Transcriber: David DeRuwe Reviewer: Rhonda Jacobs
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 had just finished my junior year in college
(Laughter)
and, so I had 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 140 for several hours even while laying,
just from eating a peanut butter and jelly sandwich.
And sometimes my heart would beat so hard
that you could put 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 light bulb.
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 bedbound 22 hours a day and could walk only 50 feet,
I decided to take control.
I would partner with the doctors, 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've found it,
so I figured I was looking for something rare,
and about a year into my illness, I came up with something.
I theorized 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.
(Laughter)
Problems like we were seeing in my case.
So I wrote this up, and I took it to the doctors,
complete with bibliography, and they said,
"Problems like you describe 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 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 nonprofit devoted
to the kinds of problems I'd theorized existed and was told did not.
It turns out that disorders of the autonomic nervous system
are called dysautonomias.
So I kept reading.
I had friends who'd graduated and gone 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 dysautonomias.
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'd 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'd 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'd 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's testing showed that I had a very severe dysautonomia,
and we, together, tried my proposed treatment.
It was a new use for an old drug.
It was an ICU drug, an 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 hyperepinephrinemia or adrenal medullary hyperplasia.
Now, both of these are a mouthful,
so when I would talk to some of the researchers on the phone,
we decided to call it Lindsay Syndrome
(Laughter)
because Lindsay's 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 medullary 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 eleven 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,
in 1980, and he said he sliced into the gland with a razor blade
and squeezed gently until the middle popped out, like a pimple.
Well, when I relayed that to the human surgeons,
they were not impressed.
(Laughter)
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 scientist hadn't explained how he'd done it.
He spent half a page on how he accidentally invented the beer bong
and only -
(Laughter)
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 Houssay, Nobel Prize winner, did the surgery I needed on 11 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.
Then he sewed it back up.
That was it.
(Laughter)
People were stunned.
But even then, it's not like the gates just swung open.
It took me another 18 months to build a 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.
(Laughter)
Now, I'd been sick 11 years when I got the surgery,
and even after I got it, at first, we didn't know if it was going to 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'd 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, at this church 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 explain it.
OK ...
(Laughter)
After spending 11 years homebound and bedbound,
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 like a miracle.
(Applause)
Now, I needed a second surgery because there were two adrenal glands,
and it took me almost two years to get the second one,
and the recovery from that was complicated, but it worked.
In all, my journey had taken 14 years, and I'd spent 11 of those bedbound,
but -
so when I'd gotten sick, I'd gone from having mud on the cuffs of my pants
at fraternity house basements to walking out of my house in my thirties.
Everyone I knew had gotten married, built 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.
OK, 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 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.
(Laughter)
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 helped 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 you 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 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 hat on and go for a walk."
(Laughter)
So that's what I did.
When I got my health, and it settled down, I went on vacation to the Bahamas.
I saw the ocean for the first time,
and I learned that I can't get out of a hammock worth a damn,
(Laughter)
and then I went for a walk on the beach.
Thank you.
(Applause)
Thank you.
(Cheers)
(Applause)
Thank you very much.