Muscular Dystrophy Took His Mobility, But the Internet Gave Him Community

Sometimes it feels like every story we see these days about kids and the internet is all about how it's evil, making them depressed, and a huge problem for society. We keep trying to remind people that the actual science on this finds no support of the internet being so horrible. Indeed, the research suggests it's way more complex and nuanced than that, and part of that nuance is that the internet is often incredibly helpful to a large group of people - often those who would be otherwise marginalized.

But the narrative insists that it must be bad for kids. Often, the narrative" fills up with stories of kids who die by suicide (as if that never happened pre-internet) and stories of the opposite side of the coin are harder to find.

So I was surprised to see The Times of London publish a heart-wrenching story about just one of those situations. It's a story about a kid who was diagnosed with muscular dystrophy and who, as his condition worsened, had fewer and fewer offline friendships:

Mats grows into an intelligent schoolboy with a droll sense of humour. By the age of eight he is in a wheelchair, but he bonds with his schoolmates in Oslo and shares in the communal passion for video games. He loves his little sister, Mia, and their pet dog. Everyone argues over who gets to be on Mats' team during family quiz nights.

His teenage years are harder. His friends, inevitably, are drawn into a world of house parties and late-night cinema trips and early romantic relationships. It is a world Mats cannot enter. No friends came knocking at the door any more," Robert says, without bitterness.

He did, however, end up spending a bunch of time online, mostly playing video games like World of Warcraft. He also started blogging about his life. His parents knew he was doing stuff online, including playing games, but couldn't follow what he was really doing. Then, inevitably, his condition continued to worsen, and, at age 20, he passed away.

His family posted about it to his blog, but they assumed that, given the lack of offline friends, not too many people would notice or care. Turns out they were wrong. Very wrong:

Their grief is deepened by the knowledge that their son had lived a small, discreet life of little real consequence. He had made no mark on the world or on the lives of anyone outside his immediate family. Mats had never known romantic love or lasting friendship, or the feeling of having made a meaningful contribution to society. They log in to his blog so they can post a message letting his followers know that he has died. And then they sit together on the sofa, unable to sleep, unable to do anything.

Then something rouses them. It is an email from a stranger, expressing their sorrow at Mats' death. It is quickly followed by another email from another stranger, eulogising their son. The messages continue, a trickle becoming a flood as people convey their condolences and write paragraph after paragraph about Mats. He had a warm heart, people write. He was funny and imaginative, a good listener and generous. You should be proud of him, everyone stresses. A primary school teacher from Denmark writes that after hearing of Mats' death, she broke down in class and had to return home. A 65-year-old psychologist from England says something similar. Mats was a real friend to me," writes another stranger. He was an incurable romantic and had considerable success with women." Someone else writes to them describing Mats' empathy. I don't think," they say, he was aware of how big an impact he had on a lot of people."

As they come to find out, their son actually had a thriving social life within the game. Incredibly, the article even tells the story of how one of his friends online, another teen, had her parents confiscate her computer, complaining she was spending too much time on it. When she complained that this was cutting off her social life, leading to depression, Mats intervened and was able to convince the parents to let their daughter back online, helping her deal with the depression:

But though Mats' true identity remains hidden, what's striking is how much he is able to affect the lives of the people he games with. Lisette's parents confiscate her computer when her school grades dip, and don't believe her when she tells them she will be cut off from so many of her friends without it. Isolated and lonely, she falls into a severe depression. I couldn't think of reasons to get out of bed," she says. Mats intervenes. He writes a heartfelt but measured letter to her parents, introducing himself as an online friend of their daughter's, expressing his admiration for Lisette, explaining how important World of Warcraft is to her and urging them all to work together to find a solution that will allow her some access to her computer.

Lisette's parents are taken aback. But they reassess and Rumour returns, and she and Ibelin are reunited in the game once more. He helps Lisette unpack and understand her troubles. Ibelin was a really big support pillar. He was a friend I could be open with about all the things that were going on," she says. It's one of the things that got me out of the depression I was in."

There's even more in the story, but much of it comes from a new documentary about Mats that is coming to Netflix.

I find this marginally ironic, given that Netflix also produced The Social Dilemma," which, to this day, remains one of the leading causes of the misleading moral panic around the internet. It truly is the Reefer Madness" of the anti-internet moral panic.

Still, while Mats' story is very sad, it's great to see a depiction of how much the internet provided him and others with a real social life and deeply meaningful experiences that wouldn't have happened without it. The world needs to hear more such stories.