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.
So I felt like there is no one that I could aspire to be like.
There’s nothing for me to be. And the thing is when you’re sick and when you’re young, you can treat it so strangely. People meet you and the first thing they say is “I’m so sorry for you.” And that starts to lodge in the back of your brain. You start to feel like maybe there’s something wrong with me. Maybe I’m not living a good life. Maybe my life is just innately not as good as everyone else’s. Maybe I can’t contribute something into the world because I genuinely, like, am not capable of it. Maybe that’s why there’s not people who are sick contributing beautiful things. Because it’s not possible.
And then someone – it was actually my boyfriend at the time, but I was very little, so let’s say it was my friend that I held hands with – gave me a Stephen Hawking’s book. And I was blown away. It was the coolest thing ever. I remember reading about how suns form every single elements that exists inside their furnace. So how every single atom that makes up you and me was formed in the belly of a sun. And then that sun went, one day, and it died, and it collapsed, and from it formed a black hole. And by that logic, if you think about it, every single atom that makes up your body has a corresponding black hole some place out in the universe, as like a shadow of your creation. And I was just enthralled! I thought Stephen Hawking was so cool! Right? And I’m like 11, at the time.
So I went and I checked out a book about Stephen Hawking from the library because I’m technologically challenged, I’m technologically handicapped more so than I’m physically handicapped, which is really saying something. So I got a book on Stephen Hawking, and that when I realized and I learned that he was like me. He didn’t have CF, but he had a horrendously frustrating disease, where his body was completely failing around him. And yet here he was as someone who had contributed something incredible to humanity, to society. And he was my first role model.
So something strange happened around that time in my life, age when I was around 12, where I started questioning everything. I started questioning why I was doing treatments? Why I was even living? Why was I doing any of this? It was so incredibly hard, it takes so much work just to be alive. And what was it for? I was desperately looking for something to grab onto. Something to give, something to contribute, so that I felt like my life had some worth, had some meaning, that I wasn’t just surviving just to survive.
And then something really crazy happened. I went on for a routine surgery when I was 13 years old, and I got blood sepsis, which is an infection in your blood, and it attacked the weakest part of my body, which was my lungs. So I went into full-on lung failure. I ended up being in a coma for three weeks, barely, barely surviving. I flatlined once in an elevator, which is a horrendous place to flatline. Talk about crippling fear of elevators for the rest of your freaking life, like, “I’m never going to get over that.” Died in an elevator, it’s just – I’ve an elevator in my apartment that I’ve to use because of bad lungs, and every single time, I’m like, “Why couldn’t I have died in the hallway going to the elevator?” That would have been better. I was in a coma for three weeks, and I had a one percent chance of surviving. I was on something called an oscillator, and no one in medical history with cystic fibrosis had ever been on an oscillator and survived – ever.
So they thought that was kind of the end for me. But I did come out of it and I did survive, and it was due to so much incredible support coming out from my family, coming out from the wood works to help me survive and help me get through that. But when I did come out of it I realized that kind of support doesn’t exist for other people with CF. In fact, cystic fibrosis is an incredibly isolating disease. People with CF can’t actually be in the same room together. And neither can their parents without doing a full biohazard suit, literally. So it’s an incredibly isolating disease.
And on top of that, going flashing forwards to what I told you before from when I was a kid, it’s a lot of time and energy, a lot of hospital stays. So parents of children with cystic fibrosis end up having to take off long periods of work to be able to actually be with their kids while they’re dying in the hospital. And they don’t have a support system because all the money that gets raised for cystic fibrosis goes directly to finding a cure, not to helping people with their day-to-day life.
So all of a sudden, there was this need that I saw and that my parents saw. That we actually could help other people with cystic fibrosis. We could give something to them. Something that would genuinely help them through their experience. And thus the Claire’s Place Foundation was born. So flash-forward six years to now, it is been the craziest six years any teenager could ever dream of. I became the head of a non-profit that grew and grew and grew every single year.
And just last month, we were able to help this girl with cystic fibrosis who was homeless and was going from shelter to shelter with her medical equipment and didn’t have any support. We’re able to find her a apartment and get her discharged from the hospital into her new apartment. Which is just so cool, it’s so cool that it’s my job. Anyway, and on top of that I was doing all this public speaking, I was going to travel, and I was getting to share my story, and I started doing YouTube, and I started sharing my experience there, and I started having people from all over and all walks of life ask for my help on life and life advice, which is weird because I feel like I’m such a mess. I’m like, “I don’t know. Have you showered today?”
So anyway, flash forward to my 18th birthday, and I rented out this toy Thai restaurant, which is my favorite restaurant in LA because I love Thai food because it’s all carbs. I just eat, literally, like a vat of brown rice and potatoes and like more bread on top of that, and then, it’s like my favorite meal ever. So we’re sitting there at this huge table, a toy Thai with everyone I love around because I wasn’t supposed to make it to 18 – I wasn’t even really supposed to make it to 16, so 18, it’s like crazy. 20 is even crazier. And everyone I love is there, I get hit out of no nowhere with this realization that I became the person that little me would have been inspired by. That I became someone – I never cry… I’m just so emotional. That I became the person who wasn’t denying their illness, wasn’t saying I hadn’t suffered, I was taking my experience and I was giving something, I was doing something. I was living a life that I was proud of and that little me could have been proud of. And that’s all that we can have in life.
Because the truth is it’s not about being happy. Right? Life isn’t about just trying to be happy. Honestly, happiness is a dopamine reaction in the brain. Like, if I was to say here and tell you all to just be happy, I’d say go smoke a joint and listen to Bob Marley and call it a day. We don’t need any of this TEDx stuff, you know? Life isn’t about being happy, life is a rollercoaster of crazy emotions. One second you’re fine, and the next second you feel lonely and despair and like nothing is ever going to be okay again. It’s not about emotions, it’s not about how you feel second to second, it’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’re giving. Because that’s so much more impactful, so much deeper than whether you’re happy or content or joyful. It’s okay to feel pain.
In fact, if you can actually experience it, without judgment, without, you know, trying to fix anything. Nothing is wrong with any of you. Nothing is wrong with me. I don’t care that I’m sick at all, genuinely. If a cure came tomorrow, I wouldn’t care because that has not determined the quality of my life. I’m not trying to fix myself. My suffering has given me so much, and I have been able to make something and give something to people from it.
So now I’m going to go off on a completely random note, to finish this, because if Claire Wineland is good at anything, it is blabbering about random subjects. So, the title of my talk was “Dionysus, the rising and dying god,” or maybe it was the dying and rising god, who knows. Dionysus is a Greek god that I stumbled upon recently while researching writing my book. And he’s the God of fermentation and harvest. Right? So he initially brought with him wine, and here’s the funny story: when wine was originally given to people, they believed they had been poisoned. They thought that it was a curse from the gods because they have done something wrong. And it’s because no one knew what it felt like to be drunk. Everyone thought that they had been poisoned and they were slowly dying.
So they prayed to God to get rid of this poison. They’d do better, they’d be better people, “Please save me from this curse.” And as the years went on and they realized they weren’t dying from it, they realized in fact it was kind of fun, they started to praise wine as one of the biggest gifts ever given to humanity. And when you think about what wine is, how it comes about, it’s from fermentation, it’s from rot. Fermentation is literal rot of food and of grapes and whatever. And yet the biggest gift that we could ever imagine came from it. So we started to praise Dionysus as giving us this beautiful gift. And the reason I bring this up is because it’s very similar to the way that people see sickness.
We view it as a curse because we don’t understand. We view it as a curse in the gods because we haven’t come to appreciate our own human suffering. But if we wait long enough, and if we enjoy it and if we go through life and try and make something of ourselves, maybe one day we can realize it’s actually a gift. Thank you very much. I have five seconds left on the clock. Wohooh!
