Only after Mats was dead did the parents understand the value of his gaming

Robert and Trude mourned their son’s lonely life in his wheelchair. But when Mats died, friends all over Europe lit candles for him. LONG READ.

Graphic illustration Lene Sæter / Andre Håker – Photo: Patrick da Silva Sæther
Vicky Schaubert Journalist

Only after Mats was dead did the parents understand the value of his gaming

– We were very traditional. Didn’t want him to stay up late at night and such, says Robert Steen (56).

It is August 23, 2018. Robert sits at a coffee shop a stone’s throw from his office in Oslo City Hall and tells about his son. He says it hurts, but also feels good to tell.

– In retrospect, I think we should have been more interested in the game world he spent so much time in. That we did not robbed us of an opportunity we did not understand we had, says Robert.

Dad Robert and the unknown friends

Hardly four years earlier, Robert was standing by his son’s stretcher in Vestre Cemetery New Chapel and held his memorial speech for Mats.

Among those sitting on the chapel’s blue chairs and listening to Robert’s words – between family members and a few people from the health service, who knew Mats well – there were seated people the family didn’t know. Only Mats dad Robert had met them. Once, the night before.

Considering that Mats barely left his apartment in the family’s house in recent years, it was a little strange that unknown people were present in his funeral. It was even more strange that Mats himself, who was lying in the white coffin, had not met these people either.

In fact, these mourners would actually not relate to Mats, like Mats. They would think of him as Ibelin; a nobleman of burden, woman seducer, and detective. They had come from afar, some from near, and they were crying for their good friend whom they had lost.

Later at the funeral service, one of them would speak and tell that now, at this very moment, people throughout Europe lit candles for Mats and commemorate him in grief and love.

Mats’ measured time

It was written in the stars, it was coded in his DNA: The Mats who, in July 1993, strolled around with a crown on his head in his own four-year birthday, should within four years sink into the hated wheelchair and since then never rise again.

Photo: private
Robert and Trude had received the message already in May, two months before Mats turned four. At a small office in Ullevål Hospital’s large brick building, they had been told why their boy constantly fell and hit himself. Dropped off the swing. Why he did not climb the ladder on the slide in the kindergarten, even though he loved to slide down. Used his knees for support as an old man as he rose from sitting. Didn’t race the other kids.
The doctors told Robert and Trude that Mats had Duchennes muscular dystrophy (DMD); a rare disease that causes muscle loss in boys. In the genes of Mats there was an error code that would prevent his muscles from developing normally. That would eventually destroy them.

– After Mats was put to bed that night, we called the doctor, says Robert.– We were allowed to do so. Call anytime – if we needed more information.

Trude sat next to him on the couch. Half an hour into the phone call, Robert says he managed to find a small bright spot:

– I said, “But at least he doesn’t die from this!” The doctor at the other end of the line silenced for a moment. Then I heard him say, “No, but the experience is that these patients rarely get older than twenty years”.

Robert pauses. Then says:

– Now he became twenty-five, then.

That evening in May in 1993, in their rowhouse in the district of Østensjø, southeast of Oslo – when the future went from vague promises of something good to becoming a threat – Robert and Trude tried to understand what the doctor’s words meant.

Mats would not live a normal life. Not participate in sports. Not go out and meet girls. Not experience the world or contribute to society.

He would die young, without having lived a full life.

It was what Robert and Trude believed, as long as Mats lived, that he should be taken from them, without having put his imprint on the world.

They were so wrong.

About creating oneself in zeros and ones

If the DNA in us draws up the map for who we are, even before we are born, what opportunity do we have to choose who we want to be?

Mats found a way and created himself again.

Around the turn of the millennium, the Steen family had moved from the rowhouse on Østensjø to a wheelchair-adapted home at Langhus in Akershus. Although the school allowed eleven-year-old Mats to play Gameboy during breaks, even Super Mario couldn’t chase away the feeling of being an outsider, being different. Mats sat in a wheelchair, had an assistant with him everywhere.

The parents pondered what he could do in his spare time when the classmates played football and ravaged.

PC games might be something for Mats? Father Robert gave him the password for the family PC, and a new world opened for the eleven-year-old.

– During the last ten years of his life, Mats played between 15 and 20,000 hours, Robert said in his speech. It is more than a full-time job for over a decade.

But it was not completely friction-free. Robert tells:

– When the night watchman arrived at 22:00 in the evening, Mats had to be in bed. The night watchman’s job description was to watch over Mats, not put him to bed. Mats protested, of course, but reluctantly went to bed early.

Mats had become a gamer, and gamers do not settle at ten.

So who was Mats in all the hours he played?

Photo: Screenshot ∕ Blizzard Entertainment

Lord Ibelin Redmoore became Mats’ main character in the computer game world.

About Lord Ibelin Redmoore and Jerome Walker, his second character Mats wrote:

” Jerome and Ibelin are extensions of my self, they represent different sides of me “.

Through Ibelin and Jerome, Mats would play an important role also in other people’s lives.

Mats played many types of PC games, but eventually, he went to Azeroth – a planet in the game World of Warcraft. It is a mythical fantasy world with continents and nations, sea and forests. There are mountain plateaus, lakes, and ponds. Cliffs, plains, villages, and towns. Mats was mostly in the section called Eastern Kingdoms.
Photo: Screenshot ∕ Blizzard Entertainment

As an online player, you learn bit by bit to know this world as you know your physical world. There will be places you plan to go to, landscapes and cities you master – some better than others – areas you watch out for, neighborhoods where you hang out. Your local pub where you meet friends.

Such is the world. Such is Azeroth.

There, Mats found his herd. A wide circle of good friends.

But anyone who does not enter Azeroth does not see how good it is.

What you see and what you think you see

Next time Robert Steen, the financial officer of Oslo, tells about his son, it has become November and a Friday afternoon. At his office in Oslo City Hall, Robert tells what he saw:

– When I walked past Mats apartment during the day and the curtains were down … That grief I remember well. “Uff,” I thought. “He hasn’t started his day yet”.

“I was sad because the world he was moving in was so limited,” says Robert.

But the one who does not play games himself does not see everything.

– We thought everything was just about the game in the game world. And that’s it. We thought it was a competition to win, says Robert.

And then it was with the circadian rhythm:

– We didn’t understand how important it was for him to be online late in the evening and at night. But of course, it is not in the morning or in the middle of the day people play games. Then most people are at school or work, says Robert.

– We didn’t understand it until he had left. To the very last moment, we wanted him to sleep at 23:00, like other “normal” people.

A theft in Goldshire

Lisette Roovers (28), from the city of Breda south in the Netherlands, was one of Mats’ close game friends. She was also one of those who participated at the funeral service. Now she is in Norway and visits Kai Simon Fredriksen (40), who also played with Mats.

In Kai Simon’s sofa at Høybråten, northeast of Oslo, Lisette says:

– I knew Mats for many years. It was a shock when he died and it has shaped me.

Lisette was only fifteen years old when she met one year older Mats. Or, to be precise: Lisette’s game character Rumour met Mats’ game character Ibelin.

Photo: Patrick Da Silva Sæther / NRK

Lisette tells:

– We met in Goldshire. Now Goldshire is not a good place, but at that time Goldshire was a nice village where you could encounter new, interesting characters. I was looking for someone to play with and by a bonfire, some of them were sitting, including him, I would later learn to know as Ibelin. I – or Rumour, then – acted a little on impulse; jumped out of the bushes and snatched the hat off Ibelin. Stay still for a moment, we looked at each other. Then I ran away with his hat, without any thought for where I ran, says Lisette and smiles.

This first meeting also Mats wrote of in a blog post he called Love.

” In this other world, this girl does not see a wheelchair or anything else. What she sees is my soul, my heart, my personality, conveniently placed in a handsome, strong body. Fortunately, in the virtual world, every single character looks good.

– Mats was a good friend – sometimes very close, says Lisette.

– We wrote about everything, but he didn’t share with me that he was sick. I thought his life looked like mine. For example, we both agreed that we hated school.

But something Mats and Lisette did not agree on:

– He wrote that he hated snow. I wrote that I loved snow. I didn’t understand then that he hated snow because he was in a wheelchair. I didn’t know about the wheelchair.

Out on the town – or into the Elwynn Forest

Lisette liked being in the game world and she describes a typical evening:

– My sister went out with friends, I stayed home and gamed.

But Lisette’s game made her parents uneasy.

– The game took over. It was at the expense of school work and friends, they said.

– They were worried.

Gaming became a source of conflict, and the parents’ solution was to limit Lisette’s ability to play.

– To not get to play and not be in contact with my gamer friends was hard for me, says Lisette.

But Mats did not fail their friendship, even though he did not find her in the game. He kept in touch with Lisette through emails and messages, showed her she was not alone and that she was being missed.

– He even wrote a serious letter to my parents, trying to make them understand how important it was for me to play, Lisette says.

– He wrote that he was worried about me.

– I have saved that letter, she adds.

Real friends – and those who are not

Dad Robert tells that they knew Mats wrote with someone named Lisette:

– Mats talked a lot about these game characters – these avatars – but we didn’t put much into it. He talked a lot about this Rumour, says Robert.

– She, or Lisette, then, also sent packages to him, including for his birthday. We thought it was touching, and we teased him a little. Then he blushed, for real, Robert says.

– So, Lisette, we thought of as a friend, because of those packages. They were tangible proof of true friendship, one could say.

He adds:

– The others he had contact with, we didn’t call friends. We called them avatars.

Robert stops. Says:

– Our view of friendship was very traditional. Those who were just there digitally, we didn’t think of as friends.

Finding their herd

In World of Warcraft, you can either play alone or you can team up with other players and form a herd. Mats was part of such a herd: Starlight.

This herd, or guild, counts around 30 members.

– Nobody happens to be a member of Starlight, says dad Robert.

– To become a member you must be recommended by one who is already inside. Then you have to test for one to two months.

Starlight has been around for more than twelve years and is still an active guild. Twelve years is a long time for such a group. About half the life of Mats.

Robert has understood that Starlight stands out in the gaming world:

– The guild is special because it has been around for so long. That is probably one of the reasons why the friendships in Starlight are so deep.
Photo: Patrick Da Silva Sæther / NRK

Kai Simon Fredriksen (40), or Nomine, as he is called in the game, leads Starlight.

Around the day of Mats death, Starlight always arranges a memorial for Ibelin, where the members of the guild remember their mate. They did this on the first Sunday after Mats died in 2014, and they have done so every year since.

Before last year’s memorial, Kai Simon described the scheme as follows:

” We will remember Lord Ibelin Redmoore together and our focus will be running and swimming .”

– Ibelin was a runner, Kai Simon explains.

– That is one that ran, literally. It was important for him to run, and it was important for him to be able to share the experience of running with others.

Does Kai Simon talk about Mats now, or about the game character of Mats? Maybe it’s not important. Maybe that’s how it was: That man and character merged.

With the wheelchair into Azeroth

In the summer of 2013, Mats was 24 years old. He had already lived four years longer than the doctors had indicated.

The Steen family was on a summer holiday in Mallorca, Mats was grounded in the apartment at Langhus.

This summer Mats started his blog: Musings of life – thoughts about life. In a blog post he called My escape, Mats writes about life in Azeroth:

” In there, my handicap doesn’t matter. My links are broken and I can choose who I want to be. Inside there, I feel normal.

Mats shared his blog with the members of the guild – one by one – and so they got to know how the situation was for the player.

Lisette tells about when she read the blog:

– I was beaten to the ground. And I was guilty of occasionally teasing him in the game and not always being so caring.

– Then I thought, Do I have to start behaving differently to him from now on? But I decided to treat him as before. He also wrote in his blog that this was what he wanted, says Lisette.

– And he was the same.

A free territory

In Starlight she is Chit, a rough and down-to-earth character. Otherwise, in her life, she is Anne Hamill (65) from Salisbury, England, a retired psychologist, and an enthusiastic gamer.
Photo: Patrick Da Silva Sæther / NRK

Anne thinks it’s fascinating how the Starlight community works for those who often fall outside the “real world”.

– In the role play, we meet each other without prejudice. Therefore, Starlight is perceived as safe, also for those who experience themselves as “different”.

– Online games are a fantastic arena for meeting people and building friendships, says Anne.

– It gives you the opportunity to discover the other’s qualities, without the stereotypes of the physical world standing in the way.

– Only when we have become well-known, we share such things as age, gender, any handicap, and life situation – if it feels right, Anne says.

And adds:

– I think Mats was lucky that he belonged to our time, technologically. Had he been born 15 years earlier, he would not have found such a society as Starlight.

A dark  presentiment

About half a year before he died, Mats was away from World of Warcraft for ten days. The fellow players wondered where he was.

– Ten days was a very long period of being logged off. Mats was always there when you wanted to play or needed someone to chat with, says Anne.

When he was back in the game, they were told that he had been hospitalized. Anne says she finally decided to say what she was thinking about:

– I wrote to him: “Dear Mats. You have to give someone an opportunity to get in touch with us if something happens to you. So we’ll know, even if you can’t let us know, ”says Anne.

What she asked him was, in effect, that he should give his password to someone, or at least lay a plan for how Starlight would be notified if something serious happened to him.

She wrote:

” You’re important to us .”

Mats wrote back:

” You’re just saying that you’ve been told I’m in a wheelchair .”

 I replied, “No, Mats. You are important to the herd. You are a wonderful listener. You are one who lifts us and Starlight.

Mats waited a bit to answer.

“But I realized at that time that he considered what I said,” says Anne.

Then there was only half a year left of his life.

November 18, 2014, Mats dies abruptly.

He had been hospitalized and the family had feared the worst. But the doctors thought they had averted their father and had said he could soon go home.

– We were rushed to Ahus hospital. He lay on the fourth floor, at the far end of a long corridor. The seconds were so precious. The corridor was so long.

They didn’t reach it. Robert says they were late. The high nitrogen concentration in the blood became fatal.

The picture Robert took from his son on the deathbed shows a pale young man, with dark, wavy hair. He has nicely drawn eyes, a noble nose and a mouth marked by the breathing mask he had been wearing for a long time. He looks like he’s sleeping.

Some years ago, Lisette drew this drawing:
Photo: private

Ibelin holds around Rumour, a scarf hides his nose and mouth.

– It came in the mail, says Robert.

– Now it is on the wall at home.

A sudden liberating thought

The day after Mats was dead, Robert sat in the house at Langhus, in the middle of what he calls a mini-chaos.

– It was like it’s in a home where someone recently passed away: It rings on the door, flowers come, neighbors come. We cried.

In all, Robert also thought of who had to be told what had happened. He thought of them Mats had played with, and how in the world he could reach them.

– Before Mats died, I never thought I would need his password.

But now he needed it.

– That was when I came to think about the blog, says Robert.

Mats had given his dad Robert the password for his blog, so Robert could check the statistics continuously and keep track of how many had visited and read the blog.

Anne Hamill, also known as Chit, has a piece of clear advice to all parents:

– You don’t know who plays a role in your children’s lives unless you know their digital friends. Be sure to make an appointment with your kids about how to reach their friends online, in case something happens. Otherwise, there may be many who walk in uncertainty, if something happens and their friend just stays logged off.

At the end of the journey

It’s been Friday night in Oslo City Hall. The politicians and the others have said good evening, have a good weekend and gone home, the city’s lights shining like stars on a night-black sky outside the office windows of the finance officer Robert Steen.
Photo: Patrick Da Silva Sæther / NRK

The blog post about Mats death, Robert wrote on the sofa at home, the day after Mats passed away.

This post, the latest on the blog of Mats, is titled ” The journey has come to an end “. The text tells of the life of Mats, and Robert finished it like this: The family can be contacted at this email address: […]

– I sat there on the couch and wrote and cried. So I pressed the send. I didn’t know if there would be any answers.

Robert breathes, before he continues:

– Then a couple of hours went by, and then the first mail comes – a heartfelt condolence from one of the players in Starlight. I read the mail loud. It made such an impression.

From the condolence emails:

«It is with a heavy heart I write this post for a man I never met, but knew so well».

Robert continues:

– That we had found a channel up to the friends of Mats, and that they responded that way. It was …

“He transcended his physical boundaries and enriched the lives of people all over the world.”

Robert elaborates:

– I wanted to say first of all that Mats had passed away. And then these stories began to come.

“Mats’ passing has hit me very hard. I can’t believe how much I’ll miss him.”

The voice of Robert has thickened.

– It began to form a whole society, a small community of people, which was of a dimension we had not had any idea of. There were more and more emails, during the day and the days after, which testified about the importance Mats had in other peoples lives.

“I don’t believe that one single person is the heart of Starlight. But if one was, it would have been him.”

Robert says that a new physical reality enters the digital.
Photo: Patrick Da Silva Sæther / NRK

How do you measure friendship?

When Mats guild, Starlight, learned that he was dead, the members of the group left money in a common pot, so that those who could not afford, nevertheless had the opportunity to travel to Oslo, Norway, and participate in his funeral service.

Robert says that the family learned that money was collected in the guild.

– It was so strong. We were crying and crying, of an intense emotional joy when we saw what life Mats had actually lived. With real friends, girlfriends, people who cared so much that they would fly from another country to the funeral service of one they never met. It deeply touched us, says Robert.

Lisette came from the Netherlands, Anne from England, Janina from Finland, Gitte from Denmark, Kai Simon from Høybråten.

The night before, Robert had dinner with the gamers and learned more about who Mats had been in the digital community.

– In the days after he died, and at this dinner the night before the funeral, a new room opened for me, says Robert.

Anne says that the game friends learned that a small movie would be shown with Mats during the ceremony.

– We discussed whether it was right for us to watch this movie, as Mats had always kept his physical figure hidden from us. But we went, and we saw him as he was in reality. It made no difference to us, but it made an impression.
Father and son: Robert and Mats Steen at the Opera roof, July 2012. Photo: private

The funeral service started at 14.30 on November 28, 2014, in Vestre Cemetery New Chapel. In the speech on behalf of the members of Starlight, Kai Simon Fredriksen, also known as the guild leader Nomine, said:

” While we are gathered here today, light is lit for Mats in a classroom in the Netherlands. In a call center in Ireland it burns a light, in a library in Sweden a light is lit, he is remembered in a small hairdressing salon in Finland, in a municipal office in Denmark, many places in England. Throughout Europe, Mats is honored, by many more than those who had the opportunity to come here today.

I met Mats in a world where it doesn’t matter who you are, what kind of body you have or how you look in reality, behind the keyboard. What matters is who you choose to be, how you behave towards others. What matters is what is here – he puts a hand against the temple – and here ». Kai Simon puts his hand on his heart.

When the coffin was to be carried out of the chapel, Lisette was one of the six carriers. It was the first time she was physically close to him.

– I tried not to think about how light it was. In my life, I had seen Mats through the form of Ibelin Redmoore, a great and strong character. In the coffin, there was a person who almost didn’t weigh anything.

– Mats’ legacy will be the imprint he left behind in all of us who got to know him. He touched so many, says Lisette.

To be – someone

What does it mean to be a human in the world – and how do you become this human being?

In his blog, Mats wrote about the computer screen he was in front of, for over half the time he got here on earth:

” It’s not a screen, it’s a gateway to where your heart desires .”
Included in the loss and memory: Mats’ digital identity. Photo: private

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