Netflix and chill right? This award-winning documentary had been on my Netflix queue list for a while but didn’t get round to watching it until last weekend. I generally avoid medical-related films since we already face so much sadness at work. However, the film was engaging, moving and even surprising, despite the ending being obvious right at the start of the film.
The Remarkable Life of Ibelin is a documentary produced by Netflix in 2024, about Mats Steen, a young Norwegian man with a genetic neurodegenerative condition, Duchenne’s Muscular Dystrophy. The film opens with interviews with his parents, supplemented by home videos taken at different times of his life. It documents the grief and accompanying guilt when he is first diagnosed in early childhood, then shows how their family adapt and cope over the years as he gradually deteriorates, becoming wheelchair-bound, then on home ventilator support at the end. Mats is fortunate to have a loving and wealthy family who include him in all family events. Nevertheless, his outer world becomes constrained as he grows increasingly disabled and unable to participate in activities of daily living. He spends long hours playing video games with using specially adapted equipment, in particular, the online World of Warcraft WoW. His parents sadly accept there is no escaping a diminished life, with no hope of finding love nor engaging in meaningful work.
The main hook for the film is that after Mats’ death at 25 years old, his parents are shocked to discover that he had led a fulfilling alternate digital life in WoW. His online alter-ego, Ibelin Redmoore, was a detective in the fantasy guild Starlight, with many online friends and was also popular with women. His parents are delighted to learn from several guild members, how their quiet son was considered a wonderful listener who gave good advice, and also experienced his first love with a fellow role-player.
Apart from the interviews with family and guild members, a large part of the film is told through animation that reenacts the guild members’ interactions in WoW. The filmmakers created animated sequences based on thousands of hours of archived dialogue chats and character descriptions in WoW. The charming old-gamer-style animation sequences with slightly ridiculous fantasy figures contrast against the real-life versions of Mats, family and friends shown in the home videos. This dissonance helps the viewer understand the different personae inhabited by Mats in digital/ real life.
As a pediatric surgeon with special interest in neurogenic bladder, I have worked with families with disabled children for more than twenty years, so was already familiar with several psychosocial aspects highlighted by the documentary. Nevertheless, the film was truly moving, particularly when showing the patient perspective by using Mats’ own words from his blog written near the end of life. In addition to neurodegenerative illness, the film also shed light on other healthcare concerns, such as depression, mental health in chronic illness and autism. For me, as a parent without any gaming experience, the film was enlightening about digital influences on adolescent social life.
The documentary is not without faults; it is at times over-sentimental, and some segments should have been more tightly edited. However, it was touching (yes, there were tears..), and it receives A* as a vehicle to enhance perspective taking, for healthcare professionals. Worth a watch!
In her imagination, Caroline is a dancer / artist / writer... In reality, she just enjoys taking lessons, watching and reading the work of real artistes.