Our CEO Jon, a fellow WoW gamer with Duchenne shares his own story after watching The Remarkable Life of Ibelin on Netflix. “We weren’t as rare as you think. WoW was the community I needed at a challenging time”.
BY JON HASTIE, CEO OF PATHFINDERS NEUROMUSCULAR ALLIANCE
On watching The Remarkable Life of Ibelin on Netflix, I was inspired to re-download WoW, to recapture my days as a fellow World of Warcraft player with Duchenne. We weren’t as rare as you think. While mostly seeking nostalgia value, I also wanted to support Cure Duchenne’s fundraising partnership with the game.
The documentary tells the story of Mats Steen, a Norwegian man with Duchenne Muscular Dystrophy who shaped the lives of people all over the world through his character in World of Warcraft. When Mats’ story first came out in the media, it stuck in my mind as I was also an avid WoW player at the time.
Like Mats, I have Duchenne. I’m one of the lucky few to live into my 40s. But it comes with almost complete paralysis, a powered wheelchair and a ventilator I rely on to breathe 24 hours a day.
I was part of a guild called Click, friends with whom I shared many evenings and weekends trying to bring down raid bosses. I wasn’t so much into roleplay, but we had many laughs trying to beat the game.
My friendships formed in WoW were never treated seriously by non-gamers. My Dad teased me about my “little friends”, despite having recommended the game to me in the first place! Spending time online with friends was always considered inferior to activity in real life.
At first, the friends I had in WoW only really talked about the game, so that might have been fair. But in the hundreds and thousands of hours we spent with each other, we couldn’t help but get to know each other on a real level. My WoW friends gave me as much joy as any of my “real” friends.
Sometimes life got in the way of WoW. I lived with my parents and our family dinner times got in the way of raid nights. When I finally moved out, I had the freedom to play whenever I wanted. My parents worried I would get lonely living alone, but with friends online every evening to chat to on Ventrilo, how could I?
It wasn’t just superficial fun, it was a community with its own dramas and arguments. Like many hobbies, it required someone to take the lead – deciding who joins the raid, distributing loot or kicking people out for bad behaviour. With that power came disputes and challenges. It felt serious, and it tested online friendships. Coming out of a big guild-bust up strengthened some friendships and broke others, and those who remained formed Click.
My offline life was not as limited as Mats’. I had many friends from university and school, had a PhD and I worked part-time for a disability organisation. I enjoyed drinking at the pub. I spent most of my free-time gaming, often to excess, but I continued working and meeting friends down the pub whenever the opportunity arose. I am lucky to have had this life, I know, as it isn’t typical for people with Duchenne.
Over time, however, the real-life opportunities stopped happening so often. Friends were getting married and having kids, and life was taking over. I didn’t have anyone I was close to. My WoW guildmates were becoming even more important. I could see how Mats could focus all his effort into online interactions.
I never hid my disability from people on WoW, but it didn’t often come up. I was happy enough for people to know the real me, and my voice, even on a ventilator. But I also liked my disability not being a limiting factor. It was just a detail about my life.
One day, while running some quests, a guildmate mentioned that another of our friends, Vicky, was in a wheelchair. I was surprised, but when Vicky came on again, we got talking about our real lives. I was amazed at how much we had in common. Incredibly, of the millions of people playing WoW across the world, I had inadvertently connected with another disabled person who lived an hour’s drive away.
Vicky quickly became a good friend. As a gay man, it was never anything more for me. But while I was getting to know Vicky, she was making her own connections and even falling in love with another of our guild mates, Dean.
Dean and Vicky were together in-game for a while and we all knew their relationship continued outside the game. Before long they moved in together and got engaged. Shortly after this, I finally got around to visiting. Vicky was in Bexhill and it was an easy journey.
It was a little awkward at first, seeing an online friend for the first time. And yet once we got talking about the game, it just felt natural. We didn’t have to make small talk about things we didn’t care about. We already had a huge part of our lives we shared together, and it was OK to talk about gaming. We used our gamer names and I was introduced to Vicky’s Mum as Masa.
Vicky and Dean’s wedding was the first time that the UK members of our guild came together in one place. I remember being worried about meeting these other people. They knew I was in a wheelchair, but they didn’t know how truly disabled I was. I was scared that they might have a lower opinion of me, particularly in terms of my gaming ability.
After all my worrying, it didn’t even seem to matter. Everyone was friendly, relaxed and interested to meet and chat with each other. Nothing changed the fact that we enjoyed each others’ company and shared a love for WoW.
For me, learning about my guildmates real-life context only deepened our friendships. It made everything “real” I suppose – much as it never felt unreal. It was just richer.
Eventually many of us lost interest in WoW and slowly stopped playing. I also met someone, and offline life became a little more interesting. It was a shame, because I have never since found a game with a community as welcoming as WoW, and it is something that, now I’m divorced, I would welcome again.
The friendships I made persisted well after our WoW guild closed down. Vicky is now my best friend and we work together in Pathfinders Neuromuscular Alliance, a charity I founded to support people with neuromuscular conditions like Duchenne. It’s where this blog is hosted, so check us out!
I still enjoy gaming, which provides an escape from my physical limitations. My movement is far more limited, and I doubt I’ll be winning any WoW arena battles any time soon, but I hope to find a community again. Perhaps that will be in WoW.
Coming back to Mats and Ibelin, I understand how he felt. The game empowered Mats to be the person he wanted to be and allowed him to have a positive impact on the world.
I am grateful for what WoW gave to me, and the friendships that changed my life. I am grateful for what it gave Mats and many others – meaning, joy and support from friends. WoW is more than just a game, it’s a virtual world that interacts and shapes our offline one through the people we meet. I’m pleased to have been a part of that.
R.I.P. Ibelin – I never met you but I wish I had.