Their son died at 25. Then they discovered his extraordinary secret life online

Robert and Trude Steen thought their son Mats’s entire world was confined to his wheelchair. As a child, Mats had been diagnosed with Duchenne muscular dystrophy, a genetic disorder that sparks early onset muscle weakness – by the time of his death at the age of 25, Mats’s mobility had diminished to only the use of his fingers. “We strongly believed that he was lonely, that he had no meaning for other people,” Robert tells me, over Zoom from the Steen family home in Ostensjo, Oslo.

But after the Steens announced Mats’s death in a final post on their son’s blog, something extraordinary happened. One after another, emails began arriving from people who knew Mats from World of Warcraft, an online role-playing game. There, Mats was known as Ibelin Redmoore, a muscular nobleman and monster slayer renowned as much for his in-game detective work as his popularity with women. Mats, as Ibelin, had formed deep, meaningful friendships with other players – and even romantic connections. “We thought he lived, for many reasons, a wasted life,” Robert continues. “And then we get these stories sharing just the opposite.”

A Netflix documentary released this week, The Remarkable Life of Ibelin, explores Mats’s on and offline worlds, his story told in part by his parents, his internet community, and partly by Mats himself – voice-acted lines of his conversations from the game are brought to life through animation. The film is incredibly moving as a story of one man, but it also speaks to something bigger about how we exist in the modern era, and how often we underestimate the rich, complex inner lives engendered by an online self.

Before Mats’s death, the Steens would attempt to steer him – and his sister Mia – off the internet, assuming that they were spending far too much time online and seemingly alone. “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 says. “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.”

Cynicism has long been the most common response to the idea of a digital life, something that can arguably be traced back to the moral panic around video games in the Eighties and Nineties. At that time, there were essentially two perceived threats: violent or otherwise unwholesome media polluting young minds – arguably peaking around 1992 with the release of Mortal Kombat and George HW Bush’s decree that Americans should be “more like the Waltons and less like the Simpsons” – and the dangers of social isolation.

Of the two, it’s primarily that image of loneliness that still draws concern today. The stereotype, in many ways, hasn’t changed. Think of a digital life and chances are you’ll connect it to a young person – usually male and struggling with depression or anxiety – who’s withdrawn from the outside world, preferring the pale glow of the screen in his bedroom. The person in question hasn’t stepped into another world, or some digital elsewhere, but fled. But this doesn’t feel quite right.

A huge appeal of an online world is the escapism it promises. For Mats, it served as a reprieve from terminal illness. For fellow World of Warcraft fan Pete Etchells, a professor of psychology and science communication at Bath Spa University and author of the book Lost in a Good Game: Why We Play Video Games and What They Can Do for Us, it meant a distraction from the impact and memory of his father’s death. But he’s quick to tell me that the idea of escapism is a double-edged sword.

“It gives you a break, it gives you release, particularly if you have stress in your life, but it can become maladaptive,” he says – a way of ignoring your problems instead of facing them. “I think all too often, though, these conversations end up being focused solely on the negative aspects of games, when there’s such a rich and such a huge positive benefit to them.”

The idea of disappearing into a video game also presupposes that the game itself represents a world wholly divorced from ours. But as in any media or art form, the greatest stories tend to be ones that reflect our lives back at us. Etchells mentions That Dragon, Cancer, a game created by two parents whose son received a terminal cancer diagnosis at just 12 months old. Etchells also talks about Hellblade, which so accurately depicts the experience of living with psychosis that players with the condition have shared the game with friends and family to help them understand it better. These are games deeply rooted in “IRL” struggles – not detours away from them.

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The Remarkable Life of Ibelin also explores how online gaming can open up opportunities for those with disabilities, for whom some IRL activities are inaccessible. “It creates environments where physical barriers don’t exist, allowing players to interact with each other on an equal footing,” says Marijam Did, author of the new bookEverything to Play for: How Video Games Are Changing the World.

Building networks of friends who share a common goal can also be hugely rewarding. “Entire communities and livelihoods are crafted within this digital realm,” she adds. “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.” In other words, our limited idea of what community or friendship look like may need re-evaluating.

Did believes it’s time we stopped seeing online identities as “less real” than offline ones, noting that there’s “still a dismissive attitude in mainstream culture that what happens in a game or on a forum isn’t serious”. While she remains concerned about video games as pure distraction, she recognises and celebrates the exciting possibilities that exist too.

Ironically, as our fears about an increasingly isolated and individualised society grow stronger, online spaces may be establishing themselves as a new vanguard of community. And it’s been like this for a while. As a teenager at the turn of the millennium, I spent most of my evenings posting in online forums for bands such as Manic Street Preachers and Radiohead. I remember having to convince my parents that this was a real community, and more meaningful to me than any I had at school. Slowly I won the battle to start attending face-to-face meet-ups with forum friends. Like Robert and Trude Steen – who admit that their understanding has had a “180-degree turnaround” throughout their journey with Mats – it has taken time for older generations to acknowledge the value of the spaces.

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Robert is certainly honest about the lessons he’s learned, and what he wants people to take away from the film. “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, centred on our own things. These collective solutions that we had some generations ago are gone, in a way,” he explains. “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.”

It’s also a story about hope and opportunities, he says, at a time when we perhaps need both of those things more than ever. “Mats, in his condition, could help so many people without being able to move more than just his fingers,” Robert says. “Imagine what the rest of us could do if we put our minds to it.”

‘The Remarkable Life of Ibelin’ streams on Netflix from 25 October