A video game community filled my nephew's final days with joy
theguardian.com
theguardian.com
There were goofy moments (where he would make his character wear something silly, and I'm pretty sure he was fishing for a reaction from me, too) or moments where I could see him emote through the in-game characters (like making a character's animation look like it's panicking by moving controls around arbitrarily, and you can see the video game character flail wildly). Through these actions I could see my friend's personality clearly, and I think being able to express yourself is important when you've been in the hospital for a while. I can only assume that he also found some joy from it as well, since it could have been difficult to express the same emotions when you're attached to machinery and often short of breath.
I think it's important to connect with people using the time we have alive, and I really think anyone in palliative care (or knows someone in palliative care) could consider video games as another option for connecting with your friends and family. With the right game/accessibility of controls, and an appropriate level of energy/attention span, it could be something that brings people closer even as we hit our physical limits.
Thank you.
Small edit: my partner in life is about to finish her Physician training to become specialised in Palliative care, her wounds motivate her to be a carer and lover for those who need her specialised care. I'm quite honestly humbled and grateful people like you and her exist in the world who can bring joy and love in moments of anguish.
I believe this is what Internet communities should aspire to be like, to cut through the toxicity and memetic warfare and just do something great together.
this is it here.
...and these things happen far more than we realize. My "dad" wasn't my biological dad. He married my mother when I was four and he was the one who was there for me for my entire life, so much so that I've never even known (or cared to know, beyond a passing interest in my health history) who my biological father is.
One quirk of that is that my "dad" never formally adopted me. About a week before he passed away, we had one last time alone as a family before inviting friends & relatives for a last visit. During that, he mentioned that he regretted not officially adopted me. Thanks to several local folks, including a local lawyer, local probate judge, a city clerk in another state, and probably a couple more, were were able to complete the adoption and present my dad with the paperwork and an updated birth certificate that lists him as the father within four days.
With the Internet especially, we see the worst of the worst, but I personally feel that it's overwhelmed by the good, and stories like Michael's show the power to bring people together.
I agree, the good parts of the Internet are more apparent if you know where to look. The darkest corners, however, are highlighted more by the news, perpetuating a cycle of negativity and pessimism.
I've basically stopped watching the evening news as a result of this. A guy stealing a wheelchair 2,000 miles away makes the local news, but 100 people helping someone out doesn't merit a mention anywhere.
We had not heard from one online friend for a while. But then we got a message from the daughter of the lady who had the neatest bakery in the American mid-West. As you can imagine it was doom and gloom, she had not made it out of the hospital.
Both my sister and myself were shocked by the news, however, we had been there for this lady, her life coming to a premature end in a hospital. Online her world was nothing like the sad reality of her real life. We envied her in this online world, she was in the handful of true greats, not just for the bakery but for the personality.
We did not have time for anything too fanciful, we heard our online friend was poorly and two weeks later we had the message from the daughter who was not yet teenage. Everyone in the game added a tombstone - a game prop - in memory, there was mourning going on, nobody knowing what to say for the weeks after that.
I can remember telling my workmates that I was in stunned silence due to an in-game incident, but you just don't expect online friends to die and you don't imagine that you could be stunned into silence by such an event.
We also had no further messages from the daughter so that was that, abrupt. But, if I think now of how ill she must have been and how we lavished praise on her for her creations without knowing that she was at death's door, I think we helped provide an escape. In our own special way we visited her online every day during those difficult times and talked about what mattered to her in her world.
Games can be special like that.
Communities like the ones from Elite Dangerous or EVE Online really tend to shine in such moments. I‘m... I don‘t know what else to write. Dang it.
o7
The Eve Online and E:D communities are very supportive; players truly do care about each other underneath all the other layers. The communities have existed now for so long that they go deep. Also there's a fair bit of commitment needed to get into them, from a learning cliff perspective, so perhaps this is a factor as well? Common to both is how they are highly social communities.
(For others seeing this) look up "Broadcast 4 Reps", how Eve players encourage each other not to stay silent, but to call out when you need help. This is referring to the in game mechanic of letting logistics (a supportive fleet role) know to direct repairs your way, that you are in trouble. It's really an amazing thing to see the message spread that it is _ok_ to need help and talk about it.
o7
A good friend of mine died young. Captain Luke Lonestar was a well loved director of our corp and friend to many.
For his funeral, the group had our own send off for him. This included multiple people flying to New York from as far away as California.
It is incredibly surprising how close knit a gaming community can be. How much support each and everyone provides each other. I can say I'm a better person for knowing him and for what he had done for me and our group.
It is truly amazing how far a good community will go to help each other.
This is the Internet at its best for sure, but I'm more taken aback at the resolve of this kid - staying positive and doing what he loved right up until his last moment. It's heartbreaking and inspiring all at the same time.
Godspeed, Commander.
Hermitcraft is a bunch of adults doing their best to play with the spirit of children, and they're good at it. The energy and creativity they spent playing with this kid were impressive. They seemed to get a lot out of it. In fact they should probably make a point of inviting a kid to play regularly, terminal or not, because it seems that they gain from it about as much as the kid.
https://westhorpe.net/2019/07/an-open-letter-to-frontier-and...
and this article hit me hard
Got me into such an emotional mode
This community is amazing
Not much else I can think of that adds to the conversation here. Poor little guy, I'm glad he had happiness before he left.
https://www.reddit.com/r/EliteDangerous/comments/3sdixv/what...
o7
I salute you guys!
Rest in Peace CMDR.
For me:
1/ support the Grauniad [0]: the gulf between the quality of their journalism and the rest of the market is gaping. I may not agree with all their views but the world is a better place with their investigative push
2/ let's leverage the HN community: one of the constant messages I've seen in my limited time on HN is how diverse and capable the community is. Surely we can do this and more if we set our heart to it?
It may not be the most popular view at the moment but I do believe "The Arc of the Moral Universe Is Long, But It Bends Toward Justice". But this doesn't happen automatically; each of us need to push the pendulum, and a billion pushes can outweigh quite a bit of unfairness...
[0] https://www.theguardian.com/commentisfree/2009/aug/24/grauni...
Anyway: the Guardian is just one paper. Support independent journalism, whether it's the NYT / WSJ / WaPo / FT / your favourite non-clickbait news platform.
How can one best support journalism, if its brokenness is systemic?
Consider a supermarket-checkout tabloid of the "UFO aliens tattooed my baby!" variety. It seems unlikely that any plausible level of resources will yield high-quality journalism. But perhaps the BuzzFeed and BuzzFeed News pair is a counterargument.
Consider the NYT, with its view of the world as a competition between ideas, rather than between economic and political interests. More resources won't fix that.
Also apropos the NYT, for decades I wished for better coverage of the role of subculture group-think in governance failures. I excused that NYT's lack of it as resource limitations, and hoped for reallocation someday. Then Trump, and there was lots of coverage of group-think among his supporters, and still a dearth of it about its role among elite. Resource limitations weren't the bottleneck.
So yes, marginally better funding might yield marginally better journalism from the the Guardian / NYT / WSJ / WaPo / FT / etc. More reporters, fact checking, foreign bureaus, conferences, etc. But...
They still won't be tracking their failures, searching for root causes, and pursuing continuous process improvement. It won't change journalism's culture of obliviousness to decades of learning in other industries about how to organize processes for consistently high quality.
Is there any journalistic platform that has a plausibly modern process story, and just needs resources to flesh it out and grow? Regardless of focus - just, is anyone doing this well, who can be funded and assisted as an exemplar? Is there any journalism foundation attempting to encourage modern processes? Is there any dinky little local paper that's made a commitment to consistently record its failures in a google spreadsheet, and to follow up on what went wrong and how their process might be improved? That I could see funding.
Marginal non-transformative improvement is nice too. With society and history being chaotic, small deltas can have large consequences. But I find the current product quality demotivating without some prospect for transformative improvement.
All I can do is support the good in the world, and help those with less than me.
This story is inspiring. And I’m grateful that it was shared.
It’s great that people turn out in support of others. However, you’ve got to wonder if we’d made more of an effort over the past half century in research, many fewer people would have died prematurely. Great progress has been made in childhood cancers, for example:
https://www.cancer.org/cancer/cancer-in-children/key-statist...
20% more yearly research compounded over the last 5 decades and we might not be reading this story today.
50 years from now this person would not die in childhood from cancer.
Many fewer people did die prematurely in the last 50 years, precisely because people did the work you're wanting them to do.
The reason this story even could happen is because it's so rare to hear stories like this anymore. It's not like the middle ages where 30-50% infant mortality was common. People wouldn't have the energy to organize emotional support for every child that died in those days.
Child mortality is dropping ridiculously fast. You can't get to zero though.
Yes, the world is a much better place. Your article summarized it nicely:
“Rising prosperity, rising education and the spread of health care around the globe are the major drivers of this progress.”
My point is that more research compounded over decades would help us cure more people sooner.
I didn’t say we can cure everyone but perhaps we can make it extremely rare.
The universe does not and is under no obligation to care about any of us and just being angry at it is like being angry at a rock, but that is no reason for us not to care. Quite the opposite if you ask me.
I think we are responsible for making the world the best it can be for everyone because we are the only ones here who have the capacity to care about making it so.