[HN Gopher] The Remarkable Life of Ibelin
       ___________________________________________________________________
        
       The Remarkable Life of Ibelin
        
       Author : _tk_
       Score  : 222 points
       Date   : 2024-10-05 13:12 UTC (9 hours ago)
        
 (HTM) web link (www.thetimes.com)
 (TXT) w3m dump (www.thetimes.com)
        
       | jmclnx wrote:
       | Not what one would expect from the title, but a good read.
       | 
       | wayback machine:
       | 
       | https://web.archive.org/web/20241005124635/https://www.theti...
        
       | sonofhans wrote:
       | It reminds me of this story from a decade ago --
       | 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 wrote:
       | 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 wrote:
         | 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 wrote:
           | 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 wrote:
             | 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 wrote:
               | 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 wrote:
           | 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 wrote:
         | 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.
        
         | lynx23 wrote:
         | 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 wrote:
           | 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 wrote:
           | 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 wrote:
         | 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 wrote:
           | Would you say "Our lives have been digitally unbundled" be
           | accurate characterization?
        
             | CM30 wrote:
             | 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 wrote:
         | 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.
        
         | Tor3 wrote:
         | 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 wrote:
       | He was born in 1989, died in 2014. Not sure how he died at 20?
        
         | seattle_spring wrote:
         | 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 wrote:
       | 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 wrote:
         | 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 wrote:
           | 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 wrote:
             | Even Spotify. Just saw their short audio clips feed of
             | interesting sections of songs, tracks.
        
           | whyenot wrote:
           | 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 wrote:
             | 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.
        
               | lolinder wrote:
               | Yep. WoW was problematic because the mainstream had
               | already decided that the participants were problematic,
               | not because of any careful analysis of the game's merits.
               | TikTok is okay because the mainstream participates, not
               | because of a careful analysis of the platform's merits.
        
               | Lammy wrote:
               | MMOs are people being together, alone
               | 
               | Social media is people being alone, together
        
               | fragmede wrote:
               | Either way, you're doing socializing wrong. the only
               | acceptable way of socializing is how our parents did it.
               | In person, with lots of alcohol, and the only qualifier
               | was physical proximity.
        
           | wwilim wrote:
           | It's parasocial media if anything
        
         | Maken wrote:
         | People were active participants in MMORPGs. You get the
         | dopamine from achieving goals inside the game, and make
         | connections with other people as you collaborate to reach these
         | goals. Your relationship with other players is that of
         | coworkers (or cohabitants). On social media, most people are
         | just spectators, getting entertained by a small group of
         | creators whose relation with the rest of the community is that
         | of salesmen. Both systems are not designed in the same way.
        
           | lovethevoid wrote:
           | Not everyone who plays MMOs are active participants. Majority
           | of people in a guild are not active participants. A lot of
           | them won't even get on a shared voice call anymore to listen
           | to instructions during large group events.
           | 
           | A lot of MMOs also make active collaboration a complete pain,
           | whether it's introducing a messed up matchmaking system, not
           | dealing with bots, or adding new content that rewards you for
           | going at it alone. A lot of content now is quite literally
           | zero communication, not even a message in chat, just queue
           | for group, do content and leave.
           | 
           | And people will spend 5+ hours a day doing that. Farming
           | mindlessly as if it's a second job.
        
             | Aerroon wrote:
             | MMOs have always been like that though. The forced group
             | content is a later addition that not every game follows (eg
             | OSRS). But that doesn't really mean anything. You're still
             | sharing a virtual world. You see people pass you by, meet
             | random people etc. They are still active participants, they
             | just don't have to wait around for other people constantly
             | (because that's what forced group content always turns
             | into).
        
         | bitexploder wrote:
         | I play WoW still. It is very much a fun social group and hobby
         | as much as it is gaming. We nerd out over the lore and shared
         | experience in the game. It can be a very humanistic experience
         | if that is what you want. I have played this game for 15 years
         | now. Been with the same guild for 6 now.
        
         | corimaith wrote:
         | Tik-Tok (and Social Media) exists around content. It's
         | fundamentally social but has no inherent "meat" which is why it
         | go bad so easily, just like high school gossip and cliques.
         | It's hollow by itself, focused on reaction and judgment.
         | 
         | MMOs are that "meat". It's someplace you go for it's own sake,
         | and (hopefully) you meet people around that shared space as a
         | consequence rather than an intention. There will be debates,
         | trolls and conflicts of course, but I feel that the focus on
         | content is a shared axis that can keep things healthier on the
         | long term.
         | 
         | Well MMOs are dying, and a growing number of zoomers would
         | rather passively watch than actively play games, so I guess
         | gamers aren't immune to social media either, but I think in the
         | future we will return to this for answers that our present
         | can't answer.
        
           | Scaevolus wrote:
           | Even if MMOs are dying, fun collaborative gaming experiences
           | with friends (Minecraft, Roblox, Fortnite, ...) continue to
           | be very popular. It's often done with an external voice chat
           | program (Discord), meaning groups of friends can wander from
           | game to game having many different experiences than MMO
           | grinding.
        
           | Aerroon wrote:
           | I think MMOs are dying because the casual players play mobile
           | games instead, so MMOs end up catering more and more to the
           | hardcore crowd. This further turns casual players away.
        
         | tenzing wrote:
         | I still remember playing Anarchy Online in the mid 2000s and
         | teaming up for a few hours with a guy who'd broken his back a
         | month or so prior. He talked about how he got so much happiness
         | from the social interaction and a sense of helping people (he
         | was much higher level than me) within the game when he was
         | otherwise bedridden.
        
       | magicmicah85 wrote:
       | 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 wrote:
         | 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
        
       | Novosell wrote:
       | 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 wrote:
         | 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.
        
         | itronitron wrote:
         | 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 wrote:
         | 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 wrote:
       | 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 wrote:
       | 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 wrote:
         | 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 wrote:
       | 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.
        
         | bradfitz wrote:
         | 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.
        
         | 1R053 wrote:
         | 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 wrote:
           | it must suck to be that cynical
        
         | xyst wrote:
         | > 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/co
         | n...?
        
           | ben_w wrote:
           | > 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
           | 
           | Given that the big advertisers have collectively decided to
           | show me both dick pills and breast surgery and sanitary pads,
           | and lawyers specialising in renouncing a citizenship I never
           | had for tax purposes for people residing in a country I don't
           | live in, and several other equally stupid examples, I now
           | think such examples were as much over-selling as most of the
           | claims Musk has made about FSD.
           | 
           | Only time I've seen an advertisement for something relevant
           | to me, I already had it.
        
             | OmarShehata wrote:
             | You are likely an outlier. Ad targeting is very good at
             | predicting you IF you fall into a cohort that behaves the
             | same as each other. There's only way to find out the answer
             | to this anyway (export our ad targeting data, share it into
             | an anonymous open source pool, and analyze it)
        
               | ben_w wrote:
               | An outlier, yes.
               | 
               | Enough of an outlier they can't figure out my gender, and
               | get the country I live in wrong while showing me the ad?
               | That's a pretty dramatic failure.
        
               | indymike wrote:
               | Honestly I think ad targeting is good at just following
               | me around and showing me what I just looked at. It's been
               | a while since I've even clicked on an ad on purpose.
        
         | Sakos wrote:
         | I have my Google account configured to automatically send an
         | email with my most important usernames and passwords to close
         | family and friends with a brief description of the most
         | important sites I frequented with my main accounts. One of
         | those is the master password to my password manager. I prefer
         | that over some service that could be abandoned or close down
         | before (or even after) I die.
        
           | FrontierProject wrote:
           | What's the trigger for sending the email?
        
             | mattlondon wrote:
             | When you die. Google knows this, of course.
             | 
             | Kidding.
             | 
             | But seriously, there is just a timeout you can configure -
             | if you don't login for 3/6/12 months or whatever it
             | triggers. You can grant login access too.
        
         | evanmoran wrote:
         | Gathering all that together sounds worthwhile, but let me
         | encourage you to share more of yourself in small parts as well.
         | It takes practice to find the right amount to share (it's a
         | balance and depends on you and them), but taking an extra
         | moment after dinner to ask what they have been up to or share a
         | thought you've had recently can really help you connect better
         | to them while you're alive.
        
         | dleeftink wrote:
         | I just want to say you needn't feel pressured by relations that
         | could have been by leading a private life. Love and kinship
         | reach beyond knowing one's inner intricacies, and I feel the
         | big stories don't matter all that much when it comes to love
         | and family--it's the walks in the park or sharing a meal, the
         | happenstance moments that are fleeting. And there is still time
         | for many such moments, that remain difficult to capture in any
         | sort of digital legacy we try to impart.
        
           | ruthmarx wrote:
           | I appreciate your comment very much, thank you.
        
         | elric wrote:
         | > this data is all across various profiles that would just be
         | forgotten
         | 
         | I'm quite happy with this. I don't need my stuff correlated.
         | When friends and family die I miss them, but I don't go around
         | snooping through the things they may have left behind, that
         | feels disrespectful. If they wanted me to know about their WoW
         | accomplishments, they would have told me about them.
        
         | cpill wrote:
         | crazy idea, but perhaps you should find some way to let your
         | parents see who you are while you're alive?
        
           | ruthmarx wrote:
           | Sure, but sometimes death happens before people repair
           | relationships to a point they can really do that.
        
       | tombert wrote:
       | Huh, this is basically the plot of a My Name is Earl episode:
       | https://mynameisearl.fandom.com/wiki/Kept_a_Guy_Locked_in_a_...
        
       | caseyy wrote:
       | If you hit Reject and Pay on the cookie notice, it's a PS7
       | 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".
       | 
       | PS84 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 wrote:
         | https://github.com/bpc-clone/bypass-paywalls-chrome-clean
        
       | bbow-resp wrote:
       | 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 wrote:
         | 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!
        
         | mrmetanoia wrote:
         | "...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 wrote:
           | 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.
        
             | swores wrote:
             | His parents supposed otherwise before they knew about his
             | online stuff, you're making it sound like they still felt
             | that way about his online time too.
        
               | card_zero wrote:
               | OK, WoW is great and rich and fulfilling, but also, DMD
               | is not necessarily a prison sentence. I think that covers
               | all the bases?
        
               | thegginthesky wrote:
               | This is not the point. The point is you misquoted the
               | article without understanding the full context, and was
               | corrected. The parents weren't judgmental of an online
               | life, they were just unaware. Matter of fact, on the
               | documentary from one of the replies, it felt that they
               | were glad their son had good friends who really cared
               | about him.
        
               | card_zero wrote:
               | Jeez. I _understood_ the full context, I just _wasn 't
               | even talking about that,_ and neither was the grandparent
               | comment, I think. The "online life: wholesome or not?"
               | debate has crept into this comment chain by accident.
        
             | Tor3 wrote:
             | At that funeral where he held that speech, a group of Mats'
             | online friends were present, having arrived earlier and met
             | the father. The leader of Mats' group in WoW also talked at
             | the funeral. What Robert (the father) actually said was
             | that when Mats died they had that feeling and that worry.
             | But shortly after that the emails started coming (after
             | Robert had written about what had happened, on Mats' blog,
             | he did so because he actually thought there _were_ people
             | out there who cared.
             | 
             | I recommend watching the documentary, which contains
             | private video recordings of that eulogy.
        
         | dang wrote:
         | > probably for drama's sake
         | 
         | I've changed the title above to be that of the documentary
         | whose release has prompted the article. We use the same trick
         | with book reviews--i.e. since book review titles are often
         | sensationalized, we usually change the HN title to that of the
         | book.
         | 
         | p.s. Thanks for your comment! We don't get this kind of
         | perspective often.
        
       | ETH_start wrote:
       | Didn't he die at age 25? Am I missing something here?
        
         | djohnston wrote:
         | You're missing the point of the story mate. Don't let the
         | arithmetic distract you.
        
         | PUSH_AX wrote:
         | His parents were essentially told 20 was his life expectancy.
        
       | aeturnum wrote:
       | 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 wrote:
       | https://archive.ph/UNebH
        
         | jmclnx wrote:
         | https://web.archive.org/web/20241005124635/https://www.theti...
        
       | EricE wrote:
       | 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 wrote:
         | 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.
        
       | kayo_20211030 wrote:
       | 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 wrote:
       | Related. Others?
       | 
       |  _' Ibelin' Review: A Shattering Documentary About a Gamer's
       | Life_ - 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 - 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 - Jan
       | 2019 (25 comments - note the top comment by someone who played
       | with him)
        
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       (page generated 2024-10-05 23:00 UTC)