Mats Steen, a Norwegian gamer, died of a degenerative muscular disease at the age of 25. His parents mourned what they thought had been a lonely and isolated life, when they started receiving messages from online friends around the world.

You can see the trailer for the film here

Mats Steen was born in 1989 and, fairly early on in life, was diagnosed with a Duchenne muscular dystrophy, an incurable inherited disease. The disease not only shortened his life but meant that the years he did have were a cruel reversal of the normal journey from toddler to adult – a journey of progressively reducing physical capacity and independence. The wheelchairs became more complex, the aids more sophisticated, as even the simple joy of eating became outsourced to a feeding tube pumping nutrients directly into his stomach.  And through all this his mind remained vibrant and active trapped in a slowly deteriorating body.

His parents mourned in anticipation all the things they thought he would never do, the chances to socialise, to experience friendship and love. While they indulged him with electronic games which ameliorated the constraints of his disability, they did – like many parents – wish and urge him to ‘get out more’ to mix and mingle. But for a boy in a wheelchair the ‘excursions for the disabled’ were not the intrinsically joyful experiences they imagined and Mats retreated ever deeper into the world of online gaming and particularly World of Warcraft.

To his parents this felt like an isolation from the world, they did not see his online friends and relationships as either real or numerous. However, after Mats died in his sleep in 2014, they did post a notice of his passing on a blog he had recently published, so that his online friends could hear the news and they offered an email address they could contact.

They were stunned by the response.

A huge volume of emails, many of them describing at length the value their son had brought into so many other people’s lives, and within that deluge of condolences and compassion came a realisation of the full and rich life Mats had managed to live.

Mats had played a character Ibelin in a European based server of the World of Warcraft franchise. On that server he had been a member of the Starlight guild, one of many guilds that enable people to build their own online communities within WoW both to play and to socialise.

Mats’ reticence about his disability meant that he never participated in voice-chat or video-calling. Consequently, all his communication with this community was through text-messaging in the guild’s message chat. This meant that every message he sent, every word he spoke, every wave or action that he took was logged and saved in 42,000 pages of guild records. This amounted to years of ‘lived experience’ documented more closely than any Big Brother contestant ever was.

That archive is at the heart of Benjamin Ree’s powerful film. It has enabled animators to reconstruct all of Ibelin’s adventures, and researchers to make contact with the humans behind the characters that Mats – as Ibelin – interacted with.

This makes for a moving narrative as we first see Ibelin teased by a character named Rumour, we watch their growing friendship in the game – real conversations – and we see Ibelin’s dismay when Rumour disappears. Then the film maker introduces the young Dutch woman who played Rumour, what their relationship meant to her, how it got broken, fixed, broken again and finally fixed for good.

The film focusses heavily on Rumour and on a mother and son pair that Ibelin also knew well and on whom he had a profound effect. However, it is clear there are many more people they could have chosen, many more deep relationships they could have explored. Many more ways they could have revealed Mats’ influence as a calm voice, as a sounding board, as a person genuinely interested in each person behind the pixels.

My own familiarity with WoW is as a fun online game where I have sometimes played with people I already knew outside the game (looking at you Julia & Geoff) or I have formed brief alliances for the sake of a particular quest. However, as the film makes clear – World of Warcraft was far more than a hack and slay monster hunt for Mats. The overwhelming focus of the film is on the interactions between the players, the teasing, the games, the conversations, the arguments, the hugs, the kisses – yes the kisses.

In the early days of the dial-up-internet, people would ‘meet’ in chat rooms and indulge in text-based banter, but WoW turned those dull screens of scrolling text into scenic taverns filled with fleshed out avatars. Places where people could see themselves dancing, or drinking, as they chatted to whoever caught their eye.

We have become a very digital world. Every social media platform has its message facility by which we can chat to people we might never, or at least rarely, meet, and while the Trolls might try to ignore this, at the other end of every keyboard is a real flesh and blood human being.

The conversations that Ibelin had in Elwynn Forest in Aezeroth were as real and meaningful as those in any pub or restaurant, but WoW gave Mats – or Ibelin – more than text, it gave him an avatar and an environment in which he could slip the surly bonds of his wheelchair and imagine himself living the full-bodied active existence that nature had deprived him of.

It’s not surprising then that Mats found himself deeply absorbed in his WoW life and his Starlight guild companions. What is perhaps less expected is the degree to which his beautiful personality shone through, in the many ways he counselled and advised his group members through familial and personal difficulties. Perhaps it is true that, hidden behind the pixels, we can be more open than we might in person – people would confide more readily – but the support was no less real or valuable for being delivered through a gaming platform.

There were so many points in this film that had me in tears, not just for the difference Mats made in people’s lives but for the way his online persona of Ibelin enabled him to escape the constraints of his debilitating condition.

However, it may be that escapism that made Mats so determined to keep the reality of his physical condition secret from his online friends. Perhaps he feared that if those two realities would ever meet then his escape might be ruined, that people might see him no longer as fantastic Ibelin, but disabled Mats.  But as his disease progressed and his physical capacity deteriorated, his ability to play in the games became compromised. WoW is a complex real-time game requiring fast and accurate finger clicks. As someone who, to my mortification, has more than once pulled a whole roomful of monsters down on a party, I know the shame, the embarrassment of failing in the key duties of the game. To those who couldn’t know why (because Ibelin never told them) his failures appeared either deliberate or stupid.

Alongside this, Mats was getting both fearful of and frustrated with his deteriorating condition. So again, unsurprisingly, that led him into conflict within the group, arguments and harsh words, some of which alienated his once closest friends – one of whom didn’t speak to him for a year. (See I say ‘speak to him’ I don’t specify speak to him in game – because in game or out of game it was a real connection and a really broken connection.)

However, it was same friend who finally got Ibelin to crack, to stop dismissing his erratic but lengthy absences as ‘being on holiday’ and admit that he was ill. With that it became possible not only for an apology to those in the group that his actions had hurt, but for the Starlight Guild as whole to rally in support of Ibelin who had ‘been there’ for so long for so many of them.

On the one hand it is wonderful (if not unexpected) how his disability did not change their perception of Ibelin – he continued to be able to fly from his chair and into the game. As Rumour put it, things went back to how they had been.  However, on the other hand there is that regret that they all felt at how – having hidden his problems for so long – they had been unable to offer him their support when he most needed it, just as he had offered his to them. Rumour certainly was sorry at the missed scope for reciprocity.

However, in this last period of his life, Mats came to terms more with his disability – he wrote a blog about it, he allowed a documentary to be filmed about the devices that supported his life and access to the online community. He continued to keep this side of his life secret from his family, which made the response to their in memoriam announcement all the more stunning.

I don’t think I’ve cried as much watching a film since I watched Juliet Stevenson in Truly Madly Deeply and I’ve certainly never cried so much writing a review.  The closing motifs of the film are his father’s eulogy talking about how their son had lived such a life that they had barely dreamed possible for him through WoW and the Starlight Guild. The fact that five members of the Starlight guild travelled to Oslo to attend his funeral in person, that they brought a Starlight Guild tabard to lay on his coffin, or that the name ‘Ibelin’ is engraved between ‘Mats’ and ‘Steen’ on his gravestone, all these make me cry.

A lot of my thinking at the moment is about how humans are made for connection. Our brain architecture is one of connection with memories stored not in simple pigeon-holes but in neural networks of firing neurons. Adrian Tchaikovsky’s works – particularly Alien Clay and Shroud – play with this idea of connections, of no person being an island, and the value of our lives being entwined with how we have touched others. I remember also how Manda Scott in Any Human Power also made the point that connections through games like WoW are real and meaningful – a new dimension of human interaction. Mats as Ibelin – certainly explored that connectivity to the full.

In one conversation that Ibelin had, having just revealed his condition to an online friend, he shared his fear of death, of having lived and died without ever having ‘mattered’ thanks to the constraints of his disease. My own Bloodline trilogy essentially played with ideas of immortality and what people would do in desperation to avoid death.  A half million words built up to the point where I had one character offer this rather ponderous epiphany.

“I was wrong about immortality. There are only four ways, four true ways to live on after death. The first is in the things we make that endure. The second is in the memories that we sow in the minds of others. The third is in the habits we teach which, whether we mean the to or no, others follow us in. And the fourth lies in the children we leave behind us.”

This beautiful haunting film shows just how and how much Mats ‘Ibelin’ Steen’s life mattered and how he lives on in the memories and the lives of others. Watch it and weep!