When a close friend's body was starting to fail from lung cancer (and it was clear that it was his final days), I think we were very lucky that we both enjoyed video games. He was bedridden, slowly losing his motor functions, and it was hard to talk since breathing started to become difficult - but in a multiplayer video game with a controller and large buttons, he could be very expressive!
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.
I've been fortunate that I've not had a close friend pass in my life at the young age of 31. The day it comes around, I hope to share your world view. Thank you for sharing your story, and I'm sorry for the pain you must have experienced.
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.
This is beautiful. It's amazing how the good side of the Internet really shines through in these pieces. Things like the 7,000-word script and professionally-narrated audio story for the kid to listen to are examples of how people sometimes go out of their way to do an amazing thing for little to no recognition, and that's what makes it even more wonderful.
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.
> Things like the 7,000-word script and professionally-narrated audio story for the kid to listen to are examples of how people sometimes go out of their way to do an amazing thing for little to no recognition, and that's what makes it even more wonderful.
...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.
>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.
according to the original post, the audio story should be shared with the elite dangerous community. i tried looking for it without luck. maybe it's not out yet.
i look forward to listening to it.
you are my new hero! thank you! i'll ad that to my lineup of audio dramas and books that i am currently listening to right at the top so i'll get to it soon.
My sister plays this game called Bakery Story. I played for a while too and shared a lot of my sister's online friends. There were a few people who had exquisite bakeries, each a world of intricate design and my sister was in the top tier of that type of thing. My bakery was a bit more functional, I was there for sibling rivalry reasons rather than the global community.
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.
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.
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.
I was holding it together until the end when I saw the Elite tribute in the Hearst (a hand flipping the bird with the message "PILOTS NEVER DIE THEY JUST RESPAWN ON ANOTHER STATION").
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.
The Hermitcraft gang played Minecraft with a dying kid this season. I wonder if it was the same one, or if this is becoming a (wondeful) trend.
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.
Great read, there are many other examples. One example I read in a Wired magazine many years back, of a World of Warcraft mass funeral and mourning in some place.
Or like the one from Norway from a few monthes ago, where the parents did not know he had friends until WOW players meet up in his funeral and a lot of players around the world mourned him in the game
https://www.bbc.com/news/disability-47064773
I love when I read stories like this. Sometimes I feel so hopeless over how toxic and awful the internet can be, but then moments like this remind me that there are lots of good communities still out there. o7
Meanwhile, Disnarvel won't let a kid's family put Spider-Man on his headstone. As much as Disney has been trying to pivot into social consciousness in its various media properties, it's the direct fan support that the Elite Dangerous crew showed Michael here that stands out as truly magnanimous.
I'm sorry, but putting whatever character on a tombstone does nothing for the kid, he's already dead. Like, this kind of thing makes no sense to me - gestures towards dying people are fantastic....while they are still alive. Also, if the family really cares about it this much they could just do it and then Disney has to consider the bad optics of suing a family over a kids gravestone. Most likely unless someone goes and tell them no one will notice - my local cementary has plenty of children's graves with Mickey mouse and donald duck on them and I'm 1000% certain no one asked disney for permission either.
I couldn’t find it inspiring, only heartbreaking and anger-inducing. It makes me so geared up to think how shitty the world is to some people who have done nothing to deserve it and so generous to some who have done everything to not deserve it. Just one more reminder of how the world really feels like one wretchedly sick joke concocted in the mind of a wretchedly sick fuck.
If you're angry at the universe, try to channel that anger into action in however small a way you can think to improve the world. Emotions are a powerful motivator.
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.
And that's fine; cold impersonal anger can be a very powerful motivator if channeled properly. My question is what are WE going to do about it?
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...
Well you could argue they would do better with more resources.
Anyway: the Guardian is just one paper. Support independent journalism, whether it's the NYT / WSJ / WaPo / FT / your favourite non-clickbait news platform.
I was thinking about this the other day, in the context of a local hacks-and-hackers (journalists and programmers) group...
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.
That's an extremely negative take on a beautiful, if sad, story. I'd rather focus on the positive, beautiful aspects, like the heart-touching gestures of his friends and how he hope when nothing was going his way. Sometimes that's really all you can do.
I agree that, at the individual level, focusing on the beautiful aspects seems like a reasonable coping strategy, and I can’t help but think that on larger scales of time and space, it only helps perpetuate the horrors.
If you believe in evolution then there is no evil behind this lad's illnesses just very bad luck. At least he was lucky enough to have very loving people around him, something else that is a result of evolution.
We could make for better luck, but then we'd need many more actual researchers, including basic research. We could get this funded directly instead of best people getting siphoned off to pharma sector to develop next patent to cash out. Etc.
Are you mad at the various random mutations of genes, of countless other stochastic processes that leave some people in his situation and others perfectly healthy? Then I share your frustration. I don’t know why anyone has to suffer or why I am privileged beyond someone else. What did I do to deserve my health? How did I win the evolution lottery? It’s just random chance I tell myself and to that end true randomness makes it a bit more fair, though it doesn’t feel right.
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.
Well, I don’t know why he’s mad, but after living 5 decades, I’m a little frustrated myself.
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:
If we reduce the number of people dying, you will still see stories just like this because they have an impact and they cause reflection. They're meaningful stories.
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.
We can help find cures for future generations, I bet reading this might make someone want to go in that field. Every year people improve lives via new drugs.
i am going to disagree here. what he was offered was companionship and compassion in his suffering.
distraction from the pain, sure, but not distraction from reflection.
playing games like this does not prevent you from reflection. i haven't played elite dangerous yet, but other games like it. these games are not a mindless distraction. they can be, but they don't have to be. you play an intelligent being, and how you act in the game reflects on how you act as a person.
being confined to the hospital, the game allowed michael to break out of its confines and act as the human being that he is within a virtual world. doing that allows plenty of opportunity for reflection on your life. and i am sure he did his fair share of it.
in the end, death is not a punishment, but a release from suffering.
someone once said that handicapped people are a test for everyone else around them, how they react and treat them.
the elite dangerous community has passed that test, and hence michael was allowed to leave this earthly plane and ascend.
> "in the end, death is not a punishment, but a release from suffering."
That's a very big assumption, and one to be very careful about when making decisions about what choices to encourage others to make in their final days. In fact, it's a belief itself, yet you're treating it as if it's a fact and one we can safely live by and encourage others to live by. That's very serious.
it's not an assumption but an interpretation based on how life after death is described. and of course yes, it's a belief. sorry for not making that clear. without any belief, death is nothing, just end of life.
whether this belief is reasonable or not, you'll need to decide for yourself by researching relevant sources. i did not intend to encourage anyone to live by it, rather my intention is to console those who are grieved by the loss of a loved one.
Pascals wager is garbage, it underestimates the time, effort and thought cost if there is no god. What sort of reflections would otherwise be meaningful? All the regrets they have? It's a kid, he had cancer, what could he have done differently?
There's also the point that to play a cynical game with religious belief in order to maximise your outcome, would probably annoy most so-far posited gods a lot more than an honest skeptic.
edit - there would be much variation in approach however. The Greek gods would tend towards maximising poetic irony and unusual animal husbandry practices, whereas Jehova would probably just smite Pascal with boils.
Whatever anyone thinks of sdegutis's comment (and I didn't like it much either), what they actually wrote bears no resemblance to the "twisted and wicked thoughts" that you made up and put in their mouth.
From the HN guidelines:
Please respond to the strongest plausible interpretation of what someone says, not a weaker one that's easier to criticize. Assume good faith.
I understand your point but what I wrote is the strongest possible interpretation of his comment that is possible for an atheist like me.
That's exactly what he said for me. That the terminally ill child should avoid distractions that lessen his suffering just to have time to reflect on his short and troubled life because death might not be the end and there might be some consequences after that which is completely supernatural reason flying in the face of all available evidence.
You presume that by believing in a God you're not living life in the best way you can, but is there really an objective (non-religious) "best way" to live life? I would assume that for the average religious person, the way they live their life feels just about right (barring any intrinsic human shortcomings).
If following a religion has zero downsides in life, then it needs no justification. However, the act of trying to justify religion suggests it’s not inherently optimal.
So, the actual counter argument to Pascal’s wager is this. If there are some true god(s) that care they might have an actual objective scale, but as it’s unknowable any sacrifices for a specific religion are unwise.
In other words we don’t know if the objective scale is a specific belief, doing charitable works, sacrifices on a dark alter, or even maximizing the number of times we say purple on a given day. Further, without specific information you are equally likely to get the scale reversed as correct, possibly both suffering great long term harm as well as sacrifices in life. Thus, with the sum of all possible outcomes averaging to zero, the only net expected result is the sacrifice in life.
PS: I am positing this as a flaw in a logical argument, don’t take it out of that context.
If following a religion has zero downsides in life, then it needs no justification. However, the act of trying to justify religion suggests it’s not inherently optimal.
let me rephrase that:
If following civil laws has zero downsides in life, then they need no justification. However, the act of trying to justify certain laws suggests that they are not inherently optimal
life with zero downsides does not exist. we need to make some compromises if we want to live together as a society. be those civil laws or a religion is a matter of choice, but we can't opt out.
the need to justify religion does not invalidate religion any more than the need to justify laws invalidates those.
as a society we still need to decide which laws we want to implement.
and as an individual everyone needs to investigate for themselves which religion (if any) to follow.
That’s not really what I saying I should have added net downside.
Anyway, you don’t need to opt out of religion, that’s the default state. To use an obvious example, at birth people don’t have a codified view of what happens after death.
People can and often are biased based on their upbringing, but that in effect takes effort from an existing believer to communicate their beliefs directly or via artifacts like books. Without that, nothing forces you to form an option.
Basically, using whatever measurement system you choose their is the best possible outcome after cost benefit analysis.
Aka if religion Alpha offers the best possible tangible outcomes using whatever metrics you are bashing this choice on and it also offers the best possible unknowable outcomes then their is little reason to pick anything else. By tangible rewards/costs I mean things that could be theoretically verified like joy, physical fitness, social acceptance, positive legacy etc. and by intangible rewards/costs I mean what the gods / spirits / whatever think of you, what happens in the afterlife etc.
Essentially it’s only if you rank religions by tangible rewards and intangible rewards separately and end up with a different first place that the intangible rewards become an issue.
> and as an individual everyone needs to investigate for themselves which religion (if any) to follow
I disagree. Nobody needs to investigate any religions. There's no knowledge based reason to do that. You might want to join religion for the community but even then there rarely any investigation necessary. It's sufficient to just follow their practices.
if you just want to join a community, and don't actually care what the community stands for, sure.
but we are discussing pascal's wager.
if god exists, you want to do what god asks for. that requires that you investigate what god is really asking for. joining a random community and just following their practices will help you do that. you have to investigate and figure out whether these practices make any sense.
you may or may not find an answer. either way it's up to you to keep searching (maybe there is a better answer).
sure, you can take pascals wager on blind faith. but that would be a pure gamble. i prefer to make an educated guess. and that requires investigation.
> sure, you can take pascals wager on blind faith. but that would be a pure gamble.
It's always a pure gamble since there is no knowledge about which god is more real.
> i prefer to make an educated guess. and that requires investigation.
Your guess will not be anymore educated regardless of how much you investigate. Because the only way to investigate claim of some god's existence is to ask people who can't know either.
No matter how smart you are, garbage in, garbage out.
We promote and justify all kinds of actions and attitudes that are not immediately beneficial, like eating properly and exercising. For the religious person, a virtuous life is in itself a reward.
That’s orthogonal to Pascal’s wager. Various religions all have tangible costs and rewards. Pascal’s wager is essentially trying to decide how valuable the rewards after death offered by each religion are when you can’t verify if they exist.
My point is the availability heuristic makes biases people to overestimate how likely each religion is to be true. (https://en.m.wikipedia.org/wiki/Availability_heuristic) The set of all possible religions would first need to be limited before that specific line of thinking becomes relevant. Which essentially means the argument is meaningless as you must first assume a religion is likely before it would tell you to follow it.
I am not sure why a religion making sense would have any relationship with it being correct. Physics for example involves some very non intuitive things that are verifiable.
Suggesting you can intuit the non verifiable parts of existence seems like hubris in that context.
intuition is not needed. if the point of religion is to solve social problems, take a look and check if the religion in question does solve social problems.
does prayer or meditation make you feel better?
do the laws proposed help you interact better with others?
all these things can be verified.
you need to look at what each religion claims, and what the outcome in that religious community is.
religion is supposed to help with self improvement and help people live together, build a community. what else is there? if religion does not achieve that, then what's the point?
humanity should continuously improve our society. globally.
we progress scientifically, and we should (and do) progress socially. the latter is the purpose of religion. every religion, when introduced, has induced social progress. if a religion is no longer serving that function, then it's time to move on.
i suppose pascals wager suggests to blindly pick any religion over not picking one. right, that makes no sense. how would you know if you picked the right one.
the only way to solve this is to investigate all religions and decide which one is the most likely (if any) and then go with that (or none at all)
The best way to live your life is highly subjective and personal. By allowing people to instruct you on how to live your life based not on knowledge but on centuries old guesses almost inevitably prevents you from having best possible life regardless of what it might mean for you.
Relying on old guesses instead of knowledge gives you objectively worse results in any kind of activity. It's not a stretch to assume it also has the same effect on your life as a whole.
indeed, that's why it is necessary to check whether what they say still makes any sense. independent investigation (and not letting others tell you) is the only way to find out.
> indeed, that's why it is necessary to check whether what they say still makes any sense.
The never did make any sense. It's just that now we can use knowledge to point out many specific places that we know are wrong.
> independent investigation (and not letting others tell you) is the only way to find out.
You definitely should let others tell you about the world we are living in. But those others should be the ones that posess knowledge. And since science is the only way to get actual knowledge about reality then you should probably stick to what science says and ignore everything else.
If you want to investigate religions be my guest. Just start with atheism. It will save you a lot of time and a lot of mistakes.
You definitely should let others tell you about the world we are living in
oh sure, but every individual still needs to judge for themselves what they learn.
science doesn't help us solve our social problems. and as far as i can tell, neither does atheism. none of the mainstream religions are capable of that either, but the answer is out there.
i'll leave it at that because i don't want to promote a particular belief here. that's a topic for another time and place.
I am of the opinion that Pascal's wager is mostly wrong because it's a false dilemma. For each diety/religion R that you're considering, simply construct a diety that will punish you for believing in R and reward you otherwise. Alternatively, construct dieties that reward you for atheism. The point is that it's not a 2x2 matrix of (Atheism, Theism) x (God is real, God is not real).
It's not "wrong" its literally a foil to respond to logical reasoning of religious belief(and establish rational approaches generally ended in madness.)
Pascal was trying to show other ways to christian faith, and how absurd dealing with infinities of uncertainties were.
The wager has had many criticisms over the years, but I would say misunderstanding it as a logical and faithful argument for the existence of god is the most prominent one.
that assumes that those twisted and wicket thoughts are actually the right interpretation of the word of god.
i'd be just as skeptical as you are. but that doesn't invalidate the idea. there are other interpretations that make a lot more sense and are actually helpful.
Or, in case there isn't anything "after this life", you could be wasting your last days in unnecessary solitude, facing the fear and pain all alone in the name of tormenting yourself about past and, by that moment, completely irrelevant things. In the end, it's a very personal choice, so why not let everyone choose it for themselves
When I focus intensely on something right before sleep impacts, I've noticed that I seem to simply pause, emotionally. When I wake up the next morning, the emotions from the night before are immediately present again. If I was in a fight, or studying intensely, or playing 12 straight hours of factorio, I wake up continuing where I left off.
If there is anything after this life, I want to wake up to it on a positive note having spent my last hours happy.
Without medication I suffer from around 31 migraines in 31 days. Opioids wouldn’t hardly touch the pain. They’d just make it so I didn’t care I was in so much pain. Distraction is sometimes the only way to get pas pain. Further, I’ve been able to seemingly forget about the pain when laying with friends. That’s absolutely what we should all be doing for each other - meaningful, supportive connections for one another.
I'm not sure how you got "constant distraction" from this. What I saw was an enormous amount of love and support offered to this boy in his final moments.
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.