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July 6, 2019 9:18 AM Subscribe
How a video game community filled my nephew’s final days with joy A touching story of how a gaming community came together for a young player's final days
Damn onions
posted by kinnakeet at 10:10 AM on July 6, 2019 [3 favorites]
posted by kinnakeet at 10:10 AM on July 6, 2019 [3 favorites]
Anyone got a hanky handy?
posted by kathrynm at 10:16 AM on July 6, 2019 [1 favorite]
posted by kathrynm at 10:16 AM on July 6, 2019 [1 favorite]
Sometimes gaming gets it right. Sometimes.
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posted by Fizz at 12:06 PM on July 6, 2019 [2 favorites]
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posted by Fizz at 12:06 PM on July 6, 2019 [2 favorites]
Oh man. Amazing.
posted by SecretAgentSockpuppet at 12:50 PM on July 6, 2019
posted by SecretAgentSockpuppet at 12:50 PM on July 6, 2019
You know, I believe most game developers and players are our kind of people. That noisy minority of arseholes is not really representative.
posted by Segundus at 1:48 PM on July 6, 2019 [15 favorites]
posted by Segundus at 1:48 PM on July 6, 2019 [15 favorites]
This is beautiful!
Hey mods, could we get the link fixed to one that doesn't use AMP? This should work.
posted by Quackles at 3:36 PM on July 6, 2019 [2 favorites]
Hey mods, could we get the link fixed to one that doesn't use AMP? This should work.
posted by Quackles at 3:36 PM on July 6, 2019 [2 favorites]
Okay, maybe this is a "Am I the asshole" situation... but I couldn't get over the fact that they were lying to him about his condition. He was 15, that's certainly old enough to have opinions on how he wanted to spend his last days, things he wanted to say or write, people he wanted to see... and instead they told strangers about it and not him. Maybe they address this later on, but I'm at the point where they are bringing strangers to see him with presents and *still not telling him*.
posted by tavella at 4:38 PM on July 6, 2019 [6 favorites]
posted by tavella at 4:38 PM on July 6, 2019 [6 favorites]
@tavella, I can definitely empathize with that reaction. As a counterpoint, I would note that the fact he didn't come to any awareness on his own as an example of his functioning/executive reasoning level. I can definitely be swayed to the argument that someone in that state would be less happy knowing, rather than more.
It's definitely an individual thing, and I also would not be arguing if they went the other way in the exact same set of circumstances. Ultimately, I go with the idea that they took care of him for 15 years, so I defer to their judgment in whether it was the right thing.
posted by thoughtbox at 5:36 PM on July 6, 2019 [22 favorites]
It's definitely an individual thing, and I also would not be arguing if they went the other way in the exact same set of circumstances. Ultimately, I go with the idea that they took care of him for 15 years, so I defer to their judgment in whether it was the right thing.
posted by thoughtbox at 5:36 PM on July 6, 2019 [22 favorites]
This is sweet but the whole "we didn't tell him he was dying" thing was pretty messed up. Certainly I can't say if it was the right thing to do, I don't know this kid - I just feel like people at the end of their lives deserve honesty.
Also this doesn't prove gamers aren't scum, the need for heavy moderation of the online spaces where people were coordinating to do nice things is even obliquely referenced in this story. The community still has major problems to solve.
posted by signsofrain at 6:30 PM on July 6, 2019 [7 favorites]
Also this doesn't prove gamers aren't scum, the need for heavy moderation of the online spaces where people were coordinating to do nice things is even obliquely referenced in this story. The community still has major problems to solve.
posted by signsofrain at 6:30 PM on July 6, 2019 [7 favorites]
From what I've gathered, Elite Dangerous is a little like Eve Online except if the community was filled with nice people and not unrepentant assholes. They're all just trying to survive out in space, and co-operation makes things possible that otherwise wouldn't be: there's organised pirate squads and things but there's also, like, rescue squads, who retrieve players stuck without fuel, too far away to reach.
posted by Merus at 8:32 PM on July 6, 2019 [4 favorites]
posted by Merus at 8:32 PM on July 6, 2019 [4 favorites]
_As a counterpoint, I would note that the fact he didn't come to any awareness on his own as an example of his functioning/executive reasoning level._
Anthropologists have done work since the seventies on the “conspiracy of silence” that often surrounds the dying child. The original work (done by a woman who studied taboos) studied how hospitalized children became aware of the fact that they were dying. The children knew everything else about how the hospital worked; they knew that other children who had reached their stage of disease died; this was their entire world and they figured out its rules.
They also figured out its main rule, which is that they were not allowed to talk to anyone about their dying, because it upset their parents and the staff too much. They knew they were dying; the hospital staff knew; the parents knew; and everyone shut down conversation about it, as the ultimate taboo.
posted by Hypatia at 5:57 AM on July 7, 2019 [14 favorites]
Anthropologists have done work since the seventies on the “conspiracy of silence” that often surrounds the dying child. The original work (done by a woman who studied taboos) studied how hospitalized children became aware of the fact that they were dying. The children knew everything else about how the hospital worked; they knew that other children who had reached their stage of disease died; this was their entire world and they figured out its rules.
They also figured out its main rule, which is that they were not allowed to talk to anyone about their dying, because it upset their parents and the staff too much. They knew they were dying; the hospital staff knew; the parents knew; and everyone shut down conversation about it, as the ultimate taboo.
posted by Hypatia at 5:57 AM on July 7, 2019 [14 favorites]
Interesting then that he spent so much time playing a video game, an activity where you "die" all the time. On some level it seems like he was talking about it all the time.
posted by selfmedicating at 7:44 AM on July 7, 2019 [1 favorite]
posted by selfmedicating at 7:44 AM on July 7, 2019 [1 favorite]
o7 CMDR Michael Holyland
(I am really happy to see the "o7" salute make its way from EVE to other games, it always struck me as a bastion of respect & egalitarianism in a very unjust, uncaring world, both virtual or otherwise)
posted by JauntyFedora at 10:50 AM on July 7, 2019 [1 favorite]
(I am really happy to see the "o7" salute make its way from EVE to other games, it always struck me as a bastion of respect & egalitarianism in a very unjust, uncaring world, both virtual or otherwise)
posted by JauntyFedora at 10:50 AM on July 7, 2019 [1 favorite]
They also figured out its main rule, which is that they were not allowed to talk to anyone about their dying, because it upset their parents and the staff too much.
Yeah, that was my reaction to 'avoiding emotional distress': His or yours? It sure felt like it was all about arranging the end of his life in a way that was emotionally satisfying to the survivors to think back on, not about consulting him as to his wishes. And I've had enough friends with messed up lives from families that thought love and care was about controlling and limiting them that I don't quite automatically assume that because a family has taken care of a child that they will do what is best for them.
So I think the article is not for me.
posted by tavella at 8:27 AM on July 8, 2019
Yeah, that was my reaction to 'avoiding emotional distress': His or yours? It sure felt like it was all about arranging the end of his life in a way that was emotionally satisfying to the survivors to think back on, not about consulting him as to his wishes. And I've had enough friends with messed up lives from families that thought love and care was about controlling and limiting them that I don't quite automatically assume that because a family has taken care of a child that they will do what is best for them.
So I think the article is not for me.
posted by tavella at 8:27 AM on July 8, 2019
This didn't bug me so much.
One, because he was already living in a therapeutic and medicalized world.
Two, because the timing of his death was not guaranteed.
Three, because telling a teenager, "We don't know when, but you're definitely going to die soon, and at any moment" is about the cruelest sentence I can think of.
Four, because the end did indeed transpire quickly and under sedation.
Five, because goodbyes are for the living, and there's no real reason to put the kid through that ritual except for the feels of their survivors.
Six, because those close to him have the benefit of nuance about his autistic condition.
I think that's about it. Heck, in a way it sounds like a fine way to go, all things considered, to not know hardly at all.
posted by rhizome at 8:58 AM on July 8, 2019 [4 favorites]
One, because he was already living in a therapeutic and medicalized world.
Two, because the timing of his death was not guaranteed.
Three, because telling a teenager, "We don't know when, but you're definitely going to die soon, and at any moment" is about the cruelest sentence I can think of.
Four, because the end did indeed transpire quickly and under sedation.
Five, because goodbyes are for the living, and there's no real reason to put the kid through that ritual except for the feels of their survivors.
Six, because those close to him have the benefit of nuance about his autistic condition.
I think that's about it. Heck, in a way it sounds like a fine way to go, all things considered, to not know hardly at all.
posted by rhizome at 8:58 AM on July 8, 2019 [4 favorites]
Frankly, a lot of what you just said sound appropriate for pets, not people. I've known of kids under 10 who were treated more honestly, and seemed to find great comfort in being able to talk about it and decide how they wanted things to happen -- did they want to go home or stay in the hospital? Was there anything special they wanted to do? Who did they want to have their favorite things?
posted by tavella at 9:43 AM on July 8, 2019
posted by tavella at 9:43 AM on July 8, 2019
seemed to find great comfort in being able to talk about it and decide how they wanted things to happen
You have to admit that there's an irony in giving the child such agency through decisions that are made for them. They could just be making the best of a situation that is out of their control.
This is not to say that nobody should ever be told anything.
posted by rhizome at 11:05 AM on July 8, 2019
You have to admit that there's an irony in giving the child such agency through decisions that are made for them. They could just be making the best of a situation that is out of their control.
This is not to say that nobody should ever be told anything.
posted by rhizome at 11:05 AM on July 8, 2019
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posted by blob at 9:34 AM on July 6, 2019 [4 favorites]