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.
