He passed away at 25 – but Mats Steen lives on in World of Warcraft

When Mats Steen passed away, he was 25 years old. Peacefully, in his sleep. A small consolation. But not an insignificant one: Mats was afraid of death, as he wrote in his blog. What was it called again? Oh yeah, Musings of life.

Mats, from Norway, thought a lot about life. Especially in his final years. Mats suffered from Duchenne muscular dystrophy, a severe genetic muscle disease. Where other children played on a swing, he fell down. Where they ran, he stumbled. In the end, Mats barely had enough muscles left in his body to get out of bed. Or to speak, eat, drink.

Even breathe.

But in spite of it all, he rarely let that get him down. «I’ve been here for 24 years now,» he wrote in August 2013, «and I intend to stay for many years to come». Then, a few months later, in December, after he almost choked on his own phlegm, he wrote: «At one point I remember thinking “This is it, this is the end”.» Still, according to him, «death would have to wait.»

It waited another eleven months. Then Mats closed his eyes for the last time.

Mats Steen’s second life

In December 2014, Robert Steen gave the eulogy for his late son Mats in a chapel near Oslo. But his words didn’t only move relatives. Strangers were listening too. Well, strangers to the family. But to Mats, they were some of the most important people in his short life.

«Mats, I want to share something with you,» Robert said at the time. Not in Norwegian, but in English. This way, even the strangers could understand him. «Our deepest sorrow lay in the fact that you’d never know what it was like to love. That you’d never make friends. That you couldn’t experience relationships and shared activities with others. And that you’d never play a significant role in other people’s lives.»

But Mats proved them wrong, as his father discovered. Because Mats had a big imagination, and loved video games. Especially World of Warcraft, an online game where thousands of players can interact simultaneously in a virtual world.

The strangers in the room? The very players who, night after night, took the chains off his physical prison and let him experience the most incredible adventures in a fantastic world. For them, guests from all over the world, Mats wasn’t Mats. To them, he was Ibelin, a nobleman by birth, a private detective, bon vivant and explorer who made friends and enemies wherever he went.

And even fell in love.

A virtual kiss – and the birth of a real friendship

«It was a peaceful, warm evening in Azeroth, a few friends sitting around a campfire enjoying some drinks and good stories,» Mats wrote in a blog entry he titled Love. «A good thing about virtual beer is that you don’t get drunk, you just pretend you do. It must sound absurd, but a fun challenge for an actor or role-player.»

Suddenly, Mats continued to write, a dark-haired, mysterious beauty came out of the forest and joined Mats by the fire: Rumour. She began to tease Ibelin, to flirt with him. Mats liked that. «In real life I was 17 at the time, no idea how to even approach a girl,[…]» Rumour grabbed Ibelin’s hat and ran into the forest. Ibelin took up the chase, eventually catching up with her. They stood there, idly facing each other for a while with sheepish grins. And then, without warning, she gave Ibelin a kiss – on the cheek.

«It was just a virtual kiss, but boy I could almost feel it.»

It didn’t stop at flirting. Rumour and Ibelin fell in love, while Lisette – the Dutch gamer behind the character – and Mats developed a deep friendship. Lisette would recall years later in a BBC interview how Mats once wrote a touching letter to Lisette’s parents. They’d previously confiscated Lisette’s computer because she was spending too much time on World of Warcraft and her grades at school were suffering as a result. This in turn drove Lisette into depression.

Mats admitted in the letter that her parents’ concerns were justified. But on the other hand, radical measures would only lead to even more alienation between them and their daughter. There had to be another solution that’d work for both sides.

Lisette got her computer back. As a thank you, she drew a picture of Ibelin and Rumour in a loving embrace, which she sent to Norway for his birthday. Mats would later write that looking at the picture always brought a smile to his face when dark thoughts threatened to pull him down again.

The picture still hangs in Mats’ old room today.

Lisette didn’t know at the time that Mats suffered from Duchenne, was in a wheelchair and would soon only be able to move his fingers.

«In this other world a girl wouldn’t see a wheelchair or anything different,» Mats wrote in his blog. «They would get my soul, heart and mind, conveniently placed in a handsome, strong body,[…]».

As he put it: «[…] luckily pretty much every character in this virtual world look great. Many might find this silly, but at least looks don’t matter much any more, it’s all about personality.»

Breaking the chains: Mats’ search for normality

There was a reason why Mats never told his online friends about his illness: Mats didn’t want pity. No special treatment. He just wanted to be normal. He also mentioned this in his blog. «When I was young I was sent to summer camp with other handicapped kids. I of course hated the entire idea[…]». What he remembers most is a visit to an amusement park. Tusenfryd, outside Oslo.

A big, wheelchair-accessible bus picked up Mats and the other kids, driving them to the park. Mats was embarrassed to be paraded around like some kind of freak show and have people stare at him. Some even thought they were all mentally handicapped, even though only some kids were. «HELLO! DO YOU LIKE THE PARK?» they asked him in big, slow and easy words. «Yeah, I’m not deaf or mentally challenged,» Mats replied, «thank you very much.»

In the summer of 2013 – Mats was now 24 years old – the Steen family went on vacation to Mallorca while Mats, unable to travel, stayed at home with his assistant in his basement flat. He now had to be accompanied at all times. Wheelchairs and all that – they made everything incredibly complicated.

It was during this time that Mats started his «Musings of life» blog. In one of his first entries – My escape – he wrote about his life on Azeroth. «I boot up the computer, get into position and then I leave this world.» The screen was a gateway into Mats’ dreams, a refuge from his sometimes harsh reality. And the nice thing about dreams is that you can revisit them again and again.

«I spend most of my time in a little place called Azeroth, familiar name to some, I’m sure.» As Mats put it, «In there my handicap doesn’t matter, my chains are broken and I can be whoever I want to be.

In there I feel normal.»

More than just a game: Ibelin’s influence on the World of Warcraft community

Ibelin was more than his first successful role-playing character. Ibelin was an extension of Mats’ self. And no matter how hopeless his situation seemed, Ibelin always picked himself up again to carry on with a smile on his face. Just like Mats.

In fact, Ibelin even became a minor celebrity on his server, helping fellow gamers in need. He took care of them, solved problems, sometimes just listened. He also gave advice as wise and filled with confidence as could only be given by someone who’d suffered hell on earth and yet refused to give up.

Once, a few months before his death, Mats didn’t log into World of Warcraft for ten days. A long time by his standards, Mats was usually always online. His friends at Starlight, a role-playing guild, began to worry. Through Mats’ blog, they’d finally found out what was really going on with him. Then he returned – from hospital.

«Mats, you have to give someone the opportunity to get in touch with us if something should happen to you,» Anne, a guild friend, wrote to him. «We care about you.»

Mats didn’t want to hear it.

«You’re only saying that because you found out I’m in a wheelchair.»

Anne replied, insisting that wasn’t true. She began to list the names of people Mats – not Ibelin – had already helped. Really, truly helped, even outside the game.

«You’re important to the guild. To us. You’re a fantastic listener, and you’re one of the few people in Starlight who can build others up.»

It was probably the first time that Mats began to realise that his life wouldn’t pass by meaninglessly. That he hadn’t only played an important role in World of Warcraft the game, but also in other people’s lives – even though he’d never met them in person.

Mats was important.

The candles of Azeroth burn for Mats Steen

Mats passed away a few months after that conversation. When his dad Robert Steen gave a eulogy in front of family and friends in December 2014, he didn’t just talk about the worst pain and fears his mother and him suffered through. He also found rays of hope.

«Last week, I calculated that you spent between 15,000 and 20,000 hours in this digital community over the last ten years. You did everything we feared you’d never be able to do. You fell in love, you messed up. You were sometimes even accused of being a womaniser. And as a father, I have to admit that makes me a little proud.»

Then Robert Steen turned directly to Mats’ guild friends.

«Mats has been an important member of a fantastic community in the world of role-playing for eight years. There, he was able to experience love, friendship and the feeling of having made a difference in other people’s lives. I thank you for that.»

When Mats’ guildmaster Kai Simon – or Nomine, as he’s called in-game – took the floor, he spoke not only to Mats’ parents, but to the whole world: «Know that right now, all over Europe, people are lighting candles for Mats.»

Anyone wishing to light a candle in Mats’ honour can do so at his grave in World of Warcraft, modelled on his real grave in Oslo. It’s located exactly where Ibelin and Rumour met for the first time – by the lake directly behind Goldshire in Elwynn Forest.

His chains are now broken – forever.

Inspired by Mats Steen’s story, World of Warcraft now offers the “Reven” bundle. All proceeds from the sale of the bundle, which includes a fox companion and a matching back transmog, will go to the organization CureDuchenne, dedicated to researching and treating Duchenne muscular dystrophy. This continues Mats’ legacy while supporting the fight against the disease.

By the way, Starlight was founded in 2006. The guild still exists today. And if you check the official guild registry, you can still find him listed as an official member – Ibelin.