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Meet Claire, Finding Beauty in the Sadness | My Last Days

October 1, 2019


– Oh my God okay, I could
film actually walking out of the hospital or else that would look really really really bad. This is the full plan, you ready? Getting in an Uber, go
to downtown Los Angeles, go see the Bernie Sanders rally, cheer, and all the way back to Long Beach before anyone notices I’m gone. I’ve been in the hospital
for around a week and my friend Alisa texted me and said, “Oh my God, do you know
that Bernie Sanders is in L.A. Doing a rally?” And I’ve been watching like,
following his little tour throughout the United States. Then of course, he happens to
be in L.A. for the first time while I’m in the hospital. In the last like year,
she’s become really, really involved in politics. So when she heard Bernie’s platform, the things that he stands
for, she just is in love. – [Claire] Well I got there
and ended up going to a section that was like right by the freaking stage and I was crazy. – [Bernie] Want to thank
you for being here tonight! – And then I got to into the back and I had a moment where
I was like, they’re not… No, I’m not meeting Bernie Sanders, like that would be stupid. Oh my God, I’m gonna beet Bernie Sanders. – How ya doing? – [Woman] Oh my goodness! – Apparently I acted cool. This is my cool. – Oh that cool, okay. – This is me toning it down. I told him that I snuck
out of the hospital room and unhooked my IVs and
took an Uber all the way downtown to see his rally. I think that that meant a lot to him. He got really sweet and
he kissed me on the cheek. That was incredibly
exciting and now I can say that I have met two of
my old white men idols. Is this my favorite thing? No! My favorite thing is my oxygen. I’m so addicted to peach
juice, it’s so bad. Hey, do you guys want to… It is almost… Like slept all day. So I’m dying. Faster then everyone else. Action! My name is Claire Wineland,
I am 19 years old, I’m living with something
called cystic fibrosis. Doctors say I have around
a year left to life. But that doesn’t really
matter to me because death is inevitable, but living a
life that we are proud of, that is something we can actually control. – When Claire was born,
we didn’t know that there was a problem until the very last night. Melissa was late, they
said well let’s just check the amniotic fluid to make
sure that everything’s cool. They did an ultrasound and all
of a sudden we saw a problem. – The doctor looked at
the ultrasound and he had that look on his face. He goes, “I’ll be right back.” Ge walked out of the
room and I’m like, what? Just this fear. So they come back and they said well, there’s something going on with the baby and we recommend that you know,
we induce labor immediately and get her out and see
exactly what is going on. – So up to that time, we had no idea that there
was an issue, we had no idea. – You know when I saw her
and how her body looked and how she did look so, you know like she needed some help. She was really sick. She looked like E.T. basically. She’s like, she had this
huge belly and she was just these really beautiful
eyelashes and beautiful eyes, but her intestines burst and
she had a cyst in her abdomen and they had to go in
and operate right then. The first of many moments
like that, you know. – What’s up! Welcome to my room. 228 is where it’s at! Okay first, you have
my brick that I painted and I really kind of
want some credit for it because that was a lot of time and energy in painting those bricks. Over here you have my piano
for when I want to jam out and annoy all the nurses. I got my twinkle lights
and my beautiful planets on the wall here. I just totally forgot to paint Mars, so the science community
is going to disown me, but there you go. This is a wall of just collage. You have pictures of my family and me. Then here you have my
lovely meditation guru with all the chakras. So if you look, I have have
all of the actual life support. This is the ventilation
bags and stuff that, you need in a hospital, but of course, I want my room to look nice. I was running Zyvox. Well, we just need to to
flush and have like… Yeah sure yeah, yeah you run it at 20. But we also taking out the needle cause we’re changing
it today, it’s Tuesday. Thank you. Thank you love. Oh you haven’t seen the half of it. I have to know everything
that’s going on with my body and what’s going into it and how I’m taking care of it
and who’s doing what to it. Like, it’s the only way that
I can be okay with this life is if I’m in control of
what’s going on to my body. Many of you are probably
wondering what is with the oxygen. I do not have cancer. I am not that girl from the Bates Motel, even though yes, she does
have cystic fibrosis. CF, in layman’s terms, causes an overload of
snot to form in your body. Sexy right? – So I get a lot of
questions, like people say, oh I saw a picture of your sister. She has something up
her nose, what is that? So I try to explain it and
then by the time I say like, cystic fibrosis, genetic disorder, they just sort of lose interest. – Basically, you have more
salt in your cells than your body needs, so it
makes everything thicker. – So what normally people with
cystic fibrosis succumb to is lung infection, chronic
lung infection because there’s a lot of thick,
sticky mucous in the lungs. – Last few years and we
have been told a few times, things are pretty dire. – She’s in end stage
lung disease right now. They told us last year
that she has two years based on the severity of
the damage in her lungs as well as you know, her
pancreas disfunction, her digestions. It’s hard for her to gain weight. There are a lot of factors
that they take into account. So last year they told us two years. – She’s known that death is there. We’ve had to have a
relationship with death. – I think that Claire, as a little girl, was always really grateful for
every single thing she did. So she was always, I’m lucky
to be going to kindergarten. I’m so excited we’re going to first grade because you know, everything
was milestone for her. Five years ago, it was the
day after her 13th birthday. She was in the hospital
and we sprung her out to have a party . We returned her to the
hospital and the next morning was the surgery. – It was not a total easy
surgery, but it was routine. So she did it and we
assumed everything was fine. – Then two days later, my
lungs went into full on lung failure and I couldn’t breathe and I didn’t know why I couldn’t breathe. There’s a part of my brain
that’s like oh, I’m dying. It was such a strange realization to me because I’d always been
told that was gonna happen. The moment it’s happening, you’re like oh, well that was fast. Like, that was weird, like okay. Then later, as the lung
failure progressed, then it started to become terrifying. Less so because I realized
I was dying and more so just because I couldn’t breathe. – Next thing you know we were
in the intensive care unit. Everything they were
trying wasn’t working. You know, there’s no words to describe how much panic I felt. Her mother and I were just like, shock. She was healthy-ish, for
Claire, a couple days earlier. I guess it just goes to show
you how fragile this all is. – They came to us with the decision. They said we can put
her on this oscillator, but we can’t promise you that we can get her off of it again. Children with cystic
fibrosis with this intense lung damage don’t make
it off of an oscillator. – When they put me on the oscillator, it was kind of like well
no one has ever come off of this alive before, so you
know, you’re not gonna be, you know, like this is kind of fit. – I didn’t think I was
gonna get to see her again. So I kept talking to her. I remember right before
they intubated her, she looked at me, she was
like, what is going on. Cause she was just so confused. And I said, you’re really sick, but they’re gonna try and make you better and you have to just relax and trust and then I didn’t talk
to her again for 17 days. – When Mom told me that
she was going into a coma it was weird cause I didn’t really think that it would get that bad and it felt like wow, she really has it. Like, I didn’t think that
that would happen and it was just shocking I guess. – Something happened in the coma. Like something changed. She went from just being a
great kid with a good spirit and all of a sudden there
was an old soulness to her that hadn’t been there before. There was an acceptance
in here where look, this is where I’m at you know. I may not make it or I may or
I may make it for five years, or ten years or whatever, but I’m totally on the
ride and I’m going to love it and enjoy it as much as I can. – Anything else I can get you? We can get this pole out of the way. – Yeah! Brookley! Oh my God your overalls! See if you can see what
planet I’m missing. – [Brookley] Pluto or? No, okay hold on. – Pluto’s a dwarf planet Brookley. Don’t hit a sick kid. – I didn’t hit you. – It’s not weird at
all that you don’t know because I totally missed it. – Mars? – Neither are Mars.
– So Mars is missing? – Mars is missing. I was like in this haze
of must make room perfect. Oh thank you. Oh sorry, don’t mind me. I’ve had such a weirdly cool five years. Literally, from the age
of 13 to 18, right now, I have been in a coma and almost died. I broke at a 1% chance of surviving. Started a foundation. Started a whole YouTube channel
that went viral and insane and gone to high school
and got really good grades and had fun and had my rebellion phase. You gotta think, the only
thing that we’re told when you have an illness
is oh I’m so sorry. That’s it! That’s from everybody
who you will ever talk to in your entire life is
oh wow, I’m so sorry. Like, oh your life must be horrible. Like those exact words
over and over and over and over again. That gets to cemented
in your consciousness. Like what kind of a weird belief is that? – I think the only problem
being Claire’s friend is that I’m squeamish. She has to stab herself
every time I sleep over. My favorite is when she’s coughing and I just talk over it. – Yeah, no, she like hacking up lungs. – She just like bending
over and I just continue what I’m saying except with
little pauses when I think her coughing is too loud. I think other people
give me weird looks like, she’s dying over here! – I remember…
– She does it all the time! – We joke about her dying
all the time because we could actually handle the fact that… – Yeah, exactly. – It’s making light of the situation. – Most 18 year olds do
not have to deal with what I have to deal with specifically. No. But everyone has to deal
with their own pain. The absolute truth is that
I don’t think the pain that I’ve been through is any more severe than the pain that any other
individual has been through. It might be more physical, but I also have had the
incredible gift of having people in my life who genuinely love me. That’s given me so much
mental stability and strength. We have to realize that we’re
a part of something bigger. What happens in the world,
what happens in our society very literally, a part of us
because we are so influenced by it and it is so influenced by us and yet we love to live in a
bubble and we love to pretend like things that happen
to us are individual and choices we make are individual and you know, we’re
separate from the whole. So we can’t put ourselves in
a bubble and we can’t detach from the world that we live in. Got, you got it? – Yeah I got it, I got all your stuff. – Ever since I was pregnant with Claire, I think she’s felt like she has a mission. I really do. I feel like she has this drive in her that has beat the odd so many times. I think she just needs
to share the message of what it’s like to be blessed with life. She’s like the kid that
sings it from the rooftop. – So I’ve always loved the
idea of being a public speaker and I used to, when I was younger, every time we were at a
family dinner or something I’d force them to sit down
and listen to me talk. I’d get dressed up and I’d stand and I’d do like long, monologues. All right. – [Woman] Wow this is boring. – Are you filming?
– Yes! – I was the most annoying
child on the face of the Earth. Not much has changed. Thank you. So I always wanted to be a public speaker but I never really had the structure. I never really had anyone to
teach me how to stay on track, to give me the actual lessons behind it. Everyone’s just kind of like, no just go out there and wing it you know. That only takes you so
far, it is an art form. I think you have to have
a certain discipline for an art form to really
make the art special and make it something that’s worth while. This is what I have to do every day when I want to upload stuff. It took me the longest
time to figure out how to do any of this, because
as much as I love Youtubing and talking to people, I don’t know anything about technology. I am not hip at all with
technology, like a granny. So learning how to do any of this took me the longest time. Strangely enough, the most
common question I get asked is can I wear your oxygen tube. I’ve always wanted to
show people what it’s like in the hospital. Do you know how many times
I’ve dropped this camera? ♪ Mama take this blind ♪ Why don’t people get to
see this kind of other side of the hospital that’s so like hidden? Then I got into YouTube
and I just started doing it and just started talking about my life. ♪ Mama take this badge off of me ♪ I’ve always love the idea
of like bringing life into places that don’t, like that people don’t
think life really exists. For me, the hospital has always
been a great representation of that because to me, it’s
this beautiful, magical, wonderful, like heavy
place where I get healed and all my friends are at. To the rest of the world
it’s like living hell. I spend my favorite
moments, my entire life, have been when I was in the hospital and my dad and I are singing
and I’m scarfing down Indian food and I’m looking at the sunset and it’s like. It’s wonderful. It’s not wonderful like
in spite of it being a hospital room, it’s wonderful
and it’s a hospital room. Like you know? There is life everywhere. ♪ Knock knock knocking on heaven’s door ♪ – Claire my dear, how ya feeling? – I’m good if I’m just
chillin’ and laying down. – I have a tiny surprise for you. Richard? This is my friend Richard Green. – Hi Richard Green. – Richard is one of the
world’s leading experts in public speaking. Princess Diana. – Oh my gosh! – Global leaders and he
has offered to help you craft speech and work on
your speaking so that you can make a bigger difference in the world. – Yes, this is very cool! – So I saw a few minutes
of you on YouTube. – Oh no!
– What are you doing? Just from even the first few seconds, I could tell that you
are destined to impact and change the world. Public speaking, great public speaking, is nothing more than having a
conversation from your heart, something you do all the time you speak. Number two, about something that you are authentically passionate
about in order to help another person, help a group of people, or help the world. So you are exactly that. That’s how you’ve lived
your life, which is why it’s so natural for you and
you’re not afraid of it. – Out of everything, out of
like all the different things that I want to do, cause
there’s always so much going on, that’s the one thing that
hasn’t changed in years. Like ever since I first did it, like that’s something I want to do. – She’s mind blowing. It’s impossible to not be effected when interacting with her. What is the thing that
you want kids or adults to walk out of a Claire speech
thinking, feeling, doing? – Okay I want them to have a
moment of like, of clarity. Realizing that they actually
have power in their happiness, in the way that their
life goes and whether they’re happy with it or not. – To hear the thoughts, the perspective, the understanding that she has of life, is a gift to the world. I just pray that she’s around long enough to be able to give that
gift in its fullness. If she only has a year, then
I’m really really motivated to help her make the most of that. Well it would be my honor to
support you in doing that. You’re awesome, you are amazing. – Oh my gosh, you’re awesome, wow! Bye. Whoa! I have the immense honor of
being coached by Richard, which is great but at the
same time, incredibly annoying because he is forcing
me to actually do it. It’s like when you realize
oh I’m actually gonna be doing public speaking with my life, cause it’s always been this
very like far out dream and I just did it for
fun because I loved it and now it’s real. There’s a part of me
that’s terrified about that because what if I really
don’t have something to say? Like what if I really don’t have anything that’s going to help people? – Okay, I’m gonna sit
with you for one second. I’m actually gonna com and be on camera. – Oh no.
– Yeah. You didn’t do anything wrong. – Okay, are you sure?
– You’re fantastic. So, what are you doing tomorrow? – Tomorrow? Nothing. – I’m speaking at this
really cool festival, it’s called Life is Beautiful. The whole idea is celebrating life. But here’s the thing, I
want you to go because I want you next year to be
speaking at this festival. – But like really? – Like really.
– This’ll be fun. I know! – You’re in?
– I’m so in yeah. I’m so down. – Part two of the interview.
– Okay. ♪ Leave me out with the waste ♪ ♪ This is why ♪ ♪ What I do is the wrong ♪ ♪ Can a space to be ♪ ♪ Thinking of you ♪ ♪ It’s the wrong time ♪ ♪ But she’s put me through ♪ ♪ It’s a small crime ♪ ♪ But I got more excuses ♪ ♪ The right yeah ♪ ♪ Give my gun away when it’s loaded ♪ ♪ It’s all right ♪ ♪ If you don’t shoot it ♪ ♪ I’m supposed to hold it ♪ ♪ It’s all right ♪ ♪ I give my gun away when it’s loaded ♪ ♪ It’s all right is that all right ♪ ♪ With you ♪ My earliest memory of
really feeling healthy was when I was I’d say,
maybe five years old. My Dad taught me how to dive under waves and go down and grab the sand. So I’d go down and I’d flop
over and watch the wave go over me. I could hold my breath forever down there. Yeah, that was when I
felt really independent was when I was in the ocean. – A couple years ago, it was
like oh yeah, she’ll be fine. Then just last year,
it just sort of hit me and it was weird. I kept saying that oh in two
years she might not be here, stuff like that. I know. No. – I’m sorry baby. – You know I really wanted that iPod. – I’m sorry baby.
– It’s okay. – I’ve never seen you cry about it before. – Living with you’re
gonna be dying next year, you’re gonna be dying in another year, it really does change your
perspective on the day and it gives you a lot of gratitude. So if someone were to say, all right, now you’re gonna
live forever, now what? She’s probably be uh oh, what
am I gonna do with my life? I think she felt having a shorter life, she wanted to do more with it. I can understand that. Although, I want her to
be healed and live forever and have a normal happy life, but it’d be a big
transitions for all of us. – I’ve never left myself think like that. Like, I never let myself be like, yeah, there’s gonna be a cure. And to be honest with
you, the thought of living a normal life if just as
terrifying, if not more so, as the thought of dying
in being sick forever. Because I know sickness. I know this life very well. I’ve never thought about bills
and jobs and any of that. So as wonderful as the
thought of a cure is, just because it means
that I can live longer, I can experience more of the world, it’s also terrifying cause
I’ve never let myself think that way. – Her history is littered with
there’s no hope conversations right, and then something
happens and then here we are four, five, six years later. I’ve realized that I don’t
know what’s gonna happen with Claire but I would never trade in a healthy Claire for
the Claire that I have. I honor the Claire that I have
and I would never do that. I don’t think she would either. – Ladies and gentlemen, Life is Beautiful, please welcome Justin Maldoni! – Hey guys! What a cool festival this
is, life is beautiful. So I had this interesting day yesterday. I was hanging out with a friend of mine, she’s really wonderful, talented, smart, beautiful, witty and she just happens to be dying. We were in the car and I
was driving her somewhere, and she was talking and I was
listening and I got a text. I look at her and I look at my text and I know what the text is
about and it’s kind of urgent but I don’t want to just not say anything, so I pick up my phone
and I kind of do this. And she smiled, like
this big beautiful smile and it shot to my heart because
I realized in that moment I was taking her time. She was choosing to give me her time and I was taking it from her. I actually fell into like
a little mini depression for the rest of the day. I was so grateful for this talk because it reminded me of why I do what I do. So I have a little surprise for you guys, Claire is actually here tonight. Come here, come here, come here. Come up. So um, one of my favorite
things in the world to do is surprise people. I had to figure out a way to get you here but you want to change the world, well, this is your speech. Ladies and gentlemen, Claire Wineland. – Okay hi wow. Okay, hi. As you all saw, my name
is Claire Wineland. I’m 18 years old, I have
something called cystic fibrosis. I do have only a few years left to live. I mean, that’s how the doctors see it. Let’s get the whole like
death thing just like, out on the table here right? Like all of us could get
hit by a meteorite now, so let’s stop thinking
about the death part of it because that doesn’t matter to me. We have no control over
it, but what we do have control over is whether we
are proud of our own lives. I mean, that’s something
we have complete say over. – It’s kind of hard to even describe. I feel really blessed. I’ve had the most remarkable
experience of fatherhood that anybody could ever imagine. We’ve had these sublime
moments and I’ve seen grow into this incredibly
beautiful, generous woman. – I think I’m just as
confused as everyone else on how to make our lives a piece of art but I think that part of
the joy is simply trying. – I know I wouldn’t be the
man that I am without her and I’m just excited
for what’s next for her cause I think that she’s got a lot longer than the doctors say and I think she’s got angels all around her. She’s just getting started. – I can stand up here and
tell you I am genuinely proud of my life. I am so proud to be alive. Not saying that I don’t feel pain. I’m not saying that I don’t
feel sadness and suffering and loneliness, because
that’s what it means to be a human being, but I’m
saying that that pain and that loneliness and
that sadness is beautiful. – I think that people
see in her this light I think that she was born with. Claire Lucia means clear light. And I really think that
that embodies who she is. She’s very real and I think
some of these great things that are happening are
because she relates to people on a different level. – We live in a society
that benefits off of us continuously looking
for happiness and dreams and goals out here right? If we say no, we’re not
gonna go looking out there for our happiness, we are
live, and that is all we need, we are beating the system right? And we’re living lives
that we’re proud of. We’re living lives that make us happy. – I think the biggest
thing Claire has taught me is stay in the moment. She sees me worry about things. She sees me talk to the
doctors and it gets heavy and I get scared she’s
like, right this minute, it’s awesome, we’re here together. Like where are you? Like she helps me bring my
head back to right this second. I’m like, oh you’re right. We haven’t gotten there yet. Right this second is great. Right this second is beautiful. – You’re never gonna be
happy with what you get unless you’re happy with what you have. And that’s what you have
to do with your life. You have to look at all of it. All of the pain, all of the loneliness, all of the beauty, all the friendship, and the family and you know, and the sickness and the health and you have to lay it all in front of you and you have to say okay,
this is what I have, it’s all wonderful and
what can I make with it.

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