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I think the fact that you're reflecting on it means there's no actual degradation. Someone with Lee's disorder doesn't seem to be capable of self reflection at

by warent 7y ago

I think the fact that you're reflecting on it means there's no actual degradation. Someone with Lee's disorder doesn't seem to be capable of self reflection at all. To me it doesn't really sound like he's suffering, especially given the fact that he doesnt really have meltdowns and freakouts. It sounds more like he's just reverting to a state where his behaviors and consciousness coming from the cerebellum/brainstem, i.e. living much more instinctually and in the present, like all other beings in nature. Yes it creates a big disconnect between him and average human society, but at the same time it seems like he's also freed from a lot of the shackles that come with the human mind, free to live moment to moment.

eastdakota 7y ago
This feels right. Even when he could express himself in a way I could understand, he never expressed himself as frustrated or suffering. The disease at some level seems to rob its victims from the ability to suffer. It’s hard to comprehend.
- rubicon33 7y ago
  I'm curious. Before his disease got bad, when he was still working but maybe starting to show some of the first signs... Did he ever express any concern? Or was it entirely other people who noticed his decline, but he was oblivious?
  - eastdakota 7y ago
    He did not ever express concern. The weird thing about the disease is it’s not like Alzheimer’s where you realize you’re forgetting things. Instead it seems you lose the ability to realize. I think by the time he’d be concerned he had lost the ability to be concerned, if that makes any sense. Lots of people around him did. However, I don’t think any of us thought it was a disease. We just thought he was becoming a jerk or “couldn’t scale” as Cloudflare became a bigger organization. I was angry at him when he left. Felt like he’d abandoned this project we’d started together. I feel incredibly sad and guilty I didn’t even question whether he could be sick until when I heard his diagnosis about 6 months after he’d left the company.
    - jgrahamc 7y ago
      I was walking down a street in London when you called me to tell me about the diagnosis. I stopped on a street corner (corner of Adeline Place and Bedford Avenue) and talked to you. Everything I'd seen Lee do and especially some of the last meetings I had with him at work that were so difficult and I kept wondering why he seemed like such a jerk, all that suddenly made horrifying sense. I felt so awful for my own reaction to him. And guilty.
qchris 7y ago
While obviously neurodegerative disorders manifest somewhat differently for everyone, I have some anecdotal evidence pointing the opposite direction. I've known people starting to undergo dementia (as a general term, may have been Parkinson's, etc.) that were aware of their decline. I think the most common example of that was the feeling among them that "I used to be able to do this..." I'm by no means qualified to make any actual statements about this case, but I don't think that the ability to reflect on degradation is perfectly coupled with a lack of it.

by warent 7y ago

eastdakota 7y ago

This feels right. Even when he could express himself in a way I could understand, he never expressed himself as frustrated or suffering. The disease at some level seems to rob its victims from the ability to suffer. It’s hard to comprehend.

rubicon33 7y ago
I'm curious. Before his disease got bad, when he was still working but maybe starting to show some of the first signs... Did he ever express any concern? Or was it entirely other people who noticed his decline, but he was oblivious?
- eastdakota 7y ago
  He did not ever express concern. The weird thing about the disease is it’s not like Alzheimer’s where you realize you’re forgetting things. Instead it seems you lose the ability to realize. I think by the time he’d be concerned he had lost the ability to be concerned, if that makes any sense. Lots of people around him did. However, I don’t think any of us thought it was a disease. We just thought he was becoming a jerk or “couldn’t scale” as Cloudflare became a bigger organization. I was angry at him when he left. Felt like he’d abandoned this project we’d started together. I feel incredibly sad and guilty I didn’t even question whether he could be sick until when I heard his diagnosis about 6 months after he’d left the company.
  - jgrahamc 7y ago
    I was walking down a street in London when you called me to tell me about the diagnosis. I stopped on a street corner (corner of Adeline Place and Bedford Avenue) and talked to you. Everything I'd seen Lee do and especially some of the last meetings I had with him at work that were so difficult and I kept wondering why he seemed like such a jerk, all that suddenly made horrifying sense. I felt so awful for my own reaction to him. And guilty.

qchris 7y ago

While obviously neurodegerative disorders manifest somewhat differently for everyone, I have some anecdotal evidence pointing the opposite direction. I've known people starting to undergo dementia (as a general term, may have been Parkinson's, etc.) that were aware of their decline. I think the most common example of that was the feeling among them that "I used to be able to do this..." I'm by no means qualified to make any actual statements about this case, but I don't think that the ability to reflect on degradation is perfectly coupled with a lack of it.