Claire Wineland – TRANSCRIPT
So, the first talk I ever did was a TEDx, funny enough, and I was 14 years old, and I was scared shitless. Like, I could piss my pants. I had bought this little ruffly white Target dress that I was super excited for because I was, like, 14, and I remember getting up on stage, and it’s the first and only talk in my entire career of doing speaking that I ever planned – like, that I wrote down, I don’t plan talks, I’m actually a really horrible person.
And I’m probably a nightmare for planners of these kinds of events to deal with because I don’t ever do speech outlines, I don’t even really have titles, I just made up a title for this completely randomly. So anyway, I get up on stage, and my hands start getting all clammy, and I start feeling I’m going to vomit, and it doesn’t go away. For the entire talk, I’m sitting there saying everything I recited, and I’m terrified. But for some reason, after that talk, I got a call to do another one, and then another one, and I just kept doing them, and I still didn’t really know why I’m doing them.
So that’s the intro story to the main talk. Anyway, when I first started doing talks when I was 14, my talks were pretty simple: they’re my life experience, they’re my story, and in my defense, it is kind of a cool interesting story – I say that completely subjectively. I was born with something called cystic fibrosis, which is the genetic disease that causes an overload of mucus to accumulate in your body, which is disgusting, and also doesn’t seem that terrifying until you really start to think that mucus is in every single of your body and covering every single organ. So it slowly causes your organs to malfunction and fail as you get older and older.
Now, I know that I’m deceptive, and you would think for me coming up here being all smiles and giggles and, like, jokes, this might be a talk about how to be happy, and how to choose joy in your life, and how to be okay. But I’m not here to tell you that CF isn’t hard, I’m not here to tell you it’s not painful as fuck. CF is really hard and it will always be hard. It’s around four to five hours a day of breathing treatments. Imagine having to brush your teeth four to five hours a day, you would go completely crazy. It’s around 50 medications, over 30 surgeries in my life, and a good quarter of my life spent in the hospital. So it’s hard and it’s painful.
And that’s not even the hardest part. The hardest part about CF is the guilt that comes of it. Because whether or not you survive, whether or not you’re okay, day to day, whether or not you can breathe and walk around and have communication and connection with people is based off of how well you take care of yourself. Whether you do your treatments well, whether you take your pills. And when you’re a kid that guilt is crippling, and it follows you your entire life.
Because every time I ended up in a hospital, anytime I was sick at all, I felt like it was my fault. And I felt, like, whether my parents would be sad, and I might one day die, because cystic fibrosis has a very short life expectancy – it’s terminal. When I was born, my life expectancy was around ten years old, then it moved to 16 and 18 and 19, now mid-20s – I’m 20 right now, you can do the math – and every single time, I’d see my parents feel heartbroken, I feel like it was my fault. And that’s what’s hard about CF.
So I’m not here, and I do not do these talks, to say that it’s a walk in a park and to say that you have to just be happy in spite of it. It’s hard and it’s painful. I do these talks to make a point. I do these talks to make a point that you can have a painful life, you can suffer, you can experience what it’s like to feel like a human being, all those messy and gross emotions, and yet you can make a life for yourself that you’re very, very proud of. And that’s why I kept saying yes to talks. Not because I wanted to talk on stage for long periods of time. Like, I want to do that because I feel like my only gift in life is blabbering – I laugh at it because it’s too true – but because I wanted to share the fact that you can suffer and be okay.
You can suffer and still make something. That the quality of your life isn’t determined by whether you’re healthy or sick or rich or poor, not at all, it’s determined by what you make out of your experience as a human being, out of the embarrassing moments and the painful moments. It’s what you make and what you give from that place.
So when I was a little girl – and it’s funny, I was talking about it just with a friend in the car on the way here – but when I was a little girl, I was confused, deeply confused, because there was no one in my life that I aspired to be like. There was no one I knew that was sick, that was also interesting, that was doing something with their lives, that was making or contributing things. Sure there was like the occasional person with like no arms and legs, you know, doing inspirational talks on how you could achieve anything in life, which was good, that was a good starting place, but there was no one who outlived their illness, who contributed something in the world just based off of their brain, on their intellect, on who they were as a person.