Out of Breath (2018) - full transcript

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.