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It's impressive to me that Jake managed to remain involved and communicative until so near the end. I withdraw into a personal shell when I get so much as a han

It's impressive to me that Jake managed to remain involved and communicative until so near the end. I withdraw into a personal shell when I get so much as a hang nail. Respect.

phone8675309 2y ago
As the romantic partner of someone going through a degenerative disorder and as someone who watched my grandmother be consumed by dementia I can say that it's something most people develop over time instead of being born good at. If a hang nail is bad enough to make you withdraw then that means you don't have a lot of experience of getting sick to the point where you had to push through as it hasn't happened a lot. Over the course of the 14 years I've had with my partner (started year 15 last month!) I've seen how she's had to adapt to remain involved and communicative - and a lot of days, that's a struggle for her that she puts herself through to stay connected to the people she loves. tl;dr: It's an adaptation, and I'm glad that you've not had to build that adaptation.
- painsucks 2y ago
  Fully agree. I live with cronic pain and people ask me if I'm in pain, I say yes, then they want to stop whatever we're doing and I say no, if I stop living because of this, I have nothing else left but the pain. So yeah, you get used to doing things with it. Some days it's impossible and I indeed do nothing but most days, meh.. Screw it, I have stuff I actually want to do.
  - ethbr1 2y ago
    Obama gave an answer in his Comedians in Cars Getting Coffee episode that stuck with me. Seinfeld asked something like 'How do you deal with constant annoyances, all the time, when you're president?' And Obama replied 'I expect it's similar to what you do -- you fall in love with the work. Sure, sometimes it's painful, annoying, backwards, foolish, etc. But in the end you fall in love with the work, and it saves you.' That defined purpose in a way I'd never thought about it, and probably undergirds every religion. It also made me try to open my heart more to people dealing with chronic pain or mental health issues, in terms of their subjective effort. Objectively, it may look like they're just doing {normal thing}, but subjectively that may be requiring 10x or 100x effort from them. And that effort (the work) deserves its own respect, independent of outome.
dredmorbius 2y ago
If you look at the disease progression and his blogging history, it was a few months before he did open up about the situation. (He may have discussed it earlier on HN, I haven't gone through his history to check on this.) Once he began, however, he continued to the bitter end. And yes that is commendable.

It's impressive to me that Jake managed to remain involved and communicative until so near the end. I withdraw into a personal shell when I get so much as a hang nail. Respect.

phone8675309 2y ago

As the romantic partner of someone going through a degenerative disorder and as someone who watched my grandmother be consumed by dementia I can say that it's something most people develop over time instead of being born good at. If a hang nail is bad enough to make you withdraw then that means you don't have a lot of experience of getting sick to the point where you had to push through as it hasn't happened a lot. Over the course of the 14 years I've had with my partner (started year 15 last month!) I've seen how she's had to adapt to remain involved and communicative - and a lot of days, that's a struggle for her that she puts herself through to stay connected to the people she loves. tl;dr: It's an adaptation, and I'm glad that you've not had to build that adaptation.

painsucks 2y ago
Fully agree. I live with cronic pain and people ask me if I'm in pain, I say yes, then they want to stop whatever we're doing and I say no, if I stop living because of this, I have nothing else left but the pain. So yeah, you get used to doing things with it. Some days it's impossible and I indeed do nothing but most days, meh.. Screw it, I have stuff I actually want to do.
- ethbr1 2y ago
  Obama gave an answer in his Comedians in Cars Getting Coffee episode that stuck with me. Seinfeld asked something like 'How do you deal with constant annoyances, all the time, when you're president?' And Obama replied 'I expect it's similar to what you do -- you fall in love with the work. Sure, sometimes it's painful, annoying, backwards, foolish, etc. But in the end you fall in love with the work, and it saves you.' That defined purpose in a way I'd never thought about it, and probably undergirds every religion. It also made me try to open my heart more to people dealing with chronic pain or mental health issues, in terms of their subjective effort. Objectively, it may look like they're just doing {normal thing}, but subjectively that may be requiring 10x or 100x effort from them. And that effort (the work) deserves its own respect, independent of outome.

dredmorbius 2y ago

If you look at the disease progression and his blogging history, it was a few months before he did open up about the situation. (He may have discussed it earlier on HN, I haven't gone through his history to check on this.) Once he began, however, he continued to the bitter end. And yes that is commendable.