When the Power of Humanity Expands into the Digital Realm: “The Remarkable Life of Ibelin” Review 

“The Remarkable Life of Ibelin” Review by Hawken Miller, Writer and Advocate

When Mats Steen, a young Norwegian man, passed away from Duchenne muscular dystrophy at 25, his parents Robert and Trude were inconsolable. They had outlived their son, who lived what they saw as an isolated and lonely life due to the physical limitations caused by the degenerative neuromuscular disease.  

Early on in Mats’ life, he could play with friends, run on the sand, and swim on his own, but by the time he hit his teenage years, typically the most formative years of a person’s life, he was confined to home and in a wheelchair. Video games became his only escape, and he played for hours and hours every day.  

“The biggest pain your mother and I suffered through life was that you, because of the illness we brought you into this world with, should not experience falling in love. You should not experience friendship, you should not experience social relationships and joint activities with others. You should not experience contributing to society and playing a meaningful role in other people’s lives,” Robert said during his son’s funeral. “This was by far our biggest sorrow.” 

But that changed one day, after his passing, when they discovered he had forged a strong community of people through the massive online role-playing game World of Warcraft (WoW). Emails of sympathy and support flooded their inbox after Mats’ online friends discovered he had died. In fact, five of them flew out from various parts of Europe to attend his funeral in his home country of Norway. His parents had no idea how many friends Mats actually had. 

“You proved us wrong. You proved us so wrong,” Robert added in his funeral speech.   

Not only that, but there were 42,000 pages of chat logs that had been saved on the online WoW server Mats’ was part of. What Mats’ parents once thought was completely turned on its head. 

What acclaimed director Benjamin Ree has created in his documentary, “The Remarkable Life of Ibelin,” now available on Netflix, is nothing short of astonishing. Armed with these pages of chat logs, Mats’ blog, an animator, and hundreds of hours of home videos, Ree crafted a powerful story about Mats life with Duchenne, but also his full life in WoW. 

As someone who has Duchenne, I’m also able to draw the parallels between Mats’ life and my own. Although my life growing up in California was different from Mats in Norway, I still had the challenge of transitioning into a full-time wheelchair and losing physical abilities every year. 

I also fell into video games because it was a way for me to be competitive and keep up to date with friends. I could do so many things in Star Wars Battlefront II, Halo Reach, and Call of Duty that would have been impossible with Duchenne. I understand, especially knowing that it was difficult for Mats to get out to see people in person, how important this was for him.  

I also understand that it was possible for him to make a difference there. This was also the closest thing that gave him relationships. He interacted romantically and as a friend through virtual hugs, kisses, and dialogue. Mats could have decided to be mean and cynical online, (and, like all of us, he had his moments, as the documentary shows) but he instead met people with kindness and a listening ear.  

I’ve seen the movie three times now in various stages, so I have a unique perspective on this film. I saw it when it was in early stages in Oslo, Norway. The animation was rough, and it had yet to be scored, but the story was no less powerful. Then again at Sundance, where it won two awards. Now I’ve seen it once more on Netflix. 

There’s something new that gets me every time I watch “The Remarkable Life of Ibelin.” It reaches towards your base human emotions and brings them to the top. When I’m watching with an audience, the sniffles start early, and the river of tears open up by the time we reach the end. 

The musical score of the documentary adds a palpable level of depth to Ibelin’s story. You don’t notice it right away, and that’s what makes it brilliant. It makes the story all the more emotional. Compared to the first time I saw the film without music, it’s night and day. 

The love between Ibelin and his romantic interest, his fear of death, and that freeing feeling Ibelin felt when he went on his daily run through Azeroth (the fictional world of WoW) were all perfectly captured by the music and sounds that went along with them.  

This was before the time of virtual reality, and this was the closest Mats could get to it. He inhabited the muscular, blonde-hair blue-eyed avatar of Ibelin while his muscles were wasting away in real life. It separated him from the pain of reality. As someone facing that daily reality, I can completely empathize with this feeling. We don’t look the way that we wish, so we create virtual characters that bridge the gap between dreams and reality. 

—SPOILERS AHEAD—  

Mats’ life started like any of ours would. He was born to two loving parents and joined the family with his sister and their dog. He was the apple of his mom and dad’s eye. Home videos cut into a close up of a VCR tape, whirling along.  

All seems normal, but the joy of having a new baby didn’t last long. As a toddler, he waddled around the house bumping into things and falling down. Something was very wrong. Duchenne quickly took away his muscle strength and confined him to a wheelchair.  

We see Mats slowly lose his physical abilities as the home videos roll through time. Then he’s at his uncle’s wedding. It was last footage captured of Mats before he died. His life seems like it was cut short abruptly, seemingly without meaning. In the film, that’s when the VCR tape stops.  

Then his parents are seen reading all the emails from his friends through his WoW guild, Starlight, and the music starts to pick up. The VCR tape begins rewinding. The home videos that make up the beginning of the film play in reverse. The violins in the background up their volume and tempo. The VCR stops rewinding. 

Now we are back, viewing Mats life from a different perspective, told in his own words on his blog, Musings of Life. The use of imagery, mixed with music and editing, make this sequence of the film come alive. It adds drama and suspense to the film. The VCR tape anchors the imagery of Mats’ parents rewinding through his life to find he had a completely different experience than they thought. 

The magic of “The Remarkable Life of Ibelin” comes as Ree gives us a glimpse into life in WoW. We are seamlessly transitioned into his online world with animations that are true to the artistic style of the game. We finally get to see what he felt like while living out an online fantasy as a private detective. 

Mats had many friends in WoW who he helped even though he couldn’t physically interact with them. He began an in-game relationship with a woman named Rumour. It turned out she was around the same age and lived in the Netherlands. They became close and Ibelin helped her through her challenges with depression. 

Ibelin met another friend in WoW, Reike, who turned out to be a mom named Xenia from Denmark. When they met, she was struggling to find any kind of connection with her son, Mikkel, who was on the spectrum. After getting to know her through WoW, Ibelin suggested that she play with Mikkel. They were able to finally hug virtually, thanks to Ibelin’s urging. Mats allowed her to have that connection with her son she had always dreamed of.  

Mats helped a lot of people but he wasn’t perfect. I appreciated that the documentary didn’t portray Mats as some overly-inspirational person who was a perfect human being because of his disability. No, Mats was not perfect. As his health began to decline, he lashed out at some of his friends. While they were enjoying life at an in-person meet up, he was stuck in his wheelchair. 

“If only I wasn’t handicapped,” Mats muses in his blog.  

During the meet-up, Ibelin sought out and flirted with other girls in the game. Instead of helping others, Ibelin began to demean other members of the guild. Then he began having trouble reaching buttons and was rendered unable to help his teammates fighting in raids. He even left the guild for a bit. 

Part of this outburst in the game stemmed from his greatest fear that his life wouldn’t matter. It was Xenia who changed his mind though. His life had mattered to her and so many others in the game. She began to share the stories of him helping other people through their issues outside of WoW. Mats even shared in the chat: “This is too emotional for me.” 

It was after that moment he logged back in and was able to share his diagnosis. His community tried to step in the same way he stepped in for others. They sympathized and understood Mats’ situation, though they wished they could reciprocate what he had done for them.  

The biggest takeaway here is that people with disabilities are human. They go through all of these things. They are far from perfect. They remain human even with what they have to deal with. We, and I’m sure Mats would agree, would like to be treated the same as much as possible. And that was the appeal for Mat to keep his diagnosis hidden for so long.  

There are so many other takeaways can be gleaned from this film. But for me it was the importance of helping others. It’s what gives us the most meaning in life. That’s how God designed us to operate.  

While Mats’ life on earth may have ended, he hasn’t stopped helping people. The VCR is still running. The awareness he’s bringing to Duchenne through his powerful story is going to help us get closer to a cure so that other boys in the future won’t have to go through the same challenges he did. It’s stories like this that bring us together and set us on a path towards making the world a better place. 

Watch “The Remarkable Life of Ibelin” on Netflix 

Learn how Mats’ Legacy Lives on through a charity partnership with CureDuchenne and World of Warcraft