All language subtitles for Gabe (2017)_en

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Humans are different from other
animals in a very important way.

We know we're gonna die.

Gabe faces that reality
every day he wakes up.

Most of us don't know
how we're going to die.

In Gabe's case, he probably
has a pretty clear sense

of what the end
is gonna be like.

Coping with that, being
able to abstract meaning

out of your life under
those kind of circumstances,

has got to be a very
big challenge for Gabe.

♪

We're just a few days away
from a Labor Day tradition

here on News Channel 5,

the Jerry Lewis MDA telethon.

MD is a terrible disease,

but one young man and his
family won't concede anything

because they believe
attitude is everything.

[Luke]
That young man,
is my friend Gabe,

and over a decade later, he
still hasn't conceded a thing.

But when Gabe's doctors

gave him unexpected medical
news a few years ago,

his life changed forever.

He decided it was time
to share his journey,

because I'll tell you,
it's a hell of a story.

We adopted Gabe

when he was about 12 hours old.

We were in Tegucigalpa,

and we got a call
that he'd been born,

and Dick and I were
in this little rental car

in the mountains of Honduras.

We were whisking and flying
around the mountains,

and we got to Santa Rosa,
where he was born.

Went to him right away,
he was beautiful.

On the road,
we were thinking of names

and came up with Gabriel.

It was the perfect name.

[Luke]
The Weils adopted
four new family members

into their St. Louis home.

Not long after Gabe's arrival,

it was clear something
about him was different.

[Dick]
There was a test.

They had him moving around
pegs on a table.

Gabe didn't have
the coordination
that a normal kid does.

So, we pushed back
for more tests,

and they said, "Well, there's
one last test we can do."

At age one year and four months,

the diagnosis finally came in.

The head of the muscle clinic
at Barnes Hospital said,

"I've got good news,
and I've got bad news."

He said, "Well, he has
Duchenne muscular dystrophy."

So, we said, "Well, that's...

kinda bad news,
but what's the good news?"

And he said,
"Well, the good news is...

"more research money is going
to Duchenne muscular dystrophy

than any other
neuromuscular disease."

It just seemed funny, you know,
the bad news

carries such heavier weight
than the good news.

They just said that he has
a disease that is incurable,

that is going to require a lot
of sacrifices from our family.

[Luke]
Muscular dystrophy is
a progressive genetic condition.

A mutation in Gabe's DNA

weakened the structure
of his muscle cells,

causing many of them to die

and turn into scar
and fat tissue.

This meant that over time,

Gabe slowly lost the ability
to use his muscles.

[Brian]
There are about 50 different
kinds of muscular dystrophy.

So, even if you say
you have muscular dystrophy,

my muscular dystrophy's gonna
be very different from Gabe's,

and is very different
from most other people

with muscular dystrophies.

[Luke]
Gabe was diagnosed with
Duchenne muscular dystrophy,

the most severe form
of the disease.

[Chuck]
You have severe limitations
very early in your life,

and then that progresses
into your teenage years,

and typically most individuals
into their teenage years

and early 20s have
a very hard time breathing,

end up getting infections,
and life expectancy is,

unfortunately,
very short for them.

At some point,
I learned to walk.

If I live long enough,

I probably won't be able
to anymore.

I can see quite well now.

At some point later in my life,
I probably won't.

Now imagine taking that,
which plays out for most of us

over a span of about 80 years,
if we're lucky,

and compress that.

That's just gotta be
an incredible challenge

to get your head around.

Especially at an age
when your self is forming.

For most of us, our self
is in rapid transition
during those years.

Emotionally, we're, oftentimes,
not really equipped to handle

that kind of,
that kind of challenge.

I was devastated.

I truly was devastated.

Because I had a real
horror of death anyway.

My parents were both dead.
My mother died when I was seven,

so I wasn't really
comfortable with the idea
of him dying at 19.

♪

A lot of what we do is

we strive towards some vision
of ourselves in the future.

So to not have that
kind of sense of future,

has got to be just
an extraordinarily devastating
realization.

To think that what
other people are striving for,

I can't strive toward.

There isn't something out there
for me to strive toward.

When I was seven, it got really
difficult to walk flat-footed.

[Dick]
The heel cords were tightening,

and it was very awkward
for him to walk.

This doctor had the idea
that they could release
his cords,

and he'd be able to walk
flat-footed.

[Dick]
Gabe said, very optimistically,

"Now, I'll be able to walk
just like the other kids."

He never walked again.

♪

Seeing him live a normal
childhood till he was eight,

and then all of a sudden,
going from walking

to being permanently
in a wheelchair,
that was difficult.

I remember after having
a talk with my parents saying,

"Let's do this. Let's get him
the best life possible."

In the third grade,
he was tested.

I think he was in, like,

the 30th percentile,
academically.

We thought he was really smart.

We knew he was smart,

but that's where he was tested.

Fourth grade, he had a teacher
named Rick Hasler,

who decided that Gabe was gonna
be like any other kid.

[Josephine]
Rick Hasler said,

"Gabe, remember, in my class,

"you'll be a full member
of my class.

Anything that happens
with anybody,
will happen to you as well."

[Dick]
Say, if there was
a swimming party, Rick insisted,

well, if the other kids
were in the pool,

Gabe was gonna be
in the pool, too.

If they went on a field trip,
like once they went to the Arch,

and the Arch wasn't
as accessible as it is now.

[Josephine]
Rick Hasler picked Gabe up
out of his wheelchair,

put him on his shoulders,

and carried him down
these bank of stairs,

to get onto the train
to go up to the Arch.

And we went up, and Gabe
was there like everybody else.

And the end of that year,

he tested in
the 90th percentile.

All of a sudden, this kid
who was diagnosed as a...

slow learner, turned out to be
a gifted learner.

It was just
one teacher who said,

"You are an equal part.
You can do anything
these other guys can do."

[Newsman]
When he's not playing
the video game,

Rock Band, with his siblings,

by all accounts, Gabe Weil
is the type of person

who looks forward
to facing each new day,

despite facing many challenges.

Among the many highlights
of his childhood

was attending the summer camp

put on by the Muscular
Dystrophy Association.

put on by the Muscular
Dystrophy Association.

♪

When I was in
the fifth or sixth grade,

I was very excited because

I just got this
brand-new wheelchair.

It was like the Cadillac
of wheelchairs.

It had headlights, it stood up,

it reclined, it did all these
kind of cool things.

And I was sure that
I was gonna have, like,

the coolest wheelchair at camp.

But when I got there,
there was one other kid.

He was in the next age group
cabin, older than me,

with the same wheelchair,

but instead of the sleek black
I had picked out,

it was this bright,
obnoxious orange,

and lo and behold, who was
in that chair was Gabe Weil.

And I was just like,
my arch nemesis, you know?

Why did he have to have
the same chair as me?

Like, you know,
displacing my cool factor.

[Sam]
All in all, it was
a great childhood,

scary a lot of times.

There were a lot of close calls
that I witnessed.

Josephine and I had been
on a trip. We came back,

and Gabe was having
trouble with his heart.

The beat seemed to be irregular,
and Josephine brought

in a psychiatrist to talk to him
about his anxiety,

and in the process,
she took his pulse and she said,

"This is not
a psychiatric problem.

"This is a physical problem.

Get him to the emergency room
right away."

[Josephine]
We get into the emergency room,

he gets up on this table,
and his heart stops.

He stops breathing right there.

[monitor droning]

[Dick]
All of a sudden,
there were, like,

20 or 30 people in the room.

So, everybody's running in,
you know, to try to get
this heart going.

[Dick]
Social workers seamlessly moved
in next to Josephine and me,

and people were up
on top of Gabe, working
and doing compressions.

And this doctor's
having us sign papers

of how long they have to keep
trying to get his heart going.

It's like, are you kidding me?

[Dick]
And I said as long as possible,
you know? Don't stop.

Now, this is a name I remember,
Vandel Jackson.

This fireman shows up,
starts pumping his chest.

[Josephine]
Vandel parts these nurses like,
you know,

in the ocean.
"Get out of the way!"

And he starts pounding on
Gabe's heart, and he's strong,

and he gets his heart going,
like that.

It was like a miracle!

[Dick]
The doctor who was
working on him

said Gabe could leave
the hospital, but it might be

smart to keep him in
the hospital overnight
for observation.

Turned out, Gabe was in
the hospital not for overnight,

but for seven weeks.

[Josephine]
We were sent home one night
to plan his funeral,

because he wasn't gonna
be alive the next day.

We planned the funeral,
but we went back,
and he was alive.

And I stayed with
him every night.

Dick loves to say, you know,

they weren't sure who
was the patient, me or Gabe.

I would not leave him.

Without that firefighter

walking down that hall
at that exact moment,

Gabe would not be with us today.

♪

[Luke]
That was in 2003,
when Gabe was 15 years old.

Gabe admits that
his health concerns

often made growing up stressful.

Most of us choose not to think
about our own mortality,

Gabe faced it constantly.

His near-death experience
was just another reminder

of how quickly everything
could be taken away from him.

Which made his doctor's
appointment in 2013,

so shocking.

How many times have we gone
to doctor's appointments
with Gabe?

How many times have
we been in hospitals?

How many times have
we experienced
the medical system with Gabe?

It's never the way you think
it should be, or very seldom.

Duchenne kids have
a very difficult life,

and they usually don't live
very long into adulthood,

and Gabe was still living.

And they also don't have
heart problems, usually,
which Gabe has had.

Everyone was kind of
puzzled about those

inconsistencies with
the Duchenne profile.

About a year ago,
we were in the doctor's office,

for one of these routine
doctor's appointments.

[Dick]
They came to the conclusion
that it wasn't

Duchenne muscular dystrophy.

Are you saying he doesn't
have Duchenne?

His life expectancy,

which had been somewhere
between 19 and 25,

it now looked as if
he might live into his 50s.

♪

Every parent wants their
child to outlive them,

and especially someone
as gifted as Gabe.

But for Gabe, I perceived
it was a real problem.

They didn't even necessarily

think he would make it
to this point,

where he would have
to start thinking about

what he wanted
to do with his life.

And now to find out
the window's been extended.

What an incredible
challenge that he faces.

Now, I have an opportunity
to do something with my life.

And then,
that would be balanced with,

you mean,
now I've gotta do something?

♪

♪

[Luke]
At the point
of his new diagnosis,

Gabe was a student at one of
the top colleges in the country,

Washington University,
in St. Louis.

I was a student there, too.

In my junior year, I was hired
to take notes for Gabe,

and in the three years
we worked together,

he became one of
my best friends.

I even started helping him
with his caregiving needs.

One of the reasons
I love Gabe is that

he's always lived with
intensity and with purpose,

even when he expected
to die young.

So, when the news of his
doubled life expectancy broke,

he wanted to document
his journey,

to share with others
his new accomplishments,

and his thoughts along the way.

Knowing I was an aspiring
filmmaker, he approached me.

So, we started filming.

♪

♪

[Chuck]
There were times
where he didn't know

if he's gonna be able to get
through the course load.

When we have any kind
of fragile sense of self

and we doubt that we can
accomplish something,

what people will sometimes do is

they will construct
impediments to their success.

They will throw up a barrier,
what's called a self-handicap,

which allows them an excuse
if they do fail.

It'd be very easy for Gabe
to say, "The reason I couldn't

do this is because of this.
I'm in a wheelchair."

The fact that he doesn't,

or at least he didn't
do it in my class,

I think is one reason
I admire him.

[Luke]
Gabe took a reduced
course load in college,

which spread his time out

beyond the typical
four years of undergrad.

Because of this, he met people
he never would have otherwise.

Like me,
and like Hannah.

I have a rare and mild form
of muscular dystrophy called

congenital myasthenic syndrome.

I have limited
strength and endurance,

so I can't do a lot of
highly physical activities.

If you look at me, unless you
know what you're looking for,

you can't see anything
different than, you know,

just a normal girl
walking down the street.

Then, when I need
to use adaptations,

or I take extra time
doing something,

it looks like I'm just lazy.

Meeting Gabe, he validated
me through reassurance

that I need to do
what I need to do.

And it doesn't matter
what people think
or if they look at me.

♪

[Luke]
WashU is also where Gabe

reunited with his old
MDA camp nemesis,

Brian Chao.

Gabe is not someone that

gets down in the gutter.

I just am amazed by
how much he is able to do,

and how he's able to do

pretty much everything
that he wants to do.

I wanted to talk a little bit
through your paper

which focused on
states of consciousness.

Can everyone see Gabe?

Thank you.
You're an excellent class.

I look forward
to your portfolios,

which will be in my box
by noon next Thursday.

[indistinct chatter]

[Man]
Wow, I can't believe you
just slipped on that curb.

[laughing]

[Luke]
I immediately regret
this decision!

[Luke]
All right, so, how'd it go?

♪

♪

[Hannah]
I got to the quad, everyone was
in their green robes.

And most people were
pretty unidentifiable,

except for Gabe, 'cause he was
the only one in a wheelchair.

I went up,
and I gave them my name card,
and then I gave them Gabe.

[Announcer]
Gabriel Isaac Weil.

[cheers and applause]

♪

Congratulations, Gabe.
Great to see you.

Well done.

[Hannah]
And we met on the other end,
and we took pictures,

but the pathway that they
had left for him was tiny.

There was no way his chair
was gonna fit through it.

So, what we had to do was

go between the rows
of people on stage.

But it was fine.
Gabe was a good sport about it.

And we got back and sat down,

and after everyone's
names were called,

I moved his tassel for him,
and that was that.

[Hannah]
And I'll never forget,
I can see it perfectly,

his chair's a little
higher than mine,

so I had to look up to see him.

And I remember looking
over to my left,

and looking up at Gabe,

and he had sunglasses on,

but I could see a single tear
rolling down his cheek.

And that made
the entire day for me.

I was happy that I graduated,
I was proud of myself, too.

But I think to see it...

through Gabe's eyes was
a much different feeling.

♪

[Dick]
Until recently,

it had been his life's goal
to graduate from WashU,

and he had accomplished it,
so I was very pleased.

[Chuck]
It was really,
uh, it was great.

A moment that will live with us,
I think, forever, so...

Gabe, congratulations.

We are so proud of you,
it's not even funny.

You're an inspiration
to all of us.

Congratulations, Gabe.
I'm so proud of you.

Just so excited for today,
congratulations.

[indistinct chatter]

[Woman]
We're really, really,
really, proud.

-Right?
-We're so proud.

Yes, and we love you.

-And we love you.
-Yes.

Cheers, Gabe. Happy graduation.

Happy graduation, Gabe.

[lively chattering]

Congratulations, Gabe.

Congrats, Gabe.

Congrats, Gabe.

-[laughing] Congrats, Gabe!
-Way to go, Gabe!

[lively chattering]

♪

[Zach]
So, Gabe, how are you feeling

now that you are done
with your college courses?

Nice answer.
[laughter]

Gabe has been doing
the same thing for the past...

20 years. He's been a student
for all that time.

And then all of a sudden,

WashU's done.

There was no commitment
to do anything.

There's very little
guidance to give him

because that kind of
circumstance just doesn't

arise very often.

There's got to be a considerable
amount of uncertainty.

What do I do?

I don't think there's much that
can inform about how to do that.

And on top of that,
his condition precludes him

from doing many
of the things that,

that, I think,
some of us aspire to do.

[Pooja]
Gabe has to be methodical about

asking people for help.

He has to be
methodical about eating.

He has to be methodical
about making decisions,

in a way that we can just hop in
our car and go wherever we want.

If he doesn't have enough
people working for him,

he literally cannot
get up in the morning.

[Brian]
As far as starting to find
jobs and everything,

there are certain
accommodations in the workplace

that, you know, we may need.

[Dr. Strube]
There are profound stereotypes

about people
who have disabilities.

And it's true
that we oftentimes will conflate

the physical disability
with some kind
of mental deficit, as well.

[Brian]
I know that when I started
looking for jobs, I was unsure,

you know, in an interview,
they can't come out and ask me,

"so Brian, why are you
in a wheelchair?"

You know,
that's against the law.

But if I brought up that point,

you know, "oh, I'm in
a wheelchair because I have
muscular dystrophy,"

would they be able
to address that question?

Or would that just open
them up to liability?

Would they not be comfortable
talking about that?

So, I couldn't help wondering,
what is Gabe's life like

when people perceive him
based upon the first impression

or first appearance
they have of him,

and don't get a chance
to see what's going on inside.

♪

[Luke] Gabe faced
considerable obstacles
after graduating from WashU.

Some, though,
weren't so different
from his classmates.

Every recent graduate has
to determine what's next.

So, he used his deepest
friendships and passions

to find his way.

You know, they say
if you're missing one thing,

you have something
else in excess.

I'd say, if there's something
Gabe has in true excess,
it's a palette.

He's genius, you know,
a genius foodie.

[Dick]
I will say he has
a perfect pitch for taste.

[Josephine]
We were in a restaurant one day,
and we were eating something.

[Dick]
Gabe is tasting it...

[smacking]...
like that, and he says,

"There's something
missing here."

And, uh, he says,
"They left out the nutmeg!"

[Dick]
Bechamel sauce is
supposed to have nutmeg.

He asked the chef.

The chef said that Gabe
was absolutely right.

He was out of nutmeg
on that day,

so he just made the Bechamel
sauce without the nutmeg.

[Hannah]
Everyone who knows Gabe knows

that he loves to go out to eat,
he loves trying new foods.

It's a huge part of who he is
and what he loves.

[Luke]
At the dinner table,

Gabe is an expert guide
and an excited fan.

This is where he forges
his deepest relationships,

and by his side,
you'll notice a familiar face.

[Brian]
When he's sitting in his chair,
he can move his hands,

but not even really have
full function of his hands.

And so one of the very
common things is,

whenever I'm with Gabe, he'll be
sure that I got his cell phone,

so I can make calls for him
or text message for him.

It's kind of ironic
when we get together.

Two disabled guys,
we're able to do more than,

than one of us on our own.

So, his smarts,
and my pure brawn, I guess.

♪

I have a non-progressive form
of muscular dystrophy.

It's a very rare form,
doesn't get worse.

Pretty much since
the time I was 12,

when I grew up to a point
where my body was big enough

that my muscles couldn't move it
around and everything like that.

But it hasn't really
gotten worse since then.

It's scary to think things
could be so much worse,

or a guilty feeling of,
you know,

I'm really lucky.
These guys aren't.

He and I are both cognizant of,

we don't want to complain

to other people,
however well we know them.

Whether it's family
or close friends,

we don't wanna
make our disability

the overarching point in our
lives or anything like that.

But to each other,
we can complain about
that kind of crap,

and it doesn't really feel
like we're getting
too down in the ditch.

There's a little bit
more understanding,

and you know that you're
talking to somebody

that gets it a little bit more.

[Luke] We should get
a picture of the boys.

[laughing]

[Woman]
That's nice.

[Chuck]:
Because Gabe can't
move very much,

he is always asking for people
around him to help adjust him.

But sometimes with Gabe,
he'll be like,

"uh, right arm
forward a little bit,"

and you move it just
forward a little bit,

and then he'll be like,
"right arm back."

And a couple of times,
I've been doing that,

and then I just realize,
he's just screwing with me.

♪

[Luke]
While figuring out
his own next step,

Gabe had to say goodbye to close
friends, moving away for theirs.

[Chuck]
Tomorrow, actually, Pooja and I
are gonna be moving to Boston.

I'm gonna be starting
a surgical residency.

-After 10 years in St. Louis
for me, and...?
-Thirteen.

...13 years
in St. Louis for Pooja,

and all these years hanging out
with Gabe a lot,

we're gonna be leaving.

It's tough. I mean,
we've seen him

on a weekly basis
for eight years.

What I'm gonna miss
most is Gabe's company.

You can't get that when you're
in a different time zone.

You can't give him a hug.

♪

[Chuck]
You know that,
you're just gonna get

this warm feeling from
hanging out with him,

no matter what is
going on in your life.

[Chuck]
Everyday, come over
to see you, man,

always a special day.

-All right, man.
Give me a hug.
-All right.

I love you, Gabe.

[sniffling]

Stay in touch.

♪

[Brent]
Gabe was born with
a genetic disease,

but somehow,
he needs to go beyond,

and show the world
what he can do.

♪

[Luke]
Gabe was restless.

He needed to take advantage of
the new time he'd been handed.

So, like many recent grads,
he decided to travel,

to explore the country
and himself.

I joined him,
along with some of his other
friends and caregivers,

like Brent and Brendan.

In organizing the trip,
Gabe embraced
a level of autonomy

he, frankly, was
never supposed to reach.

But the going was never easy.

A lot of his day-to-day
is defined

by where he can and cannot go.

And just given
his physical abilities,
he's obviously confined.

And I always want him to go
wherever I'm going,

and it's often,
he thinks, too far.

He's not willing to do it,
but I'd love for him to do it.

Traveling's huge for Gabe,

because he's able to get away.

You know, where you and I,

we get in an argument
with someone,

you know, our parents, whatever,
we can just go away.

For Gabe,
that's not the case at all.

He needs someone
to drive the car.

Being in school,
I wasn't able to travel
that much

because there are many things
that go into that.

Gabe can't fly.

We drive everywhere.

[Brendan]
For him to be able
to travel somewhere,

it doesn't mean
packing a suitcase

and getting on a plane.

It's packing two vans full
of all the medical supplies,
etcetera, that he needs,

and getting the support
structure to go with him.

♪

[Brian]
He figures out
ways to do things,

and there are a lot
of pieces to that,

and he has to take
a whole caravan of gear
to make that work,

but he does it,
and it's just part of his life.
He doesn't complain about it.

♪

[Friend] Oh, cath bag?

[Friend] Cath-sacky!

[Luke] Gabe's routine's become
second nature to those of us
that help him.

Even adjusting his catheter bag.

[Brendan]
I'm talking straight,
perfect, straight.

-[Luke]
What's happening right now?
-[Friend] Ramp to ramp!

[In unison]
Ramp to ramp!

[Friends]
Ramp to ramp! Ramp to ramp!

-[laughing]
-A little ramp to ramp.

[Luke] I'm really happy
that worked. [laughs]

What I think is
one of the most fantastic
aspects of traveling with Gabe,

he's traveling with these people
you might not know that well,
but getting to know them.

And I think that's really
unique and special
that you wouldn't get

if he didn't have the hardships
that he faces when he travels.

♪

♪ Yeah

[Luke]
Music, like food,

is one of the main ways
Gabe connects to his peers.

So, he organized a day for us at
the music festival Lollapalooza.

♪ Yeah

It's a challenge navigating
these festivals,

even without a wheelchair.

But Gabe being Gabe,

he was unfazed by the weather,
or the crowds.

♪ Baby

♪ Ooh, you make it so good

♪ Baby

♪ What if I woke up
on a different day? ♪

[Brian]
The other day, I called him,
and he answered the phone,

and I said, "Hey, it's Brian."

And he said,
"What's up, Buttercup?"

And now, my exclusive nickname

that's he's using
all the time is Buttercup.

And I told him,
if he keeps up with it,

I'm gonna have to start
calling him Sweet Cheeks,

but that doesn't seem
to deter him at all.

♪ What if I woke up
on a different day? ♪

[Friend]
Oh, yeah, buddy!

♪

[Brendan]
Where he chooses to go
to lunch and dinner,

it's entirely dependent
on whether or not

they're wheelchair accessible.

He sets up the trip
and uses his support structure

to do the things he wants to do.

It's a moment where Gabe
can do what's best for him.

[Luke]
Traveling with Gabe
constantly reveals

everyday activities that
he has to approach uniquely.

Imagine not being able to
shift weight in a turning car.

In Gabe's case, we strap him
tightly into his chair,

so that his body won't move
in an uncomfortable way.

[Friend] I thought
the Rocky Mountains would be
a lot rockier than this.

♪

[Friend]
Oh, that's cool.

[Brent]
There we go.

-[Brent] We're in Utah.
-[machine beeping]

I don't now what's wrong
with this thing.

Oh, I do. It's not connected.

-Thanks, Luke.
-[Luke] Sorry, guys.

[Brent]
Next stop!

[Brent]
What happens in Vegas...

-is gonna be fun, right?
-[laughter]

♪

[Luke]
While we were having dinner
at a Japanese restaurant,

Gabe started choking
on his food.

♪

This was becoming more of
a common problem for him.

He taught himself to simulate
a small cough

by lurching forward
in his power chair.

But when the chair method
wasn't enough,

we had to get the cough machine
from the van.

Gabe's cough assist machine
alternates pressure
in his airway,

pushing air in
and sucking it out.

♪

On some occasions,
a choking episode will mean
an end to the night.

But in this case,
he gets through it
and still wants to keep going.

We were waiting
on dessert anyway, so...

[Gabe chuckles]

Not just anybody...

Not just anybody...

♪ Walk for me if I can't

♪ Ah, there's too many roads
in this damn town ♪

♪ Smile for me

♪ When I'm gone

♪ Oh, I do declare

♪ All these sights and sounds

♪ You're not born broken

♪ That's a fate you choose

♪ Well, they're all I've got

And hug. Maybe a hug.

[All]
Aw!

[Man] The wolf pack.

♪

[Brent]
Gabe and I are two guys,
talking about girls,

and, you know, the desire
to be with someone else.

Gabe had told me

about this movie called,
"The Sessions."

Is it possible for me to know
a woman in the biblical sense?

I think something
we often forget is

that just because
someone's disabled,

doesn't mean they don't
want to have sex.

[Luke]
Gabe did some research and found

a surrogate partner trained
to attend to his unique needs.

This was his
opportunity to prepare
for a future relationship,

something that previously
had been unattainable.

Of course, approaching
this uncharted territory

meant going way outside
of his comfort zone,

and even asking his friends
and caregivers for help.

After a few email exchanges,

he arranged to meet her
for the first time.

[Brendan]
Is she gonna call you, Gabe?

♪

[Brendan]
Yeah.

♪ And I won't

♪ Leave here empty-hearted

♪ And you can't

♪ Oh-oh-oh-oh

♪ Finish what you started

♪ Strike center to get
what I want ♪

[doorbell chimes]

Okay, I'll get it.

[doorbell chimes]

♪ They're gonna hit
the lights in this place ♪

♪ And when they do,
you better look for my face ♪

It was an entire set
of the human experience

that he had written off
as unavailable to him.

The amount of confidence,

and the happiness
that he's gotten out of that,

has been so much more
than just physical.

♪

[Luke]
After working full time as
Gabe's caregiver for a year,

Brent also had
to leave St. Louis.

You got a hair on your face.
Want me to get it?

Well, man, it's been
an awesome year.

[Brent]
It's just been
an amazing adventure.

Is this where
I give you the hug?

[Brent speaks indistinctly]

[Luke]
The revolving door
of friends and caretakers

is a pattern in Gabe's life,

but one that he never
really gets used to.

Something he has gotten
used to, however,

is constantly having to adapt
as new health issues arise.

[Hannah]
In the past three years
since I've known Gabe,

I started noticing
difficulties in his chewing.

Not only do I have
to take longer before

giving him forkfuls of food,

but what he's able to eat
has been drastically reduced.

[Josephine]
He buys his own groceries.

I was buying them
for him for a little bit,

but I don't buy
the right quantities,

and I don't make sure
everything's organic,

and he just doesn't
trust me to do that.

So, fine. He buys his own.
It's terrific.

He's very good at it.
He knows so much about food,

so much about the fruit,
the nutrients in it.

Ginger?

Some lemon.

[Josephine]
I've never had one
that wasn't just wonderful.

Even though there's
kale and ginger
and carrots and beets,

and they can all be
in one drink,

and you're like, really?

It's delicious.

Really limey,
fills your mouth with flavor.

This is one of the best.
It's good.

[Brendan]
Juicing is a way that
he connects with people.

For Thanksgiving, he made this
really delicious apple cider,

with a bunch of different
types of apples,

with cardamom and cinnamon,
and all these delicious flavors.

And he was able to use juicing
to connect with his family.

[Luke]
Gabe's zeal for food
allowed him to transform

an unanticipated health concern
into a new passion.

He put in the time to explore

different combinations
of ingredients,

their flavor profiles
and health benefits,

and instructed his caregivers on
how exactly to make each juice.

[Luke]
As his interest grew,

Gabe began to see the potential

for juicing to be
more than just a hobby.

I really do think

that he can succeed in this.

Gabe has a CEO type of mind.

He's extremely good
at directing people

as to what should be done.

You can only move
his fingers and his head.

You gotta be able to explain
to people what you want,

and you gotta be calm

and relaxed about it because

people aren't gonna
get it the first time.

The way he's been able
to approach juicing,

is with almost
a new lease on life.

Like graduating college,

it's this big,
difficult, daunting task

that he's gonna
have to navigate,

but it gives him focus,
and it gives him purpose.

♪

[Luke]
Gabe set a meeting
with Cliff Holekamp,

director of
the Entrepreneurship Platform

at WashU's Olin Business School,

to hear what next steps
he should take

in his pursuit
of opening a juice bar.

-Hey, how's it going? Good.
-Hello, how you doing?

-Holekamp, good to see you.
-Nice to meet you.

Hello.

Right this way.

It's really good, what's in it?

Is there banana in it?

It's really good.
You managed to sneak in
a lot of vegetables.

It still has that
sweet fruity flavor.

Really, what it's all
about is trying to get

at the mentality of
the customer, right?

And then, you want to build
your concept around

the needs and the interests
of the consumer.

Great businesses
solve a problem.

And some are huge problems,

and some are just little
everyday convenience
kind of problems.

Probably, the best way
to do that is try to study

best practices
from other cities,

where there are
successful juice bars,

and try and understand
what makes them successful.

So, I think what the next step
is to do some market research

to try to understand
where it's successful.

♪

[Luke]
Gabe's brother Rodney,

is an accomplished
dance choreographer,

and had a new production
opening in Tampa, Florida.

Gabe saw it as an opportunity
to visit his brother,

and also check out
the juicing scene

in a different city.

So, we packed the vans
and headed south.

Unfortunately,
on the very first morning,

Gabe came down
with a high fever.

[Brendan]
He woke up,
and something was wrong.

Clearly, something was wrong.
He couldn't even get out of bed.

Any fever is pretty
serious because

of how immunocompromised he is.

We knew at that point,
he needed to go to the hospital.

Every time he goes
to the hospital,

he legitimately does not know
if he will come out.

The friends of his from
muscular dystrophy camp

go into the hospital
because of pneumonia
and they never come out.

That's not...
out of the question for Gabe.

♪

They took him back,
and got him a bed
in the emergency room

within 20 minutes,
which for a busy hospital,
that's really impressive.

And also concerning
because that means that
he's a critical patient.

They were concerned
that he possibly had bleeding
in his lungs

because he was
coughing up blood earlier,

and they needed to clear
that with a CT scan.

He had systemic infection,
and he was septic,

which meant that his
blood pressure was dropping.

They had to thread
this very narrow line
between giving him enough fluids

so that his body could
fight the infection
without overloading his heart.

His heart is weak enough where
if they push too many fluids,

he'll go into cardiac arrest.

[Luke]
Gabe's pneumonia was
caused by aspiration.

His swallowing muscles
were too weak to prevent

food from going into his lungs.

[Brendan]
They had a speech therapist
come in to talk with Gabe

and to do a quick diagnosis
in the emergency department.

And she very quickly said,
"You can't eat anything."

Gabe was unable
to protect his airway,

and he was unable
to swallow sufficiently

that the food would go
into his stomach.

Even swallowing water
was too difficult for him
and too much of a risk.

To watch him, fully conscious,

essentially starving,
his body ravaged by pneumonia.

Gabe was just the most miserable
I've ever seen him.

My heart went out
to him in the way that

your heart can only go out to
someone suffering that much.

[Luke]
Because he couldn't
swallow safely,

Gabe had to get an NG tube

that went directly into
his stomach through his nose,

an uncomfortable situation
for anyone to be in.

For Gabe,
it had greater implications.

I think it was a moment
of big defeat for Gabe.

Food is one of
the things he feels like
he still has control of.

The NG tube was symbolic of
that choice being taken away.

♪

He said something
to the effect of,

"I just wanna leave.

"I don't care. I just wanna get
out of here. I hate this place."

[Luke]
As each day passed,
it became less clear

whether or not Gabe's
swallowing would ever improve.

After two exhausting
weeks in the hospital,

Gabe's pneumonia
finally cleared up.

But his swallowing ability
remained insufficient.

The hospital released him,

but only under the condition
that he puree all his foods,

and thicken all his liquids.

♪

[indistinct chatter]

[Luke]
How you feeling, Gabe?

[Luke]
Tired?

[Luke]
Excited to be out?

[Luke]
Gabe tried to pick up his
Tampa trip where he left off,

but not knowing if he'd
ever eat normally again

made it nearly impossible.

[Brendan]
If there's a decent
amount of options

besides just, like, eating and
chilling in the hotel, you know?

[Luke]
What types of stuff
do you wanna do?

What types of stuff can we do?

They're saying the safest
thing for you to do

is to only eat pureed food
and thickened liquids, right?

You doing okay?

Do you wanna talk about that?
Or do you just kinda...

[Brendan]
That sounds so... scary.

[Brendan]
Yeah.

♪

[Luke]
Part of the problem
that Gabe faced is

that juice is too thin
in consistency
for him to drink safely.

His pills had to be crushed up
and added to thickened water.

He couldn't enjoy
his favorite pastime,

sharing a meal with friends.

The prospect of losing such
an important part of his life,

was devastating.

♪ Turning up lost

After a few days,
we went back to St. Louis.

Unfortunately, Gabe's
swallowing had not improved.

♪ "Don't wait," you say,
You say ♪

[Brendan]
The following couple weeks
were even more difficult,

because it involved a lot
of really hard conversations

between Gabe and his physicians
and his family.

It was unclear if he would ever
be able to have a normal diet

and enjoy these things
that he loved,

and to follow his passions
of opening a juice bar.

♪

So, what's up?
You said you wanted to talk?

[Luke]
To say the least.

[Luke]
It's the most I've been scared
in a really long time too, dude.

♪ So, so, so alone

Gabe is still dealing with
the after effects of Tampa.

At that point, they had to,
basically, make the decision,

do you want to get a G tube?

[Luke]
A G tube goes directly
into someone's stomach

to feed them without them
having to swallow.

Although it would
guarantee his health,

Gabe's lifestyle would be
significantly compromised.

It had been a conversation
I'd never had before,

about how,

medically, someone's life is
about to dramatically change.

Food is all about

the way it allows Gabe
to connect to other people.

He saw that slipping away,

just as he'd seen his ability
to walk slip away,

or his ability to do other
things for himself slip away.

If Gabe gets a G tube,
which he might need to survive,

how are we gonna support him

through any depression
or anxiety or hopelessness?

[Luke]
Gabe has the decisional capacity

to choose the direction
of his medical care.

He could request
to get a G tube,

which would ensure
his health and safety,

or he could choose not to.

For me, it was
a very clear moment

when he had to choose something
he loved versus his health.

[Luke]
For Gabe, the decision
was an easy one.

Knowing full well
the potential risks,

he chose to continue eating.

If he wanted
to keep eating food,

even though it put him
at a risk for pneumonia,

I'm gonna support him
because that's his decision

as a fully capable human adult.

[Luke]
Shortly after his return
from Tampa,

Gabe was invited to give
a speech at WashU.

The event was called
Kuumba Talks,

and like TED Talks,

it's a forum that hosts
a variety of speakers

with unique
perspectives on life.

Although Gabe realized

it would be an opportunity
to share his story,

he only had
a few days to prepare.

I think Gabe, more or less,
had a knee-jerk reaction
of absolutely not.

We had a lot of conversations
of him doubting whether or not

he had something
to say to these people,

whether he had anything
of value to add.

Because he's so much
more dependent on people,

he often has to ask
instead of tell,

and I think that
affects how he thinks.

[Luke]
Oh nice, the sound guy's
about to get here.

Okay, perfect.

♪

[door lock beeping]

[automated voice]
Access denied.

I forgot what it is.

They must have changed it.

Yo, Gabe, did you guys
change the passcode?

Thanks for letting
me know, dude.

[beeping]
Access granted.

All right. See you in a sec.

[Luke]
Dave from Kuumba Talks
was to moderate Gabe's talk,

but with so little
time to prepare,

Gabe decided to format
his speech more as a discussion.

That way, I could be
on stage with him,

to make him a bit
more comfortable.

[Brendan]
He doesn't have the ability

to hold his own note cards
or refer to them.

There was also a lot of concern

about him just
being able to prepare.

And I knew that if
something went wrong,

it would really
negatively affect Gabe.

He himself listed out a lot of
things that could've gone wrong,

and I had to tell him, like,

you can't ask me
these what-if questions

'cause we don't have
the time for them.

If he's off his
breathing machine for too long,

he gets tired and it's difficult
for him to project.

There have been
incidences before

where there's high
adrenaline moments for Gabe,

and it actually registers
on his pacemaker.

'Cause it's weird for you
to introduce him,

-'cause it's like he can't
introduce himself.
-Right, yeah.

Sorry. I laughed 'cause it's,
like, it's one of those things,

like, we go to a restaurant
and people will, like, ask me,

like, "What does he want?"
And I'll be like, "Ask him."
You know?

[laughter]

[Luke]
Gabe never changes plans
at the last minute,

but right as we were
about to leave,

Gabe decided that he didn't
need me on stage with him.

Know this,

you've done your homework,
and you're like,

you know the direction
that it goes in.

So, what do you think Gabe?

I'm in it or I'm out?

♪

♪

♪

Hi, uh, my name's Lex.

Hey, everyone, my name is Sam.

So, I thought I'd talk about
women in neuroscience.

[applause]

[Moderator]
And can we get an aisle

over here so that we can
get our next presenter up?

♪

[Brendan]
There was kind of an aisle

clearing with a bunch of
the students moving away,

so Gabe could
go up to the front.

We felt like we were the coaches
in the boxer's corner,

getting him pumped up and ready.

And as he turned
and headed up to the stage area,

it was kind of a moment
of pride to say,

"Okay, he's gonna do this."

He's scared,
like anybody would be,

but here he goes.

[applause]

[cheering]

[Audience]
Yeah. Woo!

[laughter]

♪

♪

♪

[applause]

[cheering]

♪

[Brian]
I feel like there's
a lot of raw emotion.

Not just from myself,
but from Gabe,

and from the audience.

[Man 1]
I think we all assumed that

a chronic disease
would be this antagonistic

constant negative thing
in your life, and, like,

that's his life.
Like, it's part of his life.

Like, every minute,
his situation might change.

The beauty that he finds in
the small things of every day.

[Woman]
Living isn't always
so much about being happy,

but about appreciating
the things you do have.

[Man]
He has a bigger problem
than most of us have,

and the way that he reacts
to that problem,

is the way that we should
react to all of our problems.

-Yeah. Cheers!
-Go team!

♪

[Brendan]
He's much stronger now.

He's much closer to baseline,

in terms of
he's able to eat now.

But at that moment,

it was very unclear
if he would ever eat again.

[Luke]
It was scary seeing Gabe
so sick in Tampa,

but his dad also told me how
significant it was that his son

was able to take care of himself
hundreds of miles from home.

Not too long ago,
it seemed unlikely

Gabe would ever even find
himself in such a situation.

Now, he was proving

he'd be able to take care of
himself for years to come.

With that in mind,
he's done more research

into the juicing business.

He visited an acclaimed
juice bar in Chicago

to go behind the scenes
to see how it all works.

He knows it will still
be a challenge to pull off,

but what else is new?

There's this great
ice challenge right now,

where you dump
ice water on your head.

It's benefiting ALS,
to the tune of

some, like, $80 million.

[Newsman]
Superstars getting super soaked,

in a movement
that's going viral.

♪ Look at me

♪ Won't you please

♪ Oh, and tell me

♪ What you see

[laughter]

[Josephine]
ALS is a muscular dystrophy.

They're all
neuromuscular diseases,

and hopefully, there'll be
a cure for all of them.

[laughter]

Gabe's brother, Sam, had

Gabe's first nephew, Sammy,

and I think that was
huge to Gabe,

just having someone new
come into his life.

I know Sammy's middle name
is Gabriel.

They named him after Gabe,

which I think was
very special for him.

It is those little joys in life

that make everything worth it.

And, for Gabe,
you see those things.

They come out, they stand out.

♪

[Dick]
Gabe was born with
three strikes against him.

But even if you're born
with three strikes against you,

you can make
something of your life.

[Josephine]
I don't know what
the challenges will be.

Whatever they are,
they'll have to face them.

And he will face them, and we'll
all help him face them.

Every day is a new challenge.

And we meet them all.

[Luke]
It's been a ride, dude.

[Luke]
It's not over yet.

[Luke]
Do you wanna hold his hand?

♪

♪

♪

♪

-To Gabe!
-To Gabe!

To Gabe! Woo!

♪

[Josephine]
It's not taking.

I'm holding it down,
but it's not taking.

Recording?
Oh, we're having a recording!

[laughter]

Talk everybody! Oh, stop.

Riding in style.

♪ Running wild
and running free ♪

♪ Two kids, you and me

♪ La-la-la, la-la-la

♪ And I say hey, hey-hey-hey

[laughing]

♪ Story, West Side Story

♪ West Side Story

♪ West Side Story, West

♪ Ooh

♪ Renegades

♪ Ooh

♪

[Luke growling]

That's not necessary.

[Luke]
Nectar of the gods.

♪ It's our time to make a move

♪ It's our time to make amends

♪ It's our time
to break the rules ♪

♪ Let's begin

♪ And I say hey, hey-hey-hey

♪ Living like we're renegades

♪ Hey-hey-hey, hey-hey-hey

♪ Living like we're renegades

♪

♪ Renegades

♪

[Luke]
Yeah!

[indistinct chatter]

Om.

♪