Original subtitles

This is North Korea...

in an area few outsiders are allowed to visit.

(laughs)

I am a Korean-American filmmaker.

I never thought I would find myself here.

And I never thought I would get to know

and film these North Koreans as I have.

(Austere Music)

My grandparents were from North Korea.

During the Korean War,

they fled to the south like so many others...

leaving behind friends and family.

In 1953 the ceasefire between the North

and South Korea was signed

and border was closed.

My grandparents never saw their home again.

I first met Dr. Linton in 2010 for an interview.

He comes from a long line of Southern

Presbyterian missionaries in Korea.

Through his foundation – called Eugene Bell –

he has been working with the North Korean government

for over 20 years to provide aid.

I visited North Korea in 1979.

The North Korean government had won the right

to host the World Table Tennis.

I was not very interested in ping pong

but the prospect of going to North Korea

was very exciting to me and so I signed up as an observer.

There was another Korea there that I had never seen before.

Very different but in some ways very much the same.

During our meeting, he painted a very different picture

of North Korea than what was in my mind.

I wanted to experience the country for myself.

I was finally able to join a trip with Dr. Linton

and his team in the spring of 2013.

I ended up visiting North Korea with them

for a total of four times over two years.

It's less than a four-hour drive from Seoul

to Pyongyang, the capital of North Korea.

But because this border is closed, we had to fly

to China first, and enter North Korea from there.

With the additional time needed for visas,

it took us about 36 hours

to reach a city that was only 122 miles away

from where we started.

What if you go into a new country

that you've never visited before?

Usually you're on the plane that's landing,

and you have this feeling in your stomach.

There's a little bit of anxiety, nervousness…

There's a lot more media about North Korea…

you know, your family's worried,

that makes you more worried than normal.

(laughter)

In 2008, the North Korean Ministry of Public Health

and the Eugene Bell Foundation started treating

patients with a deadly form of tuberculosis.

Called multi-drug resistant TB or MDR-TB,

it does not respond to normal treatment.

A small team of multi-national volunteers –

including academics, priests, and a doctor –

travel to North Korea every six months to deliver

medicine and check how the MDR-TB patients are doing.

The further we drove away from Pyongyang,

the more it felt like we were traveling back in time.

The North Korean countryside reminded me of old photos

I had seen of South Korea during the 50's.

We were often jolted around on unpaved roads

for up to 5 hours to reach the TB centers.

It's a long journey, especially for the older volunteers.

One of the priests mentioned it was

like being in a washing machine.

(truck braking)

Obviously when I stand in front of North Koreans,

many of whom have never even seen a

non-Asian in their entire lives,

then I represent something of a visual spectacle.

Representing an American,

who they have been taught all of their lives

to believe is their enemy, is another challenge.

So basically, I start with two strikes against me.

So what I do is, I tell them that I was a patient.

Which I was, twice.

At least to establish a little common ground.

Multi-drug resistant TB is Tuberculosis that

has mutated and is no longer killed by drugs.

Because TB requires treatment with

multiple drugs, it's usually four.

So multiple drug resistant TB is when

you're resistant to most of those drugs.

It's almost going back in time to pre anti-biotic era.

So you can take drugs but it's like being untreated.

The TB causes a progressive destruction of the lungs.

For him, the oxygen that he brings in, he can't extract

the oxygen from the air in the same way that you can.

So he breathes faster.

It's like if you were running in a marathon.

Even though he is resting on a cane,

his heart and lungs are working overtime.

Sometimes you have patients who really become short of breath,

so that at the end of their lives,

it's actually really difficult to see

because you can see them gasping for air.

It is a very painful way to die because it takes so long.

Dr. Seung is a renowned Korean-American

TB specialist from Boston.

His work takes him to many poor countries

around the world, including North Korea.

Through him, I started to understand

just how devastating MDR-TB can be,

not just for the patients, but their families as well.

I think that if you've never seen TB, it is not scary at all.

I wasn't scared of it.

But if you live in a country with a lot of TB, it's scary

because it's a really painful disease.

But the cruelest thing I think about TB

is that it's infectious.

You don't just die. You actually kill the people that you love.

We traveled to 12 MDR-TB treatment centers every trip

where 1,500 MDR-TB patients are in treatment at any given time.

The MDR-TB patients live at treatment centers

until they are cured.

The drugs are toxic to humans but rather weak against TB,

the course of treatment is 18 months or more.

So many people call MDR-TB - the contagious cancer.

(coughing)

How do you diagnose MDR-TB or TB?

When the mycobacteria infects the lungs, it produces... pus.

Like any abscess. And patients cough up this material.

If you analyze that sputum, you can see TB bacteria in there.

So almost all of the diagnostics tests are aimed at

finding that mycobacteria in the sputum in patients.

(coughing offscreen)

Well, if a priest has any faith, where should you be?

Where people are suffering. And you see so much of that.

So I see the suffering and wish to unite myself with that.

When you take the sputum, then you can watch,

you remember the faces because at the time

they are most vulnerable.

001. We'll mark him, we'll mark him...

We'll put the card over here and mark him as entered the program.

Shall I just give this to...?

Yeah, go ahead and do it as you normally do.

And then if I can't get a reading...

Even though the North Koreans don't have much,

they always prepare meals for the volunteers,

often with fish they've caught in nearby rivers

or vegetables picked from the hills.

On my second or third visit, a nurse I was rather close to

called me and another volunteer to her room

and gave us chocolate ice cream.

She told us she couldn't afford to buy it for everyone

but was able to get two for us.

It was such an endearing gesture,

and it went against all of the prejudice I had built up

over many years growing up in the United States.

One of the volunteers told me:

it doesn't mean what I knew was false,

but it was only one part of reality.

The disease he wants to treat is the hardest disease to treat.

So everything about this project is unbelievable.

I would not do this project.

I would not have done the project.

If I was asked to do the project now, I would refuse.

It is impossible.

There isn't anybody but Dr. Linton who can do that project.

Every aspect of the work is difficult.

So, the fundraising is extremely difficult.

Who wants to raise money, who wants

to donate money for North Koreans?

(severe coughing offscreen)

(camera click)

Professor Avram Agov teaches Korean history in Canada.

He is one of the regular volunteers.

Given the number of patients and centers,

I made thousands of photos of their faces.

Of course lots of suffering.

It's a very debilitating disease,

as it is well known and documented

but to see this first hand and to interact with

these people although on such a brief level

was really very sombering and in a way humiliating experience.

This idea that North Korea should be punished...

But we forget that besides the regime and the elite,

there are millions of people.

So we should punish them as well?

So this is one of the paradoxes, and

it's not only about North Korea,

it's about any country we study in general.

We just tend to perceive a country as uniform body

but it's a great misperception.

(piano music)

He is a TB doctor at one of the major North Korean hospitals

and very, very interested in MDR TB.

I think from the Ministry of Health point of view,

he is the lead clinician.

(laughter)

(pop music playing on phone)

Each slot is going to analyze for each patient

which kind of MDR-TB there is,

or which kind of resistance there is... or not.

(machines whirring)

The test is usually two hours

and we have to wait until the end of the test.

If there is nobody next to me,

sometimes it's really boring, too.

And I don't want to empty the room,

because if something happened, or someone is so curious,

it can disturb the machine and we

have to start everything again.

(laughs)

It's my private garden.

- It's like children. - Yeah.

We need to be children in life sometimes.

Doctor Jung is someone I feel is a very professional person.

I think he really likes his patients.

I was very touched one day.

I saw him in the morning and he looked like he was very tired.

So I said, "Oh, you look very tired."

And he said, "I spent all night at

the bedside of one of my patients.

I really wanted to save him but I couldn't. I failed.

It was very painful for me to not save him."

This day, I realized he gives his maximum

for them with the few things he has.

None of the TB centers have reliable

electricity or running water.

So the team has to bring generators to

power the X-ray and diagnostic machines.

Any time anything broke down – and this happened quite often –

we went into a slight panic.

There are no places to buy or fix parts,

so even the doctors in North Korea are good at repairs.

(machine whirring)

(fan whirring)

(sound of child coughing)

What is it?

It's made in Poland.

When I saw this equipment that had the marks

of Poland and Czechoslovakia

most likely from 50s and 60s,

I was surprised that these things still exist,

because it's been such a long time.

The amazing thing is how they maintained

these for many years and they still function,

because they are vulnerable.

They still rely on this equipment

and not only about this hardship,

but also on their ability to keep things running,

no matter how difficult it is.

I met Ms. Park at a TB center in Yang-duk,

a small village in the mountains.

She was one of two pharmacists there.

(man coughing offscreen)

I think on my first visit or second visit,

we came back to the hotel,

I said, "Oh! I forgot to tell that doctor something!"

And I said "Can I just, uh, can we send him a letter?

It's not like I need to tell him this in person.

It's not that complicated.

I just want him to document something a little

differently in the documents that we gave him."

And he said, "Well, you know,

you can tell him in six months."

So, there's a lot of pressure to get things right on that visit,

and so, that's part of the stress.

(laughter)

Imagine: these people come from America,

they drop off these drugs you have never seen before,

they are speaking in these weird accents,

telling you to do things and you had better listen really hard.

And then boom! They're gone.

If you have any questions, you can ask in six months.

It's crazy.

So the likelihood of problems arising

in that situation are extremely high.

So when I leave that site, I am thinking....

'This is never going to work.

I really hope something crazy happens

and all of the patients are alive in six months.'

That's usually what I'm thinking when I leave.

(clapping, female voice singing)

Clearly there's a strong element of South Korean society

that is anti-North Korean government.

You seldom run into someone who is

actually anti-North Korean people.

But antipathy for the Korean government

of North Korea is very strong.

I haven't seen any significant change over the years

I've been involved with North Korea.

(typing)

Hyuna says they're my friends.

She says I have no friends except my flowers.

(laughs)

(Hyuna offscreen) Hello, my friends!

They're miniature African violets

that are raised with wicks.

But it's mainly on how you set it up.

Just like a project in North Korea.

It doesn't require a lot of work if you set it up right.

But if you don't it just doesn't work out at all.

(gentle piano music)

(laughs)

This is a library, that's a fire station.

I've never met a person so

single-mindedly devoted to a cause.

No matter how we start a conversation,

he'll eventually manage to bring it back to MDR-TB.

(energetic Korean pop music)

Hyuna's really good at it.

So what do you do?

When you deal with North Korea,

or any independent culture as an outsider,

you are sort of pulling two worlds together,

and you are not pulling two worlds together that embrace

and sing 'we are the world' and 'kumbaya'

and become one, somehow.

You are pulling together two worlds that repel each other.

North Koreans will not accept your premise

if you insist on doing it your way.

On the other hand, I think they respect you more

if you don't just go along and do it their way.

If you meet not as superior-inferior

because of the flow of aid,

but as... in a sense a partner... and in our case,

they representing their people, we representing a community,

not representing Eugene Bell but a donor community...

and as a representative of each concerned constituent...

hammering out an agreement that is satisfactory for you both.

If you do this on this horizontal level,

it is surprising what you can do.

(gentle music)

The foundation needs to ship supplies almost two months

before the volunteers make the actual trip to North Korea.

Every item needs to first be approved by

South Korea's Ministry of Unification.

The political climate often determines

what they can take and what they can't.

We went back to North Korea six months later.

The WHO collects statistics throughout the world

and the average cure rate is now reported to be about 45%.

In our program we estimate about 75% of our patients are cured.

(door creaking)

More than other patients, clinicians get

very worked up about MDR TB Patients.

I think that part of it is just because you see them a lot.

Whether they are very sick or they have not so very severe TB,

you are going to see them for...18 to 24 months.

So you get emotionally involved with them.

More than you would with other patients.

I have seen this time and time again

with all sorts of clinicians.

And definitely even with me, too. Myself.

(reflective guitar music)

MDR-TB patients must undergo a difficult,

expensive, and toxic drug regimen.

It causes debilitating side effects,

such as hearing loss, depression or psychosis,

and kidney impairment.

The hardship doesn't end there.

Once patients are enrolled in the program,

they must live apart from their families for almost two years.

(coughing)

Youngshim brought her father to the center to be tested,

not knowing she also had MDR-TB.

Because MDR-TB spreads through air,

family members get infected easily.

Her father was in critical condition,

but Youngshim's symptoms were still mild.

Youngshim wanted to return home to be with her father,

losing her chance to be treated.

No matter how hard the patients try, the reality is

that some of them will not respond to the treatment.

In these cases, the treatment is stopped

and the patients die within an average of five years.

(gentle piano music)

These three people –

an American, a South Korean and a North Korean –

are from countries that are technically at war.

Yet they aren't just working together towards a common goal,

but enjoying a friendship that has lasted many years.

(soft piano music)

The number of MDR-TB patients in North Korea -

we don't know for sure

because there hasn't been a scientific survey.

My feeling is, though, that it is much, much larger.

We are reaching maybe only 10%

of all of the patients in the country.

And I think that is the scariest part of it.

It's the feeling that you are not

getting close to the bottom.

And again, this is something that I haven't felt

in other countries.

(applause)

Life is punctuated by rituals.

We are born, we get baptized, we graduate from schools,

we get married, we get buried.

And when they complete the treatment after 18 months,

which is arguably as long as some people

take to get through junior college.

And it's also one that must come to an end,

whether the results have been good or not.

Because in fact, everybody has tried

and has stuck it out to the end.

So we should celebrate it and make

it an event they will remember.

It's a nice ending to what was

obviously a life-altering experience.

Going there over an extended period of time--

and I can't count how many times I have been there

over more than 30 years,

and being involved in many programs

and probably having argued more with North Koreans

than the next 10 people in the world.

After all this experience, I would have to say

that North Korea is neither this nor that.

It is its own self and it is just a shame that

more people don't take time to figure it out.

North Korea is no longer just part of the stories

my grandparents used to tell me...

now I have my own stories to tell.