
What Happened to Lee - jgrahamc
https://wired.com/story/lee-holloway-devastating-decline-brilliant-young-coder/
======
thephyber
Sandra did a wonderful piece in capturing Lee, his family, his work, and his
degeneration. Lee was a coworker and roommate of mine for years.

Some additional info that might be of interest to this crowd:

He was fantastic at video games (RTS and RPG) and chess. He had impeccable
hand-eye coordination. He co-founded a gaming clan. None of that is relevant
anymore.

There is nothing to be done. His condition can't be solved (within his
timeframe) by medicine or technology. eastdakota offered to spend whatever it
took, but the least worst option was to move him across the ocean and turn him
into a test subject for tests that he probably wouldn't tolerate in his
current state.

He was deliberate in "minimizing toil". His university projects morphed into
patents and a job at UnSpam and Project HoneyPot. Project HoneyPot's
technology unlocked the core value to CloudFlare, which he cofounded. His
projects and stacks were deliberately chosen for maximal reuse and to minimize
wasted effort.

I thank Matthew and Michelle for keeping the story of his journey alive. I
can't imagine the tech periodicals are knocking down their doors to write
stories like these. Connie Loizos had another piece on him at TechCrunch in
2019[1]

[1] [https://techcrunch.com/2019/08/15/cloudflare-has-a-third-
cof...](https://techcrunch.com/2019/08/15/cloudflare-has-a-third-cofounder-
lee-holloway-whos-credited-with-making-the-company-what-is-today/)

~~~
Tycho
Can I ask you, when Lee’s personality began to change drastically, did he
maintain the same level of technical proficiency (in coding or gaming)? It
_is_ a wonderful piece on a very sad story, and after reading it that’s one of
the things that I’m interested to know more about, to understand the general
condition.

~~~
eastdakota
I don't know about gaming, but I do about coding. First, if I look back over
the 18 years I knew him, I can see some things that make me think he had the
disease the whole time. He was a brilliant coder when he first started working
with me out of college, but I think he really hit his peak ability to focus
and do amazing things around 2014 — right as we were rolling out Universal
SSL. But, even to the end, he was great at coding. In fact, I was told that
the doctors said one of the things that was unique about his presentation of
the disease was that while most people lose the ability to complete complex
tasks first, Lee almost seemed to do the opposite — still thriving on the
complex. We brainstormed whether there were coding challenges we could keep
sending him after his diagnosis to keep that part of his mind active. It never
ended up happening in part because he lost a lot of his verbal communication
skills around the same time, but I wonder when you hear him counting under his
breath what puzzle he's still solving in his head.

------
billti
> 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?

~~~
cryptica
>> 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?

~~~
meowface
My suspicion would be that the general anesthetic is the primary cause.

~~~
madaxe_again
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.

~~~
xupybd
I've experienced this too. I had a tumor removed from my head. It was pretty
serious. I'm not sure if it's due to the anesthesia, physical stress of the
operation, changes to brain blood flow or radiation that my brain was hit
with.

Either way my memory has not been great since. My wife is disappointed when I
forget meaningful conversions from a week ago. I struggle at times to notice
trivial errors, really struggle. I can look over the same email and miss
several mistakes. Other days I'm clear, I don't make many mistakes and I can
spot them easily.

I still managed to get an Engineering degree and hold down regular employment
as a software developer. But there are periods of time where my focus and
productivity are just not there. I suspect this will hold me back in my
career. But I'm thankful I can function as well as I can and have survived to
this point.

~~~
meowface
I'm sorry, that sounds awful. I think it definitely could be any combination
of those things. The brain is a very delicate and sensitive machine.

I don't have specific recommendations, but I think that the potential for
recovery should be much higher than what people with neurodegenerative
diseases suffer from, like what was described in this article.

There're a lot of risk and uncertainty trade-offs, and everyone reacts to
things differently due to their genetics and what they're suffering from, but
nootropic substances could potentially help here. They could possibly help as
a short-term aid that improves memory and attention to detail while the
nootropic is in effect, and some can actually potentially create long-term
improvements.

They're very under-studied, and they definitely require a lot of careful
research, gradual self-testing, and acceptance of some risk (some nootropics
have almost no risk, and some have a moderate level), but it could be worth
looking into.

~~~
stef25
> The brain is a very delicate and sensitive machine

Something as simple as a prion can completely destroy it and then there's
Phineas Gage, someone whom all neurobio students learn about on day one of
their course. Neuroplasticity can be quite amazing.

[https://en.wikipedia.org/wiki/Phineas_Gage](https://en.wikipedia.org/wiki/Phineas_Gage)

~~~
meowface
Yep. A lot of it is personal biology and a lot is also chance. You can be shot
in the head and survive with not much cognitive impairment, or you could hit
your head against something and be unable to speak or feed yourself for the
reset of your life. We are very pliable but it's sad that we're also still so
fragile, at the level of the "mind" / "soul". Hopefully there'll eventually be
a day where consciousness can be hosted in a much more safe way, for both
biological and total immortality.

I don't think it's exactly correct to say "a prion" can destroy it. One single
prion I don't think would cause significant damage in most cases, if there
could somehow be only a single one. The issue is that it's believed a prion
will gradually cause nearby proteins to misfold and also become prions, and
then it probably starts recurring exponentially like a pathogen infection, and
your brain physically deteriorates and falls apart with no way to stop or
reverse it. A very similar deterioration process appears to happen with other
disorders like Alzheimer's and the form of dementia discussed in this article,
though the root cause still isn't understood.

------
jgrahamc
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
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.

~~~
crazygringo
As long as you have the necessary tooling for source control, versioning, code
search, etc. -- why is it the pits?

I mean, if you stick to a rigorous procedure of automatically exporting your
stored procedures to files and committing them to git with messages... how is
that different from any other development?

Serious question -- I've done tons of database work but only a little bit with
stored procedures, so wondering if I'm missing a crucial detail here.

~~~
ggreer
Let's say that when you deploy, you want to direct 1% of traffic to the new
code, then 5%, then 25%, then 50%, and finally 100%. And if monitoring metrics
go red at any point, automatically roll back. A typical canary deployment.

How do you do that with a sproc? With normal application code, you can have
the load balancer send an arbitrary percentage of traffic to the new instances
of the service. A sproc binds the code and the data together. But you only
have one database, so there's no way to do a gradual deploy of the code. That
would be like doing a gradual deploy of a schema migration. It's only possible
if you have a _lot_ of databases.

Also unless you're using MS SQL server, debugging sprocs is a pain. The only
workaround I've seen is to add a debug or loglevel arg to the sproc. But
actually pausing execution and inspecting data? Good luck.

~~~
dragonwriter
> Let's say that when you deploy, you want to direct 1% of traffic to the new
> code, then 5%, then 25%, then 50%, and finally 100%. And if monitoring
> metrics go red at any point, automatically roll back.

> How do you do that with a sproc?

Wrap the real sproc (well, the set of real sprocs, since old and new will
sometimes coexist) with a wrapper sproc that probabilistically directs to the
appropriate working sproc based on a table value (or anything else the sproc
can read) that is updated to reflect the current stage in the conversion
process, including any monitoring-based reversals.

~~~
ggreer
How do you correlate those errors at the application level? If only 1% of
sproc calls are the new sproc, any elevated error rates in the application
will be hard to see over typical noise.

~~~
dragonwriter
> How do you correlate those errors at the application level? If only 1% of
> sproc calls are the new sproc, any elevated error rates in the application
> will be hard to see over typical noise.

By using the DBs error reporting features to report back errors to the
application, including information about which ultimate implementation was
handling the request.

~~~
ggreer
That only covers errors that occur inside the sproc, not errors that are
caused by the sproc. For example: What if the new version of the sproc
succeeds, but the data it returns causes the application code to fail in some
way? The sproc metrics would report 100% success and the application error
rate wouldn't get above noise until a significant fraction of traffic was
using the new buggy version of the sproc.

It's possible to add more epicycles to try and correct for these deficiencies,
but the truth is that sprocs are dangerously double-edged. Yes, your code runs
next to your data, but to get parity with application code (canary deploys,
debugging, logging, etc) you must reinvent lots of tooling.

~~~
KajMagnus
@ggreer, the grand-grand...parent, wrote:

> there's no way to do a gradual deploy of the code

There could be version numbers?

    
    
        some_procedure_v1()
        some_procedure_v2()
    

and new v2 version application server code calls v2 stored procedures. And if
v2 app server code gets rolled back / cancelled, then, the v2 stored
procedures automatically won't be used any more.

~~~
steve-chavez
Version numbers work great as schemas. You could have v1.proc and v2.proc.

Also, for an API schema, only exposing views + stored procedures and hiding
tables in private schemas makes the SQL easier to refactor. This is something
we recommend at postgrest.org:
[http://postgrest.org/en/v7.0.0/schema_structure.html#schema-...](http://postgrest.org/en/v7.0.0/schema_structure.html#schema-
isolation)

Sharing in case this is useful to you.

~~~
KajMagnus
Interesting idea — I had never thought about that (I mean, looking at tables
as internals, and procedures + views as the public interface). I'll think
about that the next time I'm doing a data migration.

Thanks for sharing, Postgrest looks like intended for people building a web
app, and who don't want to write application server code, instead, they
install just a database?

Also, I imagine Postgrest is nice for internal admin apps? then one "just"
needs to write Javascript and connect to Postgrest via REST?

Actually, it'd be nice if [https://postgrest.org](https://postgrest.org)
homepage explained some different use cases :-) I had to think for a little
while, still not sure if I understand all cases when Postgrest can be useful.

 __Edit: __Now I see there 're explanations here:
[https://postgrest.org/en/v7.0.0/](https://postgrest.org/en/v7.0.0/) _"
Motivation Using PostgREST is an alternative to manual CRUD programming"_ etc,
if I just scroll down ab bit. — I didn't do that until now, I probably stopped
reading at the "Sponsors" text & images previously, or I thought it was a
documentation page.

This is quite cool: _" Creating new views happens in SQL with known
performance implications. A database administrator can now create an API from
scratch with no custom programming"_.

It looks a bit like GraphQL also:
[https://postgrest.org/en/v7.0.0/api.html#resource-
embedding](https://postgrest.org/en/v7.0.0/api.html#resource-embedding)

Nice that it's written in Haskell, was my favorite language long ago :- )

(PS. [http://postgrest.org](http://postgrest.org) redirect to:
[http://postgrest.org/en/v6.0/](http://postgrest.org/en/v6.0/) which is not
the latest version (& not https), maybe you'd like to redirect to:
[https://postgrest.org/en/v7.0.0/](https://postgrest.org/en/v7.0.0/) instead)

~~~
steve-chavez
> Postgrest looks like intended for people building a web app, and who don't
> want to write application server code, instead, they install just a
> database?

Besides usual webapps, I've also used it for building an IoT project(sensors
logic in the db) and a GIS project(postgis/pgrouting). Some users have also
used it for open data projects(OpenAPI is provided).

It's also great for internal admin apps and there are ready-made libs like
[https://github.com/Wellers0n/react-admin-postgrest-
client](https://github.com/Wellers0n/react-admin-postgrest-client).

Those are some of the use cases off the top of my head. In general, I think
it's good for cases where you'd like to use the database as a "processing
engine" instead of a "dumb storage".

The docs definitely need a lot of improvement. Thanks a lot for your feedback!

------
rubicon33
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.

~~~
dimxasnewfrozen
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.

~~~
rubicon33
I'm 33 also.

I'm starting to form a theory that it could be dopamine depletion. [1]

[1]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791340/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791340/)

~~~
gscott
Check your blood sugar and blood pressure. That is what got me, for a long
time I had a lot of brain fog and just was operating at around 50% which was
enough to get me by but once those issues were resolved I feel fine now.

~~~
rubicon33
Blood pressure has been tested, and is normal (120/70).

I'd be surprised if I had a blood sugar problem. No family history of Type-1
diabetes. I'm thin/muscular. Workout regularly (lift+run).

I suppose it's possible, but I would be surprised. Human body is a weird
thing.

------
kick
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
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.

~~~
radicalbyte
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
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.

~~~
asveikau
And also: have pity on the person who outwardly seems to be an asshole or
checked out. You don't know what they're going through.

~~~
miles
Reminded me of this quote often misattributed to Plato[0]:

"Be kind; everyone you meet is fighting a hard battle."

and Patrick Farley's version from his series "The Spiders"[1]:

"Show kindness to every person you meet. No matter how ill-tempered a man may
seem, you have no idea what private agony he may secretly be struggling with."

[0] [https://quoteinvestigator.com/2010/06/29/be-
kind/](https://quoteinvestigator.com/2010/06/29/be-kind/)

[1]
[http://www.electricsheepcomix.com/spiders/3.5/01_hospital.ht...](http://www.electricsheepcomix.com/spiders/3.5/01_hospital.html)

------
s5300
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
How DOES one get diagnosed for this? Is there a test?

~~~
atmanthedog
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
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.

~~~
atmanthedog
I was 30 when all of this transpired initally (I had my surgery at the
beginning of last September). I actually live quite far away from Cedars, in
Illinois, but forwarded my local medical records to Dr. Schievink after a lot
of online research. Post-surgery I stayed with a friend from college who lives
in Santa Monica, which was an enormous help, but it also wouldn't be so bad to
post up in a hotel. From initial inquiries to the surgery took ~2-3 months,
which surprised me.

I haven't interacted with Dr. Carroll, but my general impression of Dr.
Schievink was very positive. Everyone in the whole process at Cedars was
awesome. That said, I do still have some lingering issues recently that
superficially seem spine-related, despite being assured that my saga was over.
It has definitely been an improvement, though, relative to pre-surgery.

I'm sorry to hear to you're going through all of this, but there really is
light at the end of the tunnel, and I hope you get there sooner than later.

If you have other questions, you can email me at my HN handle @ gmail and I
will try to help as I can.

------
mensetmanusman
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
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.

~~~
caleb-allen
My father is an entrepreneur, with multiple successful companies under his
belt. He's got a knack for seeing opportunities others don't, synthesizing
those connections. Anybody who's had a conversation with him can tell you
that.

His younger brother, my uncle, was diagnosed with schizophrenia at age 20
after becoming severely erratic while away from home on an LDS mission. The
diagnosis devastated their family, and has been followed by decades of
difficult treatment and heartbreak.

What is it about my uncle that pushed him over the edge? Environment?
Genetics? Pure chance? I wish I could know. My dad says that there's not much
left of him except for a few moments here and there.

My dad had a big family, and he's said that his younger brother always showed
the most promise, growing up. Smart, charming, super friendly. 30 years on he
continues to greet everybody with a smile and hug, even if he doesn't know
them!

It's sobering to see it in my own family, and it keeps thoughts like the one
you articulated so well in the back of my mind constantly.

~~~
ndespres
One idea mentioned in the article that I've seen elsewhere is this:

"The gist, then, is that someone is “himself” because countless mental
artifacts stay firm from one day to the next, anchoring that person's
character over time."

I have read reports that latent schizophrenia is often revealed when people
travel abroad. Maybe if your environment and surroundings change drastically,
your mind loses its sense of "self" that was based around anchors to the rest
of the environment.

This journal article touches on this:

"Long distance travel has long been known to aggravate pre-existing
psychosis.... Travel can be a destabilizing life event7 with many potential
hazards to mental health, from the effects of drugs used for prophylaxis
against infection, to homesickness, to disrupted circadian rhythms, to culture
shock."
[http://www.ijtmgh.com/article_33029_738f7bb0f6124261891cf610...](http://www.ijtmgh.com/article_33029_738f7bb0f6124261891cf6107cbd9f2c.pdf)

------
phaedrus441
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.

------
noir_lord
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
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.

------
dhruvarora013
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.

------
caust1c
Lee interviewed me at Cloudflare. At that time he was still quite active and
very interested in his work. It was definitely a noticeable decline, but we
all just attributed it to burn out.

I think everyone at Cloudflare was heartbroken when Matthew announced his
diagnosis. It was hard to take in.

We love you Lee, you are a champ! You've left a legacy and made the world a
better place. Thanks for the opportunity you and the team gave me to work at
Cloudflare.

------
7thaccount
An old family friend was a brilliant engineer. He then had a stroke and
recovered (early 50s), but within a few months started acting strange. He
started making really inappropriate statements, and generally acting weird,
started buying commemorative coins and not paying his bills. Then he started
talking gibberish and couldn't understand people. His motor functions
eventually deteriorated and he passed away a few weeks ago. Absolutely
horrifying. By the time we all figured it out, it was a couple of years in.

------
thesz
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...](https://www.health.harvard.edu/blog/autoimmune-disease-and-stress-
is-there-a-link-2018071114230)

[2] [https://www.forbes.ru/karera-i-svoy-
biznes/392253-kukushechk...](https://www.forbes.ru/karera-i-svoy-
biznes/392253-kukushechka-poehala-k-chemu-privodit-izlishniy-samokontrol-i-
kak-s-nim)

[3] [https://www.shmabstracts.com/abstract/stress-is-the-
enemy-a-...](https://www.shmabstracts.com/abstract/stress-is-the-enemy-a-case-
of-anti-nmda-receptor-encephalitis-triggered-by-emotional-stress/)

And he was clearly overworked, by my guess.

~~~
garganzol
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...](https://carrington.edu/blog/researchers-discover-link-mental-
stress-physical-health/)

------
ericabiz
Coming to this late, but wanted to offer my condolences and a friendly ear if
anyone reading this is dealing with FTD in a friend or relative.

My dad was diagnosed in his 60’s with FTD and declined for years until he
passed away in January. It has been really difficult, and even more so for my
mom, as she had to deal with him becoming aggressive in later stages of FTD.

It’s an ugly disease, not well-known, and hits people younger than typical
Alzheimer’s symptoms would. I’m so sorry to those who have to go through FTD
with relatives. It’s just extremely difficult from all angles. :(

If you are dealing with this, whether with the person in the article or
someone else, my contact info is in my profile.

~~~
eastdakota
Thank you.

------
devenson
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
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.

------
raincom
Late Dr. Oliver Sacks in his book "musicophilia" spent a chapter on
Frontotemporal Dementia (FTD). That's chapter 28: "irrepressible: music and
temporal lobes".

------
daenz
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?

~~~
reuben_scratton
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
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
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.

------
Igelau
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-
> 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.

------
meowface
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
A cocktail of neural herbals, exercise, meditation, extra therapy - I hope he
got all these early on.

~~~
meowface
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.

------
yters
I feel that our profession, software engineering, might actually cause this
sort of problem. Like the movie 'Concussion' the hyper focus on solving logic
problems might cause brain damage. I've experienced something like this after
multi day long bouts of coding, where at the end I become incapable of
understanding simple greetings from other people. It is like the 'social
signal processor' part of my brain just shuts down.

And, it is this 'social signal processor' that helps keep me sane. God knows
what I'd be like if I only lived in my own head 24/7\. So, what kind of brain
damage could it do to a person to become completely consumed by coding 24/7
(even though I'd love to do so)?

"The madman is the man who has lost everything except his reason." \- GK
Chesterton

------
sdan
I've always wanted to work at Cloudflare because of Lee. He was probably the
first one from my high school who actually made something that people want
(and I also use everyday).

~~~
eastdakota
Please apply: Cloudflare.com/careers

------
zellyn
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 :-(

------
epx
Remembered me at the end when HAL-9000 said "My mind is going. I can feel
it.". But HAL-9000 at least knew :(

------
XCSme
This was a sad article that hit pretty deep. I think those kind of stories are
even more terrifying for us, programmers, because we can normally lose
everything but as long as we have our mind intact we can earn our living and
start from zero anytime.

For me the saddest thing in life is the loss of potential, when someone could
have done so much more, actually wanted to do more and was even trying to do
more, but then something tragic happens.

------
duxup
Watching a family member fade and the glimpses of them here and there can be
horrific.

My father died when I was 9.

Decades later I watched my mother in law dissolve (and she was very much aware
/ terrified all the time) over the course of a decade. I think it altered and
traumatized my wife's entire family in a way I'm not sure they understand or
have dealt with.

Sudden death seems so much more humane.

~~~
barbs
That sounds horrific, I'm so sorry

------
dgellow
Incredibly saddening to read. I wish Lee, Kristin, and their son all the best.

------
WarOnPrivacy
Reflecting on the horror, how much worse is this condition for the families
who aren't healthcare-wealthy enough to afford diagnosis?

Those victims likely get written off as a worthless drain on society.

------
DeathArrow
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.

------
andmarios
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.

~~~
saagarjha
I’m sure you mean well, but your comment came across as a little harsh to me,
reducing the very real and very saddening decline of such a talented person,
along with the people close to him that witnessed this decline firsthand, to a
“so? This happens to everyone”. I agree it’s something that we should continue
researching, but I don’t think it’s really fair to claim that doctors are
apathetic to the issue.

~~~
mdonahoe
I viewed it more as a warning about the frequency of dementia, rather than an
attempt to minimize Lee's experience.

------
microtherion
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.

------
koliber
While reading this, I could not stop thinking about how much it parallels the
story of Ravel. RadioLab did an episode on it:
[https://www.wnycstudios.org/podcasts/radiolab/articles/unrav...](https://www.wnycstudios.org/podcasts/radiolab/articles/unraveling-
bolero)

~~~
wouterinho
Thank you for referring to this episode, I found it really resonated with the
article.

------
bvandewalle
This is one of the saddest thing I read today and a good reminder that life is
always finite.

------
kemonocode
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.

------
cmauniada
I am in deep sadness over what has happened to Lee, and I feel for his family,
especially Kristin.

I can't help but draw parallels between this story and Flowers for Algernon.
It's just sad to see such a young brilliant mind be broken down by this
disease.

I wasn't expecting him to be diagnosed with FTD, I will admit that reading the
first part of the article painted a very different picture of what might be
causing his issues.

Also, since he had a heart condition, I wonder if for some reason that might
have accelerated his condition?

------
throwaway29303
I just finished reading this and I'm weeping. I'm so sorry.

------
djohnston
devastating to read. any decline into dementia is a tragedy but in your 30's?
taupathies suck.

------
dnprock
This story is sad and tragic. It reminds me that whenever someone comes hard
at you, they probably need more help than you do. Best of luck to Lee and his
family.

------
jeffrallen
Thank you Lee. Happy travels, until the sunset.

------
jc01480
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.

------
sourabhforu
Tragic. Hope you live your life to the fullest Lee. And thanks for making the
web safer.

------
johntiger1
Incredible article, and really makes me appreciate how lucky I am to have my
cognitive faculties. We really don't have as much time as we think; seize the
day and make the most of what you have!

------
pfdietz
Turing Award winner Robert Floyd also had FTD (the variant earlier called
Pick's Disease). He died of it.

------
am33
Really shows you about how little (if any) free will exists.

------
broooder
Flowers for Algernon

------
Galus
What a read.

------
hn_throwaway_99
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
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
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
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."

------
0x8BADF00D
This story convinced me that I need some sort of legal document stating my
desire to be euthanized if I ever reached this point. Ideally, I'd like to
leave this world with an extremely high dose of a psychedelic drug. Not hooked
up to machines in a hospital bed.

~~~
uuuuuuuuuuuu
> Ideally, I'd like to leave this world with an extremely high dose of a
> psychedelic drug. I'd be afraid of the potential for a bad trip.

------
asdf21
IMO this is why brain scans should be more common / part of a normal physical
every few years.

------
beastman82
Oh wired, hijacking my back button. Never change from the horrible thing you
are

~~~
onedr0p
Right Click > Open in new tab

------
garganzol
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.

~~~
thephyber
Second had information from Lee's doctors suggest that there's a genetic
component.

From what I remember, he was also born prematurely and spent weeks in a NICU.

Also worth noting that the disease didn't ease up after he stopped working, so
the suggestion that "working less" might have avoided it is not clear.

------
oscribinn
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.

------
rurban
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
Bad taste, friend.

