"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:" "SteveGleasonhaswhatevery collegefootballcoach is looking for in a linebacker." "MAN 2:" "Really,reallyfast." "Really,reallyaggressive." "MAN 3:" "Hemaybe small butnoonecan 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." "Malereporter:" "Therearereports fromNewOrleans ofpeopletrapped inbuildings thathavecomedown aroundthem." "TheSuperdomebecameasymbol offailureanddespair." "20,000refugeeslivedhere foronemiserableweek withoutpower,water, orsanitation." "[CROWD CHEERING]" "Femalereporter:" "Abeautifulday, andanunbelievablescene hereinside theLouisianaSuperdome." "[MEN SHOUTING, CHANTING]" "Who are we?" "Saints!" "Are we ready?" "[BARKING]" "New Orleans!" "[BARKING]" "[CROWD CHEERING]" "Man:" "Amomentalmostunimaginable 13monthsagoishere ." "Lookout!" "Rightthrough!" "Apickoffby SteveGleason!" "Andscore!" "Touchdown!" "NewOrleans!" "Andforthosepeoplewholook totheNewOrleansSaints as something that will upliftthem,upliftthiscity , uplift the entire Gulf Region, they'vejusthadit!" "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 Christianwoman inthedevil'sland¶" "¶Shelearnedthe language andshelearnedtofight¶" "¶Butsheneverlearnedhow tobeatthelonelynights¶" "¶ In Lonesome Dove ¶" "¶Lonesomedove¶" "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." "ButwhenImet him , hewasperfect." "Ithoughthe wasthe greatest thingI 'veevermet." "Helivedin asmallhouse anddidn'thaveaTV  anddroveatruckandwas differentthanSouthernboys, andhelovedto, like, adventuretravel." "Ilikedto travel atthetimetoo ." "Hewasthissuperheroathlete butalsosupersmart." "He was the best of both worlds, let's say." "Withthekindofperson thatSteveis , 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." "Shewasalwayshavingfun." "IsMichelreally gonnasettledown?" "IsMichelgonnahavekids ?" "Noway." "That'snotgonnahappen." "STEVE:" "No, you gotta try again." "Watch your hams." "Asuniqueas Steveis,  Michelisequallyasunique, 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'mverythankfulfor all that hascometo me through thiscity." "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." "AndI justwaslike, there'sno" "There'snoway." "He'stellingme this, butI don'tnecessarily believewhathe 'ssaying." "Although this is part of the challenge, like, yeah, I wanna beat ALS," "Iwantto winthatpart  ofthegame," "Butforme ,thebiggest partofthegameis beating all the other shit that youandIhavetalkedabout 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." "Itwasn'tabig enoughreason nottohaveababy 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 thanhaving afatherwho'saround for30or 50 or 60 years ofyourlife." "Now,I hopethathappenstoo,  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." "Forthefirsttime, youdon'twanttorealize thatthisis thetruth." "And in those moments you realize it's the truth, and, like, this is fucking happening to my husband." "This is happening." "STEVE:" "Ithinkthebig questionis, "Whyisthishappening?"" "Youknow,me andMichel aresogoodtogether." "We'resoperfect, beingreallygoodpeople." "SoI keptasking overandoveragain," ""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,Iunderstand¶" "¶Thateverylifemust end¶" "¶Uh,huh¶" "MICHEL:" "Hell, yeah!" "Hell, yeah!" "Halleluiah!" "MICHEL:" "Yahoo!" "¶Uh,huh¶" "¶Oh,I'maluckyman¶" "¶Tocountonboth hands¶" "¶TheonesIlove ¶" "¶Somefolksjusthave 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." "¶Holdme tillIdie¶" "¶ 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." "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." "Hewasareader, prettycerebral." "Hewasn'tan introvert,but he wasmoreon thequietside ," "Icanrememberhewas about6 yearsold, andI hadhiminthebackyard." "Hewasat thefarthestend ofthelotinthebackyard." "IboughthimaWiffleball anda bat." "Isaid, "Keepyoureyeontheball,  andwatchtheballhit thebat."" "SoI tossedit to him." "Firsttimehe swungthe bat ." "He hit the ball over the house." "Andwe'retalking plasticWiffleball." "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." "SoI didn'treallyhave anexampleof howafather shouldbe." "SoI wasjustdoing thebestIcoulddo." "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" "Andthingsweren'tright betweenyourmomand I" "Thatyoucantakeallthat frustrationouton thefield." "Anditwasagreatway foryouto 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." "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 ¶" "¶ It's the end of my pain as I know it ¶" "¶ 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." "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:" "Itwasasurpriseappearance bySteveGleason." "His first appearance on camera sincegoingpublic thathehadbeendiagnosed withALS." "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 tobeso goodatsomething thatpeopleadmireyou ." "But I think it could be dangerous if that becomes obsessive." "AndI certainlystruggled withthatwhenIretired." "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:" "WhenI wouldplayfootball, duringgames,Iwouldhave  thisfearof walking ontothefootballfield." "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."" "Atthesametime, Ithinkthat thatthoughtandmaybe theactionsthatfollowedit, sometimes I think that's-- That might be why" "I have ended up where I am right now." "AndnowIthinkaboutit, andI don'twanttodie." "[CROWD CHEERING]" "[CROWD CHANTING] WHO-DAT?" "!" "WHO-DAT?" "!" "WHO-DAT?" "!" "WHO-DAT?" "!" "WHO-DAT SAY DE GONNA BEAT DEM SAINTS?" "!" "MAN:" "Sofornow, Gleason'sgoalsareclear." "Liveeachdaytothefullest 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,thenIthink,uh, that'spartof 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,fortheformation..." "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,thatis howlaboris." "It'snotbacklabor." "Doyouhaveany fluidscoming outatall?" "I just had a tiny little thing of pink this morning." "Okay." "You'rein labor!" "Julie, but we don't know yet, so I don't want to be one of those people" "Yeah,I know." "Okay?" "Sarah'ssittingrighthere andshe'slike" ""She'shavingababy."" "You'rehavingthebabytoday." "Steve,areyouready?" "No choice." "[JULIELAUGHING]" "Nochoice." "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'swhatyou  namedhim,Rivers?" "Yep." "What'shismiddlename?" "Varisco." "Oh." "Justlikeher lastname ." "[LAUGHING]" "RiversVariscoGleason." "Rivers." "[LAUGHING]" "Allright." "[LAUGHING]" "Soareyouat thehospital?" "Oh, yeah, dude." "Dad, we had the baby, like, half an hour ago." "Halfanhourago ." "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 ratherthanusingpronouns." "Uh,I 'mscared." "Wedon'tknow whatthehellwe'redoing." "Anyhow,thebigthingis," "I'mwritingabunchabout what the word and the name, and" "Andwhatrivers actuallymeanto me ." "Icameup withthis severalyearsago, butI decidedthatrivers arethesourceoffire ." "Here'smylogic." "Afireburnswood asitsfuel, andthiswood comesfromatree thatdrinksfromthe rivers, andso,uh ,therivers arethefuelfor the fire." "And, uh, you are the rivers... for my fire." "[VanMorrison's "CrazyLove"playing]" "¶I canhear herheartbeat¶" "¶Forathousandmiles¶" "¶Andtheheavensopen ¶" "¶Everytimeshe smiles¶" "¶AndwhenIcome toher¶" "¶That'swhereIbelong¶" "¶YetI'mrunningtoher¶" "¶Likeariver'ssong ¶" "¶Shegivemelove , love,love,love¶" "¶Crazylove¶" "¶Shegivemelove , love,love,love¶" "¶Crazylove¶" "¶Shegivemelove , love,love,love¶" "¶Crazylove¶" "¶Shegivemelove , love,love,love¶" "¶Crazylove¶" "¶Shegivemelove , love,love,love¶" "¶Shegivemecrazy¶" "¶Shedrivesme alittlecrazy¶" "[INDISTINCTDIALOG]" "[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 'sMelanie, andI amhere withJimEutizzi, and then, um, a couple people that I work with." "MICHEL:" "Oh,okay." "Howarey'alldoin'today?" "Good." "I'm here with my husband Steve, and our baby Rivers." "Andwe'vegota,uh--  Amessageto giveJim ." "[BABY BABBLING]" "That was from Rivers." "That was hello from Rivers." "And from us, uh, we wanted to let Jim know, well,askhimif he'dliketo ,uh" "Togoto Italywithhisson, becausewe'vealready boughthimtickets for about 12 days in June." "Here are your tickets." "[SOBBING]" "Okay, Michel." "Well, does he want to go or not?" "MELANIE:" "Youwantto go ,right?" "Oh, God." "I don't know what to say." "Thatisso awesome, Melanie." "[INDISTINCTDIALOG]" "Idon'tknowwhattosay." "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'smybeliefthat 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:" "Youloseyourvoice whenyouhaveALS ." "And so he found-- He researched this place where you can actually, um, voice bank, sohismechanicalvoice, insteadofbeinglike StephenHawking, hisisgonnabehisvoice ." "Senator Russ Feingold of Wisconsin also took himself out of the running." "[¶¶¶]" "Thenitgoesto eyetechnology 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:" "HiMichel,yourock." "[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'vebeenthinkingabout fathersandsons alotsinceyou 'vebeenborn ." "And... atthispointitlookslike we'renotgoingtohave  thenormalfather-son relationship." "Ican'tgo outand playcatch withyou." "Ican'tthrowyou  abattingpractice." "But,uh,Iwanttodo  everythingI can tobeagoodfather,uh, togiveyouwhatason needs  fromhisfather." "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'scrazy,man." "Iamto thepointwhere" "Ibarelygo outofthehouse  bymyself." "Michelgoes everywherewithme now." "Shehelpsme shower." "Shehelpsme  putonmy clothes." "Shehelpsme 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'swhatwedo, it's" " It's just kind of, like, partofourlife, likethisis-- Thisiswhatitis." "SoI setup thingsfor him  inthemorning," "Isetup thingsfor him  atnight, helphimwalk, helphimbrushhis teeth, help him-- Help feed him, and it's" "It'sjustkindoflike  anewpartoflife ." "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:" "Kidsarealot of frickin'work,man." "And,uh,we getup everythreehours tofeedyou, andwhenIsay we" "ImeanMichel." "You like that?" "AndI canseeit's takinga tollon Michel." "She'sgettingtired." "AndI 'mgonna thinkofwaysto, uh- " "Tohelpher, eitherhavingsomeone stayoverat night, orsomething,we gotta figureoutsomething becauseI 'dliketo somehow easethat,uh ,burden" "alittlebitfromher." "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." "Turnedout,youknow, hewasdatingMichel, andMichelusedto baby-sitmeas akid ." "Whenhewasdiagnosed sheaskedme" "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'stimeswhere Stevewouldsay, whatamIdoing?" "What'sthepoint?" "This is awful." "And we'd be like, okay, like, what can we do?" "Doa dance,buildhim 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]" "¶HowlonghaveIknown you, brother?" "¶" "¶Hundredsof lives, thousandsofyears¶" "I feel like, in many ways, I'm fulfilling my purpose." "Ifeelexcitedeveryday togetup and" "And make adifferenceandanimpact onpeople'slife." "IfeellikeI'veputtogether agoodteamofpeople tohelptakecareofme ." "Um,I 'veputtogether agoodteamofpeople tolookforsolutions." "People will say, "Oh, it's such asad,tragicstory."" "It is sad, and so they're right, but it's not all sad." "Ithinkthereismore  inmyfuturethaninmy 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'salmost nothingmorepersonalthan afather-sonrelationship, youknow." "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,mydadand I,I think, believea lotof  thesamethings, 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." "SomeALSpatients willhavetheprocedure, and they will not progress any further." "MICHEL:" "Wespentlotsoftime  inthehospital." "Like, just sitting there, so I needed to do something so I just started drawing." "WhenI wasdrawing, Icouldcompletelyignore anydoctorsthatcamein, oranybodywhocamein thatI didn'twant totalkto ." "I just completely can zone out." "He wants us to call an ambulance." "Ask him if we should." "Ask him if we should." "BLAIR:" "Afterthatsurgery, there was definitely an adverse effect, andhewasinsuch  alargeamountofpain ," "hewasconvincedthat hewasgonnadie ." "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:" ""OnMonday, September25,2006," ""SteveGleason wasresponsiblefor" ""oneofthemost dramaticmoments" ""inNewOrleansSaints history." ""Heblockedapunt inthefirstquarter" ""oftheteam'sreturn totheSuperdome" ""followinghurricaneKatrina." ""That blocked punt, that season," ""symbolized the rebirth of the city of New Orleans."" "Amen." "[APPLAUSE]" "Yesterday,aboutfiveminutes after I got home" "I pooped all over myself and my wheelchair." "AndI thinkit 'scrazy that I can go from peoplesaying, "You'remyhero,"" "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." "Afewweeksago ." "That's so cool." "ThissetupIhave costs$ 6,000, butotherscost20k ." "[MOANS]" "[BABBLING] [MOANS]" "Alligator." "Mom." "Alligator." "I love him." "Ah." "Daddy." "[LAUGHING]" "Say it again, bud." "Daddy." "Daddy." "Daddy." "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." "¶WhenI'mwiser¶" "¶Andgrowingtaller¶" "¶I willseeyourway¶" "¶WhenI'vecometothe¶" "¶PlacesI'mgoin'¶" "¶I willknowyourways ¶" "¶Oooh¶" "¶Ooh,ooh,ooh ¶" "¶Ooh,ooh¶" "¶Ooh,ooh,ooh ¶" "¶I canfeelithurt now¶" "¶I canturnthispain plain¶" "¶Tryandsee itclear¶" "¶ButIdon 'tknow whyit'shere¶" "No!" "Whoa." "¶Youcankeep thesounddown¶" "¶Aslongasyouwantnow¶" "¶Dude,yeah¶" "¶Youcanpushiton another¶" "¶Damn,thatman 's yourbrother¶" "Oh-oh." "¶WhenI'mwiser¶" "¶Andgrowingtaller¶" "¶I willseeyoureyes ¶" "¶WhenI'mwiser¶" "[LAUGHING]" "¶Andgrowingtaller¶" "¶I willseeyoureyes ¶" "¶WhenI'vecometo theplacesI'vebeen¶" "¶I willknow¶" "MICHEL:" "Yay!" "[RIVERS SHOUTING]" "[VOICESONTV ]" "I wasn't sleeping at night because I was caretaking for Steve." "[VOICESONTV 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." "[TVcontinues]" "Atsomepoint putRiverson my lap." "Atsomepoint putRiverson 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 anddealing withthissituation justtakesallofherenergy." "Istillthink she'stryingherbest todoas much asshecanfor people andespeciallyforRivers andSteveandher 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 onTVor somespeeches or some Tweets, versus, like, the reality of the hardness it is to maintain relationships when you can't move orhelpor 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:" "Tonightthefederal governmentissayingno tosomedevicesthatgive  peoplewithdisabilities avoiceliterally." "MAN:" "Recentchanges toMedicareandMedicaid havelimited ALSpatientsaccess tospeechgenerationdevices." "Team Gleason became one of the only entities that was giving these speech devices, sothepeople thatcouldn'taffordit throughMedicareanymore stillwantedto communicate, andwewantedthemtobe  abletocommunicate," "sowejuststartedfulfilling allofourrequests, which meant it was 2 and 3 and 400,000 a month." "Wewereabletofill  everyrequest thatpeopleaskedofus." "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:" "FormerSaintsteamcaptain SteveGleason andhisfoundation organizeda GleasonGras, amusiccelebration atChampionSquare toraisemoney andawarenessaboutALS ." "When I say "Gleason," you say "Gras."" "Gleason!" "CROWD:" "Gras!" "Gleason!" "Gras!" "MAN:" "Thousandsgathered tocelebrate theinspiringeffort ofoneman." "You've changed my life." "You're so great." "We went up to Washington and met with the Secretary oftheDepartmentofHealth andHumanServices and pled our case." "Wehopeto passthislaw,  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'sputtingtoomuch 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:" "Thisisthemost significantachievement forTeamGleasontodate ." "[CHEERING]" "What's going on here, Rivers?" "See all the cameras?" "You like it in here?" "VOICE SIMULATOR:" "Hey,Vavoom,whatyou doing?" "Whatyoudoing?" "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 andbelike," ""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'simportantto me  thatwedo Riverssandwich andnosekisseverynight, Michel." "That'stheonlyphysicaltime  Igetwithhim all day ." "Okay." "Youtried toskipit tonight." "Okay." "And you took" " Okay." "Thanks." "Thanks." "You're welcome." "I didn't mean it stupid." "I just didn't think about it." "Are you okay, Mick?" "Great." "Yeah." "Shit." "Areyouokay?" "Yep." "Ifeellikeyou haveno compassiontowardsme ." "Everythingisrushed." "Youalwayshave somewhereelseto be ." "Youfinishmy sentences." "Yourushanycare thatyougiveme." "Idon'tunderstand whatI didto deserveit." "Pleasetellme  howI canimprove." "Youwalkedby me  tentimestonight whileRivers wasonmy lap." "Itriedto get yourattention." "Youdidn't evenlookat me ." "Sorry." "I don't think it's anything you can improve." "I think it's how I can improve." "Doyoufeelangry whenyouarewithme?" "Um..." "No." "I feel more angry with myself, for how I feel in general." "WhatcanIdotobe  moreimportantto you?" "I don't know." "Ifyouwanttotalk-- Youdon'thaveto,  butifyouwantto, Iwilllisten." "Thank you, buddy." "[PLAYING GUITAR]" "MICHEL:" "That's my favorite song." "MAN:" "Your favorite song is "Come Back"?" "[CHATTER]" "ImustsayIhave done some  amazingstuffin my life, butthisexperiencewas  rightatthetop ofthelist." "IjustinterviewedPearlJam ontheirlatestalbum." "Themusic youguyshavecreated hasplasteredthewall ofmyadolescent andadultlife." "Iwantto thankyou  forproviding thesignificantportion ofthesoundtrack formylife." "Ihavemy sonRivers." "Iamassemblingavideo journallibraryforhim  incasetheexpertsare rightaboutmy timedlife." "Youdidnotknowyour dad." "Whatareacoupleofthings youwishyouknewabouthim?" "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,youare anawesomeboyorman,  dependingonwhattimes inyourlife" "youhappento watchthis." "Buttheworld cangrindon you." "Donotbecomeobsessive tothepoint whereyouareunhappy." "Letyourbeststand forwhatit is ." "Ifit'snotsufficient, that'sokay." "Youdidyourbest." "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 comeswiththat," "and I think it's a sacrifice, youknow,on yourfamily 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 tothepointweareright now, butI thinkIneed togetmoreintobalance." "Iamfrustrated becauseI haveonlywritten twoorthreejournals inthepastfew months." "Iamtired." "Michelistired ." "Ithinkwe ,Micheland I, needtopullbackquitealot." "It was like music to our ears becauseit'slike 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 wanttobe asaint,either." "I just want to be a real person." "One, two, three, go." "[GRUNTS]" "[CHATTER]" "Thisisbrutal." "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 tocontemplatemy owndeath quite thoroughly thepastfewyears." "Isayit 'san opportunity becauseI thinkunderstanding one'smortality canhelpopenaperson to lead a more meaningful life." "Ifightto stayalive formyson, formywife,myfriends andfamily." "Iamnotgivingup." "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:" "Andyouareplanning abronchialsweep." "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 butfeelgoodwithyou." "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 withthis." "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, didyoumakeany  newfriendstoday?" "No." "I didn't..." "Didyouplay withGorentoday,bro ?" "No!" "He had fever." "[MICHEL CHUCKLING]" "Canyoucount toOctober19th?" "One, two, One,two, three, four-- Three." "Four, five, six, seven." "Oh, one, two, three, four, five, six, seven." "Mysecondreading of" TheLittlePea."" "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?" "Fouryearsago,wehad asimilarconservation." "Whathasbeenthe most challengingmomentforyou  sincemydiagnosis?" "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'vehadacouple on-cameramoments talkingabout ourspiritualbeliefs." "Doyoufeelatpeace aboutthat?" "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." "Ifyoucouldgoback , whatwouldchangeaboutyour  philosophyoffatherhood?" "Oh, man." "Uh, probably being gentler." "Uh, I'm sure I could have worked a little smarter at things." "Ithinkyoudid 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'llallbegone ¶" "Hold this." "Come on." "All right, Dad, let's do it." "¶Andthey're goingtobed...¶" "[LAUGHTER]" "Go!" "Say "Go, Daddoos, go."" "Go, Daddoo, go!" "¶Myfriendswillbegone¶" "I think his main purpose now is, you know, being a dad for Rivers, the best dad that he can be." "¶Nothingis as it hasbeen¶" "¶AndImissyour face  likehell¶" "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:" "TheSteveGleasonAct is nowthelawoftheland." "Wordcamedowntonight thatPresidentObama signedthebill intolawtoday." "TheSteveGleasonAct  willgiveimmediaterelief forpatientswhohave beendeniedaccess tospeechgeneratingdevices, anditwillensurethat  eyetrackingtechnologies arecoveredunder MedicareandMedicaid forALSpatients." "¶Riversandroads¶" "¶Riversandroads¶" "We've gone from a family member who has ALS to now almost a hero-slash-poster person whostartedamovement, andthemovement isitsownentitynow,  and it's strong, so it's taken its own life," "and I think that's probably as critical as anything." "¶Riversandroads...¶" "STEVE:" "Fundraisers andallthatstuff" "Really none of that is as important as this right here." "That'sallthatmatters 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'llhavethis, andI feelso muchbetter when I just sit down and share myself with you." "¶RiverstillIreachyou¶" "Because that's what dads do." "They pass stuff on, the best of themselves, to their kids." "¶Riversandroads, riversandroads¶" "¶RiverstillIreachyou¶" "¶Riversandroads¶" "Out." "¶RiverstillIreachyou¶" "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."" "¶...forhundredsofmiles¶" "Boo!" "This is me giving you a hug." "Just..." "Making these videos is my hug." "¶...downon hisknees¶" "¶Oh,lifecamecrashing unofficiallydown...¶" "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,youknow,thisjourney that has turned out so much for the better in my life."" "¶Andhe still giveshislove¶" "¶Hejustgivesitaway¶" "¶ The love he receives ¶" "¶Isthelovethat issaved ¶" "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."