Robert and Trude Steen were heartbroken when their son Mats, at the age of 25, passed away from Duchenne muscular dystrophy, the degenerative disease he’d been diagnosed with as a child. While the Steens lamented that their son, eventually confined to a wheelchair and unable to speak or eat without intervention, wasn’t able to make friends in high school or engage much with society, a world unknown to them was emerging for him, through his computer screen. 

Mats had entered the role-playing game World of Warcraft as Ibelin, a handsome and helpful detective. While he fiercely guarded his real-life condition at first, Mats eventually opened up to his online friends, starting a blog that chronicled his experiences with the muscular degenerative disorder. After he passed away, his family updated his blog, unsure whether it had any readers. They were shocked when not only did they receive lengthy responses from his friends about the very real ways Mats had impacted their lives, but also a group of them made the journey to attend his funeral in Norway. “[Now] we understand that the fear we had about him never having friends, about him never experiencing falling in love, about him never being important in other people’s lives or being part of history, that was not true,” reflects Mats’s father.

Filmmaker Benjamin Ree (Magnus, The Painter and the Thief) now brings the inspiring story of Mats and his adventures as Ibelin to life through The Remarkable Life of Ibelin, an intimate documentary that weaves interviews with his family and World of Warcraft friends, excerpts from Mats’s blog, and immersive re-creations of his in-game experiences to highlight a life that defied expectation. Here, Queue sits down with Robert and Trude Steen to discuss the process of bringing their son’s story to the screen.

An edited version of the conversation follows.

Mats Steen's World of Warcraft character Ibelin

Madeleine Saaf-Welsh: What made you want to share Mats’s story with the world? 

Robert Steen: The story, in a way, started at Mats’s funeral. He had passed away 10 days before, and we had found a way of informing his community in World of Warcraft without knowing if anyone would pick it up. But they did, and some came to the funeral in Oslo.

Trude Steen: It was a little bit strange because Mats had never met them and they had never met Mats. They came into the funeral and sat down and cried and we just thought, What is this? They came to us and said the same thing: “We have never met Mats, but we have such strong feelings for him and we miss him. We wanted to pay him respect, and he means so much to so many people.”

RS: A Norwegian broadcasting journalist named Vicky Schaubert heard this story [a few months after the funeral]. She carried it with her for years, respecting that contacting us immediately after having lost our son was probably not the right thing to do. But in the summer of 2018, almost four years later, she called me. Vicky came to my office three, four times and she wrote the story, which was then published in NRK, [the Norwegian Broadcasting Corporation], here in Norway, in January of 2019. Within five days, one-fifth of the national population had read the story; it really caught fire on social media and [eventually] traveled to the BBC, who flew over and made two podcasts about this story. They translated it into Portuguese and Spanish to roll it out in their international network in South America. So I think that proved that the assumption of Vicky Schaubert was right: Something in this story had a value beyond our close, intimate family.

Ibelin’s friends gather around him in World of Warcraft

What was that experience like for you, learning about this other life that Mats had, after he passed?

RS: As parents, we have absolutely no idea what is going on [when our children game], who they are meeting, and so on. We have a lot of fear around this and we try to limit their hours spent behind the screen. That was also our experience with the gaming world until Mats passed away. But since he had this disease, we didn’t have anything else to offer him, so we, in a way, accepted that he was gaming like this. 

Mats lived more or less exactly the life that the doctors told us of in 1993 when he got his diagnosis as a four-year-old — that he would gradually lose all of his muscle power and would lose his life at the beginning of his 20s. But one thing that surprised us through his 25 years of life was that he acted like a person who had all the opportunities in the world. We were, of course, very happy that he had that kind of mentality, but we never understood why. [However] Mats had a rich life. Mats had friends. He fell in love, not only once, but several times, and sometimes also with several girls at the same time!

Moving to the start of the documentary, can you talk a little bit about how you connected with Benjamin Ree and made the decision to turn your son’s story into a film?

RS: Norway is a small country of 5.5 million inhabitants. [Where] Benjamin went to primary school, one of his teachers was my kid brother. [Benjamin met with us, and this came about, and] it has been an emotional rollercoaster beyond whatever we could imagine, but he has been extremely good at taking care of us step by step throughout the four years of this process.

TS: Mats gave us hope, after I saw the movie and that he was a happy boy. So I try to live a little more like Mats did, care more for other people, care more for myself and for the world actually, to make a better place.

Ibelin sits with a friend on a riverbank

I’m curious, how was your experience of making the documentary?

RS: It’s this going down memory lane kind of experience. But then there have also been deep emotional pockets where we have fallen into black holes and said, “Was it really right to do this?” Watching footage of him becoming weaker, remembering that suddenly nobody knocked on the door for him anymore. He was lonely. It was hard when he couldn’t eat anymore. So all these dark moments have come back very strong at times. 

TS: Totally agree. And I have also had some thoughts about, What would Mats say? Would he have approved? Are we doing something wrong here? His private life is just out in the world now. So I felt a little bit: Is this right to do? Because he can’t give his approval. 

RS: The thing we always come back to when we ask ourselves this question is that a year and a half before he passed away, he actually started to write about this in his blog and he opened it up for the world. So he was actually doing it himself. And that gives us the confidence that he would also have supported this project.