seven years into my illness I learned
that a surgery might help me since I’d
spent the last seven years confined to a
hospital bed in my living room this was
amazing news but there was a problem no
good surgery existed and the only
surgery that did exist would give me a
new disease now doctors take an oath to
do no harm so the idea of giving a
patient a new disease in the hopes that
it’s better than the one they have is
not very appealing and frankly I didn’t
want a new disease either so I was in a
trap calling the surgeons wouldn’t get
me the surgery but not calling the
surgeons wouldn’t get me the surgery
either so what was left well I decided
that if I needed a surgery and there
wasn’t one then I’d invent one now I’m
not a surgeon and I’m not a doctor I was
a homebound disabled college dropout so
how does a patient get to the point
where they truly believe that their best
path forward is to invent their own
surgery well I guess that started seven
years earlier in 1999 when I was 21 I
got sick I just finished my junior year
and so I just finished my junior year in
college and I’d taken a summer
biochemistry research position at the
University of Kansas when I came down
with what the doctors told me was mono
but after months of rest I got worse not
better
then my health deteriorated even further
I had to drop out of school and I became
homebound I was a grown man laying on
the floor of my house and I was unable
to function my heart was racing the room
was spinning and I had painful cramping
muscles I could get a heart rate of a
hundred and forty for several hours even
while laying just for meeting a peanut
butter and jelly sandwich and sometimes
my heart would beat so hard that you
could put a piece of loose-leaf paper on
my chest and watch it flutter I was
exhausted all the time
but rest cured nothing by my 22nd
birthday it was hard for me to change a
lightbulb I could reach up and take the
old bulb out but I would have to rest
before I put a new one in because it was
too hard for me to keep my limbs away
from my body for that long
my life was a disaster so I turned to
the doctors for help I saw a series of
specialists and they couldn’t tell me
what was wrong or what would help so
even though I was bed bound 22 hours a
day and could walk only fifty feet I
decided to take control
I would partner with the doctor sure but
where answers eluded us I would take the
lead and I would tackle my problem like
a scientist so I started reading
thousand and two thousand page medical
texts I figured if it was something
common the doctors would have found it
so I figured I was looking for something
rare and about a year into my illness I
came up with something I fear eyes that
there was likely an entire class of
autonomic nervous system disorders the
autonomic nervous system controls heart
rate blood pressure metabolism and
digestion and I contended that if this
system malfunctioned it would create
problems with heart rate blood pressure
metabolism and digestion
problems like we were seeing in my case
so I wrote this up and I took it to the
doctors it complete with bibliography
and they said problems like you
described don’t exist and I said but
they could see doctors practice from
experience so the idea that a patient
has come into their office and theorized
a class of disorders that they don’t
routinely encounter and that they don’t
know anyone who treats that sounds
absurd but the idea for me tackling this
as a scientist the idea that there was a
complicated system in the body and that
nothing could go wrong with it that
sounded absurd so that was the stalemate
and that’s where things sat for another
nine months until I finally got a
computer with internet access and within
a month I had found a non-profit devoted
to the kinds of problems I fear eyes
digs isten and we’re told did not it
turns out that disorders of the
autonomic nervous system are called
dysautonomia z’ so I kept reading I had
friends who graduated and gone on to
medical school and I would look up
journal articles and get the citations
send them to them and have them send me
the articles and so I read and read and
within 18 months I had come up with an
idea for a proposed treatment for my own
disorder and been invited to present a
short paper at an international medical
conference devoted to dis aughtta no
Mia’s now when I went to the conference
I was going as a scientist not a patient
but it was hard to keep them separate
the first time I met an autonomic expert
I cried it was at lunch so I tried not
to but I’ve been sick for three years
and I’d spent two years contending these
problems existed and I was finally in a
room full of people who knew I was right
and they come from all over from Harvard
Vanderbilt Cleveland Clinic and overseas
the poster before mine was from the Mayo
Clinic and the poster after mine was
from Japan and in the middle was me a 24
year old patient in a reclining
wheelchair outlining a proposed
treatment for my own disorder now the
talk went well but I hadn’t gone there
just to talk
I’d gone to find a collaborator somebody
to work with and on that I came home
empty it took me another 18 months to
find an autonomic expert to work with so
I’ve been sick for five years and that’s
when dr. H Cecil Coghlan at the
University of Alabama Birmingham and I
started working together
dr. Coghlan was a pioneer in the field
and a genius and you can tell by the
picture he’s engaged he wanted to work
with me and that was amazing
so dr. Coghlan testing showed that I had
a very severe dissident Omiya and we
together tried my proposed treatment it
was a new use for an old drug it was an
ICU drug and intensive care unit drug
that I’d come up with a new way to use
and it halted my decline but I remained
very sick it took dr. Coghlan and I
another two years to figure out exactly
what was going on and it turned out that
I had either primary hyper F&F anemia or
adrenal medulla e hyperplasia now both
of these are a mouthful so when I would
talk to some of the researchers in the
field on the phone we decided to call it
Lynsey syndrome because Lindsay is my
last name I thought it was a catchy name
but it was also a rare disease see we’ve
had 45 US presidents I was only able to
find 32 cases documented worldwide of
adrenal medulla Airi hyperplasia and
five of the other so statistically you
were more likely to be elected president
than to be diagnosed with one of these
problems but there was good news
whichever one of these it was it meant
that the center of my adrenal gland was
what was making me sick and if we could
remove that hyperactive tissue my life
should get better so this is what an
adrenal gland looks like the cortex the
outside makes steroid hormones that you
need to live and the inside makes
adrenaline in my case the middle the
medulla was dumping too much adrenaline
into my blood and I was hypersensitive
to it so again take out the middle and
my life gets better but there was a
problem there was no procedure to do
that one of the surgeons in the field
described it as
trying to cut the peanut butter out of a
peanut butter sandwich and leave the
bread a nearly impossible task but it’s
even worse than that because the adrenal
gland is not the size of a sandwich so
that is my thumb and that is 11 slices
of human adrenal gland so I needed a
surgery that didn’t exist and it didn’t
exist because everyone thought it was
impossible but nearly impossible or not
it was still my best chance to get well
and that’s when I decided I would invent
one so how do you invent a surgery I
didn’t know and it took me four years it
took me two and a half years to prove
that this surgery was possible and
another 18 months to build the team to
do it and I worked with everyone from
the chairman of the President’s Council
on biomedical ethics to the Japanese
ambassador’s son who I sent to Tokyo
with my medical records to meet with
surgeons there and for a year I came up
with nothing it was all dead ends and
then I got my first big break it turned
out that the surgery I needed was
possible in rats a biology professor at
Georgia State had done the surgery I
needed in rats at 1980 and he said he
sliced into the gland with a razor blade
and squeeze gently until the middle
popped out like a pimple well when I
relayed that to the human surgeons they
so I kept digging and that’s when I
found that the surgery I needed had been
done in cats at Harvard in 1926 the
problem was that scientists hadn’t
explained how he’d done it he spent half
a page on how he accidentally invented
the beer bong and only only half a
sentence on the surgery that might save
my life so I had to keep looking and
then I found that the surgery I needed
had been done in dogs in Oregon in 1940
and that guy hadn’t explained it either
so this was insane biology professors
who weren’t surgeons 80 years ago
thought so little of how they did this
surgery that they didn’t bother to
explain it in their research articles
but the world’s best surgeons today
thought it was impossible so I had to
keep digging because if I could find
that missing link maybe I could get the
surgery and I eventually found the
answer it came in an article from 1923
from Argentina now that’s the year
before the Great Gatsby was published
and bernardo who say a Nobel
prize-winner did the surgery I needed on
eleven dogs and he described it like
this he said he sliced into the adrenal
gland with a sharp Gillette blade and
opened it like a book then he scooped
out the middle with a small hard spoon
people were stunned but even then it’s
not like the gates just swung open it
took me another 18 months to build the
team to do the surgery and when I got
the surgery at the University of Alabama
Birmingham the surgeon decided to use
the da Vinci surgical robot instead of a
spoon now I’ve been sick 11 years when I
got the surgery and even after I got it
at first we didn’t know whether it was
gonna help me but soon my body started
to change three weeks after the surgery
I could sit for three hours straight not
just a few minutes and I started being
able to stand longer and walk further
and so I walked further every day when I
got the surgery in September I had only
been able to walk 50 feet by Christmas I
could walk a couple of miles so on
Christmas Eve 2010 I walked out of my
house and I walked in the snow to
midnight mass I stood in the back of the
church of this church and not too far
from my home where I’d been dozens of
times growing up but this time it felt
like a miracle with tears streaming down
my face
one of my neighbors said to me that a
miracle is only a miracle if you can’t
after spending 11 years homebound in
bed-bound
i took a long forgotten 90 year old dog
surgery and built a medical team to turn
it into a modern human surgery that took
me from wheelchair to walking that is
the explanation to me that still sounds
now I needed a second surgery because
there are two adrenal glands and it took
me almost two years to get the second
one and the cut recovery from that was
complicated but it worked so in all my
journey had taken 14 years and I’d spent
eleven of those bed-bound
but so when I’d gotten sick I’ve gone
from heading having mud on the cuffs of
my pants at fraternity house basements
to walking out of my house in my 30s
everyone I knew had gotten married build
careers had kids but after 14 years I
had a chance to build a future so I
wanted to talk just a little bit about
problem-solving okay when you’re in your
day to day life it’s probably fine for
you to be an optimist or a pessimist
maybe it’s better to be an optimist but
when you not when you face big problems
when you face big challenges both of
those are a trap pessimism it’s hard to
try when you think you’re going to fail
optimism helps you try but you’re
invested in the idea that you’re going
to succeed and so when you fail it can
be crushing the problem I see with both
of these is that they require you to
decide what’s going to happen and
emotionally invest in that before you’ve
even tried so if optimism is a trap and
pessimism is a trap what’s left well
when I face big problems I try to face
them as a man of hope science and faith
now hope is the belief that something
positive can happen don’t bother looking
up dictionary definitions of hope
they’re long and they’re wrong hope is
simply the belief that something
positive can happen science you don’t
have to have an emotionally invested
interest in success or failure before
you’ve even tried in science we would
call that having a rooting interest your
job is to run the experiment your
fidelity is to the process and faith so
much of life is beyond our control
that’s not the way I like it but it’s
true so faith helps me focus on my job
and what’s my job
I try God creates outcomes now these
three things are part of a mindset that
helps sustain me through almost a decade
and a half of struggle and suffering and
failure and they can help you tackle big
challenges too hope keeps me open to
gratitude to positive things that can
happen every day and it also keeps me
open to success bigger than my dreams
science keeps me focused on running the
experiment and avoiding an undue
emotional investment in something before
I’ve even started and faith keeps me
focused on doing my best because that’s
something I can control I try God
creates outcomes so I still have health
challenges but when I got my health back
after 14 years I wrote an unpublished
book I went back to school and finished
my biology degree and I started a
company that helps I started a business
that helps companies innovate and make
unlikely things happen but before all of
that when I was first getting better and
it first looked like this might work out
I was pretty stunned and I called a
friend of mine Matt Krentz the most
competent person I’ve ever met and I
said Matt what do you do when you’ve won
and there are no more rabbits to pull
out of the Hat and he said you put the
so that’s what I did when I got my
health and it settled down I went on
vacation of the Bahamas I saw the ocean
for the first time and I learned that I
can’t get out of a hammock or the dam
and then I went for a walk on the beach
thank you
[Applause] thank you very much
that a surgery might help me since I’d
spent the last seven years confined to a
hospital bed in my living room this was
amazing news but there was a problem no
good surgery existed and the only
surgery that did exist would give me a
new disease now doctors take an oath to
do no harm so the idea of giving a
patient a new disease in the hopes that
it’s better than the one they have is
not very appealing and frankly I didn’t
want a new disease either so I was in a
trap calling the surgeons wouldn’t get
me the surgery but not calling the
surgeons wouldn’t get me the surgery
either so what was left well I decided
that if I needed a surgery and there
wasn’t one then I’d invent one now I’m
not a surgeon and I’m not a doctor I was
a homebound disabled college dropout so
how does a patient get to the point
where they truly believe that their best
path forward is to invent their own
surgery well I guess that started seven
years earlier in 1999 when I was 21 I
got sick I just finished my junior year
and so I just finished my junior year in
college and I’d taken a summer
biochemistry research position at the
University of Kansas when I came down
with what the doctors told me was mono
but after months of rest I got worse not
better
then my health deteriorated even further
I had to drop out of school and I became
homebound I was a grown man laying on
the floor of my house and I was unable
to function my heart was racing the room
was spinning and I had painful cramping
muscles I could get a heart rate of a
hundred and forty for several hours even
while laying just for meeting a peanut
butter and jelly sandwich and sometimes
my heart would beat so hard that you
could put a piece of loose-leaf paper on
my chest and watch it flutter I was
exhausted all the time
but rest cured nothing by my 22nd
birthday it was hard for me to change a
lightbulb I could reach up and take the
old bulb out but I would have to rest
before I put a new one in because it was
too hard for me to keep my limbs away
from my body for that long
my life was a disaster so I turned to
the doctors for help I saw a series of
specialists and they couldn’t tell me
what was wrong or what would help so
even though I was bed bound 22 hours a
day and could walk only fifty feet I
decided to take control
I would partner with the doctor sure but
where answers eluded us I would take the
lead and I would tackle my problem like
a scientist so I started reading
thousand and two thousand page medical
texts I figured if it was something
common the doctors would have found it
so I figured I was looking for something
rare and about a year into my illness I
came up with something I fear eyes that
there was likely an entire class of
autonomic nervous system disorders the
autonomic nervous system controls heart
rate blood pressure metabolism and
digestion and I contended that if this
system malfunctioned it would create
problems with heart rate blood pressure
metabolism and digestion
problems like we were seeing in my case
so I wrote this up and I took it to the
doctors it complete with bibliography
and they said problems like you
described don’t exist and I said but
they could see doctors practice from
experience so the idea that a patient
has come into their office and theorized
a class of disorders that they don’t
routinely encounter and that they don’t
know anyone who treats that sounds
absurd but the idea for me tackling this
as a scientist the idea that there was a
complicated system in the body and that
nothing could go wrong with it that
sounded absurd so that was the stalemate
and that’s where things sat for another
nine months until I finally got a
computer with internet access and within
a month I had found a non-profit devoted
to the kinds of problems I fear eyes
digs isten and we’re told did not it
turns out that disorders of the
autonomic nervous system are called
dysautonomia z’ so I kept reading I had
friends who graduated and gone on to
medical school and I would look up
journal articles and get the citations
send them to them and have them send me
the articles and so I read and read and
within 18 months I had come up with an
idea for a proposed treatment for my own
disorder and been invited to present a
short paper at an international medical
conference devoted to dis aughtta no
Mia’s now when I went to the conference
I was going as a scientist not a patient
but it was hard to keep them separate
the first time I met an autonomic expert
I cried it was at lunch so I tried not
to but I’ve been sick for three years
and I’d spent two years contending these
problems existed and I was finally in a
room full of people who knew I was right
and they come from all over from Harvard
Vanderbilt Cleveland Clinic and overseas
the poster before mine was from the Mayo
Clinic and the poster after mine was
from Japan and in the middle was me a 24
year old patient in a reclining
wheelchair outlining a proposed
treatment for my own disorder now the
talk went well but I hadn’t gone there
just to talk
I’d gone to find a collaborator somebody
to work with and on that I came home
empty it took me another 18 months to
find an autonomic expert to work with so
I’ve been sick for five years and that’s
when dr. H Cecil Coghlan at the
University of Alabama Birmingham and I
started working together
dr. Coghlan was a pioneer in the field
and a genius and you can tell by the
picture he’s engaged he wanted to work
with me and that was amazing
so dr. Coghlan testing showed that I had
a very severe dissident Omiya and we
together tried my proposed treatment it
was a new use for an old drug it was an
ICU drug and intensive care unit drug
that I’d come up with a new way to use
and it halted my decline but I remained
very sick it took dr. Coghlan and I
another two years to figure out exactly
what was going on and it turned out that
I had either primary hyper F&F anemia or
adrenal medulla e hyperplasia now both
of these are a mouthful so when I would
talk to some of the researchers in the
field on the phone we decided to call it
Lynsey syndrome because Lindsay is my
last name I thought it was a catchy name
but it was also a rare disease see we’ve
had 45 US presidents I was only able to
find 32 cases documented worldwide of
adrenal medulla Airi hyperplasia and
five of the other so statistically you
were more likely to be elected president
than to be diagnosed with one of these
problems but there was good news
whichever one of these it was it meant
that the center of my adrenal gland was
what was making me sick and if we could
remove that hyperactive tissue my life
should get better so this is what an
adrenal gland looks like the cortex the
outside makes steroid hormones that you
need to live and the inside makes
adrenaline in my case the middle the
medulla was dumping too much adrenaline
into my blood and I was hypersensitive
to it so again take out the middle and
my life gets better but there was a
problem there was no procedure to do
that one of the surgeons in the field
described it as
trying to cut the peanut butter out of a
peanut butter sandwich and leave the
bread a nearly impossible task but it’s
even worse than that because the adrenal
gland is not the size of a sandwich so
that is my thumb and that is 11 slices
of human adrenal gland so I needed a
surgery that didn’t exist and it didn’t
exist because everyone thought it was
impossible but nearly impossible or not
it was still my best chance to get well
and that’s when I decided I would invent
one so how do you invent a surgery I
didn’t know and it took me four years it
took me two and a half years to prove
that this surgery was possible and
another 18 months to build the team to
do it and I worked with everyone from
the chairman of the President’s Council
on biomedical ethics to the Japanese
ambassador’s son who I sent to Tokyo
with my medical records to meet with
surgeons there and for a year I came up
with nothing it was all dead ends and
then I got my first big break it turned
out that the surgery I needed was
possible in rats a biology professor at
Georgia State had done the surgery I
needed in rats at 1980 and he said he
sliced into the gland with a razor blade
and squeeze gently until the middle
popped out like a pimple well when I
relayed that to the human surgeons they
so I kept digging and that’s when I
found that the surgery I needed had been
done in cats at Harvard in 1926 the
problem was that scientists hadn’t
explained how he’d done it he spent half
a page on how he accidentally invented
the beer bong and only only half a
sentence on the surgery that might save
my life so I had to keep looking and
then I found that the surgery I needed
had been done in dogs in Oregon in 1940
and that guy hadn’t explained it either
so this was insane biology professors
who weren’t surgeons 80 years ago
thought so little of how they did this
surgery that they didn’t bother to
explain it in their research articles
but the world’s best surgeons today
thought it was impossible so I had to
keep digging because if I could find
that missing link maybe I could get the
surgery and I eventually found the
answer it came in an article from 1923
from Argentina now that’s the year
before the Great Gatsby was published
and bernardo who say a Nobel
prize-winner did the surgery I needed on
eleven dogs and he described it like
this he said he sliced into the adrenal
gland with a sharp Gillette blade and
opened it like a book then he scooped
out the middle with a small hard spoon
people were stunned but even then it’s
not like the gates just swung open it
took me another 18 months to build the
team to do the surgery and when I got
the surgery at the University of Alabama
Birmingham the surgeon decided to use
the da Vinci surgical robot instead of a
spoon now I’ve been sick 11 years when I
got the surgery and even after I got it
at first we didn’t know whether it was
gonna help me but soon my body started
to change three weeks after the surgery
I could sit for three hours straight not
just a few minutes and I started being
able to stand longer and walk further
and so I walked further every day when I
got the surgery in September I had only
been able to walk 50 feet by Christmas I
could walk a couple of miles so on
Christmas Eve 2010 I walked out of my
house and I walked in the snow to
midnight mass I stood in the back of the
church of this church and not too far
from my home where I’d been dozens of
times growing up but this time it felt
like a miracle with tears streaming down
my face
one of my neighbors said to me that a
miracle is only a miracle if you can’t
after spending 11 years homebound in
bed-bound
i took a long forgotten 90 year old dog
surgery and built a medical team to turn
it into a modern human surgery that took
me from wheelchair to walking that is
the explanation to me that still sounds
now I needed a second surgery because
there are two adrenal glands and it took
me almost two years to get the second
one and the cut recovery from that was
complicated but it worked so in all my
journey had taken 14 years and I’d spent
eleven of those bed-bound
but so when I’d gotten sick I’ve gone
from heading having mud on the cuffs of
my pants at fraternity house basements
to walking out of my house in my 30s
everyone I knew had gotten married build
careers had kids but after 14 years I
had a chance to build a future so I
wanted to talk just a little bit about
problem-solving okay when you’re in your
day to day life it’s probably fine for
you to be an optimist or a pessimist
maybe it’s better to be an optimist but
when you not when you face big problems
when you face big challenges both of
those are a trap pessimism it’s hard to
try when you think you’re going to fail
optimism helps you try but you’re
invested in the idea that you’re going
to succeed and so when you fail it can
be crushing the problem I see with both
of these is that they require you to
decide what’s going to happen and
emotionally invest in that before you’ve
even tried so if optimism is a trap and
pessimism is a trap what’s left well
when I face big problems I try to face
them as a man of hope science and faith
now hope is the belief that something
positive can happen don’t bother looking
up dictionary definitions of hope
they’re long and they’re wrong hope is
simply the belief that something
positive can happen science you don’t
have to have an emotionally invested
interest in success or failure before
you’ve even tried in science we would
call that having a rooting interest your
job is to run the experiment your
fidelity is to the process and faith so
much of life is beyond our control
that’s not the way I like it but it’s
true so faith helps me focus on my job
and what’s my job
I try God creates outcomes now these
three things are part of a mindset that
helps sustain me through almost a decade
and a half of struggle and suffering and
failure and they can help you tackle big
challenges too hope keeps me open to
gratitude to positive things that can
happen every day and it also keeps me
open to success bigger than my dreams
science keeps me focused on running the
experiment and avoiding an undue
emotional investment in something before
I’ve even started and faith keeps me
focused on doing my best because that’s
something I can control I try God
creates outcomes so I still have health
challenges but when I got my health back
after 14 years I wrote an unpublished
book I went back to school and finished
my biology degree and I started a
company that helps I started a business
that helps companies innovate and make
unlikely things happen but before all of
that when I was first getting better and
it first looked like this might work out
I was pretty stunned and I called a
friend of mine Matt Krentz the most
competent person I’ve ever met and I
said Matt what do you do when you’ve won
and there are no more rabbits to pull
out of the Hat and he said you put the
so that’s what I did when I got my
health and it settled down I went on
vacation of the Bahamas I saw the ocean
for the first time and I learned that I
can’t get out of a hammock or the dam
and then I went for a walk on the beach
thank you
[Applause] thank you very much
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