Mats Steen suffered from a debilitating muscle disease that kept him confined to his apartment, but after his death aged 25 his parents discovered his secret life online which filled him with joy.
Trude and Robert Steen discovered that the Norwegian had a popular and satisfying social life through his personal blog and his online role-playing games in the World of Warcraft video game.
Parents and his sister Mia knew that Mats would spend hours online using special equipment to accommodate his disability.
But until his death, his mother and father believed that, unfortunately, his life had been lonely. Shortly after his death they began receiving hundreds of emails from strangers who seem to know him very well.
Norway’s Mats Steen died of a degenerative muscle disease at the age of 25, but he had a secret life online
Mats had been an avid player of World of Warcraft, an online gaming phenomenon that goes by the name Ibelin Redmoore, as seen above.
Only after his death did his parents, Trude and Robert Steen, along with his sister Mia, discover how well known and celebrated Mats was online for his personal blog and the World of Warcraft video game.
The family learned how their son had found friendships and even romance among the gaming community.
Trude and Robert believed their son had led a somewhat isolated life and relied on a wheelchair to get around after he was diagnosed with Duchenne muscular dystrophy, a genetic disease that eroded his ability to move and breathe.
But their minds were about to be blown when hundreds of people contacted the Oslo-based family to express their condolences.
The first time they learned of their son’s secret life came after his death was announced in their online blog in which there was an email address for users to contact the family.
The family expected some answers, but they were not prepared for the reality, as they were inundated with strangers; Furthermore, Mats was known by a completely different name: Ibelin Redmoore.
Trude and Robert Steen believed their son had led a somewhat isolated life and depended on a wheelchair to get around, but he had a wide network of friends.
Mats was born in 1989 and was a happy, energetic and sweet-natured boy.
Mats spent hours of his life online playing World of Warcraft
Mats suffered from Duchenne muscular dystrophy, a genetic disease that eroded his ability to move and breathe and would end his life at age 25.
Mats played World of Warcraft using special equipment to accommodate his disability
Like Redmoore, Mats had been an avid player of World of Warcraft, an online gaming phenomenon.
Redmoore was a heroic nobleman and a monster hunter with Mats controlling his every move, all while sitting alone in an apartment upstairs from his parents in Oslo.
It was through the gaming platform that he formed friendships and romantic relationships.
Redmoore had built an extensive network of friends over the years and had become known for his kindness and empathy.
Like many parents, Robert and Trude even discouraged Mats from spending too much time online and suggested he try to foster real-world connections.
‘We think he lived, for many reasons, a wasted life. And then we have these stories that share the complete opposite,” Robert began.
“The sad thing is that we were very firm in condemning the time they spent in that world, and that condemnation was based on a five-minute analysis,” Robert told The Independent.
Mats, like Ibelin Redmoore, dated other members of the gaming community.
One of his quotes appears in the new Netflix documentary about his life
‘We did all the right things and were very present in our children’s lives. With one exception: the digital part of their lives.’
The incredible double life Mats leads has been explored in a new Netflix documentary. The remarkable life of Ibelín, It will be out on Friday.
The film describes how online games can be a portal to another world; one of friendship and romance and providing a kind of escape for those with severe disabilities.
«At least in Scandinavia we feel that we are increasingly fragmented. Each one worries about himself and his own causes; “We have become extremely individualistic, focused on our own things,” Robert said.
‘These collective solutions that we had a few generations ago have disappeared, in a way. So if this could be one of the messages of this story – the goodness we can bring to a community, to the world – that would be fantastic.
‘Mats, in his condition, could help so many people without being able to move more than just his fingers. “Imagine what the rest of us could do if we put our minds to it,” he added.
Robert, Trude and Mia Steen are seen at the Sundance Film Festival in January, where the film was screened in public for the first time.
The documentary sees a world where online gaming can be a place of opportunity for disabled gamers.
Using the World of Warcraft archive that recorded thousands of words of interactions between Mats and his friends, the film recreates his digital life, using game-style animation and voice actors speaking his words aloud.
Of course, it also leads to a host of fantasy characters in various shapes and sizes, but this was the world Ibelin was encountering: a whole new world where anything was possible.
“Create environments where there are no physical barriers, allowing players to interact with each other on equal terms,” says author Marijam Did, who has written about about the impact of video games.
‘Entire communities and livelihoods are created within this digital realm. I would always recommend combining it with physical interaction, of course (too much of anything is not good), but we need to de-aestheticize what interaction is.’
