Original subtitles

Downloaded from YTS.MX

♪

Official YIFY movies site: YTS.MX

♪

♪

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.

♪