In an age where debates rage about the perils of children’s smartphone and social media use, a new documentary offers a poignant counterpoint, illuminating how online gaming provided a vital lifeline for one boy isolated by disability. The Remarkable Life of Ibelin traces the hidden digital existence of Mats Steen, a Norwegian 25-year-old with Duchenne muscular dystrophy whose extensive network of online friends and admirers only came to light after his death in 2014.
A Life Transformed by World of Warcraft
Born in 1989, Mats seemed a typical energetic, good-natured child, distinguished only by his unusually pale complexion. But his parents Robert and Trude soon received the devastating diagnosis of Duchenne muscular dystrophy, a genetic condition that would gradually erode Mats’ ability to move and breathe. As his physical world shrank, Mats increasingly retreated into the virtual realm of World of Warcraft, where he adopted the avatar of a red-haired, able-bodied character named Ibelin.
Digital Connections, Real Emotions
Unbeknownst to his family, sequestered alone in an apartment above them, Mats cultivated an extensive network of friendships through his online persona. Using special adaptive equipment to play, he poured himself into the game, not just as an escape, but a place of genuine human connection. As one friend tearfully recounted:
“Ibelin helped me build a relationship with my autistic son through our shared experience in the game. His kindness and sage advice touched so many lives in ways I don’t think he ever fully realized.”
The depth of Mats’ impact only emerged after his family logged on to announce his passing, assuming the blog had a minuscule readership. Instead, a flood of condolence messages illuminated the extensive, hitherto hidden world their son had created and nurtured.
Animating a Hidden Existence
Using an archive of thousands of lines of in-game interactions, the filmmakers innovatively recreate Ibelin’s digital adventures through World of Warcraft-style animation. The burly, big-bosomed fantasy characters may initially appear ridiculous, but end up providing an unexpectedly moving lens into the empathy, humor and abundant life Mats crafted within the game’s digital confines.
In one especially poignant scene, scores of Ibelin’s multi-hued, improbably-proportioned comrades gather around his modest real-world gravestone, the visual dissonance only underscoring the depth of genuine emotion and connection they shared. As the camera pans across the fantastical mourners, it becomes impossible not to shed a tear.
Reconsidering the Role of Online Connections
The Remarkable Life of Ibelin never minimizes the incalculable challenges and losses inflicted by Duchenne muscular dystrophy. But it does argue for a more nuanced view of the role online gaming and digital identities can play in providing meaning, purpose and precious human connection for those cut off from so many real-world experiences and interactions.
As society grapples with how to harness the connective power of technology while curtailing its harms and excesses, Mats’ story provides a vivid reminder never to underestimate the depth of relationships forged in the virtual realm. For while his physical body may have been confined to an isolated room, his spirit found freedom, friendship and an enduring legacy in the digital world he so lovingly cultivated and inhabited.
The Remarkable Life of Ibelin is in UK cinemas from 18 October and on Netflix from 25 October.
