8 ms·

The Remarkable Life of Ibelin

295 points by _tk_ 2y ago

jmclnx 2y ago
Not what one would expect from the title, but a good read. wayback machine: https://web.archive.org/web/20241005124635/https://www.thetimes.com/life-style/parenting/article/we-only-learnt-of-our-sons-secret-online-life-after-he-died-at-20-rj3bqfnqn https://web.archive.org/web/20241005124635/https://www.theti...
sonofhans 2y ago
It reminds me of this story from a decade ago — https://kottke.org/14/05/the-ghost-in-the-machine https://kottke.org/14/05/the-ghost-in-the-machine Sometimes I feel like digital prosthetic memories are an awful crutch; sometimes I’m in awe of the genuine emotion they can inspire.
bdjsiqoocwk 2y ago
If this was such a big part of their son's life, how come they weren't aware? I'm asking this more to wonder out loud whether I'm in need of some introspection than to blame them.
- magicmicah85 2y ago
  I think from their perspective, all they saw was a video game, they didn’t know that it involved intricate role-playing and community.
  - chx 2y ago
    That's the thing. WoW came out in 2004. What came before in a similar genre? Maybe Diablo II in 2000-2001. And while the Guild Halls were planned for D2 they never actually shipped. There were forums etc but nothing like the scale and possibility of WoW. There were no patterns for this before.
    - temp0826 2y ago
      Ultima Online, Everquest, Lineage...Blizzard definitely had a leg up with their brand recognition which boosted the genre to new levels, but it really wasn't a new idea.
      - chx 2y ago
        In 1997 UO had ~100 000 subscribers, in 2004 WoW had over a million. It's nowhere near the same. This is a very common misconception, really. Yes, there are no new ideas. The fact that LG Prada sported a capacitive touch is only relevant for mansplaining. rewind.ai predates Microsoft Recall but who cares, really? The chances of an abusive spouse discovering it and using it to oppress further a woman is nil while Recall will be right in front of their eyes. AirTag was not the first stalking device but for sure it was the first to reach mass enough adaptation to get multiple women murdered. The list is endless.
  - Tor3 2y ago
    That's exactly what his father said. They had thought it was just playing a game (he used the word 'competition' when he spoke about it). EditAdd: And it's not strange. First, Mats had his own apartment, it wasn't like he was playing where his parents were walking past all the time. And secondly, every time he logged on to WoW he would spend the first 30 minutes running. So if anyone watched him when he started playing the would simply see a figure on a monitor running on a road, and keep running, and that was all.
- asyx 2y ago
  I think to parents at least to millennials, the idea of an MMORPG is just even more foreign than it is to parents to gen z or gen alpha. WoW was maybe not the first big title but it was the first that really put the genre into the mainstream. A genre inspired by the novelty of virtual worlds. I think to them, their son just played a dumb video game and in the best case they weren’t necessarily supportive but also not against it. Just a weird thing he did that they didn’t understand. How could they possible imagine that he spent his time in that world with people from all around the real world talking about the game and their life alike for hours on end. Being there for those people when life hit them and being able to expect the same in return like what you’d hope friends in the real world would do. To my mother, all people online that talked to me when I was a teenager would be creepy old people trying to groom me. But the people I’ve met in those games are now my best friends. If I were religious, one of them would have been the godfather to my child.
  - bear141 2y ago
    Despite the obvious name, I find no reason not to engage in the custom of appointing a god parent despite the lack of belief in any of the gods.
- lynx23 2y ago
  You're pretty much onto the crux of the situation. Lets put it mildly, its a rare case that the parents of a disabled child/person truly understand their needs/desires/wishes/dreams. Its much more common that the barrier that appears between disabled and non-disabled people will persist, and will not get broken down. Most disabled people I know (and I am disabled myself) basically had to run away from home to get some degree of freedom. Its a rather sad thing, which involves a lot of things, mostly the trauma of the parents which they likely never overcome. And the desire of the disabled peerson to gain some independence. Which is usually not compatible with family.
  - bdjsiqoocwk 2y ago
    That post really made me sad. I'm not disabled and neither is anyone in my family. But my relationship with my parents was always bad. I never spent any time thinking about the lives of disabled people because they've always been such an alien reality to me, but I think if you'd asked me think about it I wouldve had the vague intuition that disabled at least had good relationships with their parents because how dependent/how much time they were forced to spend with them. Your comment about the trauma that parents never overcome added a really dark twist for me to the concept of "bad relationship with your parents". Anyway thanks for sharing
  - StefanBatory 2y ago
    And longing for a family that you could have had... I find it that people who grew up with attentive parents just don't understand how one can not trust their parents, or what it is like to have to hide everything from them.
- CM30 2y ago
  Because most people aren't that aware of their friends and relatives' hobbies and interests, nor the specifics about how they work. So if that person doesn't speak openly about them (and let's face it, most people won't simply because the other person won't find the topic that interesting), then they'll only know the most basic aspects. Like, someone I'm friends with regularly goes to the climbing gym. I vaguely remember being told which gym it was at one point, and I know the sport they partake in, but that's basically it. I don't know if they've got any friends or acquaintances they hang out with each time they go, if they go to events related to it, whether they discuss it online, etc. And the same goes with what most people (friends and parents included) know about me and my own hobbies and interests too. They might know some of the things I'm interested in and some of the people I'm friends with, but it's certainly not all of them. In general, people tend not to know everything (or often, even that much in general) about their friends and loved ones. They know what they're willing to talk about/have bothered discussing, and that's usually it.
  - jumping_frog 2y ago
    Would you say "Our lives have been digitally unbundled" be accurate characterization?
    - CM30 2y ago
      Quite possibly. The internet's existence means it's a lot easier to have hobbies and interests and friendships that your real life friends and family don't know about, that's for sure.
- stego-tech 2y ago
  It’s because, for those of us who exist in these realms - be it WoW, EQ, furries, whatever - we get very, very good at being discrete. There’s that initial excitement when we desperately want to share our joy with our parents or siblings, but all too often that joy is dashed by popular misconceptions, media sensationalism, and flat-out fabrications about “strangers online” and the like. I found solace in online communities as an introvert traumatized by repeated cross-country moves growing up, and when I tried sharing my online friends with my parents, they deleted my social messenger accounts at the time. So that’s why this stuff often pops up as a “surprise” to those left behind, or comes across as a “double-life”. We often tried to open up and share ourselves, but were shut down for the unorthodox ways we found happiness or identity, and realized the best approach was hard segregation of the two. Heck, it’s why I still don’t tie my meatspace and authentic selves together. The meatspace me is this reserved but honest engineer who just wants to make good systems that customers like using and be left alone, but the online dinosaur is…_starkly different_, more open and authentic, exuding more confidence and more empathy as well. We’re unique creatures who adapt to our surroundings, but make no mistake: we always want to share our found happiness with others. Unfortunately, experience often dictates that sharing ourselves so completely is more likely than not to end up causing us great harm, and so we just don’t do it.
  - bdjsiqoocwk 2y ago
    [flagged]
    - StefanBatory 2y ago
      Haha, that's why you will be the last person to know if that ever happens.
    - stego-tech 2y ago
      Eh, depends on the “shade”. If they’re the drama type, then yeah, might be time to have a chat about how to do research, tell fact from fiction, what propaganda looks like, etc, lest they become a tabloid-sucker. If it’s the STEM type who just likes the art and community while also running infrastructure, doing vaccine research, or other Good Work (TM)…just be glad they’re using their decently sized paychecks to help out others and build a better community for everyone. Fandom - furry or otherwise - isn’t inherently good or bad, but there are good and bad elements in every fandom.
- Tor3 2y ago
  They were aware, but hadn't got the correct understanding. They had thought all the time that WoW was a competition, beating the machine.. like the video games they grew up with (and, er, I did), i.e. car racing games and the like. In other words, they weren't aware of the social aspect of the thing.
goda90 2y ago
He was born in 1989, died in 2014. Not sure how he died at 20?
- seattle_spring 2y ago
  The title is incorrect. The age of 20 is significant because that's the maximum age the parents were told that he would live > He may, his parents are told, live to be 20 And later... > The years pass. Mats’ 20th birthday comes and goes The story of his death follows shortly after that line. I'm guessing the title author (usually not the same person as the story author) misunderstood that line, and it wasn't caught during proofreading
ko_pivot 2y ago
I think there is a fundamental difference between MMOGs and TikTok-style social media. I suspect the human brain has a relatively healthy reaction to creatively connecting with other humans via virtual worlds but a comparatively poor reaction to algorithmic feeds.
- spencerchubb 2y ago
  I don't even consider tiktok as social media. It's more for entertainment like netflix. There is not much socializing that happens on tiktok
  - evanmoran 2y ago
    Netflix is curated and not user created, so I’d say TikTok is more like YouTube. Then of course everyone copied the format including YouTube, IG, X, and even LinkedIn (saw this one just today). But even with that slight naming difference, I couldn’t agree more with you that MMOs are rich cultural hubs compared to endless short videos. It’s a low bar :)
    - jumping_frog 2y ago
      Even Spotify. Just saw their short audio clips feed of interesting sections of songs, tracks.
  - whyenot 2y ago
    The fact that you may not have experienced it doesn't mean that it doesn't exist :) There is actually a lot of socializing on TikTok, for example in the "BookTok" community. The format is a little different than on a message board, or IG, but it is there.
    - bloqs 2y ago
      Perhaps at risk of reading too far into it, but it seems the implication is that while Tiktok is called "social media", it seems to be the exception that socialising occurs. World of Warcraft, and many similar games of that era would often be canned as anti-social, but fundamentally facilitated the pursuit of common goals and deep bonds for those otherwise isolated or barred from such engagement in other avenues.
magicmicah85 2y ago
As much as wow was a time sink waste of time for me, I love that it provided community to those who needed it and could thrive within it. Putting this documentary on my to watch list.
- pram 2y ago
  I actually met my wife on WoW, doing progression raiding through vanilla to WotLK. Spending 8+ hours a day together for years forms pretty close bonds ;D
  - binary132 2y ago
    same. it happens!
  - davedx 2y ago
    Same here.
- deadlypointer 2y ago
  I spent way too much time playing it and I also consider it as wasted time. I guess it's because we had an option. He didn't really have ...
Novosell 2y ago
It is a sorta nice story, although I imagine us who actively do participate in gaming communities wont look at it with as much wonder as the writer and the mans parents do, but I'm sort of disturbed by the fact that their son basically did nothing else than play WoW for many years yet they never cared to bond with him over it? Maybe they did but he wasn't interested in sharing? Was he mute? It's not mentioned but it's very possible given his disease. Even so, they could've gotten something of an understanding of it surely? Their ideas about it and the reality of it were not even close. It can be tiresome to take care of sick family members, I relate with that, but they still come off as negligent in this article. Feel like I need more info.
- magicmicah85 2y ago
  I have three kids, and even when I ask what they’re playing they just give me simple answers. “Who you playing with?” Friends. “What game you playing?” A game. Imagine trying to explain an mmo and role playing to people who don’t play video games. Probably not an easy conversation to explain you’re Ibelin, the noble warrior of Azeroth.
  - deleted 2y ago
    [deleted]
- itronitron 2y ago
  Consider that they were providing the environment and resources that he needed in order to have a positive impact on other people's lives. I don't think you should perceive it as negligence if they didn't know about it. Mans probably wanted to keep the worlds separate, as his parents knew everything about his condition and he didn't want to reveal that to the online community (until he started blogging.)
- StefanBatory 2y ago
  Some parents aren't interested in it. My parents don't really know anything about me; it's just not of interest to them. It's all basic weather talk at best. And whenever I tried to talk to them, I got shut down. They have their own problems, their own things to worry about, I guess.
lynx23 2y ago
Double life, how ironic. I have some experience with being isolated due to a disability, albeit mine is by far not as far-reaching, but still. What some call a "double life" is the primary life to those which failed to find a true and meaningful connection to those around him, lets call it family. Sometimes, escaping from well-meaning but unable to adapt people around you is the only thing you can do to try and achieve some meaning in life. Ironic that they end up calling it a double life, failing to understand that what they provided simply wasn't enough, and also couldn't be enough. Lets put it that way. y life only started when I moved out of my parents home. Be it physically or virtual, thats likely true for many who are being tormented by an isolationist life.
gavmor 2y ago
Shades of Otherland's Orlando Gardiner. In the 1995 novel by Tad Williams, Gardiner is afflicted with a progressive genetic disorder which precludes his having much of a life offline--at least, he finds it easier to make friends online--and spends his days playing Middle Country (WoW was released 3 years after the last volume of Wiliams' quartet was published) where he is a strapping swashbuckler. I think it's phenomenal that Mats was able to touch so many lives so deeply.
- KennyBlanken 2y ago
  Scalzi's Lock In explores what might develop when you have an entire segment of the population that become complete paraplegics ("Hadens") from a pandemic. Real life services, virtual worlds, telepresence robots, and people who get brain mods to be able to serve as hosts for Hadens that want a real physical experience.
ruthmarx 2y ago
This kind of story is heartbreaking, and something I think about a lot. My parents don't know me very well, a lot of people don't, and I've always been a very private person. I've also been through a lot, written a lot about that and other things, but it's all across various profiles. I know if something happened to me my parents would probably like to read it to have a better idea of who I was, to maybe be able to feel closer to me or hear more of my voice. But this data is all across various profiles that would just be forgotten. I want to make something that allows for importing data from all these various sources, presenting an interface to parse and peruse it, and making it available only after someone has died to certain named people. Something like this will need to be standardized at some point as so much of our lives becomes increasingly digital.
- 1R053 2y ago
  I do empathise with your desire a lot ...but then such a service gets monetised by advertising, financed with VC money and guess what happens next...
  - fragmede 2y ago
    it must suck to be that cynical
    - CatWChainsaw 2y ago
      *unable/unwilling to self-deceive ;)
- bradfitz 2y ago
  That was what I started to do with Perkeep.org but never find enough time to work on it. At one point I had it importing from all my social media sources but of course everybody broke their APIs. Sigh.
- xyst 2y ago
  > But this data is all across various profiles that would just be forgotten. Google/Big Data/Advertisers/NSA/MI6 will never forget though ;) It’s scary to think faceless corporations may often know more about yourself than you, your family, and even closest friends. Reminds me of a story of Target sending adverts for baby items to a teenager which accurately predicated she was pregnant before she was even aware [1] It’s all (unencrypted comms, texts, social media, osint, …) archived in massive data centers just waiting to be analyzed. [1] https://www.forbes.com/sites/federicoguerrini/2024/08/30/consumer-protection-in-gaming-european-initiative-targets-video-game-publishers/ https://www.forbes.com/sites/federicoguerrini/2024/08/30/con...?
tombert 2y ago
Huh, this is basically the plot of a My Name is Earl episode: https://mynameisearl.fandom.com/wiki/Kept_a_Guy_Locked_in_a_Truck https://mynameisearl.fandom.com/wiki/Kept_a_Guy_Locked_in_a_...
caseyy 2y ago
If you hit Reject and Pay on the cookie notice, it’s a £7 monthly recurring charge that does not subscribe you to The Times, and does not turn off ads, nor allows you to browse without tracking. It simply turns off and personalisation and promises The Times (but no mention of their partners) won’t use your personal information for ads. And apparently this stands only for the website, not the apps, for which cookies are “managed separately”. £84 a year for one website to still advertise to you and still track you in their apps, and not even give you paid content. Even if you choose to accept all cookies and tracking, the next modal asks to pay for digital access to read the article. Meaning — you might need two recurring subscriptions to read the article, it seems. This level of grift — I couldn’t have even imagined. What a trash-tier business practice.
- navigate8310 2y ago
  https://github.com/bpc-clone/bypass-paywalls-chrome-clean https://github.com/bpc-clone/bypass-paywalls-chrome-clean
bbow-resp 2y ago
Hey: it's this story again. As someone who's around my 30s now with Duchenne Muscular Dystrophy and who has friends with the condition, I've always found it a bit too bleak about the quality of our lives (probably for drama's sake). Yes, I need a wheelchair and full time care attendants, but also: * I went to university and had a great time there * I had a pretty normal social life growing up, and made some life-long real life friends in college who I still visit regularly. * I talk to women and have had romantic relationships. * I've had and continue to have what I consider a pretty successful career in software. * While I like video games and played a lot of them in high school, I'd say I prefer going out and having interactions with friends more, however challenging it can be logistically. I know DMD severity varies between patients, but I don't want this article to discourage people with DMD or with children that have DMD. It can be tough, but I think that modern treatments allow us to lead fairly rich lives outside of Warcraft.
- jpm_sd 2y ago
  I didn't find it bleak at all. Brought tears to my eyes though. I'm glad your condition is less severe, or better managed, than his. Keep living your best life!
  - larodi 2y ago
    I could not read the whole piece, I cried. this all is too human for humans who forgot to be.
- mrmetanoia 2y ago
  "...allow us to lead fairly rich lives outside of Warcraft." I didn't get the impression from the article it was otherwise, just that this young man found what he was looking for inside a game and its community. The article felt positive, your comment feels defensive and judgemental.
  - card_zero 2y ago
    Well, his parents supposed otherwise. > Robert delivers a eulogy for his son in which he speaks of the sorrow he and Trude had felt, believing that his short life had been one void of meaning, friendship, love and belonging. Edit: I wasn't trying to attack WoW, so here's the next line too: > But, he continues, over the past few days they have come to understand that this was not the case, and that he had experienced all these things.
ETH_start 2y ago
Didn't he die at age 25? Am I missing something here?
- djohnston 2y ago
  You’re missing the point of the story mate. Don’t let the arithmetic distract you.
- PUSH_AX 2y ago
  His parents were essentially told 20 was his life expectancy.
aeturnum 2y ago
I also had a wholesome and fulfilling world of warcraft experience growing up. I'm fully abled and am not into how people only seem to recognize the fullness of relationships in videogames when that relationship is happening to a person you have a prejudice about. I am glad that he had access to this and I am glad that people are recognizing this experiences' value. I would love to see more people recognize the possibility of having healthy relationships in online spaces. I also am worried this is going to be seen as another instance of people with disabilities (or disabled people if you please) being infantilized in a way that insults this young man, other people with disabilities, and also people who have good experiences growing up in online communities. Edit: I just kind of tried to summarize my feelings here - which is not that interesting. Overall this is great! I too had a similar experience and recognize a fellow traveler. Also, boy, am I worried "the discourse" will go in a disappointing direction around this but I hope it won't!
gslin 2y ago
https://archive.ph/UNebH https://archive.ph/UNebH
- jmclnx 2y ago
  https://web.archive.org/web/20241005124635/https://www.thetimes.com/life-style/parenting/article/we-only-learnt-of-our-sons-secret-online-life-after-he-died-at-20-rj3bqfnqn https://web.archive.org/web/20241005124635/https://www.theti...
EricE 2y ago
Whenever I see stories like this (and they are frequent, including two uncles in my family) I think about the people who are convinced they are being benevolent in advocating for the abortion babies like this out of "compassion".
- viraptor 2y ago
  Stories like this are written about people successful in some way despite their circumstances. You don't get to read too often about many others who are not able to lead a good life and end up requiring more from the parents/carers than those are able to offer. You'll hear about the mostly happy family, not about the local woman whose marriage didn't survive the effort, with a kid completely dependent on her, who decided that murder-suicide for both of them is a better outcome than the struggle and possibility of being left with local community care.
  - deleted 2y ago
    [deleted]
kayo_20211030 2y ago
This story was terribly sad, and wonderfully hopeful. Online gaming communities, like WoW etc. (but maybe less like tik-tok) are true symmetric, give-and-take, communities with honest, beneficial, and sometime fraught human relationships; and whose social value is often dreadfully underestimated by some people who are unfamiliar with them.
dang 2y ago
Related. Others? 'Ibelin' Review: A Shattering Documentary About a Gamer's Life - https://news.ycombinator.com/item?id=39073807 https://news.ycombinator.com/item?id=39073807 - Jan 2024 (2 comments) My disabled son – ‘the nobleman, the philanderer, the detective’ - https://news.ycombinator.com/item?id=19104044 https://news.ycombinator.com/item?id=19104044 - Feb 2019 (69 comments) Only when Mats was dead did his parents understand the value of his game - https://news.ycombinator.com/item?id=19011328 https://news.ycombinator.com/item?id=19011328 - Jan 2019 (25 comments - note the top comment by someone who played with him)
- MatthiasPortzel 2y ago
  Why the title change?
  - dang 2y ago
    https://news.ycombinator.com/item?id=41753096 https://news.ycombinator.com/item?id=41753096
binary132 2y ago
this article caused me to experience judgmental feelings towards the poor lad’s father.
senderista 2y ago
I have a similar story about my sister, except that her online life wasn't a surprise after her death. For the last decade or so of her life she was confined to her bed, with first 12-hour and later 24-hour nursing care (after my mom became unable to sit up all night with her). Through Facebook and other social media she was able to communicate with literally hundreds of people with chronic illnesses and make them feel seen and loved. After we announced her death on her Facebook page it just blew up with hundreds of tributes. Her life was so physically limited compared to mine, but I can't help but feel it was far more meaningful. And I can't be shallowly dismissive of the good that Facebook and similar platforms have done for people like her, as much as I loathe their corrosive effects on our political discourse.

295 points by _tk_ 2y ago

Not what one would expect from the title, but a good read. wayback machine: https://web.archive.org/web/20241005124635/https://www.thetimes.com/life-style/parenting/article/we-only-learnt-of-our-sons-secret-online-life-after-he-died-at-20-rj3bqfnqn https://web.archive.org/web/20241005124635/https://www.theti...

sonofhans 2y ago

It reminds me of this story from a decade ago — https://kottke.org/14/05/the-ghost-in-the-machine https://kottke.org/14/05/the-ghost-in-the-machine Sometimes I feel like digital prosthetic memories are an awful crutch; sometimes I’m in awe of the genuine emotion they can inspire.

bdjsiqoocwk 2y ago

If this was such a big part of their son's life, how come they weren't aware? I'm asking this more to wonder out loud whether I'm in need of some introspection than to blame them.

magicmicah85 2y ago
I think from their perspective, all they saw was a video game, they didn’t know that it involved intricate role-playing and community.
- chx 2y ago
  That's the thing. WoW came out in 2004. What came before in a similar genre? Maybe Diablo II in 2000-2001. And while the Guild Halls were planned for D2 they never actually shipped. There were forums etc but nothing like the scale and possibility of WoW. There were no patterns for this before.
  - temp0826 2y ago
    Ultima Online, Everquest, Lineage...Blizzard definitely had a leg up with their brand recognition which boosted the genre to new levels, but it really wasn't a new idea.
    - chx 2y ago
      In 1997 UO had ~100 000 subscribers, in 2004 WoW had over a million. It's nowhere near the same. This is a very common misconception, really. Yes, there are no new ideas. The fact that LG Prada sported a capacitive touch is only relevant for mansplaining. rewind.ai predates Microsoft Recall but who cares, really? The chances of an abusive spouse discovering it and using it to oppress further a woman is nil while Recall will be right in front of their eyes. AirTag was not the first stalking device but for sure it was the first to reach mass enough adaptation to get multiple women murdered. The list is endless.
- Tor3 2y ago
  That's exactly what his father said. They had thought it was just playing a game (he used the word 'competition' when he spoke about it). EditAdd: And it's not strange. First, Mats had his own apartment, it wasn't like he was playing where his parents were walking past all the time. And secondly, every time he logged on to WoW he would spend the first 30 minutes running. So if anyone watched him when he started playing the would simply see a figure on a monitor running on a road, and keep running, and that was all.
asyx 2y ago
I think to parents at least to millennials, the idea of an MMORPG is just even more foreign than it is to parents to gen z or gen alpha. WoW was maybe not the first big title but it was the first that really put the genre into the mainstream. A genre inspired by the novelty of virtual worlds. I think to them, their son just played a dumb video game and in the best case they weren’t necessarily supportive but also not against it. Just a weird thing he did that they didn’t understand. How could they possible imagine that he spent his time in that world with people from all around the real world talking about the game and their life alike for hours on end. Being there for those people when life hit them and being able to expect the same in return like what you’d hope friends in the real world would do. To my mother, all people online that talked to me when I was a teenager would be creepy old people trying to groom me. But the people I’ve met in those games are now my best friends. If I were religious, one of them would have been the godfather to my child.
- bear141 2y ago
  Despite the obvious name, I find no reason not to engage in the custom of appointing a god parent despite the lack of belief in any of the gods.
lynx23 2y ago
You're pretty much onto the crux of the situation. Lets put it mildly, its a rare case that the parents of a disabled child/person truly understand their needs/desires/wishes/dreams. Its much more common that the barrier that appears between disabled and non-disabled people will persist, and will not get broken down. Most disabled people I know (and I am disabled myself) basically had to run away from home to get some degree of freedom. Its a rather sad thing, which involves a lot of things, mostly the trauma of the parents which they likely never overcome. And the desire of the disabled peerson to gain some independence. Which is usually not compatible with family.
- bdjsiqoocwk 2y ago
  That post really made me sad. I'm not disabled and neither is anyone in my family. But my relationship with my parents was always bad. I never spent any time thinking about the lives of disabled people because they've always been such an alien reality to me, but I think if you'd asked me think about it I wouldve had the vague intuition that disabled at least had good relationships with their parents because how dependent/how much time they were forced to spend with them. Your comment about the trauma that parents never overcome added a really dark twist for me to the concept of "bad relationship with your parents". Anyway thanks for sharing
- StefanBatory 2y ago
  And longing for a family that you could have had... I find it that people who grew up with attentive parents just don't understand how one can not trust their parents, or what it is like to have to hide everything from them.
CM30 2y ago
Because most people aren't that aware of their friends and relatives' hobbies and interests, nor the specifics about how they work. So if that person doesn't speak openly about them (and let's face it, most people won't simply because the other person won't find the topic that interesting), then they'll only know the most basic aspects. Like, someone I'm friends with regularly goes to the climbing gym. I vaguely remember being told which gym it was at one point, and I know the sport they partake in, but that's basically it. I don't know if they've got any friends or acquaintances they hang out with each time they go, if they go to events related to it, whether they discuss it online, etc. And the same goes with what most people (friends and parents included) know about me and my own hobbies and interests too. They might know some of the things I'm interested in and some of the people I'm friends with, but it's certainly not all of them. In general, people tend not to know everything (or often, even that much in general) about their friends and loved ones. They know what they're willing to talk about/have bothered discussing, and that's usually it.
- jumping_frog 2y ago
  Would you say "Our lives have been digitally unbundled" be accurate characterization?
  - CM30 2y ago
    Quite possibly. The internet's existence means it's a lot easier to have hobbies and interests and friendships that your real life friends and family don't know about, that's for sure.
stego-tech 2y ago
It’s because, for those of us who exist in these realms - be it WoW, EQ, furries, whatever - we get very, very good at being discrete. There’s that initial excitement when we desperately want to share our joy with our parents or siblings, but all too often that joy is dashed by popular misconceptions, media sensationalism, and flat-out fabrications about “strangers online” and the like. I found solace in online communities as an introvert traumatized by repeated cross-country moves growing up, and when I tried sharing my online friends with my parents, they deleted my social messenger accounts at the time. So that’s why this stuff often pops up as a “surprise” to those left behind, or comes across as a “double-life”. We often tried to open up and share ourselves, but were shut down for the unorthodox ways we found happiness or identity, and realized the best approach was hard segregation of the two. Heck, it’s why I still don’t tie my meatspace and authentic selves together. The meatspace me is this reserved but honest engineer who just wants to make good systems that customers like using and be left alone, but the online dinosaur is…_starkly different_, more open and authentic, exuding more confidence and more empathy as well. We’re unique creatures who adapt to our surroundings, but make no mistake: we always want to share our found happiness with others. Unfortunately, experience often dictates that sharing ourselves so completely is more likely than not to end up causing us great harm, and so we just don’t do it.
- bdjsiqoocwk 2y ago
  [flagged]
  - StefanBatory 2y ago
    Haha, that's why you will be the last person to know if that ever happens.
  - stego-tech 2y ago
    Eh, depends on the “shade”. If they’re the drama type, then yeah, might be time to have a chat about how to do research, tell fact from fiction, what propaganda looks like, etc, lest they become a tabloid-sucker. If it’s the STEM type who just likes the art and community while also running infrastructure, doing vaccine research, or other Good Work (TM)…just be glad they’re using their decently sized paychecks to help out others and build a better community for everyone. Fandom - furry or otherwise - isn’t inherently good or bad, but there are good and bad elements in every fandom.
Tor3 2y ago
They were aware, but hadn't got the correct understanding. They had thought all the time that WoW was a competition, beating the machine.. like the video games they grew up with (and, er, I did), i.e. car racing games and the like. In other words, they weren't aware of the social aspect of the thing.

goda90 2y ago

He was born in 1989, died in 2014. Not sure how he died at 20?

seattle_spring 2y ago
The title is incorrect. The age of 20 is significant because that's the maximum age the parents were told that he would live > He may, his parents are told, live to be 20 And later... > The years pass. Mats’ 20th birthday comes and goes The story of his death follows shortly after that line. I'm guessing the title author (usually not the same person as the story author) misunderstood that line, and it wasn't caught during proofreading

ko_pivot 2y ago

I think there is a fundamental difference between MMOGs and TikTok-style social media. I suspect the human brain has a relatively healthy reaction to creatively connecting with other humans via virtual worlds but a comparatively poor reaction to algorithmic feeds.

spencerchubb 2y ago
I don't even consider tiktok as social media. It's more for entertainment like netflix. There is not much socializing that happens on tiktok
- evanmoran 2y ago
  Netflix is curated and not user created, so I’d say TikTok is more like YouTube. Then of course everyone copied the format including YouTube, IG, X, and even LinkedIn (saw this one just today). But even with that slight naming difference, I couldn’t agree more with you that MMOs are rich cultural hubs compared to endless short videos. It’s a low bar :)
  - jumping_frog 2y ago
    Even Spotify. Just saw their short audio clips feed of interesting sections of songs, tracks.
- whyenot 2y ago
  The fact that you may not have experienced it doesn't mean that it doesn't exist :) There is actually a lot of socializing on TikTok, for example in the "BookTok" community. The format is a little different than on a message board, or IG, but it is there.
  - bloqs 2y ago
    Perhaps at risk of reading too far into it, but it seems the implication is that while Tiktok is called "social media", it seems to be the exception that socialising occurs. World of Warcraft, and many similar games of that era would often be canned as anti-social, but fundamentally facilitated the pursuit of common goals and deep bonds for those otherwise isolated or barred from such engagement in other avenues.

magicmicah85 2y ago

As much as wow was a time sink waste of time for me, I love that it provided community to those who needed it and could thrive within it. Putting this documentary on my to watch list.

pram 2y ago
I actually met my wife on WoW, doing progression raiding through vanilla to WotLK. Spending 8+ hours a day together for years forms pretty close bonds ;D
- binary132 2y ago
  same. it happens!
- davedx 2y ago
  Same here.
deadlypointer 2y ago
I spent way too much time playing it and I also consider it as wasted time. I guess it's because we had an option. He didn't really have ...

Novosell 2y ago

It is a sorta nice story, although I imagine us who actively do participate in gaming communities wont look at it with as much wonder as the writer and the mans parents do, but I'm sort of disturbed by the fact that their son basically did nothing else than play WoW for many years yet they never cared to bond with him over it? Maybe they did but he wasn't interested in sharing? Was he mute? It's not mentioned but it's very possible given his disease. Even so, they could've gotten something of an understanding of it surely? Their ideas about it and the reality of it were not even close. It can be tiresome to take care of sick family members, I relate with that, but they still come off as negligent in this article. Feel like I need more info.

magicmicah85 2y ago
I have three kids, and even when I ask what they’re playing they just give me simple answers. “Who you playing with?” Friends. “What game you playing?” A game. Imagine trying to explain an mmo and role playing to people who don’t play video games. Probably not an easy conversation to explain you’re Ibelin, the noble warrior of Azeroth.
- deleted 2y ago
  [deleted]
itronitron 2y ago
Consider that they were providing the environment and resources that he needed in order to have a positive impact on other people's lives. I don't think you should perceive it as negligence if they didn't know about it. Mans probably wanted to keep the worlds separate, as his parents knew everything about his condition and he didn't want to reveal that to the online community (until he started blogging.)
StefanBatory 2y ago
Some parents aren't interested in it. My parents don't really know anything about me; it's just not of interest to them. It's all basic weather talk at best. And whenever I tried to talk to them, I got shut down. They have their own problems, their own things to worry about, I guess.

lynx23 2y ago

Double life, how ironic. I have some experience with being isolated due to a disability, albeit mine is by far not as far-reaching, but still. What some call a "double life" is the primary life to those which failed to find a true and meaningful connection to those around him, lets call it family. Sometimes, escaping from well-meaning but unable to adapt people around you is the only thing you can do to try and achieve some meaning in life. Ironic that they end up calling it a double life, failing to understand that what they provided simply wasn't enough, and also couldn't be enough. Lets put it that way. y life only started when I moved out of my parents home. Be it physically or virtual, thats likely true for many who are being tormented by an isolationist life.

gavmor 2y ago

Shades of Otherland's Orlando Gardiner. In the 1995 novel by Tad Williams, Gardiner is afflicted with a progressive genetic disorder which precludes his having much of a life offline--at least, he finds it easier to make friends online--and spends his days playing Middle Country (WoW was released 3 years after the last volume of Wiliams' quartet was published) where he is a strapping swashbuckler. I think it's phenomenal that Mats was able to touch so many lives so deeply.

KennyBlanken 2y ago
Scalzi's Lock In explores what might develop when you have an entire segment of the population that become complete paraplegics ("Hadens") from a pandemic. Real life services, virtual worlds, telepresence robots, and people who get brain mods to be able to serve as hosts for Hadens that want a real physical experience.

ruthmarx 2y ago

This kind of story is heartbreaking, and something I think about a lot. My parents don't know me very well, a lot of people don't, and I've always been a very private person. I've also been through a lot, written a lot about that and other things, but it's all across various profiles. I know if something happened to me my parents would probably like to read it to have a better idea of who I was, to maybe be able to feel closer to me or hear more of my voice. But this data is all across various profiles that would just be forgotten. I want to make something that allows for importing data from all these various sources, presenting an interface to parse and peruse it, and making it available only after someone has died to certain named people. Something like this will need to be standardized at some point as so much of our lives becomes increasingly digital.

1R053 2y ago
I do empathise with your desire a lot ...but then such a service gets monetised by advertising, financed with VC money and guess what happens next...
- fragmede 2y ago
  it must suck to be that cynical
  - CatWChainsaw 2y ago
    *unable/unwilling to self-deceive ;)
bradfitz 2y ago
That was what I started to do with Perkeep.org but never find enough time to work on it. At one point I had it importing from all my social media sources but of course everybody broke their APIs. Sigh.
xyst 2y ago
> But this data is all across various profiles that would just be forgotten. Google/Big Data/Advertisers/NSA/MI6 will never forget though ;) It’s scary to think faceless corporations may often know more about yourself than you, your family, and even closest friends. Reminds me of a story of Target sending adverts for baby items to a teenager which accurately predicated she was pregnant before she was even aware [1] It’s all (unencrypted comms, texts, social media, osint, …) archived in massive data centers just waiting to be analyzed. [1] https://www.forbes.com/sites/federicoguerrini/2024/08/30/consumer-protection-in-gaming-european-initiative-targets-video-game-publishers/ https://www.forbes.com/sites/federicoguerrini/2024/08/30/con...?

tombert 2y ago

Huh, this is basically the plot of a My Name is Earl episode: https://mynameisearl.fandom.com/wiki/Kept_a_Guy_Locked_in_a_Truck https://mynameisearl.fandom.com/wiki/Kept_a_Guy_Locked_in_a_...

caseyy 2y ago

If you hit Reject and Pay on the cookie notice, it’s a £7 monthly recurring charge that does not subscribe you to The Times, and does not turn off ads, nor allows you to browse without tracking. It simply turns off and personalisation and promises The Times (but no mention of their partners) won’t use your personal information for ads. And apparently this stands only for the website, not the apps, for which cookies are “managed separately”. £84 a year for one website to still advertise to you and still track you in their apps, and not even give you paid content. Even if you choose to accept all cookies and tracking, the next modal asks to pay for digital access to read the article. Meaning — you might need two recurring subscriptions to read the article, it seems. This level of grift — I couldn’t have even imagined. What a trash-tier business practice.

navigate8310 2y ago
https://github.com/bpc-clone/bypass-paywalls-chrome-clean https://github.com/bpc-clone/bypass-paywalls-chrome-clean

bbow-resp 2y ago

Hey: it's this story again. As someone who's around my 30s now with Duchenne Muscular Dystrophy and who has friends with the condition, I've always found it a bit too bleak about the quality of our lives (probably for drama's sake). Yes, I need a wheelchair and full time care attendants, but also: * I went to university and had a great time there * I had a pretty normal social life growing up, and made some life-long real life friends in college who I still visit regularly. * I talk to women and have had romantic relationships. * I've had and continue to have what I consider a pretty successful career in software. * While I like video games and played a lot of them in high school, I'd say I prefer going out and having interactions with friends more, however challenging it can be logistically. I know DMD severity varies between patients, but I don't want this article to discourage people with DMD or with children that have DMD. It can be tough, but I think that modern treatments allow us to lead fairly rich lives outside of Warcraft.

jpm_sd 2y ago
I didn't find it bleak at all. Brought tears to my eyes though. I'm glad your condition is less severe, or better managed, than his. Keep living your best life!
- larodi 2y ago
  I could not read the whole piece, I cried. this all is too human for humans who forgot to be.
mrmetanoia 2y ago
"...allow us to lead fairly rich lives outside of Warcraft." I didn't get the impression from the article it was otherwise, just that this young man found what he was looking for inside a game and its community. The article felt positive, your comment feels defensive and judgemental.
- card_zero 2y ago
  Well, his parents supposed otherwise. > Robert delivers a eulogy for his son in which he speaks of the sorrow he and Trude had felt, believing that his short life had been one void of meaning, friendship, love and belonging. Edit: I wasn't trying to attack WoW, so here's the next line too: > But, he continues, over the past few days they have come to understand that this was not the case, and that he had experienced all these things.

ETH_start 2y ago

Didn't he die at age 25? Am I missing something here?

djohnston 2y ago
You’re missing the point of the story mate. Don’t let the arithmetic distract you.
PUSH_AX 2y ago
His parents were essentially told 20 was his life expectancy.

aeturnum 2y ago

I also had a wholesome and fulfilling world of warcraft experience growing up. I'm fully abled and am not into how people only seem to recognize the fullness of relationships in videogames when that relationship is happening to a person you have a prejudice about. I am glad that he had access to this and I am glad that people are recognizing this experiences' value. I would love to see more people recognize the possibility of having healthy relationships in online spaces. I also am worried this is going to be seen as another instance of people with disabilities (or disabled people if you please) being infantilized in a way that insults this young man, other people with disabilities, and also people who have good experiences growing up in online communities. Edit: I just kind of tried to summarize my feelings here - which is not that interesting. Overall this is great! I too had a similar experience and recognize a fellow traveler. Also, boy, am I worried "the discourse" will go in a disappointing direction around this but I hope it won't!

gslin 2y ago

https://archive.ph/UNebH https://archive.ph/UNebH

jmclnx 2y ago
https://web.archive.org/web/20241005124635/https://www.thetimes.com/life-style/parenting/article/we-only-learnt-of-our-sons-secret-online-life-after-he-died-at-20-rj3bqfnqn https://web.archive.org/web/20241005124635/https://www.theti...

EricE 2y ago

Whenever I see stories like this (and they are frequent, including two uncles in my family) I think about the people who are convinced they are being benevolent in advocating for the abortion babies like this out of "compassion".

viraptor 2y ago
Stories like this are written about people successful in some way despite their circumstances. You don't get to read too often about many others who are not able to lead a good life and end up requiring more from the parents/carers than those are able to offer. You'll hear about the mostly happy family, not about the local woman whose marriage didn't survive the effort, with a kid completely dependent on her, who decided that murder-suicide for both of them is a better outcome than the struggle and possibility of being left with local community care.
- deleted 2y ago
  [deleted]

kayo_20211030 2y ago

This story was terribly sad, and wonderfully hopeful. Online gaming communities, like WoW etc. (but maybe less like tik-tok) are true symmetric, give-and-take, communities with honest, beneficial, and sometime fraught human relationships; and whose social value is often dreadfully underestimated by some people who are unfamiliar with them.

dang 2y ago

Related. Others? 'Ibelin' Review: A Shattering Documentary About a Gamer's Life - https://news.ycombinator.com/item?id=39073807 https://news.ycombinator.com/item?id=39073807 - Jan 2024 (2 comments) My disabled son – ‘the nobleman, the philanderer, the detective’ - https://news.ycombinator.com/item?id=19104044 https://news.ycombinator.com/item?id=19104044 - Feb 2019 (69 comments) Only when Mats was dead did his parents understand the value of his game - https://news.ycombinator.com/item?id=19011328 https://news.ycombinator.com/item?id=19011328 - Jan 2019 (25 comments - note the top comment by someone who played with him)

MatthiasPortzel 2y ago
Why the title change?
- dang 2y ago
  https://news.ycombinator.com/item?id=41753096 https://news.ycombinator.com/item?id=41753096

binary132 2y ago

this article caused me to experience judgmental feelings towards the poor lad’s father.

senderista 2y ago

I have a similar story about my sister, except that her online life wasn't a surprise after her death. For the last decade or so of her life she was confined to her bed, with first 12-hour and later 24-hour nursing care (after my mom became unable to sit up all night with her). Through Facebook and other social media she was able to communicate with literally hundreds of people with chronic illnesses and make them feel seen and loved. After we announced her death on her Facebook page it just blew up with hundreds of tributes. Her life was so physically limited compared to mine, but I can't help but feel it was far more meaningful. And I can't be shallowly dismissive of the good that Facebook and similar platforms have done for people like her, as much as I loathe their corrosive effects on our political discourse.