The poignant diary of a man who suffered from a debilitating muscular disease has revealed how he escaped his life in a wheelchair and became ‘whoever he wanted to be’ in the fictional World of Warcraft universe.
Mats Steen barely left his home in the final years of his life as he battled Duchenne muscular dystrophy (DMD), a rare condition that causes muscle degeneration – and until his death at age 25, his parents believed his life had been lonely.
But soon after his passing, Trude and Robert Steen began to receive hundreds of emails from strangers who seemed to know him extremely well. They learned their son had a popular and fulfilling social life through his personal blog and online roleplaying in the video game.
Mats, who revealed on his incredibly intimate blog that he ‘wasn’t used to being flirted with’, shared romances with fellow gamers and even experienced a ‘virtual kiss’ that was so intense ‘I could almost feel it’.
He built a community where ‘my handicap doesn’t matter’ and could ‘escape’ to a world that he described as the ‘gateway to wherever your heart desires’.
Like many parents, Robert and Trude had actually discouraged Mats from spending too much time online and suggested he try to foster connections in the real world.
Mats Steen (pictured) barely left his home in the final years of his life as he battled Duchenne muscular dystrophy (DMD), a rare condition that causes muscle degeneration
Mats, as his World of Warcraft character Ibelin Redmoore, went on dates with other members of the gaming community and, according to an emotional blog post, even experienced a ‘virtual kiss’ that was so intense ‘I could almost feel it’
Mats, of Olso, Norway, started his blog Musings of life in July 2013 while his family was on holiday in Spain.
Unable to travel due to his condition, Mats penned his first post titled My Escape in which first described the joy he had in Azeroth, the name of the world in which the majority of the Warcraft series is set.
‘There my handicap doesn’t matter, my chains are broken and I can be whoever I want to be. In there I feel normal,’ the then-24-year-old wrote.
He shared how he was ‘trapped in a shell that can’t sustain me very well’ and that ‘there are times I just want to break down and cry, sometimes I crumble’. But added that ‘my great escape is gaming’.
‘To clarify: there are so many things I want to do, but my chains always pull me back. Luckily, I have found my escape, and it’s not too uncommon today,’ he wrote.
‘I boot up the computer, get into position and then I leave this world. It’s not a screen, it’s a gateway to wherever your heart desires. I spend most of my time in a little place called Azeroth, familiar name to some, I’m sure.’
He shared how in the game he could ‘take on different forms’, explaining that he fought evil forces, flirted with women and made both friends and enemies.
Mats’ short-lived blog saw him explore several aspects of his life over nine posts, including his Norwegian home, romantic relationships, family gatherings, his childhood and some of his health battles.
In one post on his blog Musings of life, Mats revealed how he experienced his first kiss in the World of Warcraft universe, noting how girls in the game wouldn’t judge him for being in a wheelchair
In one post, the popular gamer revealed how he experienced his first kiss in the World of Warcraft universe, noting how girls in the game wouldn’t judge him for being in a wheelchair.
‘In real life I was 17 at the time, no idea how to even approach a girl, being handicapped does things to your confidence,’ he wrote. ‘In this other world a girl wouldn’t see a wheelchair or anything different.’
Mats recalled how his virtual romantic partners ‘would get my soul, heart and mind, conveniently placed in a handsome, strong body’.
‘Many might find this silly, but at least looks don’t matter much anymore, it’s all about personality,’ he said, before sharing how he found it ‘confusing’ when an ‘attractive girl’ kept flirting with him.
‘I wasn’t used to being flirted with like that. There was something very exciting about her, her humor, the way she acted, how she would express herself. I was sold. Suddenly she kissed my cheek and vanished into the woods. It was just a virtual kiss, but boy I could almost feel it.’
He added: ‘My character just sat there, clueless of what to do next.’
Mats Steen from Norway died from a degenerative muscular 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 game phenomenon going under the name Ibelin Redmoore, seen above
Mats, pictured as a young boy, spent hours of his life online playing World of Warcraft
It was only after his death that his parents, Trude and Robert Steen (pictured together with his sister Mia) discovered just how widely known and celebrated Mats was online for his personal blog and the video game World of Warcraft
In another post, Mats shared how using a mouse and keyboard had become ‘challenge for me’ and that he had to liaise with ‘two creative guys’ from a company that specialized in adaptive technology to devise a solution that would allow him to continue gaming.
He claims the pair came up with a ‘genius plan’ that saw them attach a series of buttons to a table that could be programmed to serve any purpose Mats wanted.
‘It changed my computer use forever,’ he wrote, adding that he could ‘finally play games I could only dream of before’ and ‘owed the two guys a lot’.
‘There are as you understand many obstacles in my way, but there are solutions to most things if you just keep your mind open to it,’ he told his readers.
‘Be creative! I know, many times I just wanted to give up, nothing ever works, right? Wrong. I’ve met far too many doctors and ergonomists who fail to think creative. They just see one solution and they stick to that. Now, I’m sure that solution works for some, but we are all different. My needs are different from yours.’
He admitted that he has ‘always loved creative people’ and is ‘amazed by the beauty humans are able to create around them’.
The gamer added: ‘Some artists are afraid to show off their work, thinking they’re not good enough. To them I want to say, stop doubting yourself. Sometimes you have to jump in, no matter how scary it might seem. You might be pleasantly surprise.’
Mats started his blog in July 2013 while his family was on holiday in Spain. Unable to travel due to his condition, Mats penned his first post titled My Escape in which first described the joy he had in Azeroth, the name of the world in which the majority of the Warcraft series is set
Mats died in the hospital on November 18, 2014 after being critically ill.
Trude and Robert had believed their son had led a somewhat isolated life, with him relying on a wheelchair to get about after being diagnosed with Duchenne muscular dystrophy as a child.
But their minds were about to be blown as hundreds of people got in touch with the Oslo-based family to express their condolences following their son’s death.
The first they knew of their son’s secret life came after they announced his death on his online blog, on which there was an email address for users to contact the family.
Mats’ parents and sister Mia had been expecting a few replies but were not prepared for the reality as they were inundated by hundreds of strangers writing to them – also, Mats was known by a completely different name: Ibelin Redmoore.
The family knew the 25-year-old would spend hours online using special equipment to accommodate his disability, but had no idea he had found friendships and even romance among the gaming community.
Trude and Robert Steen had believed their son had led a somewhat isolated life with him relying on a wheelchair to get about, but he had a vast network of friends
Mats had Duchenne muscular dystrophy, a genetic condition that eroded his ability to move and breathe and which would eventually kill him at the age of 25
Mats was born in 1989 and was a happy child – energetic and sweet-natured
As Redmoore, Mats had been an avid player of World of Warcraft, an online game phenomenon.
Redmoore was heroic nobleman and monster slayer 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 he had managed to form meaningful friendships and even romantic relationships.
Redmoore had built up an extensive network of friends over the years and had become known for his kindness and empathy.
Like many parents, Robert and Trude had actually discouraged Mats from spending too much time online and suggested he try to foster connections in the real world.
‘We thought he lived, for many reasons, a wasted life. And then we get these stories sharing just the opposite,’ Robert began.
‘The sad thing is that we were very strong on condemning the time they were spending in that world, and that condemnation was based on a five-minute analysis,’ Robert said to The Independent.
In another blog post, Mats shared how using a mouse and keyboard had become ‘challenge for me’ and that he had to liaise with ‘two creative guys’ from a company that specialized in adaptive technology to devise a solution that would allow him to continue gaming
‘We did all the right things, and we were so present in our children’s lives. With one exception – and that is the digital part of their lives.’
The incredible double life led by Mats has been explored in a new Netflix documentary, The Remarkable Life of Ibelin, due out on Friday.
The film depicts how online gaming can be a portal to another world; one of friendship and romance and providing something of an escape to those who are severely disabled.
‘In Scandinavia, at least, we feel that we are becoming more and more fragmented. Everybody’s looking after themselves and their own causes; we have become extremely individualistic, centered on our own things,’ Robert said.
‘These collective solutions that we had some generations ago are gone, in a way. So if this could be one of the messages from this story – the kindness we can bring to a community, to the world – that would be great
‘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.
Mats played World of Warcraft using special equipment to accommodate his disability
One of his dates appears in the new Netflix documentary about his life
Robert, Trude and Mia Steen are seen at the Sundance Film Festival in January where the film was first screened in public
The documentary sees a world where online gaming can be a place of opportunity for disabled players.
Using the World of Warcraft archive within which thousands of words of interactions between Mats and his friends were recorded, the film recreates his digital life, using animation in the style of the game and voice actors speaking his words out loud.
Of course, it also leads to a raft of fantasy-character in various shapes and sizes – but this was the world Ibelin was finding – a whole new world in which anything was possible, free from the restrictions his disability imposed.
‘It creates environments where physical barriers don’t exist, allowing players to interact with each other on an equal footing,’ says author Marijam Did who has written about about the impact of video games.
‘Entire communities and livelihoods are crafted within this digital realm. I would always encourage pairing it with physical interaction, of course – too much of anything is not great – but we must de-aestheticise what interaction is.’
