All right, let's talk a little bit more about you.
You-- Right there.
That's where you're gonna be in, like, six weeks.
Um...
My number-one focus of purpose
is to share with you who I am
and to...
give you, uh,
as much of myself as I possibly can
while I can.
And I'm excited. I'm excited.
I want you to come sooner than later
so I can still hold you--
Hold you and-- You in my hands and my arms.
and use all that stuff--
Just--
Just love you.
The 6th of October, 2001.
We're heading down to the OSU-Washington State game
where the game is sold out. MAN: Homecoming.
Homecoming. Another beautiful day in...
Spokane, Washington.
[CHUCKLES]
Oh, it's a great day.
Cougs are favored by 10.
Steve doesn't like it. I like it.
Oh, man, it's a beautiful time.
It's a beautiful time for the Cougs.
MAN 1: Steve Gleason has what every college football coach
is looking for in a linebacker.
MAN 2: Really, really fast. Really, really aggressive.
MAN 3: He may be small but no one can deny
Steve Gleason's ability to hit.
I think that playing football, you know, is a great time for
every guy to get out there, you know, and let out your aggression
and just kind of be a free spirit.
Cougar football at its best. Gleason and me. Two legends.
He pass blocks, you take a step back.
He run blocks, bam, you're in there.
For the average college linebacker, he was too small.
And he was way too small for the NFL to play linebacker.
He had to work harder, run harder,
train harder, just so he could be the guy
that was gonna be on that 53-man roster.
I'd never seen a guy cover kicks the way he does.
It takes a certain type of psyche and mindset to do that.
It's actually kind of a crazy, sort of loose cannon,
"this guy's obviously got a few screws loose" type of mindset.
And that's what made him so good.
I consider Steve a real Kamikaze of sorts, you know,
notorious for sticking his head in there,
totally giving up his body, tough.
Male reporter: There are reports from New Orleans
of people trapped in buildings
that have come down around them.
The Superdome became a symbol of failure and despair.
20,000 refugees lived here for one miserable week
without power, water, or sanitation.
[CROWD CHEERING]
Female reporter: A beautiful day, and an unbelievable scene
here inside the Louisiana Superdome.
[MEN SHOUTING, CHANTING]
Who are we? Saints!
Are we ready? [BARKING]
New Orleans! [BARKING]
[CROWD CHEERING]
Man: A moment almost unimaginable 13 months ago is here.
Look out! Right through!
A pickoff by Steve Gleason!
And score!
Touchdown! New Orleans!
And for those people who look to the New Orleans Saints
as something that will uplift them, uplift this city,
uplift the entire Gulf Region, they've just had it!
That night, and specifically Steve blocking the punt,
was, like, a signal to everybody that not only is New Orleans back,
but it just felt like the rebirth of something really, really big.
[LAUGHS] Can you effing believe that?
All right, we need another performance.
Oh, gee!
¶ Back to back with the Rio Grande ¶
¶ A Christian woman in the devil's land ¶
¶ She learned the language and she learned to fight ¶
¶ But she never learned how to beat the lonely nights ¶
¶ In Lonesome Dove ¶
¶ Lonesome dove ¶
STEVE: I want to teach you how to hold the camera.
Okay. Yeah?
How's that? Fine.
Are you there? I'm here.
You don't like to talk behind the camera?
I'm a filmer, I'm not a subject.
Yeah, but a good filmer
asks really good questions to get really good material.
Are you almost done?
Good question.
When I first got to know him, he plays--
He had long hair and played for the NFL.
I thought he was gonna be a complete cheeseball.
But when I met him, he was perfect.
I thought he was the greatest thing I've ever met.
He lived in a small house and didn't have a TV
and drove a truck and was different than Southern boys,
and he loved to, like, adventure travel.
I liked to travel at the time too.
He was this superhero athlete but also super smart.
He was the best of both worlds, let's say.
With the kind of person that Steve is,
he was attracted to the free spirit of Michel.
the kind of honest bluntness, uh, willing to try anything,
really no airs about her.
[CROWD CHEERING]
I don't know, you can never think of Michel settling down.
She was always the life of the party.
She was always having fun.
Is Michel really gonna settle down?
Is Michel gonna have kids? No way.
That's not gonna happen.
STEVE: No, you gotta try again.
Watch your hams.
As unique as Steve is, Michel is equally as unique,
and I think she was still trying to find herself
and didn't know where she was going.
And I think when she met Steve, they just started clicking.
And I think it's such an amazing thing
that both of you said to me yesterday.
Even if it's pouring rain, it doesn't matter.
We have each other. Our family and friends are gonna be here.
And isn't that, really? As all us married people know,
it's how we act, not when things are great--
It's easy to be loving to each other when things are great.
But how do we act as a couple together
when things aren't great?
When things are difficult?
[CHEERING]
Bye!
Now I guess we could say you're officially a New Orleanean.
You married a local girl, you live in a historic neighborhood.
Are you a New Orleanean? It's a city that I love.
I'm very thankful for all that has come to me through this city.
Is it okay with you, the fact that you're kind of synonymous for one play?
You played nine years in the NFL.
You were on the Saints team that won the first-ever playoff game.
Look, if you gotta pick one thing that you're gonna be known for,
that is fine with me.
And before we go, I wanted Steve to wear
his Number 37 jersey for this segment.
But he won't put it on. I wear my jersey on the field.
Those days are done.
So I've been having some strange medical issues
going on with me recently.
I've been having some muscle twitching in my arms.
Mostly my upper arms, shoulders on both sides.
And some in my chest,
in my back, a little bit in my upper legs.
I then also talked to my naturopath,
and he seemed a little bit concerned about it.
He spoke about these types of symptoms on three levels.
It could be some type of molecular problem,
or it could be some type mechanical problem,
meaning my neck or my head have some type of trauma.
I have a bulging disc or a ruptured disc
or calcification in my vertebrae
from all my football trauma.
Thirdly, it could be some type of neurological disease,
a disease that he mentioned as--
Obviously the worst-case scenario would be ALS,
which is Lou Gehrig's disease.
I have been diagnosed with amyotrophic lateral sclerosis,
which is a disease in the motor neurons.
And this disease is-- Is almost always fatal.
My first reaction was kind of frustration or anger
at the doctor for saying it.
And I just was like, there's no-- There's no way.
He's telling me this, but I don't necessarily believe what he's saying.
Although this is part of the challenge,
like, yeah, I wanna beat ALS,
I want to win that part of the game,
But for me, the biggest part of the game is
beating all the other shit that you and I have talked about is
karma from our parents
or relationships with family
or relationships with friends
or your own spirituality
and just peace in your heart.
But I just think there's a bigger
battle there
about being able to say,
"Okay, I have been-- I have this diagnosis,
and it's not gonna-- It's not gonna crush my life,
even if it does crush, you know, crush my body."
I think you look really cute today.
I haven't smelled you, but you look really cute.
STEVE: I wish I could zoom in on that.
Damn.
Is it hard not to tell? I know it's a boy.
STEVE: And I know it's a girl. [CHUCKLES]
But I know more. Yeah... right.
Before this, we wanted a baby,
and after this, just because it meant that
I'd have to help take care of him.
It wasn't a big enough reason not to have a baby with him
and have all the beautiful things that having a baby,
you know, bring to a family and a couple.
Here you go, Steve-O.
It's definitely in there.
What is this all about?
I am making a video blog of myself.
This is intended to be a gift for you,
my child who I have not yet met.
MICHEL: Do you think it already has a hard head?
WOMAN: It could. That comes from his dad's side.
My intention is to pass on as much of who I am
as possibly can to you.
And I think if I can do that in a good way,
it can be even more meaningful
than having a father who's around
for 30 or 50 or 60 years of your life.
Now, I hope that happens too,
but this is a nice little backup insurance plan.
For me, the weird thing is-- The scary thing is, like,
every week or so there's a new thing
where I'm like, "Oh, I can't do that."
I'm losing that. I lost that, just lost that."
[MAN SHOUTING]
We have to have a pregnant woman to start us.
Is there any pregnant women in the house?
We got one pregnant woman!
Well, get in, girl, you're the starter.
On your marks. MAN: Here we go.
Get set. We're set!
Go! Go, go, go.
Not everybody knew that Steve had ALS.
They were treating him like was still a healthy ex-football player.
I hadn't cried, I think, in a long time.
It's just kind of like, this is gonna be okay.
But seeing that kind of, like, awkward gait,
it crushed me.
[PEOPLE SHOUTING]
Yeah, buddy! You did it!
Stretch! Stretch.
Stretch.
[SPEAKING INDISTINCTLY] Good job, dude.
No one knows what I'm feeling right now.
I don't want want him to go through this.
I don't want to deal with this. For the first time,
you don't want to realize that this is the truth.
And in those moments you realize it's the truth,
and, like, this is fucking happening to my husband.
This is happening.
STEVE: I think the big question is, "Why is this happening?"
You know, me and Michel are so good together.
We're so perfect, being really good people.
So I kept asking over and over again,
"God, if you have some control over this universe,
"why would this happen to me?
"If you have control over this,
"then save me, you know. Help heal me.
Because I don't want Michel to be here by herself."
[OVERLAPPING CHATTER]
I'm sure there are people that get this diagnosis
and just kind of shut down,
whereas it's kind of ignited a fire in me
where I'm not gonna shut down.
Not only am I not gonna shut down,
I'm gonna go a little bit further, you know?
Push the envelope a little bit.
[WHOOPING]
¶ Yes, I understand ¶
¶ That every life must end ¶
¶ Uh, huh ¶
MICHEL: Hell, yeah! Hell, yeah!
Halleluiah! MICHEL: Yahoo!
¶ Uh, huh ¶
¶ Oh, I'm a lucky man ¶
¶ To count on both hands ¶
¶ The ones I love ¶
¶ Some folks just have one ¶
You know, I was torn. A lot of people were saying
I shouldn't necessarily go on this trip.
I should be seeking out ways that I can get healed
or get some treatment.
In the end, I think I decided that
the odds of me finding some type of treatment
in the next six months were too small.
It's gotten a lot harder for me to do stuff.
The other thing that's really frustrating for me
is the talking.
So it's getting harder for me to talk.
I know I've said this before on film,
but it's not gonna stop, I guess.
It's probable that it won't stop.
¶ Hold me till I die ¶
¶ Meet you on the other side ¶
Quite possibly one of the coolest things I've ever done.
We've been, what, around the world,
and in front of millions of people,
but that plane flight was amazing.
MICHEL: Glacier landing versus punt block.
I don't know, it's close.
MICHEL: Want to tell the baby anything?
We had a destination in mind when we came up here,
and I would say we are there.
Be present now, right?
Better late than never.
Better now than never.
MAN 1: Yeah. Yeah. MAN 2: Talking?
Sorry.
My favorite part is to do things like this.
Hello. Hello.
Hey, how are you? Oh, how are you now?
Well, things changed since you're here to now.
Nothing has changed for me.
It's a couple seconds. For you, though? Huh?
Things have changed.
Like, it's weird
that I'm potentially having a conversation,
initiating a conversation,
with someone who I actually might never talk to
in a real conversation. Mm-hmm.
The baby will be born in November.
So I'll talk to it, sure.
But let's say a real conversation starts at 4 years old.
Maybe I'm not having conversations at that point.
It's fucked up.
So then it's like,
well, if I was that person...
what would I want to hear people say?
What would I want to hear my dad say?
You know? You just want him to be real.
Yeah, so that's why I'm like, "Look this is just raw and...
unprepared--
I mean, the same shit
we want when our dads are alive.
We dislike what so many parents do
is like, "I'm parent now.
"I'm not a person anymore.
"I'm not real. Yeah.
"I don't have all the exact same flaws as you.
...doing the exact same stupid shit that you're doing."
The big thing that's happened since I've been diagnosed
in January is that one thing I want to accomplish
is to have all my relationships in order
is the term I've been using.
In my teenage years, my dad was very protective.
His only way to teach how to live life
was to teach it out of fear.
STEVE: As much as possible, try not twist like that.
You got all your questions there?
Yeah. That's good.
So I think a good place to start, Dad, would be--
How about your birth?
Yeah, the very first memory of me
as a very young child.
What were some of the things that you remember?
Is that thing on? Yeah.
It can hear what you just asked me?
Yeah. Okay.
He was a reader, pretty cerebral.
He wasn't an introvert, but he was more on the quiet side,
I can remember he was about 6 years old,
and I had him in the backyard.
He was at the farthest end of the lot in the backyard.
I bought him a Wiffle ball and a bat.
I said, "Keep your eye on the ball,
and watch the ball hit the bat."
So I tossed it to him.
First time he swung the bat.
He hit the ball over the house.
And we're talking plastic Wiffle ball.
And I thought, "Holy crap. What do I have here?
Our parents got divorced when I was 15,
and you were 11 maybe? Something like that.
And so growing up, what I remember
is that they would fight all the time.
A lot of verbal abuse.
Our parents literally screamed at each other
for hours, just like screaming as loud as they could
for hours and hours and hours.
There reached a point between Mike and I where things got pretty bad
and the boys did not like that,
especially when I started going to therapy
and learning how to stand up for myself again.
Then that got pretty tense.
I didn't have experience in how to raise somebody.
My father was never home when I grew up.
So I didn't really have an example of how a father should be.
So I was just doing the best I could do.
I probably over pushed in some areas
just because I just saw a lot of talent there
and somebody that had fierce determination.
So I thought, well,
there's a lot this kid can do.
And here come the Cougars!
MAN: There's Stephen right there.
When you saw--
How the interaction was as a family--
And things weren't right between your mom and I--
That you can take all that frustration out on the field.
And it was a great way for you to release
pain, anger, uh...
And I hate to say it, but that was
one of my motivations when I played ball.
'Cause my own life with my parents
was pretty dysfunctional.
And you grew up in a pretty dysfunctional marriage.
STEVE: The biggest thing my dad has contributed to me
is just determination, perseverance. Hard work.
I mean, the guy to a fault, he works hard.
I ended up in a 12-step recovery program
for workaholism and anxiety.
This a biblical principal
and it's in the Old Testament, but it says,
when the kings and their sons would sin,
the generational sin
would go from one family to the next
unless somebody in the family
would get before the Lord and say,
"Okay, God, forgive me for this."
I'm not doing this anymore."
Somebody has to stop the sin
or else that sin runs from one family to the next.
Okay, a topic based blog here.
Today's topic will be religion.
God. I don't believe God is a father figure
white-haired man up in heaven.
I don't believe in the fear
that is in the bible.
The fear tactics that are used in the bible.
I believe in love.
Treating someone else as you would like to be treated
is my number-one...
rule.
The more I pray, and the more I read about this stuff,
the more I believe God wants me here.
Now, wait a minute, if that doesn't happen,
I can accept that. Okay.
The more I hear you saying, God wants to heal you.
God wants to heal you, and I'm like, hmm,
that's interesting because it says in the bible that we don't know God's mind.
No, that's not true. It does say that though.
So are you saying that since I'm--
I'm not saying--
Since I'm sick and if I die it's because
I don't have the mind of Christ?
I'm not saying that at all.
I would never say that.
Never.
I'm feeling open and a little bit anxious and nervous.
How are you feeling? About the same.
Let's give Kevin a warm welcome.
[CHEERING, APPLAUSE]
It's a privilege to be back here again.
I think we were here about three years ago, wasn't it?
Four years? Three or four years ago.
When I started reading that book,
I started feeling inside of me
that I should lay hands on my own son,
but I was scared, just like he was,
because I didn't want it to not work.
Well, just do it.
[WHISPERING INDISTINCTLY]
We're gonna get there.
This whole thing's gonna be easier, Michel.
It's gonna take time.
KEVIN: We're gonna focus on ourselves right now,
and we're gonna put our hand on our body parts.
Later, we'll put our hands on other people.
Later on.
But we'll start here first.
And then I want us to sing "It's The End of My Pain As I Know It."
Are you ready? Let's do it, Kevin.
¶ It's the end of my pain as I know it ¶
¶ And I feel fine ¶
KEVIN: Okay, now, check your body out.
Try to make it heard.
Try to do something that you couldn't do before.
I'm gonna go run. See if there's 10 percent,
20 percent, 30 percent difference,
50 percent, 100 percent improvement,
some kind of improvement.
Come on, try to make it heard real quick.
Now, wave your hand if you had some kind of improvement.
Right there. Right here. Right there. Right over here.
Right back there. Right here. I'm gonna run.
Okay, go for it. Right here. I'm gonna run.
Right here. Right there. Should I run?
Wow! Look at this.
This is awesome.
Just go do it.
This is-- Go. Just go ahead.
Just check it out. Try to make it heard right now.
Okay, wave your hand if you've got some more breakthrough.
Look at this. More.
Okay. All right. Good try.
Here let me have your hand.
Good try. Try again.
Yeah, that was how many steps?
Four steps.
[APPLAUSE]
Let's get a couple big guys here as well
and come alongside of him to run with him.
You're a big guy. Come on.
You in the blue. There you go.
Don't touch me.
This is bullshit.
It's not bullshit. Yes, it is.
So at this point, what we're gonna do is
these guys are gonna go back there and practice this while I continue.
There you go. Keep up with him.
He's gonna tell you it will happen when he leaves you.
He said usually things happen once he's gone.
Just so you know.
MIKE: Michel, you're his partner.
You need to trust and believe with him.
You really need to-- She's with me all the way.
I am with him so much, Mike.
I know you are. Don't you dare say that to me.
It's okay.
Michel, come on in. Everybody's different.
WOMAN: I know. That's what she just said, though.
I feel sick. Okay.
The team's gonna come this way and go past us that way.
Okay.
MAN: It was a surprise appearance
by Steve Gleason.
His first appearance on camera
since going public that he had been diagnosed
with ALS.
Obviously, I don't
how to move or talk
quite the way I used to.
When you're good at something, it's fun to see other people admire you.
And I think that's a good thing to be so good at something
that people admire you.
But I think it could be dangerous if that becomes obsessive.
And I certainly struggled with that when I retired.
If you're not doing something where there's tens of thousands
or millions of people that are admiring you,
can you still be happy?
Tough question.
It was just prior to the Saints home game
on September 25th with the Texans
that Gleason went public that he had been diagnosed with ALS.
He was named an honorary captain for that football game.
and came out at mid-field to lead a "Who-Dat" chant
that no one will ever forget, especially Gleason.
STEVE: When I would play football, during games, I would have
this fear of walking onto the football field.
And I would tell myself, "Hey, if I die today
"or on this play, then I'm okay.
"I've had a good life, and I feel good about
kind of accepting death."
At the same time, I think that
that thought and maybe the actions that followed it,
sometimes I think that's-- That might be why
I have ended up where I am right now.
And now I think about it, and I don't want to die.
[CROWD CHEERING]
[CROWD CHANTING] WHO-DAT?! WHO-DAT?!
WHO-DAT SAY DE GONNA BEAT DEM SAINTS?!
MAN: So for now, Gleason's goals are clear.
Live each day to the fullest
and spread the word about ALS.
If I could help show and inspire people to--
That have been diagnosed with ALS to continue living their life,
and if we can, as a group,
uh, if we could help those people--
Those people who have been diagnosed continue to live
a life that's enriching and extraordinary,
um, then I think, uh,
that's part of my goal.
MAN: We have to define your purpose.
To me, there's two things you can do
in terms of medical disease related fundraising.
Either for research for a cure,
or for services, equipment, technology, etc.
I chose services and equipment as opposed to research.
Okay.
I want to accomplish two things.
I want to advance those
technologies, services, and equipment.
And I'd like to provide people with purpose.
We had a kid who e-mailed me. He said,
"I'm 29, I just read your entire blog about going to Alaska.
"That's been a dream of mine forever.
I got diagnosed with ALS two months ago."
My idea is to create ways for ALS patients,
even if they can't move, to participate in these projects,
these expeditions.
But that's-- If all goes my way,
that's what I'd like to do with the money
that we raise for this foundation.
[CRICKETS CHIRPING]
MAN [OVER SPEAKER]: Legally, for the formation...
No, no, no.
We do need something for the foundation.
Yeah, for, so, Jim--
[JIM CONTINUES, INDISTINCTLY]
Thank you so much, guys. Have a great night.
MAN 1: All right, thanks. MAN 2: Thanks, bud.
MAN 3: Late.
That was sweet.
[WATER RUNNING] Hi.
[MICHEL SPITS]
Good morning. Hi.
Hey you. I'm sorry.
MICHEL: That's okay.
STEVE: I don't know why I did that.
MICHEL: I don't know either.
STEVE: You are so important. You know that.
You are, you're it.
You're, you're it.
You're it.
All that other shit doesn't matter.
MICHEL: Okay.
I'm telling you, I'm serious.
But I am kind of excited
because I think we could create something here.
Buddy, I think it's great.
I mean, I think it's great.
We have a passion, a project,
something that we have to live for.
Steve, this is-- That's raw, you know.
This is-- Look, this is--
That is nothing why I'm crying,
this has nothing to do with that.
I don't know why I'm crying.
I want you to help me create it.
I know. Steve, I'm here with you in every step.
It's not like I'm not--
I know. I'm just saying I want you to feel like
we need you to create this.
This is...
There's things that you can get too involved in,
but I think that this is great stuff.
The contractions, I can't even tell,
'cause there's so much pressure all the time,
and they've moved from my hernia down to my--
It's go time. It's go time.
JULIE: Michel, that is how labor is.
It's not back labor.
Do you have any fluids coming out at all?
I just had a tiny little thing of pink this morning.
Okay. You're in labor!
Julie, but we don't know yet,
so I don't want to be one of those people--
Yeah, I know. Okay?
Sarah's sitting right here and she's like
"She's having a baby."
You're having the baby today. Steve, are you ready?
No choice.
[JULIE LAUGHING]
No choice.
I'm letting you know in advance,
it's going to be very difficult for me,
pushing this thing out of that little hole.
You're gonna do great. I'm gonna help you.
There's things in life that are hard, but you just gotta do.
I know, but do you understand what's about to happen?
If it happens.
WOMAN: Michel Varisco.
Well, it's, uh, October 19, 2011.
We've done several of these types of journals,
but, uh, it's, uh-- It's go time.
I've been scared about doing this for my whole life.
[HEART MONITOR]
Come on out, little buddy.
Come on out.
Oh, sweet Jesus, Steve.
I want a kiss.
You got it.
Michel, I love you so much. I love you.
And we're doing the-- Really, the coolest thing we could do together, right?
That's right. Fuckin' right, dude.
MICHEL: Dun-da-da-dah!
DOCTOR: Let's see. All right, this is it, guys.
There you go.
[INDISTINCT DIALOG]
DOCTOR: We're gonna do most of the work.
Give me a deep breath. Give me a little half push.
There we go. All right, no more.
Let's go straight up, Steve. Ready?
Straight up. Hold right here.
Ready? Watch this.
MICHEL: He's little. Look at him, Steve.
DOCTOR: Okay, Michel, look at your baby.
Look at this baby. Look at that beautiful baby.
All right, Steve, get your hand here.
We got it, it's okay. There it is.
We got it. You got it, I don't have it.
You got it. You got a baby boy.
[LAUGHING] You got a baby boy.
Wait, can you hold him?
I got him. MICHEL: I knew it was a boy.
WOMAN: He's a Rivers. That's my boy.
[INDISTINCT CHATTER]
I don't know how to hold him.
I don't-- I don't think that's mine.
You don't?
I mean, it doesn't even seem real.
[BABY FUSSING]
It was so easy.
WOMAN: You did it good. You were great.
STEVE: Mick, you did great, dude.
I'm ready for number two.
[LAUGHING]
STEVE: Well, okay.
STEVE: ¶ Rivers and roads ¶
MICHEL: ¶ Rivers and roads ¶
STEVE: ¶ Rivers and roads ¶
That's, uh, Rivers Varisco Gleason,
your grandson.
Rivers. That's what you named him, Rivers?
Yep.
What's his middle name?
Varisco.
Oh. Just like her last name.
[LAUGHING]
Rivers Varisco Gleason.
Rivers.
[LAUGHING]
All right.
[LAUGHING]
So are you at the hospital?
Oh, yeah, dude.
Dad, we had the baby, like, half an hour ago.
Half an hour ago.
Yeah, man.
What's up, Rivers?
You're right here.
Uh, all right.
October 20, 2011,
and this will be...
[CLEARS THROAT]
...my first video journal
where we're in it together.
How about that?
It's also the first video journal where
I get to...
talk to you in, what, the first person
rather than using pronouns.
Uh, I'm scared.
We don't know what the hell we're doing.
Anyhow, the big thing is,
I'm writing a bunch about
what the word and the name,
and-- And what rivers actually mean to me.
I came up with this several years ago,
but I decided that rivers are the source of fire.
Here's my logic.
A fire burns wood as its fuel,
and this wood comes from a tree
that drinks from the rivers,
and so, uh, the rivers are the fuel for the fire.
And, uh, you are the rivers...
for my fire.
[Van Morrison's "Crazy Love" playing]
¶ I can hear her heart beat ¶
¶ For a thousand miles ¶
¶ And the heavens open ¶
¶ Every time she smiles ¶
¶ And when I come to her ¶
¶ That's where I belong ¶
¶ Yet I'm running to her ¶
¶ Like a river's song ¶
¶ She give me love, love, love, love ¶
¶ Crazy love ¶
¶ She give me love, love, love, love ¶
¶ Crazy love ¶
¶ She give me love, love, love, love ¶
¶ Crazy love ¶
¶ She give me love, love, love, love ¶
¶ Crazy love ¶
¶ She give me love, love, love, love ¶
¶ She give me crazy ¶
¶ She drives me a little crazy ¶
[INDISTINCT DIALOG]
[CHEERING]
Today I'm gonna talk about, uh...
um, my insecurities.
I think I cared a lot about what people thought of me,
and, uh, suppose I-- I battle that even today.
Um, ahem,
I wonder sometimes if I'm doing too much
because people want me to do a lot.
You know, people are like, oh, you're a hero, you're--
uh, ahem, you're, uh--
[COUGHS]
you're an inspiration, so I'm, like, okay,
what can I keep doing to continue to be an inspiration?
[PHONE RINGS]
Hello. WOMAN: Hi, is this Michel?
This is she. Hi, Michel, it's Melanie,
and I am here with Jim Eutizzi,
and then, um, a couple people that I work with.
MICHEL: Oh, okay. How are y'all doin' today?
Good. I'm here with my husband Steve,
and our baby Rivers.
And we've got a, uh-- A message to give Jim.
[BABY BABBLING]
That was from Rivers.
That was hello from Rivers.
And from us, uh, we wanted to let Jim know,
well, ask him if he'd like to, uh--
To go to Italy with his son,
because we've already bought him tickets
for about 12 days in June.
Here are your tickets.
[SOBBING]
Okay, Michel.
Well, does he want to go or not?
MELANIE: You want to go, right?
Oh, God.
I don't know what to say.
That is so awesome, Melanie.
[INDISTINCT DIALOG]
I don't know what to say.
Hi, this is Kurt Warner,
and I support Team Gleason.
No white flags, baby.
Hi, I'm John Elway for Team Gleason.
No white flags.
I'm Reverend Jesse Jackson.
I support Team Gleason. No white flags.
I'm Mike McCready,
badass guitarist for the greatest rock band ever,
Pearl Jam.
Hey, I'm-- I'm Steve Gleason.
I'm a totally incredible human being
doing fantastic work with Team Gleason.
Always remember. Always remember,
BOTH: no white flags.
[NO AUDIBLE DIALOG]
STEVE: It's my belief that
most of what ALS takes away from people,
technology can give back.
It transpires that my oeuvre has evidentiary,
not literary, merit. Damn it.
MICHEL: You lose your voice when you have ALS.
And so he found-- He researched this place
where you can actually, um, voice bank,
so his mechanical voice, instead of being like Stephen Hawking,
his is gonna be his voice.
Senator Russ Feingold of Wisconsin
also took himself out of the running.
[¶¶¶]
Then it goes to eye technology
where he talks with his eyes,
but he's talking a letter at a time.
WOMAN: When you see the green dots in there,
that means it's picking up on it,
on your eyes. First, let's get back--
Get-- Get you back. There you go.
Got it.
[¶¶¶]
Do you just get really--
As you get used to it, can you do it--
Can you-- Can you do it faster?
WOMAN: Oh, gosh, yes.
STEVE: Hi Michel, you rock.
[WOMAN LAUGHING]
It's the first time today, man, I watched, uh,
some of my videos from last couple days,
and I listened to myself and I was--
Sound-- Probably sound--
Sound ill. Sound sick.
And that, uh--
It's tough, man.
I've been thinking about fathers and sons
a lot since you've been born. And...
at this point it looks like we're not going to have
the normal father-son relationship.
I can't go out and play catch with you.
I can't throw you a batting practice.
But, uh, I want to do everything I can
to be a good father, uh,
to give you what a son needs
from his father.
And, uh,
I'm gonna be around, buddy.
It's not gonna be easy, but it's gonna be awesome.
And I'm gonna be around until
you are able to stand on your own,
as a man.
MAN: Steve, how old are you?
34. 34.
Do you know what your weight is right now?
190. 190.
So it's gonna be 24 inches wide,
it's gonna have the casters up here.
The casters up here, you don't have 'em on this chair
because it's a little more stable base.
[¶¶¶]
[INDISTINCT DIALOG]
STEVE: It's crazy, man.
I am to the point where
I barely go out of the house by myself.
Michel goes everywhere with me now.
She helps me shower.
She helps me put on my clothes.
She helps me eat.
You have a mom who's just incredible.
Incredible.
Remarkable, amazing.
And we're both so lucky to have her.
I think any caretaker, you're always kind of there
trying to make things easier for him.
I just feel like it's-- It is-- It's what I do,
and it's-- It's our relationship, it's what we do,
it's-- It's just kind of, like, part of our life,
like this is-- This is what it is.
So I set up things for him in the morning,
I set up things for him at night,
help him walk, help him brush his teeth,
help him-- Help feed him, and it's--
It's just kind of like a new part of life.
Just like it is learning how to take care of Rivers.
[BABY COOING]
Mm, mm-mm-mm.
[INDISTINCT]
[BABY COOING]
[BABY FUSSING]
Hey.
Hey, man, you're okay.
STEVE: Kids are a lot of frickin' work, man.
And, uh, we get up every three hours
to feed you, and when I say we
I mean Michel.
You like that?
And I can see it's taking a toll on Michel.
She's getting tired.
And I'm gonna think of ways to, uh--
To help her,
either having someone stay over at night,
or something, we gotta figure out something
because I'd like to somehow ease that, uh, burden
a little bit from her.
So do you-- Are you-- Are you in that?
I mean, are you familiar with any of it,
are you in the-- I mean, you look,
you're obviously in good shape.
I mean, like, you are-- Are you, like, in the therapy world, or--
No. No?
He's a neighbor and, big enough, like,
he's going to move me where she might not be able to.
You know, he was my hero.
This is the guy that I wanted to be growing up.
Turned out, you know, he was dating Michel,
and Michel used to baby-sit me as a kid.
When he was diagnosed she asked me--
She gave me an ultimatum.
She said, "Blair, you either quit your job,
or I'm gonna kick you in your dick."
[GROANING]
Blair and I's life purpose was to make sure Steve was happy.
There's times where Steve would say,
what am I doing? What's the point?
This is awful. And we'd be like,
okay, like, what can we do?
Do a dance, build him up.
And it was-- We had a fucking bad ass unit.
[¶¶¶]
MICHEL: The journey into the lake, part one.
...three, go.
[¶¶¶]
Damn!
Rivers, be a part of the fuckin' team,
and eat your goddamn food.
Hey. Hey. Hey.
A-shoo, a-shoo. Hey. Hey.
[BLOWING]
¶ How long have I known you, brother? ¶
¶ Hundreds of lives, thousands of years ¶
I feel like, in many ways, I'm fulfilling my purpose.
I feel excited every day to get up and-- And make
a difference and an impact on people's life.
I feel like I've put together a good team of people
to help take care of me.
Um, I've put together a good team of people
to look for solutions.
People will say, "Oh, it's such a sad, tragic story."
It is sad, and so they're right,
but it's not all sad.
I think there is more in my future than in my past.
I believe my future is bigger than my past.
And so that's uplifting.
That's inspiring.
[BABBLING]
Bah!
[GIGGLING]
Bah! [GIGGLING]
Lately, the coolest stuff for me has been
you falling asleep on my, uh, lap
while we drive around in my chair.
MICHEL: Which you need to name, by the way.
You mean my electric chair.
This isn't the electric chair, though.
MICHEL: EC.
You should call it gonorrhea because it's temporary.
[LAUGHING]
MICHEL: Gonny?
Gonny. MICHEL: Gonny.
Gonorrhea's temporary? MICHEL: You just coined it--
Yeah. Penicillin cures all that shit.
And doxycycline. Somebody told me that.
[BABY FUSSING]
June 17, 2012.
Are you gonna shoot it?
MICHEL: It's a-- Look at the camera, Rivers.
Oh, Dad--
What? MICHEL: It's a video.
Oh, it's a video. I didn't know that.
Why didn't you-- Why didn't you tell me that?
Then I won't be sitting here like a s--
Stuffed, uh, pepper.
Hey, buddy.
So what are all the numbers for, Steve?
[LAUGHING]
What am I missing? Am I missing something?
MICHEL: All right, he's doing his, uh--
June 17, 2012. Oh, I get it.
[LAUGHING]
All dads never think that they're, uh,
annoying their kids like they do,
so I have no idea how I will annoy you.
[SIGHS]
I hope it's not the way that my dad annoys me.
So your taste buds still working pretty good?
You still taste stuff?
You act like you've been eating [BLEEP].
You got all embarrassed.
Your sense of humor still working?
[LAUGHING]
I'm sorry, Steve.
Dad. What?
I just asked if your taste buds were working.
Do you know anything about ALS?
Not a lot, but it looks like it's not-- It's--
It doesn't affect your taste buds.
I didn't know that. Didn't know that.
I was not embarrassed. I was laughing at you.
Oh, you were laughing at me.
'Cause I didn't know that.
Okay. All right.
MICHEL: That was one of the best just now.
What-- He's got--
My dad will go from zero to over the line.
Then like you're like, "Wait, what?"
So weird.
STEVE: There's almost nothing more personal than
a father-son relationship, you know.
What I think is so interesting is that, uh,
this is obviously--
This whole thing, these video journals, this film,
all this is about a father and a son.
Um, my dad and I, I think,
believe a lot of the same things,
but he's this wacky, fundamental, literal, uh,
kind of single-minded man
who thinks that I should believe
exactly what he believes
in order to be saved, I guess.
I was diagnosed with a terminal illness
and I know that when you get scared
you're going to jump to your camp
that I need to pray like you.
I need to believe all the same things that you believe.
You promised me that you would not question my faith.
Okay.
But every time you question my faith it crushes me.
I-- I can understand that.
Because here's the thing about faith,
you can't argue with someone's faith.
That's true.
You can't debate with someone's beliefs.
That's true.
Because there's no proof either way.
Stop trying to understand
with your mind
the relationship between my heart and God.
Okay.
My soul is saved.
Okay.
Don't be angry at me. Please.
[SOBBING]
Stephen, you're my son.
[SOBBING]
You don't know what it feels like inside
that-- That I might lose you, man,
you don't know what if feels like,
it's killing me.
[SOBBING]
Glad you came.
I love you, Stephen, with everything inside of me.
I love you too, Dad.
[BABY CRYING]
Who the hell brings their kid to this thing?
All right, ready?
[LIP BUZZING] [COOING]
I'm out of breath.
I think part of what we do every day is search for
something that's....
permanent stabilization, and,
you know, maybe that's not out there,
but I'm hopeful. I'm hopeful.
All right, bud. You'll be great.
Prick you here, okay?
All right.
[MACHINE HUMMING]
There's been cases where stem cell has worked.
Some ALS patients will have the procedure,
and they will not progress any further.
MICHEL: We spent lots of time in the hospital.
Like, just sitting there,
so I needed to do something so I just started drawing.
When I was drawing, I could completely ignore
any doctors that came in, or anybody who came in
that I didn't want to talk to.
I just completely can zone out.
He wants us to call an ambulance.
Ask him if we should. Ask him if we should.
BLAIR: After that surgery,
there was definitely an adverse effect,
and he was in such a large amount of pain,
he was convinced that he was gonna die.
I love you. You love me?
I love you too, are you scared?
You are?
Earlier this week I had stem cell therapy.
And, uh...
so far, not so good.
MICHEL: All right, with steady pressure
gently insert enema tip into rectum
with a slight side to side movement
with tip pointing toward navel.
Michel, look,
you have to be able to do this.
Okay.
Don't get me down there and make me wait
for fucking 10 minutes, okay?
Okay? Yeah.
Okay.
Is this your butt?
BLAIR: Oh, my God. [LAUGHING]
MICHEL: Okay. BLAIR: Is it all in?
It's all in.
Besides the stuff that's in his--
I don't think anything went in.
You didn't feel it? Nothing.
God-fuckin'-damn it!
Who knows about enemas?
Judy Robert, thank you for coming.
We have some-- We have some questions for you.
Judy, do you know what you're about to get yourself into?
I have a whole bottle of lube.
What kind of lube did you bring? Is it scented?
I have-- Actually, I think it is.
It is. What scent did you get?
Um, baby powder fresh.
Baby powder fresh. I love that smell.
It's a truly beautiful smell.
So, what are you expecting out of Steve today?
Um, a lot of shit.
[LAUGHING] I hope to get a lot of shit out.
All right.
I'm gonna know you in a whole new way.
So do you feel it? I mean, does it feel--
We record-- Recorded Steve earlier.
"I feel like there's a football lodged in my ass."
Okay, so, yeah, there's probably like this.
You all right?
[STEVE GROANS]
Judy, What?
am I the hottest guy you've ever ass fingered?
[LAUGHING]
[STEVE GROANING]
JUDY: That's it. That's it.
Rivers.
I'm having a bad day.
I'm an asshole to people,
and I don't care.
I can't talk.
I think the--
The last of my
talking days are here.
The drugs I take don't work.
I have no faith that I can heal.
I have no hope. None.
No hope whatever.
I want to punch
something, but I can't.
The only thing I can do is scream.
[SCREAMING]
DREW BREES: "On Monday, September 25, 2006,
"Steve Gleason was responsible for
"one of the most dramatic moments
"in New Orleans Saints history.
"He blocked a punt in the first quarter
"of the team's return to the Superdome
"following hurricane Katrina.
"That blocked punt, that season,
"symbolized the rebirth of the city of New Orleans."
Amen. [APPLAUSE]
Yesterday, about five minutes
after I got home
I pooped all over myself and my wheelchair.
And I think it's crazy
that I can go from
people saying, "You're my hero,"
to having to be helped onto a toilet
with my pants full of shit.
It's an incredible example of polarities,
and dichotomies,
and juxtapositions
that is my life.
¶ Happy birthday, dear Rivers ¶
¶ Happy birthday to you ¶¶
[CHEERING, APPLAUSE]
[INDISTINCT CHATTER]
[¶¶¶]
WOMAN: When you blow out,
you gotta blow out hard and fast,
'cause it's measuring how much you get out in one second, okay?
A normal breathe in.
Suck in. Now blow, push!
Push. Push, push, push, push, push push,
push, push, push, push, suck in big.
That's terrible.
Uh-oh, we're not accepting that one.
It's supposed to look like that.
When did you get this?
You didn't have this last time when I saw you.
A few weeks ago. That's so cool.
This setup I have costs $6,000,
but others cost 20k.
[MOANS]
[BABBLING] [MOANS]
Alligator.
Mom. Alligator.
I love him.
Ah. Daddy.
[LAUGHING]
Say it again, bud.
Daddy.
[BABBLING]
I love him.
[BABBLING]
I love him.
[BABBLING]
Rivers, I want to talk about obstacles
in adversity.
No matter what, how wealthy you are,
how poor you are,
we all face adversity.
I do not want you to fail,
but I want you to put yourself out there,
and available for potential rejection.
In ways, I think, that's how we succeed
because that's how we grow,
and that's how we gain perspective.
¶ When I'm wiser ¶
¶ And growing taller ¶
¶ I will see your way ¶
¶ When I've come to the ¶
¶ Places I'm goin' ¶
¶ I will know your ways ¶
¶ Oooh ¶
¶ Ooh, ooh, ooh ¶
¶ Ooh, ooh ¶
¶ Ooh, ooh, ooh ¶
¶ I can feel it hurt now ¶
¶ I can turn this pain plain ¶
¶ Try and see it clear ¶
¶ But I don't know why it's here ¶
No!
Whoa.
¶ You can keep the sound down ¶
¶ As long as you want now ¶
¶ Dude, yeah ¶
¶ You can push it on another ¶
¶ Damn, that man's your brother ¶
Oh-oh.
¶ When I'm wiser ¶
¶ And growing taller ¶
¶ I will see your eyes ¶
¶ When I'm wiser ¶
[LAUGHING]
¶ And growing taller ¶
¶ I will see your eyes ¶
¶ When I've come to the places I've been ¶
¶ I will know ¶
MICHEL: Yay!
[RIVERS SHOUTING]
[VOICES ON TV]
I wasn't sleeping at night because I was caretaking for Steve.
[VOICES ON TV CONTINUE]
And then, uh, the addition
of Rivers getting a little bit more needy.
It was hard doing that plus taking care of a kid.
[TV continues]
At some point put Rivers on my lap.
Rivers, look at me, You do not hit your mom.
You cannot hit your mommy.
You're going to go to time out.
[CRYING]
All right, buddy.
Now you know you cannot hit your mommy.
[CRYING]
You understand why you were in there?
Because you hit me three times.
You cannot do that, okay?
All right, bud?
People started saying, like,
"Michel, you need help, you need help,
you need more help," and it's kind of like,
well, this has turned into my purpose,
and I don't want to seem weak,
and, like, I see other people doing it.
Can I get a pillow?
Come on now.
Honestly, I think the enormity of what she's going through now
and dealing with this situation
just takes all of her energy.
I still think she's trying her best
to do as much as she can for people
and especially for Rivers and Steve and her family
and struggling just to deal with the situation.
It's easier, almost, to, like, make a difference
with the world with this disease.
It's, uh, some face time on TV or some speeches
or some Tweets,
versus, like, the reality
of the hardness it is to maintain relationships
when you can't move or help or talk,
and so we're just kind of traveling like this,
like we're not separating,
but we're separated in what we wanted to do with life.
WOMAN: Tonight the federal government is saying no
to some devices that give people with disabilities
a voice literally.
MAN: Recent changes to Medicare and Medicaid
have limited ALS patients access
to speech generation devices.
Team Gleason became one of the only entities
that was giving these speech devices,
so the people that couldn't afford it through Medicare anymore
still wanted to communicate,
and we wanted them to be able to communicate,
so we just started fulfilling all of our requests,
which meant it was 2 and 3 and 400,000 a month.
We were able to fill every request
that people asked of us.
So much so that it's depleted our money that we had,
so we're now actually going out and beating on doors
and asking people for money again.
WOMAN: Former Saints team captain Steve Gleason
and his foundation organized a Gleason Gras,
a music celebration at Champion Square
to raise money and awareness about ALS.
When I say "Gleason," you say "Gras."
Gleason! CROWD: Gras!
Gleason! Gras!
MAN: Thousands gathered to celebrate
the inspiring effort of one man.
You've changed my life.
You're so great.
We went up to Washington and met with the Secretary
of the Department of Health and Human Services
and pled our case.
We hope to pass this law,
and once again Medicare will pay for these devices.
[RIVERS FUSSING]
No. Yes.
One bite of this, and I'll give you chips.
We had no idea Steve was just going to get bigger and bigger and bigger.
I think with Team Gleason, he's putting too much
into Team Gleason and not doing enough
of his video journals and stuff for Rivers.
I think it's a balancing act.
We all have to balance things. It's kind of his balance.
And it's a huge-- It's super-hard.
[SIGHS]
VOICE SIMULATOR: This is the most significant achievement
for Team Gleason to date.
[CHEERING]
What's going on here, Rivers?
See all the cameras?
You like it in here?
VOICE SIMULATOR: Hey, Vavoom, what you doing?
What you doing?
Steve has wanted to be a hero,
and it's amazing that he has gotten--
And he is legitimately a hero--
Like, of a town for blocking a punt,
and now, like, the face of ALS.
But people come up to me and be like,
"Congratulations."
And you're like, "For what?"
Like, "What are you talk--"
Because, like, "What? What do you mean?"
It's just such a--
This whole thing is a huge mind fuck.
STEVE: It's important to me that we do Rivers sandwich
and nose kiss every night, Michel.
That's the only physical time I get with him all day.
Okay.
You tried to skip it tonight.
Okay.
And you took-- Okay.
Thanks.
You're welcome.
I didn't mean it stupid.
I just didn't think about it.
Are you okay, Mick?
Great.
Yeah.
Shit.
Are you okay?
Yep.
I feel like you have no compassion towards me.
Everything is rushed.
You always have somewhere else to be.
You finish my sentences.
You rush any care that you give me.
I don't understand what I did to deserve it.
Please tell me how I can improve.
You walked by me ten times tonight
while Rivers was on my lap.
I tried to get your attention.
You didn't even look at me.
Sorry.
I don't think it's anything you can improve.
I think it's how I can improve.
Do you feel angry when you are with me?
Um... No.
I feel more angry with myself,
for how I feel in general.
What can I do to be more important to you?
I don't know.
If you want to talk-- You don't have to,
but if you want to, I will listen.
Thank you, buddy.
[PLAYING GUITAR]
MICHEL: That's my favorite song.
MAN: Your favorite song is "Come Back"?
[CHATTER]
I must say I have done some amazing stuff in my life,
but this experience was right at the top of the list.
I just interviewed Pearl Jam on their latest album.
The music you guys have created
has plastered the wall
of my adolescent and adult life.
I want to thank you
for providing the significant portion
of the soundtrack for my life.
I have my son Rivers.
I am assembling a video journal library for him
in case the experts are right about my timed life.
You did not know your dad.
What are a couple of things you wish you knew about him?
Yeah, see if I can get through this. Um...
That's a great question and coming from you.
Um, I couldn't appreciate it more.
Um...
Of course I think just deep down I just would--
Would have wanted to know just, you know,
if he loved me and how much, you know.
I get the idea that he did, you know.
But, uh, the other nice thing would have been
just having, um, someone of my own blood
give me some insight of-- And, you know,
what it would be like to...
grow up and, you know, be a man, a good man.
I wish he was around now,
and I like to think he'd be proud of me.
Thanks, man.
I-- I knew this was going to come in handy for something,
but I didn't know what.
Steve Gleason sitting in for Barbara Walters this week.
Rivers, you are an awesome boy or man,
depending on what times in your life
you happen to watch this.
But the world can grind on you.
Do not become obsessive
to the point where you are unhappy.
Let your best stand for what it is.
If it's not sufficient, that's okay.
You did your best. Move on.
We're a grassroot,
pretty much, you know, pro bono kind of things,
volunteers,
that has done in two years
some incredible things.
To live with ALS is hard enough as it is,
but I think to live in the way that Steve is living with it,
you know, to be so out front and public,
uh, there's a lot of sacrifice comes with that,
and I think it's a sacrifice, you know, on your family
and to have your priorities in the right place.
You know, we have to reflect on where we need to be.
I think it's going to be up to Steve,
knowing that all these people want to partner up
with, you know, where he wants to go, in which direction.
I realize that I have pushed us to the point we are right now,
but I think I need to get more into balance.
I am frustrated because I have only written
two or three journals in the past few months.
I am tired. Michel is tired.
I think we, Michel and I, need to pull back quite a lot.
It was like music to our ears because it's like
finally Steve is going to take a step back
and just focus on what really matters,
and that's his health, his relationship with his wife,
and his son Rivers.
I have never wanted to be a saint.
I've never been a saint before Steve.
I'm never going to be a saint.
I don't want to be, like, a devil
or a dick face, but I don't want to be a saint, either.
I just want to be a real person.
One, two, three, go.
[GRUNTS]
[CHATTER]
This is brutal.
Just when we spoke to that doctor a couple of weeks ago,
he's like-- Essentially, you can live as long as you want,
but there's a reason people choose not to
because life is so sucky
that it seems like that they choose,
like, "Hey, this is a better option," you know?
Um, so I think that's what I'm really scared of
is, like, I have a little bit of control over when I die,
maybe, but may-- That might be false,
like maybe not. Maybe there's--
I don't know how it happens, you know,
when people with ALS get to the death point, you know.
Give him a big one.
Give a big-- Is this a salami sandwich?
[PLAY MUNCHING]
I think it's a chicken sandwich.
[PLAY MUNCHING]
[COOING]
I know when we first met when you were able to communicate
very clearly at that time, early in the process,
you were very clear that as things moved forward
you were gonna utilize any available technology
to stay in the game.
Comfortably, with the best quality of life
that you could have.
That I know has been your goal,
but I wanted to revisit that with you.
I have had the opportunity to contemplate my own death
quite thoroughly the past few years.
I say it's an opportunity
because I think understanding one's mortality
can help open a person to lead a more meaningful life.
I fight to stay alive for my son,
for my wife, my friends and family.
I am not giving up.
One of the things that I always admired about him,
it felt that their relationship will continue for a long time,
is that they could tell each other everything and anything.
Honest as could be, truthful,
and that has been lost in the process.
Oh, my God, I can't believe
I just hit the wall
from two nights ago just now.
Why don't you--? Why don't you go--?
Just lay down. We'll be quiet.
I'm working on a masterpiece.
STEVE: And you are planning a bronchial sweep.
Yes. I'm going to look down with a flexible scope
and suck out all that stuff out of your lungs
so that hopefully that sticky sensation that you're feeling
will be gone.
Great.
Well, I am anxious but feel good with you.
Thank you. I appreciate it, okay?
We're going to take good care of you, I promise.
All right. I'm going to head on down
and make sure everything's set to go, okay, buddy?
I'll see you in a little bit, okay?
I promise you we'll take great care of him.
Sorry you have to deal with this.
It's the White Flags, Gleason. Go get 'em.
If for some reason something happens
and you can't understand him, come get us, okay?
We're staying right here, baby.
I'll keep you guys posted.
And we'll take good, good care of him.
It's a hard time because it's all of a sudden
like I don't want to think about how sad it is.
I don't want to think about what we're missing out on.
I don't want to think about myself because it's depressing.
I don't want to think of these things.
It's finished. What's that called?
That's beautiful.
It's called "Commotion of Colors In Motion"?
Yes.
You have to give your--
Ooh. Ooh. Okay.
And that's called "emotoling"--
emotion doodling.
Emotoling. Emotoling?
Emotoling.
Emotional doodling.
Emotionally doodling. Okay.
I like that. Oh.
The dilemma is, ahem,
obviously we want him to live,
and the longer he lives, the harder it'll get.
But-- And-- And for her,
it's realizing that the longer he lives,
the longer she has to deal with this,
so it's just-- It's tough.
RIVERS: What's that?
That's a-- That's a trach and a vent.
Because guess-- Remember what Dad has--
Daddoos has? ALS. Remember?
¶ Happy birthday, dear Rivers ¶
¶ Happy birthday to you ¶
Blow 'em out. [APPLAUSE]
MICHEL: You have to blow harder, Rivers.
[CHATTER]
[CHEERING] Last two.
All right, Rivers.
It's not a yay yet.
He's a chicken.
[LAUGHTER, CHATTER]
I want you to finish strong.
All right. [CHEERING]
[CHATTER]
RIVERS: I got-- Rivers,
did you make any new friends today?
No. I didn't...
Did you play with Goren today, bro?
No! He had fever.
[MICHEL CHUCKLING]
Can you count to October 19th?
One, two, One, two,
three, four-- Three.
Four, five, six, seven.
Oh, one, two, three, four, five, six, seven.
My second reading of "The Little Pea."
I'm excited for the day
when you are teaching me things.
As a father, my goal is for you to be--
To-- To teach you to think for yourself,
and there's a downfall to that
that eventually you'll be thinking things
that are different than things that I think.
In the weirdest way, that's the goal,
but then you don't think the things that I think,
and we have disagreements or debates or, um,
differing opinions.
So my point is that I'm saying now to you
that I am excited for that day,
even if, when that day comes, I'm frustrated.
Okay, tough guy, so what kind of questions
are we going after here?
Four years ago, we had a similar conservation.
What has been the most challenging moment for you
since my diagnosis?
Uh, having to deal with the day that you die.
Well, you asked me.
And I ask myself why--
You know, why did it have to happen to Stephen?
But a simple answer for me is, I mean,
it's the way you played, Stephen.
That's why those coaches loved you--
Because you were just relentless.
We've had a couple on-camera moments
talking about our spiritual beliefs.
Do you feel at peace about that?
I was talking to you about some things,
and you were starting to lose your voice,
and you says, "Dad, don't worry about my soul.
My soul is saved."
And I don't think you could speak that out of your heart
if you didn't really believe
that your soul was saved, Stephen.
So I believe your soul is saved.
If you could go back,
what would change about your philosophy of fatherhood?
Oh, man. Uh, probably being gentler.
Uh, I'm sure I could have worked a little smarter at things.
I think you did well.
Well, thank you.
I think you've taught Rivers
more about love and gentleness and kindness at an early age
than I even knew about.
But it's pretty cool to watch how you sing to him
on that, uh, computer
and get him in your legs and he rolls around with you
and you say bedtime stories to him,
and it's pretty awesome, Stephen.
Rivers feels all of that in his heart.
Some day he'll walk through that Saints locker room,
and he'll see your picture
on that picture Hall of Fame for the Saints,
and, you know, he'll walk to the stadium
and see his dad's statue, and, you know.
I just hope he doesn't feel
like he has to try to accomplish as much as you.
All I know is that you wouldn't put
that kind of pressure on him.
RIVERS: Go! One, two, three.
¶ A year from now ¶
¶ We'll all be gone ¶
Hold this. Come on.
All right, Dad, let's do it.
¶ And they're going to bed... ¶
[LAUGHTER]
Go! Say "Go, Daddoos, go."
Go, Daddoo, go!
¶ My friends will be gone ¶
I think his main purpose now is,
you know, being a dad for Rivers,
the best dad that he can be.
¶ Nothing is as it has been ¶
¶ And I miss your face like hell ¶
I've lost a little bit of the happiness and light
that was a big part of my personality,
and I'm trying to find a place where I can get that back
because I think it's important because it's a big part of me.
I think of having a show at some point.
That's way out of my comfort zone,
and I'm, uh, I'm not there quite yet.
Yeah. Being an artist is just, like,
kind of complicated.
Luckily, I'm not an artist.
I think I'm better than last year,
and so next year might be even better.
But this is a motherfucker.
That's that. I'm still pretty funny.
[VOCALIZING]
Go!
Whee! Whoo!
WOMAN: The Steve Gleason Act is now the law of the land.
Word came down tonight that President Obama
signed the bill into law today.
The Steve Gleason Act will give immediate relief
for patients who have been denied access
to speech generating devices,
and it will ensure that eye tracking technologies
are covered under Medicare and Medicaid
for ALS patients.
¶ Rivers and roads ¶
We've gone from a family member who has ALS
to now almost a hero-slash-poster person
who started a movement,
and the movement is its own entity now,
and it's strong, so it's taken its own life,
and I think that's probably as critical as anything.
¶ Rivers and roads... ¶
STEVE: Fundraisers and all that stuff--
Really none of that is as important
as this right here.
That's all that matters
is me passing myself to you.
Here's a memory from my high school years.
How to build a campfire.
Dating. Obstacles.
Trying to give you everything that I can.
Even if I'm not present physically,
you'll have this,
and I feel so much better
when I just sit down and share myself with you.
¶ Rivers till I reach you ¶
Because that's what dads do.
They pass stuff on, the best of themselves,
to their kids.
¶ Rivers and roads, rivers and roads ¶
¶ Rivers till I reach you ¶
¶ Rivers and roads ¶
Out.
¶ Rivers till I reach you ¶
All right.
Test, test, test.
Test.
Rolling.
It's right in the middle of the state--
That's your mom, dude.
What the hell. That was awesome.
She's a piece of work, I tell you what.
When I feel something strong enough,
it takes over my head, and I had to just say it.
I had to say "Steve, I had a dream that I liked you,
and I think-- I think that I like you."
¶ ...for hundreds of miles ¶
Boo!
This is me giving you a hug.
Just...
Making these videos is my hug.
¶ ...down on his knees ¶
¶ Oh, life came crashing unofficially down... ¶
Unfortunately, this is real life.
It's not a movie, so,
I'm trying to make it as hunky dory as possible.
But I think sometimes real life gets in the way.
[VOCALIZING]
[SCREAMING]
My thoughts for you
and tattoos' remembrance is this.
Do not get it of your girlfriend's name.
Or your wife, for that matter.
Hey.
Or your wife. But your mom's,
you can get one of your mom's if you want to.
And I do believe that in five years
I'll look back on this video and say "Wow,
"that was the beginning of, you know, this journey
that has turned out so much for the better in my life."
¶ And he still gives his love ¶
¶ He just gives it away ¶
¶ The love he receives ¶
¶ Is the love that is saved ¶
I just want to say
I feel like I'm exploding on the inside.
I love you so much, man,
and, um, that's a great thing,
and I hope, uh,
you love me as much as I love you,
but it's impossible.
I think even better is I hope
you love your children
as much as I love you.