[HN Gopher] What Happened to Lee
___________________________________________________________________
What Happened to Lee
Author : jgrahamc
Score : 552 points
Date : 2020-04-15 14:31 UTC (8 hours ago)
(HTM) web link (wired.com)
(TXT) w3m dump (wired.com)
| Igelau wrote:
| And people don't understand why I fell into a two week
| existential crisis after I saw 'The Notebook'
|
| > many of the neurologists who study it believe it is
| underdiagnosed
|
| This is a tragedy. Of course it's underdiagnosed. Everyone around
| you would just think you're an asshole. In the article, it sounds
| like so many people fought right and were patient and loving. How
| many cases do we never hear about, get fought abusively, and push
| the last shattered remnants of a person into drugs, suicide, etc.
| mh- wrote:
| > And people don't understand why I fell into a two week
| existential crisis after I saw 'The Notebook'
|
| Thank you. I watched that movie with my wife 15 years ago, now,
| and it remains the scariest, saddest movie I've ever seen.
| broooder wrote:
| Flowers for Algernon
| hn_throwaway_99 wrote:
| Perhaps this is too philosophical, but for anyone who has dealt
| with someone with a long decline into dementia, it's very
| difficult for me to understand a belief in God after going
| through that (I certainly understand some people have the exact
| opposite reaction, so I'm in no way saying this belief is
| correct).
|
| It's just difficult for me to envision a crueler God if that is
| indeed the case. A person who has died long before their body
| gives way, only to be a constant burden, with virtually no joy,
| and a constant reminder that your loved one is dead, yet still
| here.
|
| In the worst cases I say unreservedly that it is a huge relief
| when the person's body finally joins their mind in death.
| tylershuster wrote:
| I truly feel for your loss. Two of my grandparents have gone or
| are going through dementia.
|
| I don't think that this has any bearing on the existence of
| God, however. Humans are the ones who have created such an
| overwhelming and toxic physical environment and disconnected
| social one. For God to truly endow us with free will, He had to
| allow us to fail, even this miserably, and to cause our
| contemporaries and descendants to suffer for our failures. We
| have the hope of Christ's return and eternal life but only
| after everyone has been given the opportunity to turn to God
| for hope on earth.
|
| I don't mean to prosthletize -- this is how I understand the
| world and helps keep me hopeful in times of grief, and I hope
| it helps you too.
| fellowniusmonk wrote:
| If freewill is so sacred why does the OT and NT have so many
| examples of freewill being removed? Like in 2 Kings 1:10 and
| other places, if God is fine with freewill being ignored, and
| God never changes, then he can act, and if he can act would
| he not be considered unjust by Jesus words in Luke 18:1-8?
| Not a gotcha or academic question, just something on my mind
| recently.
| tylershuster wrote:
| I'm not positive that the 2 Kings example is exactly free
| will being removed, because Elijah asks God for what
| happens, and God does respond to prayer (praying with faith
| is another issue).
|
| But I do see what you're asking -- how God seems to step in
| more often in the OT. Thinking of all of human history from
| ~4000BC until now where Mankind "grows up" over time, the
| concept of God as Father works -- parents put a lot of
| restrictions on their kids when they're young to keep them
| safe, and remove those restrictions over time. Even if the
| child does something unsafe at a certain point a parent
| just has to say "now that you know the consequences, you
| have to live with them."
| fellowniusmonk wrote:
| I mean the people who got torched had their freewill
| removed without warning, death by direct action of God.
| The issue is not with boundary setting, the issue is with
| Jesus seemingly calling himself (God) unjust, since
| freewill doesn't seem like an inviolable issue, if God
| doesn't have a hard restriction on effecting freewill
| (which seems to be the case) then he is seemingly the
| same as the unjust judge? I understand the argument from
| Job that people aren't to question God because we are
| simple clay to him, or the argument that people are evil
| and deserve nothing less than eternal suffering, but
| since Jesus set the expectation and made the connection
| directly in Luke it seems like a non-upheld internal
| measure/standard of God's own?
| Trasmatta wrote:
| > Humans are the ones who have created such an overwhelming
| and toxic physical environment and disconnected social one
|
| This argument isn't really theologically sound. If God
| exists, he's the one that created a biological system that
| allows for something as horrific as dementia. That literally
| has nothing to do with anything humans have done. It's
| pointless suffering.
|
| > and to cause our contemporaries and descendants to suffer
| for our failures
|
| Who's failures caused dementia? Certainly wasn't our
| ancestors fault.
|
| Personally, I gain more comfort from the idea of an impartial
| universe, than a God who thinks this level of suffering is
| necessary.
| wazoox wrote:
| The weirdest thing was when in one of Oliver Sacks' book (maybe
| The Man Who Mistook His Wife for a Hat), after countless
| stories of people losing their personality, their mind, almost
| their humanity in some cases, he talked about his continued
| belief of the existence of an immortal soul, when I precisely
| myself find his stories vivid evidences that such a thing as a
| "soul" is a complete absurdity and an illusion.
| yters wrote:
| It's a very strange thing. For instance, the Bible is full of
| horrifying events, and the life of Jesus, a seemingly innocent,
| well intentioned man who is crucified in an excruciating death
| for no good reason, also seems to be in line with denying the
| existence of a good God. In fact, Jesus seems to agree with
| this in his last moments on the cross, saying "my God my God
| why have you forsaken me?" It is very mysterious why one of the
| world's largest religions has its foundation in such God
| denying aspects of reality.
| m3kw9 wrote:
| Shouldn't have an expectation of god making everything well.
| Otherwise there's be no war. If that is your requirement to
| believe in god, you will never
| Koshkin wrote:
| If I start with God, any conclusion I will care to make will be
| true.
| ProAm wrote:
| G-d is a human construct.
| mensetmanusman wrote:
| Great question. Lots of history on this topic, here is an
| interesting overview in regards to the Lisbon Earthquake[1]:
|
| https://youtu.be/vx8ZMkWL8hw
|
| [1] https://en.m.wikipedia.org/wiki/1755_Lisbon_earthquake
| [deleted]
| hwc wrote:
| If God exists, they are cruel and uncaring.
| lpah4all wrote:
| The universe exists to give us the opportunity to be selfless
| caregivers for our fellow human beings or be callous or even
| predatory towards those we deem "other" or "lesser". This why
| we each are born with a sense of morality, however molded
| from culture to culture and manifest from person to person,
| except in the rare cases of people, like Lee, that have
| physical pathologies that hinder it.
|
| The non-pathological of us each have the free will to choose
| to self-evolve ourselves during our lives towards greater
| compassion for _all_ those around ourselves, or to selfishly
| gather as much material pleasure as we can for ourselves
| regardless of the cost to others, be it monetary, emotional,
| or physical.
|
| We are _all_ actively evolving ourselves every day of our
| lives, for better or worse, even if all it amounts to is
| repetitively strengthening one 's already accepted habits and
| attitudes. The exception being when disease or tragedy takes
| away our ability to rationally choose, as happens with people
| such as Lee. That is where compassion from our fellow human
| beings is part of the potential we must each welcome, for
| such is the moral requirement of being a human being.
|
| We have been given what is both a great gift and a great
| responsibility with our free will and the mind required to
| learn and wield it justly and for the benefit of the whole
| and not just some preferred sub-group.
|
| God is not a white man (full-disclosure: white guy here); It
| didn't give us free will only to then take it back from us
| because that means we can become, for example, callous, self-
| serving, corrupt, power-seeking, hypocritical fake-Christian
| deceivers of men.
|
| No. The polarity of our morality extends to whichever
| direction the person can imagine. That is why we are both
| treasured above all creation and capable of the most brutal
| of atrocities.
|
| We are free to be good or evil and that means we are also
| free to not give a fuck.
| adamc wrote:
| Unproven. Maybe just not micro-managing. Maybe they enable
| life, and watch to see where it goes.
| claudiawerner wrote:
| This is known as the "problem of evil" and has intrigued
| philosophers and theologians for centuries. There are quite a
| few responses to the problem[0] though it's up to you to
| decide if they're convincing or not.
|
| [0] https://en.wikipedia.org/wiki/Problem_of_evil#Responses,_
| def...
| ardy42 wrote:
| > If God exists, they are cruel and uncaring.
|
| I don't think anyone has the perspective to make a definitive
| judgement like that. The situation could be like a young
| child judging his parents to be cruel and uncaring for making
| him go to school, which he dislikes. There could be unknowns
| that would change the judgement if understood.
| Trasmatta wrote:
| It feels a little bit condescending to compare the amount
| of suffering caused by things like dementia to an unruly
| kid who doesn't want to go to school.
| ardy42 wrote:
| > It feels a little bit condescending to compare the
| amount of suffering caused by things like dementia to an
| unruly kid who doesn't want to go to school.
|
| It wasn't a comparison, but an attempt to illustrate how
| things may look different based on your knowledge and
| understanding. Obviously such an illustration is going to
| be trivial compared to the real thing, since you have to
| substitute something simple that everyone knows for
| something no one does.
| Koshkin wrote:
| Not more than people. On the other hand, anything you write
| after that comma would evaluate to truth.
| tarsinge wrote:
| Not if suffering on earth is put in the context of an eternal
| afterlife of joy coming after. You cannot dissociate the two.
| HoveringOrb wrote:
| Not necessarily. He/she/it/they could be limited in their
| capabilities or working under unguessable design constraints.
| lpah4all wrote:
| Every person is a door to your happiness, and you have the
| choice to serve their happiness or to treat them callously or
| even cruelly.
|
| There is no religion without the person actively trying to be a
| better person to every single person around them. It doesn't
| matter what spiritual practices they do or don't do, we are
| each measured by our hearts with respect to how we treat every
| person we encounter.
|
| Religion's only goal is to get us to work together
| cooperatively across all divisions of humanity (from form of
| religion, to gender identification or sexual preference, to
| ethnicity or culture) to create caring, accepting societies.
| Right now, our world's state is the result of our societies
| being based on competition. That is why there are so many
| destitute homeless people. The system itself doesn't give a
| shit about them because the system itself only cares about
| money.
|
| And this is all the result of human making choices based upon
| their selfish desires, humans in their packs taking as much as
| they can for themselves while callously ignoring out-group
| members. That is not human, and is literally inhumane. For that
| same society to produce Jeff Bezos demonstrates its brokenness
| that is also its design.
|
| The problem is that the vast majority of so-called religious
| folks are only doing so to be a member of the alpha group,
| instead of being interested in how they can be a better member
| of a better, all-inclusive society. We have mammalian bodies
| and those structures inform our potentials. To be human is to
| rise above that animal heredity and embrace the virtues of
| humanity: caring, active, effortful compassion being essential.
|
| This is why a prominent Rabbi spoke at Muhammed Ali's funeral.
| They were both Men of God who spread love and unity amongst and
| between their different cultures. Anywhere you find universal
| love and respect for _all_ others, you find God 's Religion,
| whichever form it takes in its society.
|
| And legion are those that selfishly deceive in the name of
| religion or even try to create their own religions. The child
| rapist Catholic Priest does not denigrate the Message of Love
| present in Jesus' form of God's Religion; he only proves his
| perfidy and that of the organization that hides his sins and
| felonies from his prey's society.
| Koshkin wrote:
| The True Scotsman, I know...
| lpah4all wrote:
| Well, correct me if I'm wrong, but words have meaning and,
| as a father-to-son Scotsman, I'm _pretty_ fucking sure that
| a Scotsman has to have some branch of their ancestry come
| from Scotland.
|
| Also, a priest can't honestly say they love you and serve
| Jesus if they're raping your children in the back room.
|
| There is truth and there are lies and falsehoods. Nuance is
| required to discern between them. Most people are just too
| intellectually lazy to even try. That ignorance leads to
| many of the systemic problems of our world, not the least
| of which are religious groups like ISIS/ISIL and the
| Catholic Church deceiving people with their lies,
| hypocrisies and oppressions.
|
| Dunning & Kruger, dude. I know where you land on the chart,
| _and_ I know that you don 't know where you land yet think
| you do.
| david_w wrote:
| Not to be cruel, but the preexisting, running total of human
| suffering and tragedy in this world points to the fact that
| transcendent reality, the realm of God or a God, must have an
| alternative interpretation for human events, one which humans
| cannot fathom.
|
| So for example, the tragedies which occur in your nightmares,
| after you wake, are given a different interpretation- the
| interpretation of "non-reality", i.e. it didn't really happen
| in some basic way that puts them into the category of "life
| non-tragedy".
|
| From God's (or "a god's", for our dedicated atheists) POV,
| there is some enclosing context to the events of our lives that
| makes this mess we call reality "make sense". We don't have
| that perspective, so we think we suffer, pointlessly.
|
| Along the chain from amoeba to goldfish to humans the
| understanding of events in our shared environment by each
| species changes. We think of that change as progressively
| achieving a "deeper understanding" of reality. The zinger in
| this recitation of prosaic facts is: _your consciouness is not
| the last one in the chain_.
|
| This is what Christians experience (and think of) as "faith".
| Faith in the wisdom or sense-making of a transcendent God and
| His plans.
| Igelau wrote:
| > the preexisting, running total of human suffering and
| tragedy in this world points to the fact that transcendent
| reality, the realm of God or a God, must have an alternative
| interpretation for human events
|
| You're begging the question. It doesn't point to that at all.
|
| Furthermore, I'd feel terrible accepting that "fact" if I
| were faithful. It would reduce my faith to that in a demiurge
| who can't (ergo impotent) or won't (ergo ignorant or
| malicious) build/maintain a reality that (1) makes sense in
| the enclosing context and (2) doesn't require the depth of
| horror and pain for its components/participants that this one
| does.
| abbadadda wrote:
| Aren't there more than two explanations for "won't" beyond
| (1) ignorance or (2) malice? Perhaps we are the ones who
| are ignorant for why things are this way.
| Igelau wrote:
| Barring either of those, see "can't".
| chromanoid wrote:
| Exactly, unless one sees the suffering of others as
| suffering of NPCs or punishment for a former life, I cannot
| understand how one can believe in a benevolent omnipotent
| god. The cruelty that some have to endure is simply not
| explainable with a such a god. It cannot be benevolent AND
| omnipotent by definition. It becomes far far far more
| likely that there is simply no such a god. It's not like
| this dilemma is new so there should be a better explanation
| by now.
| cyber_zhuangzi wrote:
| It's a deep problem with a long history of attempts at
| answering it, some more satisfying than others. One
| answer that appeals to many faithful is the idea that all
| this suffering will be "redeemed", or made to be worth it
| at the end. Augustine, for example, would take the "NPC"
| prong of your dilemma by saying that our earthly
| existence "in time" is not a full experience of reality
| at all. Indeed, you can find this view, that our
| conscious experience of reality-in-time is somehow
| illusory, in many non-Christian sources anywhere from
| Buddhism to Daniel Dennet. In Augustine's view it's only
| outside of time, with God, that human beings can fully
| exist - thus earthly suffering is nothing compared to the
| joy of being in Heaven. Obviously this is not a foolproof
| argument, but HN deserves to know the best answers
| Christian thinkers have come up with.
| david_w wrote:
| All religions have a mystic branch which describes an
| awareness , usually transient, of a higher order to
| reality in which the suffering of people is "redeemed" or
| put into perspective or somehow negated.
|
| One interesting thing is that the language and imagery
| used by the mystics of these different and separated
| religious traditions are often indistinguishable from
| each other- it's not clear if it was St. John of the
| Cross or Augustine or Zen Masters Ikkyu or Dogen who is
| saying them.
|
| On thing they refer to in this transcendent reality is
| apprehension of "the coincidence of opposites". So for
| example, the obvious fact that a thing cannot both be and
| not be at the same time is itself contradicted or
| "resolved". In logic we say "not both A and not A" (or
| else a contradiction is permitted and from there
| literally anything can be proven).
|
| If I were a goldfish, no matter how right the math you
| read to me was, I would not understand it, you or
| anything it referred to. Even as the atomic bomb it
| described exploded, I still would not understand the
| nature of reality which now quite literally impinged
| itself on my flesh.
|
| What would it feel like to be confronted with that kind
| of knowledge? Would we recognize some formulation of it
| but reject it, as in: both A and not A?
|
| Would it be something impossible, existing outside of
| what appears to us to be exhausted possibilities?
|
| Not A Not not A Not both A and not A Not not both A and
| not A. etc?
|
| We can feel the limits of our own thinking when we reach
| something which is logically impossible. We just can't
| get our thinking around these things; contraditions seem
| like an absolute dead end, leading everywhere and
| nowhere.
|
| Are there things in our lives which we literally
| experience, like an atomic bomb disntegrating a goldfish,
| which even as they touch us and we feel them, we simply
| fail to comprehend the "real" meaning of them? The
| breeze? A look? A birth? Suffering?
|
| Spirtual insight may be a thing like mathematicqal
| talent- some people have a talent for it and some people
| don't. Such a talent may be completely disconnected from
| normal intelligence. To people who don't have it, it
| seems like garbage, i.e. self-contradictory, self-
| pacifying wishful thinking.
| Igelau wrote:
| > earthly suffering is nothing compared to the joy of
| being in Heaven
|
| Now the demiurge is a utility monster.
|
| > this is not a foolproof argument
|
| Argument? It's an admission.
| cyber_zhuangzi wrote:
| > Now the demiurge is a utility monster.
|
| How is the demiurge taking utility from humans if humans
| ending up in heaven is the optimal outcome for both
| humans and diety?
|
| > Argument?
|
| It's an argument that a diety can both be omnipotent and
| benevolent if humans don't know true pain or pleasure in
| their earthly lives. After all, both earthly pleasure and
| pain are temporary, so if you can conceive of eternal
| happiness it might render earthly suffering negligible in
| comparison.
| chromanoid wrote:
| It always seems to me that faithful people just don't
| confront themselves with the suffering that is happening
| and has happened. When you know about such events it
| seems to me to be either a lame escape or maliciously
| ignorant to claim there might be a god who sees the big
| plan and is still omnipotent. When there is not even a
| glimpse of a reason for certain acts against children I
| refuse to accept any far fetched esoteric excuse.
| toyg wrote:
| This is a question as old as religion, of course, with plenty
| of answers of all sorts: because He has a plan we cannot see,
| because He is punishing you/us/him, because He is testing
| you/us, because The Evil is really responsible, etc etc...
|
| In the end, is it really that cruel, when compared to creating
| a universe that is effectively trying to kill us all every
| single day...? From animals and plants in the jungle, to solar
| flares and asteroids, everything in nature is to us what a
| garrison of armed Stormtroopers is to Han Solo: they might miss
| most of the time, but it's not going to be for lack of cruelty
| or intent.
| PNWChris wrote:
| I have no wisdom to share, and certainly no opinion on higher
| power that I would consider profound. What you describe is an
| unbelievably trying experience.
|
| If you are hoping to make some sense of it all, I found Man's
| Search for Meaning by Viktor E. Frankl really altered how I see
| suffering and my place in the world. It's a very concrete book,
| and outlines a way to live with meaning without needing God
| (though totally compatible with faith).
|
| Stay strong friend, I believe in a tragic optimism[0] like that
| outlined in Frankl's 1984 postscript.
|
| [0]: https://www.goodreads.com/quotes/6807951-i-speak-of-a-
| tragic...
|
| edit: corrected the quote and added a link
| Igelau wrote:
| I'm sorry you had to watch that happen to someone on the long
| decline. Occuring alongside a number of other conditions, my
| mother's dementia only ran a brief course before she passed
| away. That brief window was terrifying and heartbreaking. I
| understand some of the relief you mentioned. It felt like a war
| had ended.
| asdf21 wrote:
| IMO this is why brain scans should be more common / part of a
| normal physical every few years.
| jeffrallen wrote:
| Thank you Lee. Happy travels, until the sunset.
| daenz wrote:
| The question that occurs to me is: if you knew that was in your
| future, would you spend your last 10 good years toiling at a
| startup?
| renewiltord wrote:
| Yes. It would probably make me do so harder because it's my
| life's work and I have only that much time to do it.
| reuben_scratton wrote:
| Yes. His family are financially secure, thanks to his
| Cloudflare millions. I could die much more easily knowing my
| family were safe after I'd gone.
| libria wrote:
| That's the answer to "Would you spend your last 10 years
| securing a guaranteed multi-million dollar payout?" not
| "Would you work your tail off for a gamble?"
|
| Startup != assured success.
| daenz wrote:
| I should have been more specific with my hypothetical. I
| only meant having knowledge of the disease, not of any kind
| of startup mega-success.
| djohnston wrote:
| 10 good years is a long time. As a founder I would guess he
| truly believed in the mission, at least before FTD took hold,
| and I think that kind of pursuit would be more fulfilling than
| a 10 year vacation.
| phaedrus441 wrote:
| When I was a medical student on my psychiatry rotation we had a
| patient who was a history professor at a local college. He was
| actually admitted to the hospital after reporting himself for
| molesting his neighbor's children, but this was investigated and
| turned out to be impossible. Nonetheless, he was convinced he had
| done it, and was very impulsive and saddened by it (he would
| tearfully confess over and over). In the end, we imaged his brain
| and diagnosed him with frontotemporal dementia. The most
| strangest aspect was that you could look on rateaprofessor.com
| and see how he gradually changed over the semesters. I remember a
| comment saying that he came in on day one, told the class they
| would all get A's, and left without coming back for weeks.
| andmarios wrote:
| The behavior described in the article can be seen in all dementia
| patients.
|
| The article is written like it is a rare and unfortunate story
| which we watch from the sidelines, but only the age of Lee makes
| it unique. Many of us will experience exactly the same with a
| beloved one ( probably a parent, maybe a significant other).
|
| Every single part of the story except the age, all the changes in
| the behavior --small and large--, how hard it is to live and/or
| manage someone with dementia, how difficult it is to come to
| terms with it, etc, happens to an awful lot of people. It's just
| that it's not a subject people talk easily about.
|
| Last but not least, doctors are often the worst offenders in the
| progress of this disease. Most doctors only care about the "now",
| solve the problem at hand, send the patient home and be done with
| it. Surgery, psychotropic drugs and other forms of treatment can
| speed-up dementia progress. Alas, there is no incentive to
| research, document and act on this.
| kick wrote:
| This is horrifying.
|
| _Conversations soon became impossible. Lee started chattering in
| repetitive, unceasing loops. He would tell Kristin: "We met at
| Cloudflare. We got engaged in Rome. We got married in Maui,
| Hawaii." He repeated it hundreds of times a day. Then the loops
| got shorter, more cryptic. He spoke fewer sentences, instead
| muttering sequences of numbers or letters._
|
| At the same time, given the flashes of lucidity pointed out in
| this article, you have to wonder if others talking about his
| condition so much might make him feel like a walking corpse when
| those hit.
| eastdakota wrote:
| It was incredibly sad to watch. The last time I saw him while
| he was still speaking -- he is still alive but doesn't speak or
| seem to recognize me anymore -- he would repeat the same
| questions from the same conversation in the same order on a
| 30-minute loop. Over and over.
|
| I've really struggled to wrap my mind around his condition. I
| don't think it's frustrating for him. He seems to have lost the
| emotion to be frustrated.
|
| I think we all have a sense of Alzheimer's because we've all
| forgotten something. This isn't that. Lee's memory, if
| anything, seemed to improve and he'd bring up little details
| from when we first worked together I'd long since forgotten.
| What seemed to go away was his ability to process those
| memories into something more.
|
| It's hard to imagine losing the ability to imagine. And, as his
| friend and colleague, it was incredibly frustrating when we
| just thought he was checked out. And then devastating when we
| learned all this time he'd actually had a disease.
|
| I do wonder if some of his genius came from his ability to shut
| down some of the other noise in his life. And if the disease,
| for some time before it became debilitating, was almost a
| superpower. I've never met an engineer like him.
|
| I miss him every day.
| jamestimmins wrote:
| I'm sorry for the loss you and his other friends/loved ones
| have experienced.
|
| Do you feel like the article was accurate and fair to the
| people involved?
| eastdakota wrote:
| Yes. Very. It was important to me and Michelle that it be a
| tribute to Lee's genius and contribution to Cloudflare. We
| spent a long time looking for the right reporter and
| publication. Wired seemed appropriate given Lee's love of
| technology. And Sandra was a total class act. We opened up
| fully to her, spending nearly a year letting her get to
| know us. Lee's family was incredibly giving of their time.
| It takes a really talented and empathetic writer to have
| people feel safe and to open up to such a personal story
| like they did.
|
| I got the advance copy of the article last night and it's
| been an emotional 12 hours reliving a lot of the last 18
| years I've known Lee. But I'm happy we helped create
| something Lee's two sons will be able to read and see a
| little bit of what an incredible person their dad was.
| jamestimmins wrote:
| Thanks for sharing that. It sounds like first and
| foremost, everyone wanted to do right by their friend.
| That alone is touching, and I'm glad that the final
| article was the tribute you all hoped for. It was
| heartbreaking and beautiful, and was an honor to be let
| into the lives of everyone involved.
|
| My prayer is that while this time is emotional, the
| process and article also provide a degree of healing as
| well. Again, thanks for sharing.
| hkmurakami wrote:
| Thank you for this post. It reminded me of the one line
| in "General Magic" where Marc Porat tells the documentary
| producer that the reason he agreed to make himself very
| available and open for the film was so that his
| (presumably somewhat estranged) children can get to know
| him and the story and the work they did, better.
|
| Terribly sorry for you and your friends and colleagues'
| loss. Thank you and everyone else for doing this for his
| children.
| scott_s wrote:
| Thank you.
| synaesthesisx wrote:
| This was one of the most incredibly tragic and moving
| pieces I've read recently, and serves as a reminder of
| the fragility of consciousness and being. Thank you for
| sharing his story.
| thephyber wrote:
| > I do wonder if some of his genius came from his ability to
| shut down some of the other noise in his life.
|
| Yes. I can think of a few examples of this.
| caleb-allen wrote:
| Can you expand?
| radicalbyte wrote:
| The thought of someone I love (in the broadest sense of the
| word) being affected by this is horrific. I'm really sorry
| for his family and friends :(
|
| I think that you're kind of right: I know one engineer who is
| like that and he it's his autism which makes him brilliant.
| He could operate in deep-thought mode all the time - he is
| extremely intelligent and extremely focused. There are other
| people who can hit it for patches - I could do it for 3-4
| weeks at a time when I was 21. At 39 I struggle to do it for
| an hour a month (kids change you more than anything else).
|
| We really know so little about how our minds and bodies work
| and that's something we need to change. We should be able to
| identify and fix conditions like this.
|
| Makes me think that some of us here are wasting our abilities
| on start-ups and systems when we could be working on fixing
| much more complex systems.
| HeyLaughingBoy wrote:
| Life is short and slips away quickly. Use your abilities to
| further the things that mean the most to you, not on a
| possibly misguided sense of what you "should" be doing.
| kick wrote:
| _Makes me think that some of us here are wasting our
| abilities on start-ups and systems when we could be working
| on fixing much more complex systems._
|
| This can go in the wrong direction. Nobody wants to be
| McNamara, though being Zuckerberg isn't that bad.
| shrimp_emoji wrote:
| TL;DR: frontotemporal dementia
|
| >Holloway received his death sentence with pure calm. While his
| family cried beside him, he complimented a doctor for having a
| nice wedding ring.
|
| xD
| [deleted]
| garganzol wrote:
| Could it be that Lee's productivity frenzy eventually led to this
| disease?
|
| I tend to practice the same style of getting things done during
| crunch time. I have the same behavior afterwards. Sometimes I can
| sleep a few days in a row after making a software release. And
| yes, taking a vacation with my girlfriend sometimes took the same
| shape: she was running circles in a new city while I was chilling
| at the hotel room trying to enjoy a few rare moments of rest.
|
| Reading the whole story rang a few bells to me.
| bvandewalle wrote:
| This is one of the saddest thing I read today and a good reminder
| that life is always finite.
| billti wrote:
| > The neurologists delivered their verdict: He appeared to have a
| textbook case of frontotemporal dementia--known by the shorthand
| FTD
|
| Oh man, was that a kick in the guts when I got to that bit. My
| Dad was diagnosed with that in the past year, (after obviously
| struggling for a while), and declined rapidly. He had a different
| variant, and indeed the one thing that DIDN'T change was his
| personality. In fact, that's what kind of fooled me for a while.
| He would still trot out his usual bad jokes and regular phrases,
| but after a while you realize these are almost like reflexes, and
| often wouldn't really make sense in context.
|
| It was interesting to see for Lee how this seemed amplified after
| heart surgery. My Dad had really bad "post-operative delirium"
| for about a month after major heart surgery, and while he
| recovered somewhat, that was definitely the start of his major
| decline.
|
| Sadly, after moving into a care facility in mid-March, within a
| couple weeks he was in hospital after contracting Covid-19. He
| passed away on the 4th of this month from it. The only good to
| come out of all this was that I'd visited him many times over the
| past couple years and said "goodbye" many times thinking it might
| be the last time, even if just mentally and not physically, I'd
| get to see "my Dad", as I knew him.
|
| Apparently it is often a genetic disorder that can be hereditary,
| and you can get tested for the genetic markers. As a
| coder/manager myself who depends on my mind for work, and enjoys
| being mentally challenged and active, (and I also have young
| kids), something like this scares the crap out of me. I'm not
| sure I want to know if I might have it. For one thing, being in
| the U.S. healthcare system, if I did have the markers, would that
| then count as a "pre-existing condition" I'd have to disclose?
| wigl wrote:
| I'm so sorry for your loss.
|
| Dementia and schizophrenia are present in my family as well and
| caring for those in the later stages has been really hard.
|
| I found myself torn by the same question of whether to test for
| genetic predisposition. After reading The Gene by Siddhartha
| Mukherjee, whose author is in a similar position, I have found
| some comfort in deciding not to test for now. As he says in an
| NPR interview:
|
| > There's no one-to-one correspondence between a genome and the
| chances of developing schizophrenia. And until we can create
| that map - and whether we can create that map ever is a
| question - but until I - we can create that map, I will
| certainly not be tested because it - that idea - I mean,
| that's, again, the center of the book. That confines you. It
| becomes predictive. You become ... a previvor (ph). A previvor
| is someone who's survived an illness that they haven't even had
| yet. You live in the shadow of an illness that you haven't had
| yet.
|
| https://www.npr.org/2017/05/12/528097708/the-power-of-genes-...
| fossuser wrote:
| Schizophrenia seems like a tricky one given that its triggers
| are less well understood and trauma seems to be part of it
| (so maybe knowing would lead to increased anxiety/stress
| which could make onset more likely?).
|
| Otherwise it seems like whether or not you test the reality
| is set independent of your knowledge of it. I'd like to think
| that I'd want to test given that, but I suppose it's hard to
| know how I'd act without really being in that position.
|
| I loved his book, but I think I disagree with him on this -
| feels like a rationalization of an irrational thing.
| wigl wrote:
| My experience was similar to the author's in that I grew up
| around family members who were in advanced stages. The
| possibility of inheritance stares you in the face whenever
| they're around.
|
| If there was a conclusive test, I would definitely take it
| for the sake of future offspring. Otherwise, it would
| likely give me more anxiety than useful information.
| notabee wrote:
| CSF leaks/hypotension are also potentially implicated in
| frontotemporal dementia:
| https://journals.lww.com/neurotodayonline/Fulltext/2002/0900...
| GCSAQCMIYI wrote:
| >For one thing, being in the U.S. healthcare system, if I did
| have the markers, would that then count as a "pre-existing
| condition" I'd have to disclose?
|
| I'm sure the people who pay premiums for health insurance would
| hope so. If you already know you have a condition that's going
| to cost a lot of money to treat, you're not looking for
| insurance. If you can't pay for it yourself, you're looking for
| charity.
| tilolebo wrote:
| He's looking for health care, actually.
| GCSAQCMIYI wrote:
| Yes, and he's looking for it to be financed by other people
| while giving them nothing in return for it.
| switchbak wrote:
| I live in a country where we gladly finance the health
| care of other people without looking for anything in
| return. I really don't understand the lack of compassion
| that can ground such an ideology.
| Retric wrote:
| FYI, preexisting conditions stopped being a major issue with
| heath insurance after the Affordable Care Act (Obama Care) got
| passed: https://www.policygenius.com/health-insurance/pre-
| existing-c...
|
| Insurers cannot deny health coverage, cannot charge higher
| costs, or subject people with pre-existing conditions to a
| waiting period
|
| You may be better off getting life/long term care insurance
| before getting tested, but other than that there is little
| reason to avoid being tested.
| tcoff91 wrote:
| I don't know if we can count on the ACA staying around
| forever.
| Retric wrote:
| It survived both political parties in power. It might get
| chipped away over the next 30 years or replaced with public
| option etc, but bringing back the preexisting condition
| issue would be extremely unpopular. Also, it does not
| actually cost insurance companies much money as they can
| all just raise premiums.
| Agathos wrote:
| So you're confident that the Supreme Court will overturn
| the 5th Circuit's decision to throw it out? The Supreme
| Court will be hearing the case this autumn.
|
| And you must be confident that Trump will lose, since the
| 5-4 majority that saved Obamacare last time will not
| survive a few more Republican appointments.
| Retric wrote:
| In terms of appointments, republicans have had control of
| the Supreme Court for years. In terms of the actual
| judges and their rulings that's anybody's guess. They
| could easily remove the tax while keeping the rest of the
| law unchanged or do just about anything.
| pyuser583 wrote:
| I find the Obamacare rule about preexisting conditions
| confusing.
|
| I've been managing a chronic condition for decades, and I've
| never had coverage denied because it was "preexisting."
|
| Maybe it was only if you were buying coverage outside a group
| it would be an issue, but I don't know.
|
| Regardless I many people who had preexisting conditions pre-
| ACA, and it never affected coverage.
|
| For disability insurance, or life insurance, it's probably a
| different story.
| zamfi wrote:
| > Regardless I many people who had preexisting conditions
| pre-ACA, and it never affected coverage.
|
| This mostly affected the individual and small-group markets,
| in which a pre-existing condition either disqualified you for
| coverage, made it prohibitively expensive, or explicitly
| excluded coverage for that condition (sometimes, the
| exclusion was only for a set period of time).
|
| Typical failure modes were: individuals unable to get
| coverage on the open market; small businesses and non-profits
| that offered employees health insurance being forced to fire
| people because they got expensive illnesses and their
| insurance providers threatened to 10x their premiums; etc.
|
| It made entrepreneurship and freelancing a much harder choice
| for many (typically older-than-30) folks, especially since
| you risked getting fired & losing insurance if you worked
| alone or for a small-ish firm.
|
| Some states had remedies for these issues -- either through a
| high-risk pool for people who were rejected in the individual
| market (though often these policies had coverage limits that
| made them not ideal), or through guaranteed-issue insurance
| in the small group market (i.e., if you and a partners start
| a business, insurance companies in your area who serve small
| groups HAVE to a) insure you, b) not charge you more than 10%
| the average rate, and c) renew your insurance when it's up
| for renewal, usually annually).
|
| California in particular had both these in place pre-ACA.
|
| Ask me how I know. :/
| jdm2212 wrote:
| The Obamacare rule about preexisting conditions was
| specifically to fix the individual insurance market. The pre-
| Obamacare individual insurance market was really broken --
| you need the "three-legged stool" (pre-existing condition
| coverage, universal mandate, subsidized premiums) to have a
| functioning individual market, and that didn't exist until
| Obamacare.
| williamscales wrote:
| I'm so sorry for your loss.
| cryptica wrote:
| >> It was interesting to see for Lee how this seemed amplified
| after heart surgery. My Dad had really bad "post-operative
| delirium" for about a month after major heart surgery, and
| while he recovered somewhat, that was definitely the start of
| his major decline.
|
| That is a strange coincidence. Could changes in bloodflow have
| an impact on brain cells?
| DFHippie wrote:
| It might be the anesthetic.
| Wistar wrote:
| There has been, for several years now, concern that general
| anesthesia may have a negative impact on the brain and, in
| particular, Alzheimer's Disease but also general cognitive
| damage.
|
| Here's a 2018 piece discussing research from the Mayo
| Clinic focused on apparent anesthetic damage in patients
| older than 70.
|
| https://www.sciencedaily.com/releases/2018/07/180719112024.
| h...
| meowface wrote:
| My suspicion would be that the general anesthetic is the
| primary cause.
| billti wrote:
| I think cardiac surgery is the worst offender because they
| often have to bypass the heart while performing the
| surgery, and this can result in blood supply issues while
| diverting/restoring flow through the heart.
| madaxe_again wrote:
| I have been sedated a few times for minor procedures,
| propofol, I think, with no issues, and I've had a general
| once, for a laparoscopic cholecystectomy - about as trivial
| as abdominal surgery comes, only a few hours under.
|
| It had side effects.
|
| For the better part of a year afterwards, I kept finding
| myself unconsciously substituting completely incorrect
| words into written correspondence, I was irritable almost
| constantly, my short term memory was shot, and I had
| hallucinations and attacks of aphasia - I'd be walking down
| the street, or in the shower, or in a damn meeting, and I'd
| not only forget where I was but I'd lose object permanence
| and recognition - couldn't tell taps from cats, cars from
| shoes.
|
| It got better, over time, but there was very definitely a
| long mental hangover from it. I do have medical quirks,
| like I can't tolerate opioids (they worsen pain and make me
| vomit), and I'm a carrier of a whole bunch of degenerative
| diseases (thanks, inbred aristo dad), and when I had
| surgery I was weakened from years of still mysterious
| illness - they thought my GB was the root cause, but no -
| stress - leaving tech fixed me.
|
| Anyway. I can readily see how, with someone with a poised
| avalanche of genetic mental disorder, it can be enough to
| completely push them into the abyss.
| eastdakota wrote:
| It could be something physical. My sense was it was something
| else in Lee's case: a change in his routine. I think the
| routine of coming into work kept him in a pattern that kept
| him from deteriorating quickly (or, at least, kept us from
| recognizing his deterioration). When he had heart surgery, he
| took several months off to recover. When he returned, he
| seemed dramatically different. I also noticed a dramatic
| change immediately after he took time off for his
| wedding/honeymoon. And, after he left Cloudflare, the article
| talks about how it seemed like the effects of the disease
| accelerated. I'm not a doctor, and there very well may be
| some other connection, but my sense in this case was the
| routine of work actually allowed him to hold the effects of
| the disease off and, at those times when he didn't have it,
| those effects accelerated.
| billti wrote:
| I researched it at the time (I'd not heard of it when it
| occurred) and it is apparently quite common.
|
| A quick search finds a few hits, e.g. from https://perioperat
| ivemedicinejournal.biomedcentral.com/artic...
|
| > Delirium is associated with negative hospital outcomes
| including a tenfold increased risk of death, a fivefold
| increased risk of nosocomial complications (Inouye 2006),
| poor 1-year functional recovery, and postoperative cognitive
| decline (Saczynski et al. 2012). The long-term cognitive
| decline seen in some patients after the development of
| delirium is similar to that of Alzheimer's patients
| (Pandharipande et al. 2013). With reports of up to 50 % of
| patients over 60 years old developing postoperative delirium
| following cardiac surgery (Rudolph et al. 2009), this patient
| population poses a major burden for healthcare.
| raincom wrote:
| Late Dr. Oliver Sacks in his book "musicophilia" spent a chapter
| on Frontotemporal Dementia (FTD). That's chapter 28:
| "irrepressible: music and temporal lobes".
| epx wrote:
| Remembered me at the end when HAL-9000 said "My mind is going. I
| can feel it.". But HAL-9000 at least knew :(
| jc01480 wrote:
| The idea that we'd eventually come to a day when we can no longer
| see ourselves. That is hell for most, a gift to few.
| DeathArrow wrote:
| Although the brain is one of our most important organs it seems
| we neglect it the most. It seems appropriate to also get a brain
| check when we do our regular health checks, but most of us don't.
|
| We spend lots of money on medical research but tiny amounts on
| researching brain illnesses. I'm not saying that we should spend
| less on other medical conditions - that's not such thing as an
| unimportant disease, but we should do much more towards
| ameliorating brain diseases.
| rurban wrote:
| What they are describing, at least in the first 70% of the story,
| is typical for a creative developer becoming an admin or
| maintainer, simply becoming an obnoxious asshole. It's the job,
| not some illness, mostly.
| weakfish wrote:
| Bad taste, friend.
| antonzabirko wrote:
| I hope they tried supplementing with herbals like Lions mane or
| anything that stimulates nervous cell growth.
|
| Also he lost a lot more than his self here. Terrible condition.
| throwaway29303 wrote:
| I just finished reading this and I'm weeping. I'm so sorry.
| meowface wrote:
| So sad and bleak to read.
|
| Are there any remotely promising paths to treating or preventing
| neurodegenerative diseases like these in the future? Or at least
| to slow down the progression? Are there any experimental drugs?
| Will we likely just need to wait until targeted in vivo genetic
| engineering is understood and mastered?
|
| I know those are broad questions, but suffering from something
| like dementia, Alzheimer's, or Parkinson's, or having a loved one
| suffer from it, seems like one of the cruelest fates imaginable.
| The helplessness of the doctor saying there's basically nothing
| you can do other than to try to eat healthy and exercise... If I
| was given such a diagnosis while still lucid, I think I would
| want to try every experimental treatment available, if any exist.
| I'd accept almost any risk over that horrifying, inevitable
| outcome.
| antonzabirko wrote:
| A cocktail of neural herbals, exercise, meditation, extra
| therapy - I hope he got all these early on.
| meowface wrote:
| That's basically what the doctor said, though. I personally
| doubt those slow it down very much. I also think the science
| is still so poorly understood that certain supplements or
| foods could potentially even worsen things. (Just to throw
| out a totally made up scenario, maybe some compound found in
| some plant, and its metabolites, cause a small increase in
| monoamine release. This may be perceived as a mild
| stimulating effect in healthy people, but could
| hypothetically potentially speed up some feedback loop which
| leads to faster neuron death in people with certain
| neurodegenerative diseases.)
|
| Exercise and healthy eating is probably still a good idea,
| but basically it just seems like hoping for the best without
| real knowledge of what may or may not be helping or hurting.
| noir_lord wrote:
| I have a chronic neurological condition that may eventually
| affect my ability to walk (though it is stable and the current
| prognosis is good and the drugs work for the pain) but when I was
| going through the process of finding out what it was and how bad
| it was the one question at the front of my mind was "will this
| affect me mentally?", I could live with the thought I may one day
| need a wheelchair but I don't think I could live knowing I was
| going to lose my essential sense of self.
|
| This is a beautifully written article but it hit me pretty hard,
| I can understand the terror having faced it for a few months, I
| think if I got a diagnosis of dementia I'd head to Switzerland at
| the point where I still could.
|
| My heart goes out to Lee and his family.
| bitwize wrote:
| Losing your mental faculties is a profound fear especially for
| smart people. After falling down stairs in the early stages of
| his ALS, Stephen Hawking went to his local Mensa center to take
| an IQ test to make sure he was still "all there" and smart
| enough to do physics.
| sourabhforu wrote:
| Tragic. Hope you live your life to the fullest Lee. And thanks
| for making the web safer.
| kemonocode wrote:
| Neurodegenerative diseases scare me out of my wits. All I can
| hope is whatever takes me is swift, or at the very least leaves
| my mind intact. Regardless of who you were and how rich and
| famous you might be, all what matters is what you'll be.
| [deleted]
| thesz wrote:
| I'd like to add to discussion [1] which shows relation between
| stress and autoimmune disease, [2] (Russian) case study of a
| Russian businessman who burned out (lost a part of cortex due to
| autoimmunte disease) and [3] encephalitis provoked by emotional
| stress.
|
| [1] https://www.health.harvard.edu/blog/autoimmune-disease-
| and-s...
|
| [2] https://www.forbes.ru/karera-i-svoy-
| biznes/392253-kukushechk...
|
| [3] https://www.shmabstracts.com/abstract/stress-is-the-
| enemy-a-...
|
| And he was clearly overworked, by my guess.
| garganzol wrote:
| It is also known that stress increases white blood cell count
| [1] which is essentially a mechanism behind autoimmune
| manifestations.
|
| Overwork leads to a stress. No wonder useful body cells can be
| attacked producing a whole range of resulting diseases.
|
| The risk of a heart attack also significantly increases when
| white blood cell count gets high as their presence fuels
| inflammatory processes in obstructed blood vessels. Eventually
| this may lead to a full occlusion which is essentially what
| heart attack is.
|
| [1] https://carrington.edu/blog/researchers-discover-link-
| mental...
| devenson wrote:
| I know someone with this disease as well. The saving grace seems
| to be that he doesn't seem to notice his own ongoing demise. He
| was fired from work and divorced from his wife before the
| diagnosis, so obtaining coverage from work has required lawyers
| and is still unresolved. His care is expensive. It's such a
| tragic story because this happened in the prime of life, and like
| the article said the adverse behaviors were initially thought to
| be a mid-life crisis.
| vikramkr wrote:
| It's a tragic story. In some way, he'll live on in his
| contributions to a better and safer internet, for whatever that's
| worth. Thank you for your contributions, Lee, and I hope you have
| the best life you can.
| dhruvarora013 wrote:
| I'm so sorry for your loss. This hit especially close to home
| because my grandmother has been suffering from degenerative
| mental disease for the last few years. I don't live in the same
| country as her anymore and every time I return, it's horrifying
| to witness just how fast a person loses their sense of "self".
|
| I think degenerative mental disease like the one here is
| especially traumatizing since to most of the world, you're
| physically/visually still the same person. Also, the
| characteristics that formed your personality often morph into
| these harrowing alternations - in the case of my grandma - she
| was always immensely active and always on her feet. She now
| cannot sit for more than 30 seconds at a time and attempts to run
| away from home (with no particular destination in mind). She was
| (it feels strange to write past tense here) a great cook but now
| she enters the kitchen and has no idea what she's cooking or what
| step she is on. It is extremely difficult to keep her mind at
| ease at all. Her mind is so unable to focus or string thoughts
| together that she has resolved to loud abject shouting of
| gibberish (much like a toddler) since she has no idea how to
| convey what or how she got somewhere. But then for the briefest
| of moments she has complete lucid clarity and will ask me about
| my job and life, and offer to cook me my favorite dish.
|
| Much like Lee's wife, I don't really know when my grandma's last
| "real" day was and what my next trip is going to bring sadly.
| It's a sad and slow torment.
| djohnston wrote:
| devastating to read. any decline into dementia is a tragedy but
| in your 30's? taupathies suck.
| zellyn wrote:
| My father-in-law has FTD. I was just a few paragraphs into the
| article before I started wondering.
|
| Search the NYTimes for "Frontotemporal Dementia", and you'll find
| several stories, all similar :-(
| mensetmanusman wrote:
| I come from a family of extremely gifted visual thinkers (PhDs
| from MIT/Stanford/etc) and in the last year one of us had a heart
| issue that coincided with a month long bout of psychosis, where
| dream-like real visualizations were overlaid onto the real world.
|
| I'm convinced that the genetic effects that provide us with
| extreme visualization and problem solving skills are related to
| this particular failure mode, where schizophrenia is also common
| in the family tree.
| basch wrote:
| The ability to make strong abstract connections transforming
| into misassociations?
|
| I think about this one a lot, how easy it is for pattern
| recognition to misfire and synthesize conclusions and
| connections that are partially rational and correct, but with
| one bad piece of input data skewing them into fantasy.
| Sometimes the conclusion may be right, but its magnitude,
| impact, or applicability are grossly overestimated. Part of
| what makes such gifted people is the ability to imagine,
| hypothesize, and use hypotheticals. This giftedness often
| coincides with the ability to make many parallel what if
| thoughts and identify the most probable. At some point,
| hypotheticals morph into faith and what was once a thought
| experiment becomes belief. What ifs break down into belief
| "this is actually happening, this is reality." It becomes its
| own compounding feedback loop, as faulty conclusions layer on
| top of each other over time.
| bobblywobbles wrote:
| You are likely right, this is a fascinating insight.
| meowface wrote:
| Yes, evolution often seems to result in these sorts of trade-
| offs. It seems pretty rare to get a genetic "free ride", so to
| speak. It's like different ways of balancing the same equation
| using the same resources.
| JamesBarney wrote:
| I don't know if abstract problem solving is related to
| schizophrenia but genes that increase schizophrenia risk are
| generally correlated with lower iqs.
|
| Saying this as someone whose mother scored in the top 1% on the
| SAT and was schizophrenic.
| s5300 wrote:
| If this story moves you, and you have the means, consider
| donating to CSF Leak research at Stanford.
|
| Cerebrospinal Fluid Leaks are something that can completely mimic
| a large amount of FTD symptoms, and even in the care of utmost
| professionals, can be near undetectable - and somehow, treatment
| can be as beautifully simple as a one and done injection... to a
| hellish guessing game and years of attempts. As Dr. Ian Carrol of
| Stanford's research has indicated, they seem to be highly
| misdiagnosed/undiagnosed as well.
|
| I know HN has had posts about CSF Leaks before. I truly believe
| they're one of the worst things we face in this age that can
| actually be treated with 100% recovery in some cases. However,
| for far too many, that really means nothing as they'll be sent to
| a psych facility, nursing home, or become homeless, and die as a
| whithered husk of what was once a human before they have the
| slightest indication of what is actually wrong with them, let
| alone make their way to one of the few places that truly treat
| the condition.
| rubicon33 wrote:
| How DOES one get diagnosed for this? Is there a test?
| atmanthedog wrote:
| I had a CSF leak repaired by Dr. Schievink at Cedars-Sinai.
| My diagnosis happened after I had an acute attack of
| intracranial hypotension shortly following a long and bumpy
| session of riding mowing. This attack involved a 'worst
| headache of my life' that was somewhat relieved by being
| horizontal. Getting to the hospital seemed too painful, so I
| stuck it out at home and the headache went away. A couple
| days later I developed a left sixth cranial nerve palsy,
| which persisted for around two weeks before I finally went to
| the ER. After a few days in the hospital and tons and tons of
| tests for infections, MRIs, lumbar punctures, etc, they
| decided that I had idiopathic hypertrophic pachymeningitis.
| That was the working diagnosis for about a week, when my
| neurologist called me back and told me that they thought they
| had found CSF leaked into the spinal canal, and so they
| believed I had a CSF leak.
|
| So, the short answer is that diagnosis will be difficult, and
| there isn't really a test, but MRI with gadolinium contrast
| will show enhancement of the dura, and hopefully someone
| looking at it can see a leak if it is obvious. There are also
| cases of leaks being caused by a venous fistula, which does
| not image well.
|
| For what it's worth, I had back-of-head-and-neck headaches
| intermittently for a while before this, most notably when
| riding rollercoasters (which I do miss). That is the only
| long term subtle 'sign' I can remember.
|
| Hope this helps.
|
| Edit: I should also probably add that my case is somewhat
| weird, caused by a bone malformation in my thoracic spine and
| difficult to localize with imaging. I had a T1 laminectomy to
| correct this. However, I'm not sure there are really
| 'standard' cases, except those that are iatrogenic due to LP
| or epidural in delivery.
| s5300 wrote:
| If you don't mind answering, how old were you at the time
| and what was your proximity to Cedars-Sinai?
|
| I have slight regret with not double booking an appointment
| with Schievink when he personally called me. For some
| likely completely unreasonable reason, I feel like Dr.
| Carroll is a bit better of a choice having had a child with
| a leak. Had an appt with Carroll a small ways out - was in
| San Diego for strange reasons at the time - was going to be
| gone by the date of the appt and have to fly in. Schievink
| very much thought I had a leak from history and others
| diagnosis (EDS & POTS) - but thought I may be in better
| hands with Stanford as I already had an appointment - the
| main reason I went after Schievink was because I was hoping
| to be seen before I left SD. For some reason, I made the
| choice to agree with him and stick with only Carroll.
|
| Anyways... A ton of unfortunate things fell thru with some
| misscheduling at Stanford, and I'm still on a list to be
| seen by Carroll :(
|
| While both doctors think it's likely that I have one, which
| is something they've both said they typically don't say
| over the phone, either way - I see Dr. Carroll as an
| absolute hero in these strange times we seem to be living
| in. As selfish as it sounds, I can only hope that man
| pioneers research into this for the rest of his life. Being
| on the receiving end of at least one (possibly two with
| CSF) medical diagnosis in which there's less quality
| researchers/surgeons in the Western World than can be
| counted on one hand, you grow to have very strange ideals
| as to what's truly important in life.
| s5300 wrote:
| If you have zero external support system and _literally_ no
| money /income... it's an absolute shitshow, and that's about
| all I can tell you.
|
| Dr. Ian Carroll is arguably the best resource in the world.
| Starting here is probably a good choice.
|
| https://profiles.stanford.edu/ian-carroll
|
| https://www.mdedge.com/neurology/migraineresourcecenter/arti.
| ..
|
| https://youtu.be/QyvWxobqKrc
|
| https://youtu.be/g5lsFIDzazc
|
| No idea why I currently can't find a non walled version of
| the first link. It's important - and general googling would
| be "when to suspect a CSF Leak Ian Carroll"
|
| Secondary to Dr. Carroll
|
| Dr. Wouter Schievink at Cedars-Sinai also has good
| information... He's actually the pioneer of research IIRC.
|
| Saved a dude from a diagnosis of dementia and spending the
| rest of his deluded days in a nursing home.
|
| https://www.nytimes.com/2017/11/02/magazine/why-was-their-
| br...
|
| IIRC - in the end, based on decades of patient history, he
| just opened this guy up as a last resort and nearly missed -
| but did find the leak. Near full recovery.
|
| It seems to be that there are some very high risk groups,
| like those with connective tissue disorders - specifically,
| Ehlers Danlos. Also, from Carroll's findings, a lot of people
| diagnosed with POTS are often misdiagnosed and truly have
| some small CSF Leak. Ehlers Danlos and POTS often go hand in
| hand as well...
| garganzol wrote:
| Great references. Anonymous browser page works well when
| trying to get a non-walled access to "when to suspect a CSF
| Leak Ian Carroll":
|
| https://www.mdedge.com/neurology/migraineresourcecenter/art
| i...
| dgellow wrote:
| Incredibly saddening to read. I wish Lee, Kristin, and their son
| all the best.
| beastman82 wrote:
| Oh wired, hijacking my back button. Never change from the
| horrible thing you are
| jgrahamc wrote:
| I posted this hours ago and then stepped away. The story captures
| so much about the Lee I knew so well. I'll add one piece of
| praise for Lee's early architecture of Cloudflare.
|
| Everything was controlled by a single Postgres database that made
| very heavy use of stored procedures, that called other
| procedures, that called others. It was one giant program inside
| the database. It took me a while to comprehend what he'd done but
| it was really great. The database ran everything and all those
| functions made sure that audit logs were kept, that the calls
| were allowed for the user ID being passed in, and some of these
| procedures made external calls to APIs including getting things
| like SSL certificates.
|
| It was a magnificent monolith inside a database.
|
| I worked on the periphery of the database (it was truly Lee's
| domain) and he'd tell me what output to expect or API to create
| and I'd code to his spec. and we'd just hook it up.
|
| If any single artefact represents what he did at Cloudflare, it's
| that database. And he used to code it on a laptop we called "The
| Beast" because it was so crazily heavy and overloaded with memory
| etc. that he'd carry around a mini, test Cloudflare wherever he
| went.
| mynameishere wrote:
| Working with stored procedures is just the pits. I wonder why
| you would describe that as "great". Maybe it's optimized, but
| so would be a giant executable written in assembly.
| icedchai wrote:
| Last time I worked with stored procs with an Oracle 8
| database, over 20 years ago. PL/SQL was awful.
| asguy wrote:
| It is great: your code runs right near the data it's working
| with.
|
| If it's the pits, you need a better suited development
| environment. I use emacs and interactively code inside the
| DB. Python, Lua, JavaScript, PGSQL, whatever.
| woah wrote:
| I'm sure he did a great job, but I've seen those things be a
| huge nightmare for anyone other than the irreplaceable genius
| code wizard who created them.
| peter_d_sherman wrote:
| Excerpt:
|
| "At work, Lee was still the star engineer. At the end of the
| summer of 2014, he took on a project that earned Cloudflare its
| first bout of internet fame:
|
| _The company would help websites become encrypted for free_.
|
| (It was not yet standard for company websites to be encrypted.)"
|
| Yes, but, this might have earned him the ire of some Nation-
| States...
|
| Let's remember that Distributed-Denial-of-Service (DDoS) attacks
| on a website in one nation (which Cloudflare prevents) might very
| well have been an early form of content censorship by other
| Nation-States (China, etc.), although newer forms of this
| exist...
|
| When somebody who once occupied a position of Internet power like
| Lee Holloway did, dies unexpectedly, allegedly from "natural
| causes",
|
| _Demand an immediate and thorough investigation_
|
| Because future Internet Freedom may be at stake...
| rubicon33 wrote:
| Terrifying.
|
| As a software engineer, shit like this scares me. I've felt like
| I'm on a steady, slow, decline for the last ~4 years.
|
| Is it just burnout? Do I need a new hobby?
|
| I used to love programming... Spent 12 hours a day jamming on it.
| Now, I struggle to keep my mind on a line of code for more than 5
| minutes.
|
| At what point is it just burnout, or at what point is it
| something more? That's what's terrifying to me. I imagine that
| was a challenge for those close to Lee.
|
| We just know so little about the human body. Our ability to
| easily query the state of the body, to assess which functional
| components are working, and which need help, is dismal.
|
| I just hope that Lee, in whatever state he is in, isn't
| suffering.
| [deleted]
| battery_cowboy wrote:
| I'm here with you, I still love the idea of software, but I
| can't get myself to sit there and code even the most fun
| projects. I had a great idea for a project to start a business,
| I know people would need it, but I just can't get myself to do
| it. It's frustrating and makes me really depressed that I'm
| like this.
| dimxasnewfrozen wrote:
| After reading this I had to do a quick self-assessment.
|
| For the last few years or so (I'm 33, also a software engineer)
| I've noticed a pretty big decline in my mental state. I can't
| focus. I immediately forget what I just looked at, read or did.
| I completely zone out when people talk to me. I am just not
| present in any situation. What is strange is that I can
| actually notice it, not in real-time however. It's been
| worrying me for the last few months so much so that I started
| meditating which I've never done before. My wife mentioned
| seeing a therapist because she thought maybe I was depressed so
| I scheduled an appointment but it's been rescheduled due to the
| virus.
|
| I keep hearing about other programmers experiencing similar
| issues (yourself included) and I wonder if the nature of what
| we do somehow damages our brain in some capacity and we just
| don't know it yet. Obviously Lee's case is different but it's
| certainly scary. I hope he doesn't suffer as well.
| bpicolo wrote:
| I think this is pretty natural. When it's fresh and you're
| learning a lot, programming is easy to keep fixated on. It's
| very instant-gratification early on. As you progress, the low
| hanging fruit dries up and goals have longer gratification
| cycles
| golemiprague wrote:
| Nah, pretty normal. This job is just not designed to grow with
| a person, for most people it is an endless loop of learning the
| same thing again and again in small variations every two years.
| No wonder it is boring and people get fed up with it.
| 01100011 wrote:
| How old are you? I'm about to hit 45 and have been on that path
| for about 2 years now. It started with sleep apnea but I've had
| that under control for 16 months now. I feel like I'm becoming
| too slow to be a proficient coder, and I lack the people skills
| to move to management. I'd pick a lower-stress career, but I've
| got alimony and need the income.
|
| I've tried getting fit. I've tried improving my sleep.
| Vitamins, herbs, etc. The only things that work are tobacco(not
| nicotine, it just makes me sick) and armodafinil in small
| doses.
| oscribinn wrote:
| The way they describe this disease and his behavior, bending over
| backwards to keep him alive is just going to draw out the
| suffering of him, his family, his friends, etc. There's nothing
| bad on the other side of existence/nonexistence anyway, so why
| not just mercy kill what's left of the poor guy? It's either a
| quick and painless death or painful, slow disintegration from
| here on out.
| microtherion wrote:
| This was devastating to read. The family were neighbors of ours
| for many years, and my wife was a close friend of Lee's mother.
| [deleted]
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