https://archive.ph/UNebH

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.

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.

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.

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.

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.

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)

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.

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.

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

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!

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.

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.

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.

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

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".