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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.
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!
"...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.
> 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.
Not what one would expect from the title, but a good read.
wayback machine:
https://web.archive.org/web/20241005124635/https://www.theti...
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.
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.
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.
> 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/con...?
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.
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.
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.
> 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.
crazy idea, but perhaps you should find some way to let your parents see who you are while you're alive?
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.
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...
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)
Why the title change?
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.
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
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 ...
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
He was born in 1989, died in 2014. Not sure how he died at 20?
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
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.
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!
Huh, this is basically the plot of a My Name is Earl episode: https://mynameisearl.fandom.com/wiki/Kept_a_Guy_Locked_in_a_...
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.
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.
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.
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.
I think from their perspective, all they saw was a video game, they didn’t know that it involved intricate role-playing and community.
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.
Didn't he die at age 25? Am I missing something here?
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.
this article caused me to experience judgmental feelings towards the poor lad’s father.
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".