English Script Request

Alright, well first of all, let me say I'm not going to sound anywhere as smart as the person that just went before me. I'm going to try my hardest. I don't have all those big words. But my name is Claire Wineland, I'm 14 years old and I have an illness called cystic fibrosis.

I, I could get into all the genetics of it, but I will totally bore you if I do. So, as a result of it, though, I've had 25 surgeries; I've been hospitalized around 25% of my life -- a thousand days -- give or take.

I have FD (flutter device) treatments four to five times a day just to keep myself from coughing my head off.

And my life expectancy when I was born wasn't really past 18 years old.

And, um, really, in general, you know, my life has been ... my life! And I have always learned how to deal with it. And I can, I know that everyone when I explain all the things that I have been through in my life, it probably sounds like, "oh, poor girl ... you know, I'm so sorry she's had to go through all this."

But that's kind of what I want to explain to all you guys today is that I don't want you to feel "poor girl with oxide intake." I want to be able to touch you in a way that other people can't, because I want to be able to explain the other side of a challenge, or the other side of a problem.

So really my life began when I was, you know, a baby, of course, and I think this is how -- hey look, there it is! I'm a cute baby up there.

So when I was younger, you know, growing up with an illness is always a challenge, but it was never a challenge in the way, you know, people think it would be.

I had fun like every other kid. To me, I am every other kid in my eyes. But it was never "every other kid" in anyone else's eyes. You know I was always, you know, "Oh, poor girl can't go to school like every one else or can't run like everyone else -- you must feel miserable."

But I never did feel miserable. I felt perfectly fine and I loved my life.

But, you know, over time the weirdest thing happened is I started to feel inadequate in a way because I didn't feel miserable. Like there was some weird joy in feeling miserable that I was, like, left out on? And, you know, I didn't understand it.

But, of course, I wasn't a Pollyanna -- I still got frustrated with treatments, with pills.

You know, it was, it was my life -- whether it was good or bad in the ups and downs.

And um, you know, when you're really, when you are growing up with any kind of illness, you learn to have fun with it, because there is no way you're going to get a toddler to sit down and do treatments for two hours a day when, you know, you don't have fun with it.

So my, my entire family has helped me learn these awesome ways to have fun with it. One of the things I do is called, "the vest," which looks something like this -- so it looks something like the thing over me and it basically shakes. You know how, uh, Howie Day was doing the weird voice thingy-ma-bobber? It sounds like that, except faster. And it breaks up the mucus off the sides of the walls and helps me cough up mucus, basically.

And so we used to do something called vest art where I take markers in my hands and squeeze them together on the side and just kind of start shaking and it turns out something like this (I just put paper in front of me) although this is years of like motor skills with my hands. It looks a lot better now than it did when I was five years old.

Ah, but the whole point of it is life is always fun and always ended up being fine, you know.

But I never understood why other people couldn't really understand that I was happy and that I was fine.

So, I, you know I kind of over time I've learned to accept people as, you know, "I'm so sorry," and kind of just let it roll off my shoulders, you know.

But I found out, you know, in other cultures and in other, um you know, religions, having an illness was actually considered a blessing -- not only as a problem, or a challenge, or as an adversity. It's considered a, kind of a message from your higher power or an open door and the actual, the actual translation for "problem" was, um, empowering situation.

So I had my very own little empowering situation like a year ago. Um, and I went to a regular surgery and I came out and I had blood sepsis attack the weakest part of my body which at that point was my lungs.

And I went into lung failure. I was on a ventilator at first. That didn't work, so they put me on an oscillator which is like a ventilator on steroids and, you know, and I was in a coma for two weeks.

And when I came out of it, you know I had -- the doctor said I had a one percent chance of living and no kid with cystic fibrosis had ever come off of an oscillator and stayed alive before.

So it's very cool to come out of it and really to see all the people that had kind of come out of the woodwork and come out from my past life and kind of support me in a way. And that was really -- I mean I got messages from people in Fiji and people in, um, in, ah, Israel saying that they were praying for me.

Oh, you know, I forgot to change to a clip -- that was me in a coma. And um, just don't tell the others that.

So, um, you know, it was, it was a very empowering situation!

And I kind of learned so much from it and then from there ended up going to Alaska as a kind of a dream trip. This must be, you know, a chill, beautiful scenery, you know ... and it ended up being this crazy impactful like adventure. I got to have dinner with a senator. I got to fly in a U.S. helicopter. I got to do so much awesome things I never thought I could do.

And I, that kind of what inspired me to help other kids with CF kind of travel.

So my foundation [??? name of organization ???] kind of started off as, ah, helping kids travel and helping kids kind of see the world who have CF, cuz it's a pain in the bottom sometimes, I've got to admit -- getting all of medical stuff on the plane.

But you know it kind of grew into so much more than just helping kids travel. It kind of grew into this crazy helping kids with everything. You know, because cystic fibrosis is actually the number one genetic illness in the world and there is no government funding for it, at all.

So, as a result, all of the funding from people kind of goes to the cure. Which is awesome, but there is nothing for now -- like there's nothing to help kids or families dealing with it right now.

So that's what we kind of want to do. Let them know that their life is not ruined because of an illness. It actually can make it even more rich and fulfilling and beautiful.

And that's what my whole life has kind of been about -- is trying to help other people understand truly how rich having a problem can make your life.

There's this awesome saying that I love that you will never truly get what you want until you want what you have. And, you know, at first, I didn't really like that saying because I'm like, "wait -- no, no, no -- I don't want what I have -- you know you want to have more! Right? You don't like want what you have. That's like messed up.

But when you start thinking about it, when you ... no matter what you have, you're always going to be wanting to have something more. It's kind of human nature.

Sorry -- one sec -- [cough] ... hairball.

So you're always going [laughter] you're always going to really, really kind of want something more, cuz that's just the way we are.

So to be able to enjoy what you have, and love what you have, and grow from it is such a gift.

And to not label things as being good or bad. And everyone always has labeled an illness or a problem as being a negative thing, or a bad thing.

But what if it's not? What if it's the exact opposite.

You know what if people, you know, hundreds of years ago in those other cultures were right? What if it is this awesome empowering situation from God, you know?

And so, I kind of -- you know I just totally forgot to like skip all through the pictures of Alaska -- so anyway ... and uh, everything. So, uh, I'm like kind of behind on this. Just forget about the pictures. Just hear my words.

Um, so throughout everything, at, you know at the end, coming to -- catching up with the whole past of my life till now, I'm really trying to help people understand that their problems -- and it doesn't have to be an illness -- it can be, ah, you know, paying your bills or wanting a house, or wanting money, or wanting health in general.

And how the difference between just wanting -- for me it's always been wanting a cure -- but I didn't really realize why I wanted a cure.

And I started to think about it. It wasn't because I just -- oh, yeah -- you know I want a cure because I want a cure, or I want to be healthy because I want to be healthy. I want, you know, a big house because I want a big house. It's why do you want it? What will it give you that makes you so much happier?

And when you start to think about that, you start to think about the things that you want and how you can get them with what you have. And work with what you have already and just make that even more empowering and amazing.

And I um, I went to the beach earlier today just kind of like to clear my head, cuz I was totally stressing out about this thing. And I was, you know, I was in the water and I was just kind of feeling the ebb and flow of everything and it really made me realize how beautiful life is.

And the surgeon earlier today was, um, talking about cherishing life and I thought, "you know it's so true, people tend to get discouraged when they have problems or things to overcome.

When really that's the part to cherish life the most. You know that's when you get to like get the most out of every second of your life.

So, if you take anything from my little talk, it's to cherish every second and make the best out of what you have. And sometimes the best out of what you have is the best.

So thank you.

[applause]

Man's voice: "Let's see here -- Claire, you know here I think we want to see your slides. I think the world wants to see your slides. Let's just have you take the world, because the world is out there watching this live -- I actually heard from someone who knows that there are people in Italy watching this right now. I don't know if they are awake, but at least at one point I think they were ...

Claire: Well I think they say Italy; people in Italy; live the longest, right? Apparently, what we learned today? So you'll take this with you the longest.

Alright, so this is me as a baby. Actually, at the time I was, um, I was going through this crazy like panting phase where I couldn't stop panting for like two weeks. My lungs were doing some crazy stuff and you know, I truly didn't care. I was kind of happy and up sitting laughing.

And this is me doing my best, obviously.

And, um, this was the best art.

This is me in the coma, which -- we got very few pictures of the coma cuz we didn't want to kind of jinx it in a way. Didn't want to be like, "Yeah! Let's take pictures!"

Oh, darn ... you know.

So -- but that was one of the few ones we had.

And then this was when we got to Sitka, Alaska.

This was flying in a biplane over Alaska, uh, to the beautiful island of Baranof, know as it was called.

And, um, [cough] this as I was doing a flash mob. We kind of did it to kick-start our foundation. I had a whole part in my Wales page about that; totally blanked out.

But, nonetheless, we -- it ended up being so cool because all the people that kind of came to support me during the coma kind of came back and helped with the flash mobs. It was a very cool, ah, way to kick-start our foundation.

Um, and then this is it: "You will never really get what you want until you really want what you have."

And that's it!

[applause]

Man's voice: Thank you.

Claire: Thank you.