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This story is in the same vein as that of the CloudFlare cofounder[1] who suffers from a rare neurodegenerative disease and has had his life pretty much taken f

This story is in the same vein as that of the CloudFlare cofounder[1] who suffers from a rare neurodegenerative disease and has had his life pretty much taken from him at far too young an age. This quote in particular gnaws at me: "We had promised each other that in a few years, when the girls headed off to college, we’d work less and travel more. Amy didn’t deserve to lose those dreams, or her companion, just as we were on the brink." I, presumably like many others here, have spent a lot of time on my career, perhaps to the detriment of other aspects of my life. Is it worth it? That seems like an impossible question to answer. [1]: https://www.wired.com/story/lee-holloway-devastating-decline-brilliant-young-coder/ https://www.wired.com/story/lee-holloway-devastating-decline...

scottLobster 6y ago
My attitude to stories like this is simply that you can't live under the assumption that you'll die early from some freak cause. It would be a non-functional state of life, sacrificing all long term objectives. At the end of the day all any of us can do is play the odds, and sometimes while playing X-Com that 99% chance-to-hit point blank shot by your most experienced soldier with the best equipment simply misses.
- grecy 6y ago
  > It would be a non-functional state of life, sacrificing all long term objectives. If your long-term objectives mean sacrificing (or delaying) happiness in the now, then I think you're doing the wrong thing. It's all well and good to have long-term objectives, and we all hope we beat our life expectancy numbers, but you have to make every effort to be happy now, and not wait for some distant and uncertain future that may or may not become reality.
  - asveikau 6y ago
    A key detail here is you can't predict the future. We can all imagine situations where the long term bet pays better. We can even make that sort of prediction in a way that works a good amount of the time, even most of the time. Except sometimes it won't work out. We don't know in advance when that sometimes will be. Be prepared for either outcome I guess.
    - grecy 6y ago
      > Be prepared for either outcome I guess. Yes, exactly. Happiness now (because now is guaranteed) and (hopefully) happiness later too. But whatever you do, don't put off happiness now.
  - scottLobster 6y ago
    Sacrificing present happiness for the future is the definition of a long term goal. Today I sacrificed alcohol I would have enjoyed so as to continue losing weight. If I thought I wouldn't be alive months from now to experience the benefits from said weight loss, why do it? Ironically that attitude would actually increase the odds of early-onset nastiness. Why put money into my 401k that I can't touch without penalty for 40 years when I could enjoy it now? Being content and at peace with oneself in the moment is possible, and should be striven for. But for my part I'd have a hard time being content with myself if I wasn't striving for better for both myself and my family. In my experience the only lasting satisfaction in life comes from discharging meaningful responsibilities, that requires some sacrifice of momentary happiness. Happiness is great when it's around but has no staying power, and too many people get sucked into miserable hedonism while trying to turn it into a constant.
    - kinleyd 6y ago
      Providing for an assumed future requires sacrifice and is the right bet. While doing that, understand that the journey is the destination. It's a tall order but somewhere in there is the answer to a lot of life's questions.
    - scawf 6y ago
      > Sacrificing present happiness for the future is the definition of a long term goal. > Today I sacrificed alcohol I would have enjoyed It does not mean you have sacrificed happiness. You can (I hope) be happy without drinking.
disabled 6y ago
It is common to have a rare disease: 7-8% of the general population has some sort of a condition that is classifiable as a rare disease I personally have 2, both of which affect my peripheral nervous system. Getting diagnosed is basically like having a bomb dropped on you. Nothing can prepare you for it, and it takes a long time to heal from the news, if you ever do. The vast majority of rare diseases have no government health regulatory system approved treatment. I believe 95% do not. Treatment is often for symptom relief, and typically modification of the disease process itself is not possible. However, in some cases, drugs can be repurposed.
amoorthy 6y ago
Such a difficult question. My thoughts: we're all trying to strike a balance between work and family. Whatever balance you manage, be present wherever you are. For whatever time you are with your family put away your phone, and be present mentally. Your children will be thrilled if they get 30 minutes a day of you uninterrupted even if you are working much of the rest of the time.

scottLobster 6y ago

My attitude to stories like this is simply that you can't live under the assumption that you'll die early from some freak cause. It would be a non-functional state of life, sacrificing all long term objectives. At the end of the day all any of us can do is play the odds, and sometimes while playing X-Com that 99% chance-to-hit point blank shot by your most experienced soldier with the best equipment simply misses.

grecy 6y ago
> It would be a non-functional state of life, sacrificing all long term objectives. If your long-term objectives mean sacrificing (or delaying) happiness in the now, then I think you're doing the wrong thing. It's all well and good to have long-term objectives, and we all hope we beat our life expectancy numbers, but you have to make every effort to be happy now, and not wait for some distant and uncertain future that may or may not become reality.
- asveikau 6y ago
  A key detail here is you can't predict the future. We can all imagine situations where the long term bet pays better. We can even make that sort of prediction in a way that works a good amount of the time, even most of the time. Except sometimes it won't work out. We don't know in advance when that sometimes will be. Be prepared for either outcome I guess.
  - grecy 6y ago
    > Be prepared for either outcome I guess. Yes, exactly. Happiness now (because now is guaranteed) and (hopefully) happiness later too. But whatever you do, don't put off happiness now.
- scottLobster 6y ago
  Sacrificing present happiness for the future is the definition of a long term goal. Today I sacrificed alcohol I would have enjoyed so as to continue losing weight. If I thought I wouldn't be alive months from now to experience the benefits from said weight loss, why do it? Ironically that attitude would actually increase the odds of early-onset nastiness. Why put money into my 401k that I can't touch without penalty for 40 years when I could enjoy it now? Being content and at peace with oneself in the moment is possible, and should be striven for. But for my part I'd have a hard time being content with myself if I wasn't striving for better for both myself and my family. In my experience the only lasting satisfaction in life comes from discharging meaningful responsibilities, that requires some sacrifice of momentary happiness. Happiness is great when it's around but has no staying power, and too many people get sucked into miserable hedonism while trying to turn it into a constant.
  - kinleyd 6y ago
    Providing for an assumed future requires sacrifice and is the right bet. While doing that, understand that the journey is the destination. It's a tall order but somewhere in there is the answer to a lot of life's questions.
  - scawf 6y ago
    > Sacrificing present happiness for the future is the definition of a long term goal. > Today I sacrificed alcohol I would have enjoyed It does not mean you have sacrificed happiness. You can (I hope) be happy without drinking.

disabled 6y ago

It is common to have a rare disease: 7-8% of the general population has some sort of a condition that is classifiable as a rare disease I personally have 2, both of which affect my peripheral nervous system. Getting diagnosed is basically like having a bomb dropped on you. Nothing can prepare you for it, and it takes a long time to heal from the news, if you ever do. The vast majority of rare diseases have no government health regulatory system approved treatment. I believe 95% do not. Treatment is often for symptom relief, and typically modification of the disease process itself is not possible. However, in some cases, drugs can be repurposed.

amoorthy 6y ago

Such a difficult question. My thoughts: we're all trying to strike a balance between work and family. Whatever balance you manage, be present wherever you are. For whatever time you are with your family put away your phone, and be present mentally. Your children will be thrilled if they get 30 minutes a day of you uninterrupted even if you are working much of the rest of the time.