Claire Wineland, now 21, on the true human experience
By Jeff Ayers — / Death Wish Coffee Blog
***UPDATE: JULY 9, 2018***
Claire has been accepted into the program to eventually get a lung transplant, which could save her life and help her continue to save others. But she needs our help. She has a Go Fund Me that is raising money to help her and her family with the immense costs of going through the surgery and recovery, and every donation helps.
You can head there now at https://www.gofundme.com/teamclaire and check out the video below of this amazing woman asking for help in her time of need. We love Claire and wish her nothing but the best as she gets closer to getting new lungs.
ORIGINAL POST: APRIL 10
Today, April 10, 2018, is Claire Wineland's 21st birthday. Claire was diagnosed with cystic fibrosis at birth and told she wouldn't live to see too many birthdays. But she didn't focus solely on her own mortality staring her in the face. Instead, she chose to focus on everything life has to offer — the true human experience.
Claire is an accomplished public speaker, entrepreneur, and author. At the age of 13, after her lungs failed and she was placed in a medically induced coma (which she miraculously pulled out of), she and her family created Claire's Place Foundation. This non-profit organization offers assistance and aid to families dealing with the costly bills and extended hospital stays that come with battling cystic fibrosis.
We got the chance to talk with Claire on our podcast, Fueled By Death Cast, about her outlook on life, her organization, and her infectious spirit. Here is a small excerpt from the episode, but I encourage you to listen to the whole interview here.
So what got you started making videos with your Clarity Project and giving advice on death? As a grown-ass man, it is some of the best advice I've ever heard.
So at family dinners and stuff I'd get everyone to be quiet, and I'd put on shows. I liked sharing stories and talking about the experience. And as I grew up with CF, I started to realize that the way in which sick people are actually represented, and talked about in society, is really gross. It's really degrading in a way ... And I think it's hard to see if you're not someone that has lived with it.
Ever since I was little, I've grown up around people who are completely healthy who meet me and feel immense pity, tell me they're sorry, and put all of their shame, and their guilt, and their sadness onto me —and say that they're sorry that I must be living such a hard life.
Meanwhile, I'm over there, from my hospital room just having the time of my life. Listen to music, doing art, whatever. Feeling like life is great. And so, it kind of starts to have this effect on you, where you believe what people say. You just start feeling you should be miserable because you're sick.
So I got to a point where I just realized that people who are sick are very dehumanized. People don't see them as full, complex beings with wide ranges of emotions, life experience and valid things to share with the world ... So I thought, "Hey, maybe that's a good place for me to kinda try and humanize people who are sick, and to make them more three-dimensional, and talk about the things that don't normally get talked about."
The truth is, the reason people are so weird around people who are sick, and the reason none of us really feel comfortable, and none of us really know what to say, is because no one talks about it. No one shares their experience in genuine, honest ways, and I also think it's because we're freaked out of it in ourselves.
We live in a world where there's this kind of notion that if we get to a certain state of health or a certain state of where we have enough money, or we have the right relationships, we have the right job or whatever it is, that there's something that we're going to attain when we get to that point — we're going to be happier, we're going to be better people.
And that kind of creates this weird hamster wheel mentality, where we're all just on a treadmill. Trying to get healthier, and healthier, and healthier. And fundamentally, as someone who's been sick my entire life, I will always be sick. I'll die sick. I'm never gonna be healthy, but I'm still 100 percent okay.
I'm okay, I'm just like everyone else. I'm having human experiences. I'm having pain, suffering, and joy. And living on my own — all of that. I'm still living, and it's still fine, and beautiful. I think it's important to realize that if you take health off the table for people who are sick, there's still a life there for them.
You also have this wonderful strength. Where do you draw that strength from?
Honestly, it sounds weird, but I find a lot of it in science. I'm a big nerd.
I think where I've had the most aha moments in my life has been through learning about how everything works — why it works the way it does. Because the truth of the matter is, there's so much complexity in everything if you know how to look at it right. If you know what's going on under the surface, there's so much complexity to it ... Even a dewdrop — if you zoom in deep enough to the dewdrop, there are whole organisms splaying out their entire life, and their battles, and their wars, and their relationships — all of that.
There are thousands of organisms in a dewdrop, living their lives. There's the actual chemical makeup of the water. There's the leaf that it's sitting on, and the way that it's turning sunlight into energy, and all that's crazy. And you would never think twice about it — it's just another dewdrop.
If you zoom in deep enough to any life, to any form of life, you find complexity. And I kind of applied that to my own life. That it's small, it's short. I don't have as broad of possibilities as some do, because I don't have health. But you zoom in deep enough, you look at it the right way, and there's still just as much life going on. There's still just as much complexity, and beauty, and intricacy.
I'm very much kind of a microcosm, macro kind of person. The same laws that govern the universe govern us. I think that that's beautiful and some of the best advice I ever got around being sick and moving forward with life ... 'Cause honestly, I don't think it's just a sick person thing.
And again, everyone has a really, really hard time just going about life. Because we're kind of sold this notion that it's way more glamorous than it is. And most of life is just mundane stuff. It's just going to the bathroom and then doing the dishes. That's the majority of life, is just really mundane ... It's this mental gymnastics of trying to get ourselves to do the same things every day.
So I think some of the best kind of advice I ever got for how to just move forward, and just do it, is that you're not that important. You're not that important, and I mean that in a loving way. Me being sick, that's not that big of a deal. I'm not that important. I have something to give, I have something to offer, and I can make something for the world. Out of my experience, and out of what I've been through, I have something to share. That can be important and can have a life of its own.
The moment you stop just kind of going that endless loop of ... I don't know, what you're doing wrong and how your life isn't where you want it to be. How can you get it to where you want it to be?
Once you kind of get out of that, and you step back, and you're like, "Alright, everything's really crazy, and we are somehow alive, and conscious, and it's really weird." Take a step back and realize you're just an organism — it takes a lot of the weight off your chest.
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