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How to Live to the Full While Dying: The Diary of Alice James (2017) (brainpickings.org)
63 points by samclemens on Nov 28, 2020 | hide | past | favorite | 30 comments



There is really a lot of good stuff here, and not just about death and dying. For example, I had not previously heard the term Boston marriage.

But if you get nothing else out of this, please contemplate the paragraph about her father letting her know that being suicidal because of her endless physical suffering wasn't "crazy" or unreasonable:

Subverting the dogma of his era, he responded that there is nothing sinful in wishing to end one’s extreme suffering, and gave her his fatherly permission to take her own life if the physical and psychological pain became too unbearable, asking her only to do it in a gentle way.

People who are suicidal are often people suffering deeply who get told their desire to stop suffering is somehow a mark of insanity or a personal defect. If you know someone who is suicidal, helping them cope with whatever serious problems they likely have is a much better thing than implying they don't have any real problems and it's "all in their head."

I spent most of my life suicidal. I mostly no longer hurt these days and I mostly no longer feel suicidal. So my opinion is informed by personal experience.


> I spent most of my life suicidal.

same here. things only turned around once I started embracing it and no longer guilt trip myself about whether it would be damaging to my surrounding. since telling myself I can always get it over with "tomorrow" but "let's see what the rest of the day brings", I am actually doing really well. I also tell myself it's not just OK to end it but it's one day my duty to do it "on my terms" (if it is in my control to make that choice ofc).

it sounds morbid because it is. but only facing my reality like an alcoholic faces that they'll be an addict for life, regardless if they don't drink for 20 years - is why not only am I still here but am able to life an incredibly full life.

If I weren't suicidal then _I know_ that it would make me more ignorant to the suffering of others. I'd rather be dead than go through life like that. life without death is meaningless and we should cherish it the same way as we celebrate being born.

edit: The Denial of Death by Ernest Becker, perfectly articulates how messed up our relationship with death/disease/dying has become in modern society.


Same. I decided to implement death memes/jokes in real life. Mostly in reply to dumb comments like "vaping will kill you faster than cigarettes" (to which I say "Oh, man, I really hope so!"). The reactions are hilarious or at the very least, it shuts them up.

People seem violently afraid of dying, it's like they reject the thought of it happening to them. Which is funny, because that is one thing that will happen to literally everyone alive today (perhaps future generations could become immortal, but imo not anyone who is alive right now).


> I spent most of my life suicidal. I mostly no longer hurt these days and I mostly no longer feel suicidal. So my opinion is informed by personal experience.

Thank you for sharing this, and for your perspective. Were there any particular things people said or did that were helpful to you for reaching where you are now?


I have two adult sons who nursed me back to health after doctors wrote me off for dead. Among other things, having been raised by me, they were really savvy about handling it when I was genuinely, seriously suicidal because I was so miserable.

Two things that became policy:

1. "Do not engage Teh Crazeh"

2. Tend to mom's physical health when she's a nut job.

The first means don't argue with me when I'm irrational. The fact that I'm irrational means nothing you say will do any good and it ends up magnifying the problem rather than helping.

For the second point: At some point it became really clear that when I was seriously suicidal and acting really crazy, I was almost always physically at the end of my rope and just incapable of taking care of myself. It became my oldest son's policy to offer me food and drink and make sure I was warm enough (or sometimes cool enough, but usually warm enough because I have a long history of having trouble staying warm).

And even if I was all "Don't change the subject, you disrespectful rat bastard!!!" he would just stick to trying to feed me, give me something to drink and get me warm. I almost always promptly fell asleep once I was fed, hydrated and warm enough and would wake up no longer crazed and wouldn't remember much of it.

My kids were always given a pass on bad behavior when they were sick as kids. If they were feverish and being awful, I would send them to bed to get some sleep rather than punishing them. So that came back to me during my lengthy health crisis as them developing this policy of feed me, hydrate me, get me warm, and ignore the nonsense I was saying.

A third policy was that I would let them know when I was just out there and couldn't be left alone and they would babysit me and make sure I was not left alone on days when I was like "Yeah, I'm not right and can't be trusted with my own welfare." That both made sure I didn't attempt suicide and addressed my constant complaints that "no one cares about me!" with undeniable proof that someone cared about me, which helped resolve those feelings over time.

Something I have long recommended: If you know someone is suicidal, just keep them company. They are much less likely to die by their own hand if they aren't alone.

I know this works and I used it to help someone I knew some years ago who was suicidal.


I feel like a lot of ways to address suicidal tendencies isn't a hard and fast rule. The only thing I can say is, the government's policies and the status quo of US culture about it is antithetical to what they want to achieve. In fact it's more likely to keep people suppressing it or scared because they'll be held against their will and burdened with the debt.


“The meaning of life is that it ends.”

What a well-written piece on an important topic that we'll all be facing. I had never heard of Alice James, thanks for posting this.

These HN gems, esp. when encountered in a quiet evening with a receptive mind, are worth the whole droll tintinabula of Twitter, FB, and such.


> To any one who has not been there, it will be hard to understand the enormous relief of [the doctor’s] uncompromising verdict, lifting us out of the formless vague and setting us within the very heart of the sustaining concrete. One would naturally not choose such an ugly and gruesome method of progression down the dark Valley of the Shadow of Death, and of course many of the moral sinews will snap by the way, but we shall gird up our loins and the blessed peace of the end will have no shadow cast upon it.

An excellent illustration of why people, once diagnosed, can become very attached to that diagnosis.


Not to derail this, but life doesn't have to end. We aren't trying hard enough to solve death.

Here's a reverse salient / step function improvement:

Clone monoclonal decephalized humans and grow them like plants for blood, organs, and basic research. Remove their heads before birth with developmental gene cutoff of neural crest development, or for the easier path, surgically decapitate them before they have brains.

Grow them in transgenic pig uteruses, then hook them up to respirators and gastric feeder tubes. Electronically stimulate their hearts. Inject them with hormones. Grow these clones into adulthood and keep them in vast warehouses.

They don't have brains, so they're not persons. (I'm not looking to debate this with anyone who disagrees.)

Suddenly we have the best experimental platform for researching every non-brain disorder. We can do studies experimentally rather than population summary statistics and identify all the negative environmental and dietary inputs.

Infinite insulin, infinite blood, infinite organs. Nobody dies waiting for a transplant. Bonus: the clones don't express surface HLAs and epitopes that trigger immune responses that require lifelong immune suppression.

We can put young blood and young organs into people. Replace thymuses, the leading cause of immune system decline.

Today's approaches in biology are punch card slow. We're doing double blind clean room science because we're too afraid. The field is content with running gels, and that's why I stopped pursing it academically and am trying to forge my way with money. We have to try harder, bolder things.

The field needs an injection of the engineering mindset. This isn't the only thing that needs to change, but it's a start.

The human body is a machine. We can duplicate and clone these machines for spare parts and basic research.

Spin off the tech and do the same for cows and pigs, and suddenly you have ethical meat that isn't fake.

If I ever have a big exit, I'm throwing my weight into this problem.

I have no doubt we could reduce deaths by cancer and heart disease if we had this platform. I also think we'd drastically increase health span.

If you want a longer life for yourself and your loved ones, clone humans.

The company that does this will be the biggest company in all biotech. Every other company will license your supply, and hospitals will be buying from you constantly. It's got a worldwide market, too.

If we don't do it, China will.


I, too, think about this stuff. And then I remember that most governments won't legalize cannabis (while alcohol is legal) and will ban drugs for no good reason (piracetam, gabapentin, melatonin, salbutamol). And the majority of people support it.

Even if you can get the funding and the scientists, you'll be roadblocked and quite possibly imprisoned for doing what you're suggesting.


Bad habit to use the word 'we' where you mean I and even worse habit to assume you know what your 'loved ones' want.

Everyone who speaks this way sooner or later makes the discovery, almost always painfully, that their needs are but a small fraction in that massively wide spectrum of human needs.


> your 'loved ones'

Why is this in quotes? Are you suggesting that I'm incapable of love or something?

> Bad habit to use the word 'we' where you mean I

I do mean we. Even if you don't know you need it yet. Those of us that live in the bright future ahead won't even give this a second thought.

> Everyone who speaks this way [...] their needs are but a small fraction in that massively wide spectrum of human needs

I'm getting the impression you don't like my idea.


Very interesting idea. Did you come up with it yourself? Would you know how difficult it would be to do right now?


> Did you come up with it yourself?

Yes, although I assume others somewhere must be thinking similarly. It seems self evident to me.

I post this idea on HN every now and then when I see the subjects of cancer, aging, or death come up.

> Would you know how difficult it would be to do right now?

Incredibly difficult. This is an Apollo project.

You'd need egg donors, good embryo yields, a protocol that sustains life throughout development, womb surrogates, decephalization that doesn't kill, life support systems at every stage, birthing, machines to keep them alive after birth, ...

Once you've worked out the kinks though, this thing prints money. But that's not what's exciting to me - this gets us one step closer to ending death.

I don't think we've taken a single step in that direction yet, so it'd be nice to finally get started.


Well, you’ve convinced me! Unfortunately I’m no one important.

I’m surprised this isn’t talked about more. Maybe because the subject feels icky to people. Best of luck in spreading the word.


It is not clear to me, why 'we' want or should end death. Could you elaborate on that?


What? Are you volunteering? No? Why not? There you find your answer.


clone humans

Yeah, what could possibly go wrong...


That’s gross and beyond unethical.

Humanity needs to mean something.


I find it amusing that the same people writing ad tech and tracking software object to this. (I don't presume to say you do this, just that this demographic objects so strongly.)

Humanity needs to mean something, but let's shove some ads for Gillette down their throats.

It really makes me wonder what goes on in the minds of other people.

My proposed tech doesn't make life any less meaningful. In fact, it has a greater appreciation for life since it knows how important persons are and seeks to better their lives.


The sad truth is that most people I’ve met, even if tremendously intelligent in their field of focus and work, are still quite “simple”. I don’t mean this derogatorily, but rather that said people do not think about the nature of their reality any broader or deeper than the framework of thought imprinted on them by their culture, their religion, and their parents.

I am with you on this approach, fully. I’ve thought about it a lot over the last decade in particular. I find it odd that someone would insinuate it somehow lessens our humanity. Is it more humane to keep animals (like pigs) with provable consciousness, intelligence and feelings within the horrible meat farms we do today? Apparently that’s “humane” because it’s a necessity. How narrow minded is that?

I’m continuing to slowly introduce this idea to people via different angles — ethical meat is a great one. Thanks for sharing and giving me hope by showing there are more out there with a broader mindset.


I think that the vast majority of humans would find it repulsive to cut the brain out of a living human being to avoid sentience and create some of of figleaf loophole to allow for the farming of human organs.

A sociopath running a company doing this would probably decide to cut costs anyway.

What’s the big deal with sentience anyway? I’m sure you could have McKinsey write a business case that allowing the market to decide what a healthy liver is worth would motivate people to sacrifice themselves for a more productive member of society.

Ethics matter.


It's only gross because of our primitive brain. We wouldn't blink twice at gutting or rebuilding a computer.

If you say, "it's not the same". Why, just because a pig was created by God (or grows in nature) and a computer tower is created by humans?

Once either are mature, they're both owned by humans. One has more advanced motor functions and an integrated bioreactor, but the other can also do things that we can't.


No problem. Just opt out.


What about neurodegeneration?


One class of problems at a time.


This reminds me of Iulia Hasdeu: https://en.wikipedia.org/wiki/Iulia_Hasdeu

Unfortunately too many nowadays focus on her father's response to her death, but her story and writing helped me through my darkest days in teenage. She was writing in her journal about death, suicide, the struggle to comprehend life when she was only about 10.


Maria Polydouri’s last work of poetry, Echo Over Chaos, pondered the meaning of death as she was dying of tuberculosis in a sanatorium.

https://en.wikipedia.org/wiki/Maria_Polydouri


For Stephen Hawking, death was a purely mechanical process. 'I regard the brain as a computer which will stop working when its components fail,' he once said https://archive.vn/8zdlx


What a tragic and beautiful story of a life beset by chronic illness and endurance.

Here’s to Alice James.




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