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English Script Request

graceoconnor
Incomplete
by Diablofire 0:00:00 - 0:00:57

Man: Um. So um, one of the, uh, weird things about me is, I actually don't, um, I... it's pretty rarely that I cry out of sadness. I generally get teary-eyed when... out of inspiration. And I remember definitely crying the first time I saw that.

Umm, and I was actually... uh, that was actually not filmed at this year's (???Life as we Will??) but the previous year. And was ineff... actually, if you want to catch the rest of the... the episode, or see her actual talk, that's available online. But actually had not... had missed her talk in 2015. So, um, thought... so, watch the video, um... but thought even better, why not bring her to the Zappos. So, please welcome Claire.

by Unsounderfiddle 0:00:57 - 0:03:29

1:07:

"Hello! Thank you, thank you...is this working? Yes? Can you hear me? I have, like, this constant re-occuring nightmare. I don't have very many nightmares. But the one that I do have is that my mic [microphone] isn't on...and that I get up on stage and I do the best talk that I've ever done in my entire life and no-one can hear me, and then no-one gives me any feedback afterwards, and I'm like "oh my god, I must have been horrible, and then it just turns on [she meant to say 'turns out'] that my mic wasn't on.

Um, so hi, everyone, uh, yeah, this is exciting. Um...so, a few things before the actual talk. One: I fully decided that next time I do a talk I'm going to get a jumper, it's gonna have ruffles, and I'm going to steal his sequined jacket because that looks so cool on stage. Like, my peasant dress, it looks like I'm supposed to be, like, milking a cow. It does not compare in the slightest to the sequined jacket. Uh, so you know, just heads up, anyone, in case anyone wants to buy me a sequined jacket. And then the second thing is, I'm so incredibly honored to be here, and to be speaking for you guys, it's amazing because it's a whole year ago that I did that talk, um, and so it's so cool how things have come full-circle like this, and it's an honor, and thank you for having me, and for hearing me, um, even though you guys had no idea I was even going to be here, so, thank you.

Um, so, ah, as uh, as the video so stated, my name is Claire Wineland, I'm nineteen (19) years old now, and I have always...another year down! Um, hopefully another to go. We'll see. Um, but I have always had a strong relationship with death, and with dying. When I was born, my life expectancy was ten (10) years old. And then it moved to thirteen (13), and then it moved to sixteen (16), and then nineteen (19) and now it's in the twenties (20s) somewhere, who knows, maybe twenty-five (25), I'm hoping we get past twenty-one (21). Like I just wanna [want to], I just wanna go clubbing once, like that's it. I don't ask for much in life. Um...sorry, mom, if you're watching this.

by Unsounderfiddle 0:03:29 - 0:05:13

So my death has always been a huge part of my life, and something I have always had to deal with, and that's because I have cystic fibrosis. CF is a genetic disease, meaning I was born with it, and it causes an overload of mucus to accumulate in the body. So, it's like thick, sticky tar, built up in your lungs and in your sinus and in your pancreas, and it causes a whole host of issues, some of them being organ malfunction, long hospital stays...I've spent around a quarter of my life in the hospital. Fifty (50) somewhat medications, four (4) hours of breathing treatments a day, countless surgeries, I mean like thirty-five (35) at this point, and the biggest thing is that it's progressive, so as I get older, CF gets worse and it gets harder and harder to do what you need to do to stay alive. And I'm not telling you any of this to depress you or to bring down the mood, or to make you feel sorry for me. I'm saying this to prove a point. And the point is that I have lived a life of a lot of pain, and I'm not pretending that I haven't. I've had to deal with death, I've had to deal with painful surgeries, I've had to deal with being alone and scared in the hospital. But I have had a beautiful life, and one that I'm so incredibly proud of, and that is not in spite of having CF, that's because of it. So, how is that possible? What is it about the way that we view society, the way that society view illness, where it tells us that someone who's [who is] sick, can't live a beautiful, full, rich life

by Jbou 0:05:13 - 7:12

Why do we have that notion? Because for me, I was raised...I mean, ever since the time I could walk and crawl and draw and communicate with people, I was living my dream, and having fun and being a kid. And everyone I ever met in my entire life would come up to me and say, "Oh I'm so...I'm so sorry. I'm so sorry you're sick." You know, they'd get down, you know how people do? They get down on, like, on kid's levels..."I'm so sorry"....Um....And I remember thinking, I mean "Is this person really happy? Is that what happiness looks like?"

So I'm going to start with a story. Um, When I was around...(let's) say seven (7)....I always, I guesstimate here because like, you know, everything under ten (10) is a blur, so we're going to say seven (7). Um, and I was in the hospital, and I was scared and I was alone and I was flipping through an HGTV Home and Gardens catalog, as...a seven (7) year old does. Because I was obsessed with HGTV and I still am. I'd watch all those like, you know, those like under ten (10) dollar or under a hundred (100) dollar, like, home makeovers, that was the coolest thing ever! And so there I was in my hospital room, and I was feeling so separate from the world. So separate from humanity. I felt like i was in this bubble, like I could never live a normal life, like I'd never be a part of humanity. And so, I'm flipping through this catalog, and there's a picture of this gorgeous New York loft apartment. Right? With the big windows, and the, and the, you know, the day bed, and a sheepskin on the floor, and the whole shebang, and I'm thinking, "I want to be there. That's the kind of life that I want for myself." But I couldn't. I was in a hospital room and I was sick. But I looked around the room and I realized, "Hey. I've got four (4) walls. I've got a window. I've got a bed. I have a bedside table. Why don't I try and decorate this? Why don't I try to make this feel like home?"

by Sput 7:12 - 10:02

So I called up my parents and I asked them to go shopping for me at Target, because I didn't have any money, I was 7. So they got me tube lights and throw pillows and sheep skins and whatever I wanted, because they're great parents. Thanks Mum. And I decked up my hospital - and I don't mean just a little bit, I mean I had IVs in my arm, tubes on my face, like my heart rate going crazy and I was like, pushing the bed up against the wall and like, dragging the chair and making a day bed. And once it was done, people from all over the hospital came to see it. Like, the doctors, the nurses, Peter from interventional radiology... like, everybody came coming to see the hospital room because it was different... it felt like home. And there was a tiny part of my brain that wondered while that was going on, after I had made this room feel so special and great... I wondered, "Why isn't this normal? Why don't we do this to all of our hospitals?"

So then years went on and I kept decorating rooms, kept being a total freak. And then 13 came along... and as you all sadly saw with the sad music, two days after my 13th birthday I went into a routine surgery and I got a blood infection. And it attacked the weakest part of my body which was my lungs. So I went into full-on lung failure. And I was on a ventilator and that didn't work. Which, think about... if any of you... at least the girls... have watched Gray's Anatomy, or ER, or House... you know ventilators are the thing that keeps you breathing when you're on your deathbed, and that didn't work for me. So they put me on something called an oscillator, and no-one with cystic fibrosis had ever been on a oscillator and come off alive. So when I went on that, the doctors had to tell my parents, "She has a 1% chance of surviving." And through that whole experience, people from my entire life - everyone, my family and parents had ever known, came out to support them. To give- bring snacks, and wet wipes, and those weird little dry toothbrush thingies that you can use, where you just pop the toothpaste. And help them, you know, pay for their rent. And their bills, where they couldn't be at work because they had to be with me.

So when I came out of the coma, which I obviously did... I'm sadly not a ghost talking to you... that would be cool. When I came out of the coma in the months that I was recovering, I couldn't even pick up a fork, I couldn't hold a spoon, I couldn't walk 35 feet. It was some of the most painful and hard times in my entire life. And yet through that experience I realized other CF families don't have the support that we had.

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