
Monday was my 46th birthday and likely my last - ca98am79
http://aaronwinborn.com/blogs/aaron/monday-was-my-46th-birthday-and-likely-my-last-anything-awesome-i-should-try-after-i-die
======
Andrenid
That was incredibly inspiring, and incredibly depressing.

As a Drupal fanatic who built my career on it, and a person also dealing with
a terminal illness (though I have a couple years left, if all goes well), it's
upsetting to see that someone who gave me so much, now has to go through all
that. I feel genuine pain and am quite legitimately upset now. I wish Aaron
and his family all the best (considering).

~~~
SiVal
I wish you the best, too, along with Aaron.

I've occasionally asked other people what they thought the worst problem in
the world was. Nobody has ever answered with my answer: that all of our loved
ones are going to die. The utter inevitability of death within a few decades
of birth is so thoroughly taken for granted that people are vastly more
concerned about the NSA or carbon dioxide than about literally saving the
lives of everyone they care about.

We need a working backup and recovery plan for people as soon as possible. How
soon it will happen will probably depend a great deal on how soon a critical
mass of people can be made to see it as an actual engineering problem urgently
requiring a solution.

~~~
rfvtgb123
And from then on, are we going to keep people from having children or are we
going to let massive overpopulation happen? Where to recover the stored minds
to?

That said, in my oppinion a big part of what makes life worthwhile IS that it
is finite.

[I am working with the assumption that by "backup and recovery plan for
people" essentially you are talking about making people immortal by backing up
their mind before the body dies and somehow keeping it working, e.g.
recovering it to a different body.]

~~~
TeMPOraL
Fortunately the tech required to restore minds will most likely solve the
overpopulation problems as well.

One mistake people make when discussing cryopreservation is considering it in
isolation. Reviving frozen minds will likely require some form of basic
molecular nanotech, and this same technology can in principle convert dirt to
habitats on Earth and in space.

As for my opinion about dying: fuck that. I don't want to die. I don't see any
reason for any of us to pass away. If we can fix this, then let's do it.

~~~
rfvtgb123
_cryopreservation_

That's not what I was talking about.

 _Reviving frozen minds_

Frozen. Minds. Say What?

 _will likely require some form of basic molecular nanotech,_

Wild assertion.

 _and this same technology can in principle convert dirt to habitats on Earth
and in space._

Wild speculation.

To sum it up - you have nothing. Asserting "OH the tech we will have by then
will magically fix it and we will live in space" is not a solution. It's not
relevant to you and me anyway because we will likely not be able to backup and
restore minds during our lifetime.

Additionally, bodies frozen today will NEVER be revived because the body and
brain are utterly damaged in the process
([http://www.skepdic.com/cryonics.html](http://www.skepdic.com/cryonics.html)).

~~~
TeMPOraL
> _That 's not what I was talking about._

I was refering to the "backup and recovery plan for people" part of your
comment, following the best idea about it we nowdays have.

> _Frozen. Minds. Say What?_

Yup.

>> _will likely require some form of basic molecular nanotech,_

> _Wild assertion._

It's not a wild assertion, it's the basic assumption of this concept. Cryonics
by definition is "let's freeze dying people 'till we crack nanotech". See also
[0].

>> _and this same technology can in principle convert dirt to habitats on
Earth and in space._

> _Wild speculation._

 _If_ we get nanotech (even just by reprogramming nanotech that is already
around us) _then_ this is the consequence. It's not a speculation - this comes
straight from the premise. Actually, cheap construction abilities should come
much earlier than revival. Notice that we already made some progress in
reprogramming viruses and bacteria, as well as using protocells to construct
structures (there was a TED talk about it some time ago).

> _To sum it up - you have nothing. Asserting "OH the tech we will have by
> then will magically fix it and we will live in space" is not a solution._

The thing I was arguing is that _if_ we get the tech to escape death, then the
same tech will solve overpopulation problem earlier, as it's much easier.
Therefore, we don't have to consider overpopulation when discussing whether or
not we should freeze people.

[0] -
[https://en.wikipedia.org/wiki/Cryonics#Revival](https://en.wikipedia.org/wiki/Cryonics#Revival)

~~~
rfvtgb123
1) Cryonics is mostly a pseudoscientific money making scheme. "In theory it
could work" (maybe) if we get around a _lot_ of _huge_ hurdles. Calling it the
best idea we have is just an opinion.

2) Explain to me what a frozen mind is. Explain to me how a mind can be
frozen, present evidence. Present evidence that the mind is present and intact
in a frozen brain. Explain how the mind can be restored, present evidence.

3) That is not the definition (even if it was, my point would still be valid),
it is an obvious ruse to get around a problem with he whole concept of
freezing and reviving people that is obvious to anyone who has ever eaten
frozen broccoli. Also "reprogramming viruses -> nanotech that can do
everything": Non sequitur.

4) Again, you are just asserting things. You are making a positive claim and
you need to present evidence.

5) I understand that you claimed that before. But you are just pulling that
out of the air without evidence or even a good explanation or any reasoning.

6) I have a canvas with the original painting of the mona lisa that was made
before the one we can now see at the museum. You're lucky! I would like to
sell it to you! Please note that you can not see the painting at the moment
because it has been preserved by a sophisticated technique called "meh". So
the canvas might look empty at the moment but future nanotechnology will be
able to restore it. Interested?

~~~
TeMPOraL
> _1) Cryonics is mostly a pseudoscientific money making scheme. "In theory it
> could work" (maybe) if we get around a lot of huge hurdles. Calling it the
> best idea we have is just an opinion._

Name any other that could work for people dying now.

> _2) Explain to me what a frozen mind is. Explain to me how a mind can be
> frozen, present evidence._

Frozen mind is a frozen brain. Unless you believe mind is somewhere else, if
you freeze the brain you freeze the mind.

> _Present evidence that the mind is present and intact in a frozen brain.
> Explain how the mind can be restored, present evidence._

[https://en.wikipedia.org/wiki/Suspended_animation#Temperatur...](https://en.wikipedia.org/wiki/Suspended_animation#Temperature-
induced) Worked with dogs so far. Just for a very short time (3 hours), but
it's a start.

> _Also "reprogramming viruses -> nanotech that can do everything": Non
> sequitur._

Why? Reprogramming viruses is a start and a way to possibly bootstrap our own
nanotech. There is nothing blocking us in principle except "it sounds too
crazy to be true".

> _4) Again, you are just asserting things. You are making a positive claim
> and you need to present evidence._

Evidence that nanotech works? Every single living thing around you. Evidence
that we already can use it to build stuff? Just google around. Some random
things I was refering to in previous comment:

[http://www.ted.com/talks/angela_belcher_using_nature_to_grow...](http://www.ted.com/talks/angela_belcher_using_nature_to_grow_batteries.html)

[http://www.ted.com/talks/rachel_armstrong_architecture_that_...](http://www.ted.com/talks/rachel_armstrong_architecture_that_repairs_itself.html)

> _5) I understand that you claimed that before. But you are just pulling that
> out of the air without evidence or even a good explanation or any
> reasoning._

The line of reasoning is like this: we will most likely need some form of
nanotech to repair damages done to brain cells by freezing, unless you can
think of another method that would preserve the structure. This technology is
based on manipulating stuff on molecular level. Since dirt contains most of
the things we need to build pretty much anything (what do you think living
organisms are built from?), then cheap assembly of non-living things a) seems
a much easier problem than fixing living stuff, and b) can be done by simpler
versions of the said technology.

The detailed lines of reasoning can be found in Drexler's "Engines of Creation
2.0"
([http://www.wowio.com/users/product.asp?BookId=503](http://www.wowio.com/users/product.asp?BookId=503))
and other works referenced there.

> _6) I have a canvas with the original painting of the mona lisa that was
> made before the one we can now see at the museum. You 're lucky! I would
> like to sell it to you! Please note that you can not see the painting at the
> moment because it has been preserved by a sophisticated technique called
> "meh". So the canvas might look empty at the moment but future
> nanotechnology will be able to restore it. Interested?_

Explain to me how "meh" method works. How it preserves information contained
in the painting. If it makes physical and information-theoretical sense, then
maybe I'll consider buying it :P.

It's hard to present examples for technology that we don't really have right
now, but there's this concept of reasoning from first principles, and the said
principles do not prohibit molecular nanotechnology better that the one
already existing (that is, life).

See also:

[https://en.wikipedia.org/wiki/Molecular_machine#Examples_of_...](https://en.wikipedia.org/wiki/Molecular_machine#Examples_of_molecular_machines)

[http://www.cosmolearning.com/courses/richard-feynman-
lecture...](http://www.cosmolearning.com/courses/richard-feynman-lecture-on-
nanotechnology-tiny-machines-473/)

------
jessriedel
It looks like Aaron is familiar with Hal Finney and his battle with this awful
disease.

[https://bitcointalk.org/index.php?topic=155054.100](https://bitcointalk.org/index.php?topic=155054.100)

[http://www.finney.org/~hal/](http://www.finney.org/~hal/)

[http://www.noozhawk.com/local_news/article/101710_hal_finney...](http://www.noozhawk.com/local_news/article/101710_hal_finney_als/)

(I'm unsure whether Aaron got a response from Hal.)

Hal's response to his diagnosis has been defiant. He got the tracheotomy and
is determined to live a long, productive, and worthwhile life.

I have great reverence for Aaron's concern for the burden he would be on his
family, and I certainly don't claim to understand what it would be like to be
in his shoes. But I personally am a big supporter of Hal's philosophy. I
encourage Aaron and other ALS sufferers to consider this path. Never in
history has an intellectually constructive and satisfying life with ALS been
as technologically feasible as it is now.

[Edited to reflect the first link.]

Edit 2: It's also worth noting that ALS is what has crippled Stephen Hawking.
He got a tracheotomy in 1985, at which point his "A Brief History of Time" was
only partially completed. He finished it, and has made many important
professional contributions since.

[http://www.hawking.org.uk/living-with-
als.html](http://www.hawking.org.uk/living-with-als.html)

------
at-fates-hands
Having lost a grandfather and an aunt to ALS, I can completely relate to what
this family is going through. It is heartbreaking, and emotionally draining to
watch someone go through it.

It also scares the crap out me knowing this is a genetic disease and two of my
family members have already succumbed to it. This is known as Familial ALS.
Genetically speaking, it comes down to a 50/50 chance I could get it. I can
get screened to know for sure if I'll get it, but it requires you do
counseling before you even take the tests, considering how it could change
your life overnight.

Here's some facts about Familial ALS:

[http://www.alsa.org/als-care/familial-als/familial-
als.html](http://www.alsa.org/als-care/familial-als/familial-als.html)

\- Familial ALS- occurring more than once in a family and accounts for 5 to
10% of all cases.

\- In 1991 a team of ALS Association-funded researchers linked familial ALS to
chromosome 21. In 1993 the research team identified the precise defect, a
change in the DNA for the protein called copper-zinc superoxide dismutase 1
(SOD1). Researchers since have found more than 100 mutations in different
places in the coded DNA instructions for making SOD1.

It's frustrating because it seems like every time they get close to finding
THE mutated gene, they identify several hundred others. It's like a game where
the goal posts in a game are constantly changing.

~~~
crpatino
So... do the counseling! Knowing that the answer is out there for the taking
is already changing your life, probably for the worst. "What is true is
already so. Owning up to it doesn't make it worse..."

~~~
olalonde
Have you not heard of "ignorance is bliss"? I don't see the point of knowing
the answer here.

~~~
crpatino
I agree it would be nice if the option was still available to the OP. However
he already knows what ALS is, that the gene is in his family and that he
personally is "likely" to have it. More over, the two relatives lost to ALS
are not mere statistics, but carry deep emotional implications that color
every rational attempt at dealing with it.

Assuming the 50-50 estimate is accurate, the OP has a 50% chance of being
released of this dreadful fear by being shown not to have the gene himself,
which its a huge gain. On the other hand, I doubt it'd be much worse to know
for sure to be a carrier of the disease. In the best case, there is much
emotional work that can be done in putting their affairs in order and being a
much need grief process.

~~~
at-fates-hands
Counseling is still available, it's just something I try not to think about it
too much. It's not something I want to be constantly thinking about. You're
right, losing two family members to the disease does burden me at times when I
stop to think about it.

Here is a link to the inheritance chart which describes most situations and
the likely hood it will passed on, and to which side (male or female) passes
it on.

[http://ghr.nlm.nih.gov/handbook/inheritance/riskassessment](http://ghr.nlm.nih.gov/handbook/inheritance/riskassessment)

~~~
crpatino
If suppressing the thoughts works for you, great. Every one has to go through
it at their own pace. Best wishes to you and your loved ones.

------
virtualwhys
That video is heartbreaking. "You may have heard of her, her name is Wonder
Woman", tears.

He lived in a Buddhist monastery at one point; life is suffering. He'll soon
leave his loved ones, and he knows it's very much sooner than later.

What can you do in such a situation? Clinging to life, little time remaining,
what to do? I thought something ridiculous, like go on retreat until the end,
but right where he is, with his wife and kids is probably just perfect.

They're all being transformed by the experience. Yours is not to reason why
rings true. Who's to say that an "early" death is not in fact a gift for the
living?

~~~
nova
> Who's to say that an "early" death is not in fact a gift for the living?

You've _got_ to be kidding. (A very dark kind of humor, I guess)

~~~
virtualwhys
Not kidding at all.

Inevitable death awaits while we throw ourselves into the business of living.
When a loved one dies, that breaks you down, melts the ice block of arrogant
I-know-what's-up thinking.

That is absolutely a gift to the living, and his wife and kids are getting
that gift deeply, in their bones -- I've heard it called, eating Buddha's
rice.

~~~
nova
Well, that the most horrible thing I've read in a long time.

So we'll have to agree to disagree that _fucking death_ is a _gift_.

~~~
cookiecaper
It's actually not an uncommon perspective.

~~~
nova
Yes. I guess it's a psychological mechanism to cope with the horror, like
Stockholm syndrome.

~~~
kalms
For some it's not a horror. It's grief, and to me grief are welcome. It
confirms and strengthen our feelings and emotional bonds. Without death there
could be no life, and without grief there could be no love.

You should stop belittling other peoples viewpoints, just because it does not
align with your own.

~~~
nova
You are of course entitled to your own personal philosophy, as am I. That
doesn't mean I have to silence my disagreement.

And in fact I find that "viewpoint" totally incomprehensible. I can asure you,
I loved my mother much, much before cancer _killed_ her at 52. That was not a
gift, that was her body malfunctioning and our ignorance about how to fix it.

I have no need for death or grief to love or to value life, thank you very
much.

And I don't keep my mouth shut about this because I worry about the real
consequences of that philosophy. At any other moment of human history
acceptance of death was perhaps the only sane thing to do, because there was
no alternative. But we have now a scientific civilization and we should be
fighting it, instead of rationalizing it.

~~~
wpietri
That's a false dichotomy. We can fight to extend life at the same time we
accept death as inevitable.

I have a friend who's a very dedicated doctor, and a very dedicated Buddhist.
So much so that they're arranging a version of the charnel ground [1]
meditation. But rather than sit in an actual charnel ground, my friend has
requested photos from the research facilities that study human decomposition.

To the average American, that sounds hopelessly morbid. But people practicing
it see it as necessary to fully understanding death. And thereby, to
understand and appreciate life.

[http://en.wikipedia.org/wiki/Charnel_ground](http://en.wikipedia.org/wiki/Charnel_ground)

------
mtraven
Jaimie Heywood started his own drug research pipeline to try to cure his
brother's ALS. That failed, but the effort has inspired a number of other
unconventional research efforts.
[http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...](http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html)

~~~
andrewem
The research lab that Jamie founded is ALS TDI [1], which has a database of
ALS clinical trials [2]. Jamie later co-founded PatientsLikeMe, a web site for
sharing medical data which has over 6,000 users who are patients with ALS [3],
the first of whom was his brother Stephen [4].

(Full disclosure: I work for PatientsLikeMe.)

[1] [http://www.als.net/](http://www.als.net/) [2] [http://www.als.net/ALS-
Research/ALS-Clinical-Trials/](http://www.als.net/ALS-Research/ALS-Clinical-
Trials/) [3] [https://www.patientslikeme.com/conditions/9-als-
amyotrophic-...](https://www.patientslikeme.com/conditions/9-als-amyotrophic-
lateral-sclerosis) [4]
[https://www.patientslikeme.com/patients/view/40](https://www.patientslikeme.com/patients/view/40)

------
msie
The body is still such a mysterious device. It's so frustrating that we still
can't figure out diseases like ALS. The greatest invention would be a body
debugger.

~~~
toomuchtodo
_The greatest invention would be a body debugger._

Imaging + Genome Sequencing + Blood Tests

Still pretty barbaric compared to what we'll see in the future, but useful
while we drag ourselves forward.

Anecdote: I was bit by a tick about 2 weeks ago. To get a lyme
disease/meningitis test done, I had to pay my copay ($30) at my primary doctor
(for him to approve the tests) and then had to make another appointment to
have my blood drawn and tested by Lab Corp (~$200). I then had to wait for my
doctor to call my back because Lab Corp would not provide my results directly
to me (!!!).

Like I said. Barbaric.

~~~
tankbot
Seems like much ado. If I was bitten by a tick (or twenty, as has happened
before) I would pull it off and flick it, then immediately forget about the
whole thing.

Do you see a doctor after every time you get into a car? Because that is far
more likely to kill you than just about anything you can think of.

~~~
DanBC
Here's what the CDC says about Lyme Disease.

([http://www.cdc.gov/lyme/](http://www.cdc.gov/lyme/))

> _If left untreated, infection can spread to joints, the heart, and the
> nervous system. Lyme disease is diagnosed based on symptoms, physical
> findings (e.g., rash), and the possibility of exposure to infected ticks;
> laboratory testing is helpful if used correctly and performed with validated
> methods. Most cases of Lyme disease can be treated successfully with a few
> weeks of antibiotics._

~~~
tankbot
Thanks?[0]

[0] [http://xkcd.com/903/](http://xkcd.com/903/)

------
bsaul
The question of people being frozen in the hope of being revived is mentioned
in a very peculiar way in the "Transmetropolitan" comics (by Waren Elis) . I
really hope for Mr Winborn that the future's going to be a better place :))

~~~
objclxt
Perhaps I am a pessimist, but I don't see the future turning out well for
those who have chosen to cryogenically preserve their bodies.

That's not to say that the people practising it don't believe in what they're
preaching - I'm sure many people involved in the cryonics industry deeply
believe in the technology. But consider this: what value is there in reviving
the dead and frozen rather than preserving the living?

As it stands today, cryonics is an act of faith, not science. And you're more
than welcome to believe in it, just like any other faith, but I personally
don't see why future society would put the needs of the frozen above those of
the living. And unlike some other faiths, it's a very expensive option to
partake in.

~~~
Cass
_But consider this: what value is there in reviving the dead and frozen rather
than preserving the living?_

There'd be lots of value in being able to revive people who died a long time
ago, if only for their value as contemporary witnesses. Hell, a few years ago
the scientific community went pretty crazy for some frozen dude we found in
Austria, and that one was thoroughly dead. [1]

We already don't have anyone left who remembers the First World War. In a few
years, we'll lose the last Holocaust survivor. Wouldn't it be nice to be able
to preserve some of that first-hand experience? And come on, how cool would it
be to be able to unfreeze an Ancient Egyptian, or a bunch of people from the
Middle Ages?

I agree that the future probably won't have a use for a whole horde of our
living dead, but I can see there being quite a bit of interest in reviving a
few hundred or thousand people - and once you've gone to all the trouble to
develop the technology, maybe it'll be cheap enough to go to the trouble of
unfreezing everyone else.

1:
[http://en.wikipedia.org/wiki/%C3%96tzi](http://en.wikipedia.org/wiki/%C3%96tzi)

~~~
randomchars
> And come on, how cool would it be to be able to unfreeze an Ancient
> Egyptian, or a bunch of people from the Middle Ages?

WTF? How would you like to be revived 2000 years after you died, with everyone
and everything you loved gone, in a place that looks nothing like home, only
to be shown around like an animal in a zoo?

------
andyjohnson0
Previous discussion of Aaron's situation here:
[https://news.ycombinator.com/item?id=4229108](https://news.ycombinator.com/item?id=4229108)

------
indrax
I think these campaigns are great, both for giving these people a chance and
drawing attention to cryonics.

But it can't go on, this is not a stable or reliable way to fund cryonics.

Sooner or later the novelty will wear off and the money will run out, or
someone just won't be sympathetic enough, and the goal will not be met.

Life insurance is the way to handle this for most people. Charity needs to be
for the exceptional cases.

------
webXL
My brother was diagnosed with this awful disease about a year ago. He's 45 and
has two children a few years older than Aaron's, so this definitely hits home.
He already has a very hard time speaking, which means the disease started off
by attacking his respiratory system. Aaron seems to be doing OK in that
regard, but who knows how quickly that will go.

What's frustrating is that he can't qualify for experimental treatments unless
his lung capacity is at a certain level (e.g. Min. Vital Capacity here:
[http://www.alsconsortium.org/trial.php?id=1](http://www.alsconsortium.org/trial.php?id=1)).
This is one reason why we need to get more money into ALS research and
treatment. Please consider a donation to the ALS Association at
[http://www.alsa.org/](http://www.alsa.org/). Thank you.

------
grigy
Early this year my father was diagnosed ALS. During one year his hand muscles
are completely gone. Though the legs are still OK but the disease does
progress rapidly and it's just matter of time.

This is terrible disease. I know how hard it is for his family.

------
RKearney
Just a heads up, but our Barracuda Web Filter blocked this domain due to
Pornography.

~~~
fnordfnordfnord
The problem with web filters is ████████████████████████████████████████. I
didn't see any porn there, (and I'm fairly confident that I would have been
able to recognize it.)

~~~
RKearney
I wasn't implying the domain was actually a pornographic site. I was pointing
it out so the site owner could potentially get it resolved.

~~~
fnordfnordfnord
My mistake. I hate dodgy content filtering, and reacted before I considered
alternate meanings for your comment. Upvoted you for being helpful.

------
marcosscriven
"This is your opportunity to think big. Like, go skinny dipping in the methane
oceans of Neptune."

I can't comment on his blog directly, so my answer to him is:

Find the nearest intelligent lifeform to our solar system, and let them know
exactly where we are, and that we'd like to have a chat please.

~~~
Stranger2013
"Find the nearest intelligent life form" ...that is not carnivorous and is not
interested in our resources and is not interested in exterminating us for
whatever reason.

------
psb
I think it would be nice if we could do something like polymath (from Terry
Tao) for medicine. Maybe have a combination of medical experts + statisticians
+ bright people collaborate on a large scale to tackle some of the health
problems out there.

------
alexvr
My grandfather died of ALS a few years ago in his late 70s. It's sad and
ironic, but he was a runner until the last three or four months of his life,
when the disease rapidly crippled him and took his life. He was the sort of
guy you would expect to live well into his 90s: He ate a perfect diet and
exercised like he was 35. At the time, my grandmother was battling bone
cancer, and we were quite concerned that my grandfather would be depressed
living for multiple decades without his wife. Unfortunately and surprisingly,
he died almost two years before my grandmother.

------
hawkharris
This article was very sad, moving and, in a sense, motivational. Thinking
about Aaron's situation makes me put all of my problems in perspective and
realize how trivial most of them are.

------
ChuckMcM
I hope we can figure out the mechanics here of ALS and reverse or arrest them.
I was reminded of the article below I read in Scientific American where
questions are asked about Stephen Hawkings success in staying alive.

[http://www.scientificamerican.com/article.cfm?id=stephen-
haw...](http://www.scientificamerican.com/article.cfm?id=stephen-hawking-als)

------
rikelmens
Dear Aaron, you've probably heard about the Neuralstem and their NSI-566
product which is still in the trial phase. But in case you haven't here is the
info: [http://www.neuralstem.com/cell-therapy-for-
als](http://www.neuralstem.com/cell-therapy-for-als)

------
Eliezer
Slashdotted for me, anyone got a backup link?

~~~
kareemm
Cached:

[https://webcache.googleusercontent.com/search?q=cache:5_8ePS...](https://webcache.googleusercontent.com/search?q=cache:5_8ePS-
bGMsJ:aaronwinborn.com/blogs/aaron/monday-was-my-46th-birthday-and-likely-my-
last-anything-awesome-i-should-try-after-i-die+&cd=1&hl=en&ct=clnk)

~~~
Eliezer
Thanks! (Reads.) Now _that_ is the spirit.

------
rogerthis
Anyone should read Viktor Frankl's works.

------
websitescenes
Thank you.

