TThe night their son Mads died at just 25 years old, Trude and Robert Steen were sitting on the sofa in their living room in Oslo with their daughter Mia. They couldn’t sleep. “Everything was a blur,” Trude recalls of that day 10 years ago. “Then Robert said, ‘Maybe we should contact Mads’ friends at World of Warcraft.'”
Mats was born with a disease called Duchenne muscular dystrophy. Duchenne muscular dystrophy is a progressive disease that gradually weakens the muscles. Mads was diagnosed at age 4 and started using a wheelchair at age 10. In his later years, he could only move his fingers and needed a tube to clear his throat every 15 minutes. As his disability progressed, the amount of time he spent gaming increased, reaching 20,000 hours (about the same as a full-time job) over the past 10 years.
Trude and Robert wondered how they could share the news of his death with their online acquaintances. Although they were unable to access his WoW account, Robert found the password to Mads’ blog and wrote a post. It began: “Our beloved son, brother and best friend left us tonight…” But they wondered, will anyone read it?
Trude and Robert were surprised by the reaction. Emails began pouring in from all over the world saying, “Mads’ death had a huge impact on me.” “Mads was wonderful.” “You should be proud of your son.” “Mads was a true friend to me.” While I was struggling, here was a multi-page message from some of my closest WoW friends. To the uninitiated, WoW looks a bit like The Lord of the Rings. The story is set in a fantasy world called Azeroth, where trolls, elves, and glamorous medieval women wage war with flashy swords.
“Games are my sanctuary”…Mads Steen. Photo: Christopher Kumar/PR
Nearly 10 years ago, at the age of 17, Mads created an alter ego in WoW. Lord Iveline Redmoor He was a private investigator with flowing golden hair, a Thor-like physique, and the charm of a villain. Mads had been playing as the character for years, but this email was the first time his parents knew how deep their connections were in the gaming community. This story is now being told in the extraordinary documentary “The Amazing Life of Evelin,’ four years in the making, which will be released in theaters soon and on Netflix later this month.
I met Trude and Robert at a hotel in London. Lately, Robert has been touring schools in Norway with his film. “I think I’ve seen it 150 times,” he says with a smile. They are a warm couple, frank and open. The closeness of their family shines throughout The Amazing Life of Evelin.
Steens had previously been approached to make a film about Mads. “We said no to everyone,” Robert says. “It was too intimate, too personal, too emotional.” But they had a kinship with Benjamin Rees, a 35-year-old film director who would have been the same age as Mads had he been alive.
Source: www.theguardian.com
