7 ms·

How to Live to the Full While Dying: The Diary of Alice James (2017)

63 points by samclemens 6y ago

DantesKite 6y ago
What a tragic and beautiful story of a life beset by chronic illness and endurance. Here’s to Alice James.
DubiousPusher 6y ago
> 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.
- H_Pylori 6y ago
  >Ever since I have been ill, I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have, but I was always driven back to stagger alone under the monstrous mass of subjective sensations, which that sympathetic being “the medical man” had no higher inspiration than to assure me I was personally responsible for, washing his hands of me with a graceful complacency under my very nose. Dr. Torry [James’s final physician] was the only man who ever treated me like a rational being, who did not assume, because I was victim to many pains, that I was, of necessity, an arrested mental development too. Almost all people with undiagnosed illnesses experience this kind of treatment today. We haven't moved an inch.
Jun8 6y ago
“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.
echelon 6y ago
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.
- selestify 6y ago
  Very interesting idea. Did you come up with it yourself? Would you know how difficult it would be to do right now?
DoreenMichele 6y ago
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.
- JadeNB 6y ago
  > 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?
  - DoreenMichele 6y ago
    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.
known 6y ago
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 https://archive.vn/8zdlx
xenocratus 6y ago
This reminds me of Iulia Hasdeu: https://en.wikipedia.org/wiki/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.
- mjklin 6y ago
  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 https://en.wikipedia.org/wiki/Maria_Polydouri

63 points by samclemens 6y ago

What a tragic and beautiful story of a life beset by chronic illness and endurance. Here’s to Alice James.

> 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.

H_Pylori 6y ago
>Ever since I have been ill, I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have, but I was always driven back to stagger alone under the monstrous mass of subjective sensations, which that sympathetic being “the medical man” had no higher inspiration than to assure me I was personally responsible for, washing his hands of me with a graceful complacency under my very nose. Dr. Torry [James’s final physician] was the only man who ever treated me like a rational being, who did not assume, because I was victim to many pains, that I was, of necessity, an arrested mental development too. Almost all people with undiagnosed illnesses experience this kind of treatment today. We haven't moved an inch.

Jun8 6y ago

“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.

echelon 6y ago

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.

selestify 6y ago
Very interesting idea. Did you come up with it yourself? Would you know how difficult it would be to do right now?

DoreenMichele 6y ago

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.

JadeNB 6y ago
> 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?
- DoreenMichele 6y ago
  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.

known 6y ago

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 https://archive.vn/8zdlx

xenocratus 6y ago

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

mjklin 6y ago
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 https://en.wikipedia.org/wiki/Maria_Polydouri