, in real life, mother to an autistic teenage son named Mikkel. He is unable to leave their apartment, she tells him. He is unable to show her any physical affection. She feels like a terrible mother. Mats listens and then suggests that she invite her son into the game itself. The son agrees to this and the three of them begin to spend time together within the game, with Mats gently encouraging Mikkel to take social risks, to introduce himself to other avatars or at least respond when spoken to. Under Mats’ guidance, Mikkel begins to find a measure of confidence. One day, Mikkel gives his mother’s character a virtual hug, a watershed moment for them both. “It was the first time in my life that I could feel love, and started to understand love,” Mikkel says in Ibelin. “The heavens opened up,” his mother says. “This was what I had been waiting for.” Today, Mikkel is able to hug his mother in real life. He is able to leave the house. “I went from the most negative person in the world to a person who could tolerate people,” he says, laughing.
The Remarkable Life of Ibelin is not a hagiography, however. In sifting through Mats’ life, Ree also uncovers conflict. If you’ve ever been part of an online community, you will know that rivalries and disagreements fester easily. Empathetic as he was, Mats could also be scathing, sarcastic and temperamental. He finds himself estranged from Lisette, who discovers that Ibelin has been romancing other women within the game. He falls out with the mother of Mikkel, who begins to suspect that he may be suffering from a chronic illness in real life. “We see that Mats gets in a lot of trouble because he keeps it a secret,” Ree says. “The inner demons build up and he gets into a lot of problems because he isn’t honest about his illness.” It is only towards the end of his life, when he finally opens up about his condition to everyone in World of Warcraft and starts writing his blog, that he is able to mend all his bridges.
But the fact that he broke them in the first place makes him all the more relatable, Ree says. “Who hasn’t made mistakes as a young guy? Pissed people off, been a prick, lost friends and then had to get them back again?” He grins. “There were a lot of similarities with me growing up, actually.”
Mats aged 17
COURTESY OF STEEN FAMILY/NETFLIX
In the days immediately following Mats’ death, Robert and Trude found the volume of information they received from strangers about their son both wondrous and surreal. They had simply not known. “I knew he was caring and kind,” Trude says. “But I never saw the extent to which he helped and supported so many people.”
Robert nods. “It’s when I realised that the emotions and relationships we create online can be stronger than we realise.”
A delegation from the Starlight guild attend his funeral, including Lisette. During the service, his coffin is draped with their banner, a silver star set against midnight blue. Robert delivers a eulogy for his son in which he speaks of the sorrow he and Trude had felt, believing that his short life had been one void of meaning, friendship, love and belonging. But, he continues, over the past few days they have come to understand that this was not the case, and that he had experienced all these things. “You proved us wrong. You proved us so wrong,” he says from the lectern, before explaining how they had come to learn of Ibelin’s exploits. “Mats was, at times, accused of being a womaniser,” he tells the funeral congregation, tight-throated and smiling. “And I must admit, being a father, I’m a bit proud of that.”
Ten years on, Robert and Trude are still discovering things about Mats. This, along with working on the documentary, has helped prevent him from fading in their hearts and minds. “We’ve still not got to the bottom of everything he did,” Robert says. “In a way, he still lives. He’s 35 and we’re still learning about his life. He’s very present. He’s very close to us.”
Trude and Robert Steen. “I knew he was kind,” says Trude. “But I never saw how much he helped people”
TIM JOBLING FOR THE TIMES MAGAZINE. STYLING: HANNAH SKELLEY. GROOMING: CAROL SULLIVAN AT ARLINGTON ARTISTS USING STILA. TRUDE WEARS DRESS, WHISTLES.COM. ROBERT WEARS T-SHIRT AND SUIT, MR P (MRPORTER.COM), TRAINERS, GRENSON.COM. OPENING IMAGE CHAIR, ANTHROPOLOGIE.COM
Every year, the members of the Starlight guild meet at a certain spot within World of Warcraft to commemorate Ibelin. They stand shoulder to shoulder, flawless elves, gallant knights and mighty sorcerers. But really they are just normal people with normal problems. Many of them had their lives improved, in some way or another, by a kind and funny Norwegian boy who died too soon but still left a mark on the world. His father draws a breath and smiles helplessly. “The tears that I have in my eyes now are not sad tears,” he says. “They are happy tears.”
The Remarkable Life of Ibelin is on Netflix from October 25
