Unrest

Subtitles by explosiveskull

Omar Wasow: Directions to Princeton Hospital.

GPS Service: Getting directions to Princeton Animal Hospital.

Omar: Directions to Princeton Hospital.

Getting directions to Princeton Animal Hospital.

Omar: Princeton Hospital.

Here's Princeton Animal Hospital. It's about two and a half miles south.

Jennifer Brea: Can you ask one more time?

Omar: Hospitals near Princeton.

Searching for youth hostels and Inns.

What were you saying love?

Just one has to be careful.

If you say too little they can't help you and if you say too much

they think you're a kind of mental patient.

Jennifer: From as early as I can remember

I wanted to swallow the world whole.

Dreaming about all the places I would go

and the things I would see

I thought if I dreamed hard enough anything was possible

A film by Jennifer Brea.

Today we talked with a U.S. student studying abroad in Beijing.

Jennifer: Well I know some some of us were kind of scared atually because...

We are constantly telling ourselves a story

about who we are

and where we're going.

For example

that's my husband, Omar.

I met him when I was twenty-five.

We were both at Harvard getting our PhDs

Three months later I knew that I wanted to marry him.

I meet Jen when she's visiting campus and I'm like, "Wow who's that? She's really cute!" And...

Really?

Yeah and...

but I've got no game, right?

So the whole session I'm thinking like, "How do I start a conversation with her?"

And then at the end of the session she comes over and talks to me.

And I was like yes! And she says like, "what is going on tonight?"

and I was just like, "this never happens to me! This never happens to me."

Person filming: Omar holding the back of a kayak flailing all over the place to try to get in.

Hopefully this is just a kayaking trip, not a metaphor.

Jennifer: I mean sure, we all know nothing lasts forever

I just thought I would have more time.

And then one day I got a fever of a hundred and four point seven degrees.

I got better but something wasn't right.

I would go to the kitchen to get a glass of water and then I wouldn't be able to move again.

I don't know what I did to myself. I don't think I can get up off the couch.

I know you might be saying to yourself if I really couldn't stand up why would I be filming it? Well...

I kind of think that someone should see this.

That first year I had six infections.

Okay, turn off the light.

I basically would get out of bed, go to class, and then I was in bed again.[

I'd go to the doctor and he would tell me, "you're just dehydrated. Everyone gets stressed."

So I don't know if this is going to happen at the doctor's office or not but I...

I figure it's good to just keep documenting.

The right side of my face feels numb.

I feel like my brain is misfiring.

Sometimes I have these strange little moments where like my hand will make a fist and I can't open it.

Sometimes I wouldn't be able to speak, I'd have no thoughts, no words.

I would be sensitive to light and the slightest sound could cause excruciating pain.

Omar: I'm gonna stop recording.

Jennifer: No, don't.

It's fine.

Omar: This is perhaps the least chivalrous thing I've ever done in my life.

Okay I'm gonna rest here for a minute.

It happened all of a sudden. I don't know...

it's like someone turned off the lights or something.

Jennifer: I saw every kind of specialist.

Infectious disease doctors, endocrinologists, cardiologists, and finally a neurologist.

My neurologist diagnosed me with conversion disorder.

He said that all of my symptoms, even the fever, the infection for which I took antibiotics

were being caused by some distant trauma I might not even be able to remember.

Either that or I was just really stressed out about my final exams.

For the next several years I spent most of my time bedridden.

I thought maybe I had a rare disease.

Maybe I was dying.

And then I went online and found thousands of other people all over the world just like me.

Yeah I'm completely bed ridden. I have lost the ability to walk.

I crawl from my bed to my bathroom and I just think, "this s my life. What a shit hole!"

It's the cognitive problems that are the most disabling.

I live in a dark room twenty-four seven.

I have ME/CFS.

That's Chronic Fatigue Syndrome

or Myalgic Encephalomyelitis I think is the term that you're supposed to use now.

I've have some kind of ME/CFS for about eight years now.

I was ten years old when I first got sick.

I was a really competitive skier.

At one point I was ranked seventeenth on the entire East Coast for mogul skiing.

This is the couch. These three cushions are where I spend my life.

And out there that's that's all my old life.

Larry King: The Chronic Fatigue Syndrome.

It's been called the Yuppie Flu, Epstein Barr, and a living hell by those who suffer from it.

There's still no adequate medical explanation for it. The experts say it could be triggered by viruses.

We all get tired but is it Chronic Fatigue Syndrome? Some believe that's a made up condition.

You have Chronic Fatigue ME.

You're in that percentage of people who are severely disabled.

Based on your duration of illness you are still in that category that we call in sort of the acute phase.

And the CDC statistic's that if you've been sick five years you're unlikely to recover. I agree with that statistic.

People reach a plateau of function that's better than they were at baseline

but not that they have a full recovery.

I had no idea if it would be months

or years

or decades.

It was like I had died, but was forced to watch as the world moved on.

If I completely disappear and I'm in this bed and I can do nothing

then it's like I don't even exist or that I never existed.

And then what was the point of it all? Of being born in the first place?

You know and honestly there are a lot of days when I just feel like I'm doing a good job

by just holding it together and not killing myself.

Like I'm really proud of that.

And it's not... I really don't want to die. Like I really don't want to die.

But at a certain point it's hard to call this living and...

I think the grief of all those things I might not do or see or have or...

Yeah so it's sad.

Hey Jen.

Hi.

Welcome to My World of One Room.

I have been severely unwell for eight years.

Jennifer: I found Jessica online.

She was so young and had lost so much.

Yet somehow, she found a way to keep going.

So I asked if I could film her

I mean, if we have to do it ten minutes at a time over like many days, we'll get there.

Yeah.

- Come on, come on. - Excellent.

Jessica: I get to my birthday and for me, that's a really difficult date

because I think it's another year in bed.

I need your help.

Too loud.

I remember my sixteenth birthday in bed.

I remember my seventeenth, eighteenth, nineteenth, twentieth, twenty-first.

Pretty. Look.

I made it into a chair for a couple of seconds for my twenty-second but other than that I was in bed.

You need your injection, don't you.

Injection mid-champagne.

Mid-champagne.

And that for me is very, very scary because you don't realize when you're in a bubble quite how much time goes, you know?

The everyday joy.

Happy birthday.

Happy birthday.

Have some champagne, dear.

Jessica: When I was fourteen I suffered with a flu-like virus.

I was sleeping all through school and I had the teacher shouting at me saying, "Jessica! Pull your head off that table."

I remained in hospital for four years constantly.

I was in a semi-coma.

The doctors had no idea what to do.

The nurses were getting frustrated at me for not getting better.

They almost saw me as a lost cause.

I'm very lucky to have a sister like you.

You can't do makeup. Open.

That'll do.

I think it will.

When you were in that hospital

and you couldn't move or speak, how did you stay sane?

I stayed sane because I can do lots of things with my mind

and I go to many different places all over the world in my mind.

I love Australia because I love the water and I'd love to go scuba diving there.

As I jump into the water and have that freedom of my body moving but there being no sound

and a multitude of different colors of fish calm you down and relax you.

It becomes more and more magical and still there's that silence.

Awkward!

Jessica: I suffer with severe osteoporosis now because I've been bedridden for so long with ME.

So I have the bones of a hundred-year-old.

I'm quite a tall girl. I've actually grown four inches in the time I've been bedridden.

So I've never actually stood up at this height.

About a month ago I touched the floor for the first time.

You alright? Feet on the ground?

Feet on the ground.

How's that?

It's mental. Oh my goodness.

When did you last do this?

Not for about probably for eight years.

Eight years.

And you sat on the bed with Tom didn't you?

Yeah but it didn't go like this.

Stand on your feet.

Sleepy? Okay, come down my girl.

- Hi! - Hi, how's it going?

New video is starting. There you are.

I started filming more and more people all over the world from my bed.

Camera speeds!

Who am I going to be looking at?