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!
I could not read the whole piece, I cried. this all is too human for humans who forgot to be.
"...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.
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.
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.
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.
OK, WoW is great and rich and fulfilling, but also, DMD is not necessarily a prison sentence. I think that covers all the bases?
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.
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.
> DMD is not necessarily a prison sentence.
Nobody said it was.
> 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...?
Target did not figure out a teen was pregnant before she did. She knew she was pregnant, which led to changes in her purchasing habits. Target detected that and sent her promotions which disclosed her father who had need been informed.
Here is a gift link a NYTimes article with more details: https://www.nytimes.com/2012/02/19/magazine/shopping-habits....
i knew the target story but not the motivation about habit forming behind it. very insightful article. thanks.
> 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.
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)
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.
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.
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.
I appreciate your comment very much, thank you.
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.
What's the trigger for sending the email?
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.
> 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?
Sure, but sometimes death happens before people repair relationships to a point they can really do that.
It'll be less effort than building the tool you're describing. Are you neuroatypical maybe? Maybe it's just not in you to share like that (it's not in me).
> It'll be less effort than building the tool you're describing.
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.
Seems like you have it all figured out. Good luck.
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...
it must suck to be that cynical
*unable/unwilling to self-deceive ;)
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
Same here.
same. it happens!
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.
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?
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!