The Remarkable Life of Ibelin
thetimes.com
thetimes.com
* 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.
I'm glad your condition is less severe, or better managed, than his. Keep living your best life!
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.
> 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.
Nobody said it was.
I recommend watching the documentary, which contains private video recordings of that eulogy.
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.
wayback machine:
https://web.archive.org/web/20241005124635/https://www.theti...
I think it's phenomenal that Mats was able to touch so many lives so deeply.
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.
...but then such a service gets monetised by advertising, financed with VC money and guess what happens next...
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/con...?
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.
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.
Here is a gift link a NYTimes article with more details: https://www.nytimes.com/2012/02/19/magazine/shopping-habits....
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.
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.
That's not necessarily at all. I could build a rough version in a week. It shouldn't take anyone much effort to imagine that there are all types of situations and broken relationships that could take significantly longer to repair.
> Are you neuroatypical maybe? Maybe it's just not in you to share like that (it's not in me).
This really has nothing to do with being neurotypical or neurodiverse. There might be some generalizations and correlations there, but really it's just about personality and lived experiences and situations.
'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)
Sometimes I feel like digital prosthetic memories are an awful crutch; sometimes I’m in awe of the genuine emotion they can inspire.
Social media is people being alone, together
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.
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.
> 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
£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.
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!
I'm asking this more to wonder out loud whether I'm in need of some introspection than to blame them.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.)
to engage with parents it helps to find something they are interested in.
this point is something that is both true and something that hurts me, ngl. because to a point it's like, why should I do that while it will not work in the opposite direction. while my parents will not do that for me.
I mean, I agree with you, just... had to say that.
i am saying this because people often feel regret for not interacting with their family more. and if someone has that feeling then the only way to fix it is to engage, regardless of what the other side is doing.
that said, when i went through a difficult time i tried talking to my dad about it, and when he came back complaining about some other issue i decided that i didn't need more arguing and stopped talking to him. not that i would refuse talking, but if all i get is complaints then it's not worth it.
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.