Fueled By Death Cast Ep. 26 - CLAIRE WINELAND
A MOMENT OF CLARITY - CLAIRE WINELAND
“The truth of the matter is - there so much complexity in everything if you know how to look at it right.” - Claire Wineland, Claire’s Place Foundation
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ON EPISODE 26 - A MOMENT OF CLARITY:
YOU can help NASA discover the next planet, right from your own computer. Listen to Science this week to find out how. The idea of being 'fueled by death' is that we all want to do something lasting before we leave this rock for good because death is inevitable. This is thought that drives What Fuels You on this episode. Also, some really cool stuff is coming from Death Wish Coffee, and the hosts get straight to the heart of this show. Plus birthday and community shoutouts, news about Grind it Out, and so much more you don't want to miss.
ABOUT CLAIRE WINELAND:
Jeff: And we kinda want to start off today talking about our mutual connection, really. You have your own foundation called Claire's Place Foundation, and that is part of Riki's Ride with Riki Rachtman.
Claire: Yeah, it is.
Jeff: Can you talk a little bit about how you kind of hooked up with Riki's Ride?
Claire: Sure. He actually discovered us, which is always so nice when people just stumble upon it. He just found out about the foundation, and about what we were doing, and I think it's just really such a ... You can kind of tell he's such an integrity person, you know? That when he's into something, and when he kind of believes in it, he just wants to do something to help. And so he just kind of organized it on his own, which has been so just really, incredibly helpful for us. Because the way that our nonprofit works is we give out trunks of money. So, you know what I mean?
So we have ... I've been in the nonprofit world for six years or so now. So, I've met a lot of other people with nonprofits, and all of that. And it's interesting, because a lot of them will raise funds, but then they'll kind of do projects with the funds. You know what I mean?
Claire: And so the funds kinda last them, but for us we're literally giving money to people to pay for their rent, and their car payments, and their travel expenses, and all of that. And so, a lot of money is coming straight in, and then straight out. So, we need all the help we can get, and Riki's just been really incredible, and kind of inspired by what we're doing, which ... God. Who am I to complain?
Jeff: Right. No, that's really awesome.
Jeff: Now you also have your other kind of internet campaign, your Clarity project-
Dustin: Which I gotta say, that is some of the best advice. As a grown-ass man, that is some of the best advice I've ever heard, straight up.
Dustin: Yeah. It has made me think about things, I haven't really given time to. I guess I'm not really a person to fear death, or to-
Dustin: But I'm also not a person to even ever really think about it, and it's kinda nice-
Claire: Yeah, you're not one way or the other.
Dustin: Yeah, you have some great mental exercises within the Clarity Project. So, what got you started making those videos?
Claire: Well I mean the truth is, I've always been ... Even when since I was little, I've always been kind of an over-talker. I was born with the gift of gab. Just came out of the womb blabbering.
Dustin: You, and Jeff both.
Claire: So, you know so at dinner tables, and stuff. Family dinners, and stuff I'd get everyone to be quiet, and I'd put on shows. So I always was just kind of a ... Liked sharing stories, and talking about experience. And as I grew up with CF, I kind of started to realize that the way in which sick people actually represented, and talked about in society is really gross. It's really degrading in a way, and I don't think anyone really ... And I think it's hard to see if you're not someone that has lived with it, it's hard to see.
'Cause ever since I was little, I've grown up around people who are completely healthy. Who meet me, and feel immense pity, and tell me they're sorry, and put all of their shame, and their guilt's, 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, and life experience, and valid things to share with the world. So I thought maybe ... Because I was a teenager at the time, and so I watched way too much YouTube. Way more than I should have. And 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."
Because I think 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, first of all, because no one talks about it. No one shares their experience I think in kind of genuine honest ways, and I also think just because we're freaked out of it in ourselves. You know what I mean?
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, right? 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, we're gonna whatever.
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 my entire life, will always be sick. I'll die sick. I'm never gonna be healthy, but I'm still 100% okay. You know what I mean?
Claire: I'm okay, I'm just like everyone else. I'm having human experiences. I'm having pain, and suffering, and joy. And living on my own, and all of that, you know what I mean? I'm still living, and it's still fine, and beautiful, and you know what I mean? And so 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.
Claire: You don't have to obtain this notion of health, before you're able to live your life. And so I thought, "Maybe if I talked about it enough online, that people would get what I was saying." But Lord only knows.
Jeff: Well, you've definitely made an impact online. Just from your followers, and the views on YouTube, and all that stuff. And you've touched on-
Claire: Awe, thank you.
Jeff: You touched on it a little bit, how you were saying you felt that there needed to be a voice for people who are sick. And you also have this wonderful strength to you, and I really wanted to kind of ask you, where do you draw your strength from? And I'm not talking about in the sense of that you are sick, and you're going to die. But from the sense of that, you are faced everyday with people like you said, unloading their pity, and their feelings on you. Where do you find that strength to kind of overcome that, and be positive?
Claire: Honestly I find a lot of it, and it sounds weird, but I find a lot of it in science. I'm a big nerd-
Jeff: We are too.
Dustin: We are too, big time.
Claire: Oh, good, thank God. And I feel for me, some of the ... And my dad is a very spiritual person. I was raised very to that kind of Buddhist, and kind of grew up reading those kind of things. And those do, do a lot for me as well. But I think where I've kind of had the most ah-ha 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, you know what I mean? If you know what's going on under the surface, there's so much complexity to it ... Even a dew drop, if you zoom in deep enough to the dew drop, there's a whole organisms playing out their entire life, and their battles, and their wars, and their relationships, and all of that. There's thousands of organisms in a dew drop, living their life. 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 dew drop.
Claire: So for me it's kind of, you zoom in deep enough to any life, to any form of life, and you find complexity. And I kind of applied that to my own life. That it's small, it's short. And it's ... You know what I mean? It's not as ... 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 you know what I mean? And intricacy.
Intricacy really, and so I'm very much kind of a microcosm, macro kind of person. The same laws that govern the universe, kind of govern us. And I think that that's beautiful. And I think a lot of the times ... I think some of the best advice I ever got around being sick, and kind of 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 everyday.
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. You know what I mean? 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 you know what I mean? 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.
And that can be important, that can have a life of it's own. But me, myself, my own head is not that important. So I don't need to dwell on it for a million hours. And that kind of helps so much, 'cause the moment you stop fucking ... Sorry. I don't know if you're allowed to cuss.
Jeff: No, go for it.
Dustin: Go for it.
Claire: Sorry, I'm such a cuss er.
Jeff: Cuss all you want.
Dustin: Get it out.
Claire: Comes out ... But you know what I mean? The moment you stop just kind of going that endless loop of ... I don't know, what you're doing wrong. How your life isn't where you want it to be. How can you get it to where you want it to be, and you know what I mean?
Claire: 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." And you take a step back, and realize you're just an organism. It takes a lot of the weight off your chest.
So I think that helped me a lot, and then I think the other thing is really the foundation, gives me a lot of strength. And not because ... I think there's a lot of ... In the non-profit world, and in the charity world, which is where it gets to be really hard. There's a lot of just helping just for the sake of helping.
Claire: We're kind of just throwing out, spewing kind of like, "Oh here, let's donate to this charity." Like, "Oh it's breast cancer, great."
Claire: Without any actual intention, or personal experience going into it. And you see that a lot, and I think that's why people are really detached from what it means to give. Because it's such a ... It's impersonal nowadays, you know what I mean?
Claire: You just kind of can give five dollars to cure breast cancer, and then you feel like a better person. But you're not actually giving anything of value to the world. And for me, what was really so incredible about how the foundation came to be. Was it came from personal experience.
My mom and I mostly work on it together. It's kind of turned into our baby, but it comes from my family having to go through the experience of having a kid dying in the hospital. Multiple times in her life, and then wanting to be there with me, while I was on my deathbed. And not being able to be at work for weeks, and weeks, and months, and months. 'Cause that's kind of the reality of when you have CF, it's so time and energy consuming.
Claire: It's four to five hours a day of breathing treatments. It's a quarter of your life in the hospital. It really takes you parents, and your family to be so involved. And the thing is, sickness isn't the only problem in peoples lives. So if you're a single mom, and you have two kids with CF, and both of them take ... That's eight hours of breathing treatments everyday, that's ... You know what I mean?
Claire: Someone's always in the hospital. How are you supposed to have a life? How are you supposed to go to work? How are you supposed to ... You know what I mean? So we had experienced that personally. That's not just me spewing off random data, about CF families. That's a personal experience of having to be alone by myself in the hospital, because my parents had to go to work.
And so, the foundation came from such a place of we went through something really hard when I was 13. And I was in a coma for around two and a half weeks, and all of that. And when I kinda came out of that experience, we realized that we really needed to do something to help other families who are going through the same thing. And so, that's kind of how the foundation came about.
And it's been six years of just such a whirlwind of realizing how necessary it is, because all of the money that's raised for cystic fibrosis goes directly to finding a cure for it. And that's awesome, great, I'd love a cure. But again that's that notion of health that's way all out in the distance.
What about actually living your life right now? What about having support for going about your day to day life? And that's kind of what we get to do. And that's been a real kind of source of strength for me, because I see how needed it is. And so I see that I need to get up, and pull myself together in order to help it survive.
Jeff: Yeah, totally. No, that's awesome. And I mean your foundation really is leaving it's lasting mark on the world, and-
Claire: Thank you.
Jeff: One of the tenements actually I've gleaned from some of your stuff, that you've posted through your clarity project as well ... Is your ideal ... And I think this is so poignant, especially for what we try to do, even on this podcast. Where you say that death is inevitable, and living a life worth living is what really matters.
Jeff: And that's kind of where we bore the idea of the "Fueled by Death Cast" cast. Everyone, whether you're sick or not, we feel is fueled by the inevitability that we're all gonna leave this rock.
Jeff: One day.
Claire: Yeah, of course.
Jeff: And it's how we leave it, and what we leave behind is really what is tallied.
Jeff: And I love that idea coming from you too, because you're so well versed on that. You sound like someone who is not just going through what you're going through, but you sound like someone who's a philosopher. Who really has spent time, and energy developing these ideals. And it's really empowering to listen to you talk about that.
Claire: Thank you. Thank you, I think that's actually one of the best compliments I've ever gotten.
Dustin: Oh there they are. Gold star for Jeff.
Jeff: Yeah, gold star for me.
Claire: Yeah, thank you.
Jeff: Well, you're welcome, and I-
Claire: It means a lot to me.
Jeff: I truly mean it.
Claire: It's much better than the, "You're inspirational." Comments. 'Cause that one I get all the time, but I like that, "You're a philosopher." One, that one I'm keeping in the books.
Jeff: Well I truly mean it, because one thing that you touched upon in a few of your videos actually was the idea of not rushing through life.
Dustin: Yeah, that one got me a lot. 'Cause I always think about when that time will come. When it'll be, "Oh you have a week to live." And it's like, "What am I gonna smash into that week?" And it's like-
Claire: Exactly. You know what's hilarious? Is we were talking ... Me and my roommate. Who's a really good friend of mine. We were talking the other day about if the world was actually ending, what would we logistically, and practically do? Because both of us don't make that much money.
Claire: I help with a non-profit, and I do some public speaking jobs, but ... And I live by myself in Venice, which is crazy expensive. So, I'm not making that much money. So I'm thinking if someone says tomorrow, "The world's gonna end in three days." I'm thinking, "Logistically what would I actually do?" Because I don't have enough money to go travel the world, and jump out of planes, and so I'm like, "What would I do?" And we literally were just like, "We would sit around. We would order a bunch of Postmates, and watch 'Wayne's World'." We totally just ...
We'd probably just get Sugar Fish, which 'cause I'm obsessed with sushi. So, we'd probably just get Sugar Fish, enough to last us for five days straight, and just watch a bunch of "South Park". That's probably all we'd do-
Jeff: I'm coming over.
Claire: Yeah right, no please. Having a little party at my house.
Dustin: What would you do Jeff? [crosstalk 00:17:03]
Jeff: I would go to Claire's is what I would do.
Claire: Alright I know I got the right idea.
Dustin: But yeah I guess the idea is that, it's not about quantity, it's about quality. What's actually gonna matter to you? Not what can you knock off your check list?
Claire: Right, and well I think also talking about nerdy science things-
Claire: Yeah right, what's really interesting to me is the actual dying process. Because I've gone through the experience of dying, of what it feels like. I had my lungs fail on me, which was a good five hours of them slowly failing. No one being able to fix it. You slowly start to kind of go crazy, 'cause your CO2 levels get higher-
Claire: 'Cause you're retaining stuff, 'cause you're suffocating, so you ... I felt that, and I experienced that. And not in a overly dramatic sense, but I know what it feels like to finally kind of close your eyes when you actually kind of decide to let go. And what's really interesting about it is it lasts forever. It just goes on and on-
Claire: You literally are just ... You're there, and it's like time completely stops. And not in the kind of ... You have flashbacks, but not in a sense of you're sitting there, seeing your whole life. It's just you have a lot of time, and space to think about things. So you just kind of have this moment of it gets very still, and very slow. And I remember that really clearly, 'cause I've been working on writing a book, that actually kind of my personal wording on the whole thing. 'Cause people have written stuff about me, but I've never actually written my own experience.
And so I was trying to articulate it the other day, but really what it is, is it's just this ... You kind of dive into this kind of infinite ... How if you get small enough, and small enough, and deep enough, and deep enough into your own brain you can make the five seconds when you're dying, can be the most exciting, intricate five second of your entire life. So it's just it's an interesting thing to think about that in your day to day life.
That when it fundamentally, when it comes down to it, all these grandiose ideas we have about going out in a bang, and whatever it is-
Claire: 'Cause I've had my things. I used to ... I was convinced that if I knew that I was gonna die of CF, if I knew it was coming for sure, there was no cure. I was too sick beyond repair, that I'd just leave the hospital, and I'd come up with some huge extravagant way to die. It's just something crazy-
Dustin: Do you ever just want to hop in a fast car, and just-
Claire: Oh totally.
Dustin: Just rip down the road, and-
Claire: Yeah, exactly.
Dustin: Screw it, close enough. We're doing it!
Claire: Yeah, no exactly. I'll pull a ... Do the ... You know "Death Proof" by Quentin Tarantino?
Claire: The movie? Yeah, I'd get on a car, strap myself to it. Something good, something to draw some attention. But the point is, is that it's not the grandiose. It's not that big, and exciting. It's really small, and it's simple, and at the end of the day it's just you looking at yourself being like, "Okay, hello."
Claire: This is what we have, this is what we've done. This is who you are. There's no one to convince of anything. There's no one ... You know what I mean? It's just you sitting there with yourself, and it lasts forever.
Dustin: Kind of sounds nice.
Claire: It is. I mean it is, I hate to be all morbid, and sound like an emo sick kid. But yeah, it is nice. It's nice, because once ... If you don't actually die, if you're close to dying, and then you don't. You have a lot more comfortability with yourself. And I think that, that's something that a lot of us don't have.
Is we're not very comfortable just being with ourselves, which is i think my point with the whole, "You just want to live life slowly when you're dying." Is doing big, grandiose things often times ... Not always, but often times is a way for us to ignore what we kind of know is going on.
Claire: It's kind of a way of running away from it things. You know what I mean? Our way of running away from yourself-
Claire: Or distracting yourself.
Claire: Yeah, distraction. It's like, "If I do enough big, exciting things, I might forget that I don't really like myself." And so dying is less so about doing a bunch of big things, and it's more so about finding a way to like yourself, because you have to. Because you're the only one that's gonna be there for you, when you die.
Claire: So, it comes from a very practical sense.
Dustin: Do you feel like every time you've gotten close to dying, you feel like every time you've come out of it, you've gained a little bit more?
Claire: I think so, but it's hard-
Dustin: Is it like a transformation process?
Claire: It's hard to tell ... Well for my parents it definitely wasn't. I remember my dad saying when I woke up from the coma. He looked at me in the eyes ... So it would have been, it was three days of horrible detox. 'Cause they had me on so many drugs, to keep me in the coma. That I'm detoxing, and I'm hallucinating like crazy for three days-
Dustin: Oh my god.
Claire: And so, he walks back into the room one morning. Thinking that I was still gonna be crazy, but I had finally finished detoxing, and I was present. And he said he looked at me in the eye, and I just stared at him, and didn't say anything 'cause I was still intubated. And I just stared at him for 10 minutes, and he said that he felt like something big had changed for me.
And it's funny, because I logistically don't really ... I don't have a ... I feel like it's one of those things where it's hard to say, because growing up is so linked with my dying experiences-
Claire: So it's I don't know if it's just that I've grown up, and matured, and experienced more life. And thus, I have more understanding of it. Or if it's because of the near death experiences that I have this understanding of life. I don't know if it just comes with age, or kind of thing ... 'Cause there's been ...
And I think too something that's interesting is, not all of my relationship to death comes with actually being close to dying. A lot of it's surgeries. Going in for surgeries is such a bizarre, and really terrifying thing, because you're laying there strapped to a table. And you're being put unconscious, and you now that there's a percentage of a chance that you won't wake up from it, and that you'll die that day.
So, kind of always have to have this level of acceptance when you're being given the Propofol, to put you under. You always have to have a level of, "Alright, this is what's happening. If I don't wake up, I don't wake up."
Claire: And nowadays it's easy peasy lemon squeeze, but when I was a kid it was terrifying. And so I've had 36 surgeries in my life-
Jeff: Oh my god.
Claire: So every single time, or every single time, and I'm such a stubborn little brat, but I always refused to get the pre-drugs. But most people go into surgery already drugged up on crazy-
Claire: Cushy drugs, so that they're all happy, and blissed out. But I was too stubborn, and so I always refused to go on the comfy drugs. So I had to actually deal with being freaked out, and paranoid. And so that actually helps me a lot, because I got really good at being able to flip the switch really fast.
Dustin: Was that a conscious decision? Was it, "I don't want to go on the cushy drugs, because I want to learn how to deal with this?"
Claire: Kind of. It was the, "I don't want to go on the cushy drugs, because I want to be aware, and present when I go under." I didn't like not being aware, and present when I went under. Because I felt ... I mean it's interesting, but I kind of felt I wouldn't be as invested in staying awake, or waking up afterwards.
I felt if I was drugged, I kind of would check out, and then I might not make it. Because I have this notion that it's very much the mind that kind of dictates the body. And that's from ... That's just 'cause for me, that's what's always worked. Is that, if I kind of have a lot of will power, and stubbornness around my body doing something, it'll do it. So, I was afraid if I was too checked out, that I might just not come to.
I wanted to be aware for the whole thing, and make sure that the doctors were putting the right blood puff on the right arm, and all of that. I was such a little ... I'm such an anal freak when it comes to hospital shit. Just 'cause I know it all so well, that it's hard to check out for me.
Dustin: Do you think that's helped?
Claire: Very much so yes. Very much so, and I have kind of ... 'Cause I was raised in hospitals so much, that I'm so overly comfortable with doctors. I'm too comfortable with doctors. I don't respect them enough. So I have this kind of ... I've seen too many fuck up, and I've seen too many nurses fuck up, exponentially. One time this nurse almost plugged me in, hooked me up to my IV without priming the line.
Dustin: Oh my goodness.
Claire: Which means that the whole line was filled with air. And if you get more than one inch of air into your blood, it kills you. And this was a central line, which meant the line lead directly to my heart. So the moment that one inch would have gotten in, it would have gone directly to my heart. And my heart would've stopped.
Dustin: Oh my god.
Claire: And I ... She hooked up, it was twisted into the thing. She was about to press go, and I looked, and I noticed there was no tiny air bubbles in the tube. And that's weird 'cause if there's fluid in it, there's normally little air bubbles. And I was like, "Hey did you prime this?" And she went ghost pale-
Dustin: Oh my god.
Claire: And was like, "Shit!"
Jeff: oh my god.
Claire: And so there's been too many of those instances in my life, for me to easily check out. 'Cause I just feel I need to be so on all the time. But the truth is, if it doesn't ... You have to sleep eventually, you know what i mean?
Claire: If it's gonna ... If something's gonna happen, I guess it's just gonna happen, and it's a part of me that just has to let it happen. But yeah anyway, I think ... Side rant, but I think it definitely did help with my relationship to death, because I got really good at being able to turn on, and off a switch. Where I could be terrified, but still act. I could be literally wanting to piss my pants, scared as shit, walking to the operating room, but still do it. And that gave me a lot of grit, just kind of in life in general.
Dustin: I think that's kind of the meaning of bravery. We're all scared shit less when it comes down to it, and it's just the fact of, will you actually go through with it?
Dustin: With the fact that you're scared shit less.
Dustin: And that's so important, that's awesome. And I'm never gonna be the same after hearing that. I'm always gonna be paranoid of nurses now.
Claire: Yeah, you should. You should always ... All my friends know to have me around, if they ever get into the ... They have to go to the ER for anything.
Claire: They're like, "Oh Claire, can you come just to make sure that no one kills me in my sleep on accident?"
Dustin: "Oh my god, how many times has that happened, and we don't hear about it?"
Jeff: Yeah right.
Claire: I know, no 'cause because ... No, remember that time ... Maybe you don't, because it's just I think a weird sick kid thing to know. But I was in the hospital at the same time that some celebrity's kids got dosed too high a dose of Heparin.
Dustin: Oh no.
Claire: From the nurses, and Hepherine is a blood thinner. And the put Hepherine into a central line to stop them from clogging, but I remember I was in the hospital, and I remember hearing about this drama. And how they're trying to sweep it under the rug, due to some celebrity's kid. But they had accidentally given it instead of 10 milliliters of Hepherine, they had given it 100, and it killed the kid, and the kid died.
And there's this whole ... I remember it was at Cedars', and there was this whole drama. And the nurses were trying to figure out how to blame it one something else-
Dustin: Oh my god.
Claire: So you don't ever realize how much that happens, but they're humans. I mean, they're people taking care of other people. It's bound to happen, it's just medicine is so powerful that one slip up, and oopzie daisies.
Jeff: We need robot nurses.
Claire: Yeah we do. I mean except I've read enough sci-fi to know that probably wouldn't work well either.
Jeff: Don't mess up more nightmares.
Dustin: We don't need robot nurses.
Jeff: You mentioned earlier that you're writing a book. Can you talk a little bit about your book?
Jeff: What got you even the idea of tackling ... Writing a book is quite the endeavor.
Claire: It's huge, really huge, and I didn't realize until I started, which is a very Claire thing of me.
Claire: Whoopsie daisies. Kind of how it goes with everything, but I'd been propositioned by many a people in my life to write a book, and it just [inaudible 00:30:29] it always just felt it was gonna be just another sick kid book, and I'm like, "The world does not need another happy sick person, telling people to be happy."
Claire: You know what I mean?
Claire: There's enough, and I get that if you boil down anyone's message enough. Anyone's inspirational message enough it just kind of turns into that. So I don't ... You know what I mean? I already talk about my story enough. I'm a public speaker. I share it all the time.
When I met my best friend, and she's a beautiful artist, and a poet, and just someone that I envy so much her incredibly intricate way of explaining things, and saying things, and translating her experience. Because I think that's kind of artists that I really admire, are people who can translate their own experience in a way that feels like your own experience.
And I was just ... We just kind of started working on projects together, and started working on shorts. Short films, around Venice, and all that stuff. And then finally one day we were talking, and we realized we kind of ... I was giving her these big ideas I had, and on sickness, and life, and all of it. And she was like, "Hey you should let me help you write it." And I was like, "Wow, that's a genius idea!"
And so, we're working on it together, and it's really wonderful, because I'm trying to find a way to just make something that's genuine. You know what I mean? Make something that's a genuine wrap up of my experience, and what I've ... In every sense of the word, because I have ...
There's the kind of sickness that I've dealt with, and everyone's reaction to that, and having to deal with everyone's feelings around it. But at the same time there's also just other aspects of my life, and why I am who I am. And family things, and you know what I mean? And a lot of that I've never talked about.
And so, I'm kind of just trying to make something that humanizes people who are sick, but that also makes people more okay with their own suffering. And their own experience as people. Because I think one of the fundamental problems that I see in kind of how we ... I don't know, in how we act, and one of I think humanity's problems currently, and maybe throughout all time. Is just that we do not have pride in our pain. We don't have pride in our experience, and what we've been through. And when people have suffered, really suffered, you know what I mean?
Claire: Not just chip a nail suffer, but actual pain, heartbreak, sickness, death, you know what I mean? All of that, which is just a part of being alive. It happens. But when you experience that, that's such a well of ... I don't know, of information. It's so usable, you know what I mean?
Claire: And I think people tend to be ashamed of their own experience, and what they've been through, and the things that they've experienced. They're ashamed of it, before they take any pride in it. And I think we're all kind of ... We're all trying to pretend we're more [inaudible 00:33:46] what we are, and the truth is that the people that have really changed the world, are the people that have given something of real substance to humanity. Are people who will suffer.
I mean look at Beethoven, Stephen Hawking, I mean all of that [inaudible 00:33:59] ... Really generate beautiful things to humanity in society. Aren't people whose lives have been fine and dandy, and I think that's the whole point. Is that you kind of get closest to the truth through a lot of pain.
Dustin: Yeah, I feel like suffering's the one thing that we all have in common, and to embrace suffering is to feel a connection to everybody around you to-
Claire: Yeah exactly.
Dustin: To actually, yeah.
Claire: Because if it's not your own, it's someone else you know what I mean? If it's not your own pain, then you start thinking about politics, and world events, and then you feel pain-
Claire: You know what I mean? And so its ... you're gonna feel it somewhere. You're either a cold, closed off bastard. Or you're gonna feel pain? And it's not a matter of feeling it, or not feeling it, because you should be feeling it. It's a matter of what you're doing with it, and what you're making with it, and what you're giving from that place.
And I think that, that's something I'm trying to get across with writing a book, and Lord knows if I'm gonna succeed. But I am tirelessly working on it myself-
Dustin: That' excellent.
Claire: Yeah, keep you posted.
Dustin: Yeah, that's awesome.
Jeff: Please do, I'm very excited to see the end result of that.
Claire: Yeah, thank you.
Jeff: So you got the book going. This episode of "Fueled by Death Cast" is actually going to coincide with the beginning of Riki's Ride, in June. And that is also obviously helping out Claire's place foundation. Is there anything else-
Jeff: Coming up that you're doing?
Claire: Well I mean yes, at the end of the summer in September we are having a Glow Ride which we do ever year, but no specifics on that yet. But the Riki's Ride is a huge deal for us, because we're currently at the point where we have so many families that have been asking for help, and support. We're kind of on this ... We're on this thing where we're trying to kind of constantly bring in enough to put right out. So any donations made through Riki's Ride, are going directly to two families that we currently have-
Claire: Who are asking for support. So, there's literally ... You will literally ... We can track your ... Whatever your donation is, even if it's five dollars. [inaudible 00:36:16] ... Through straight into someone's ... You know what I mean? To someone's rent check, or someone's medical bills.
And we had, I remember last month we had kind of one of the biggest I think, one of the most hard hitting stories. Are impactful stories, that we've ever had, which was a [inaudible 00:36:37] ... Who was homeless, and was dragging her medical equipment from shelter to shelter, and didn't have any support, and was too sick to actually to get a dog. Which I understand, 'cause it's impossible to get a nine to five, when you have five hours of breathing treatments every day.
Claire: And finally a social worker got in contact with us, and when she was in the hospital we were able to get her an apartment. Help here pay her ... The deposit, and all of that, and she was discharged from the hospital into her [inaudible 00:37:06] ...
Claire: So that was really crazy, and that was everyone who donated for the kind of Christmas month. All of their money went directly to that, and everyone got to literally see her get the apartment. And now it's same with that, we have two families right now that they're applying for help. And so, it's at a good point right now. Where we're kind of ... Everything's that made, none of it goes to overhead. It's all going in, and then straight back out.
Dustin: So you can actually see the change that you're making. You can actually notice the difference-
Claire: Yeah we have-
Dustin: The difference that you're contributing.
Claire: Yeah, exactly. There's a seven year old that's been in the hospital for tons of times this past year, and the mom had to quit her job. And the father's working a super low paying position, and they have four other siblings.
Dustin: Oh my gosh.
Claire: And so yes, so her electricity's about to be shut off. Somebody money will go to that, and so yeah ... And many other cases just like that. So it's a huge ... For us, it's kind of constantly keeping on top of that. Since we're one of the only foundations in the CF community, that does this, and solely this, so yeah. It's huge, and all the help, and support, and eyes looking our way, is incredibly appreciated-
Jeff: That's excellent.
Dustin: Yeah, that's amazing, and I feel if I were in that position of one of those families, or one of those people. The thing that would make the biggest difference is knowing that somebody out there cares, and is actually trying to make a difference. I think that is even more important than the monetary value, that comes of it. It's just to know that somebody out there is watching out for you, which is truly amazing.
Claire: Right ... Yeah, and it's so funny, as someone ... Now that I'm [inaudible 00:39:00] ... I just turned 20, I just had my birthday.
Dustin: Happy birthday.
Jeff: Happy birthday, mazel tov!
Claire: Thank you. So officially out of the teen years, and it's really bizarre to me, beaus I actually have bills now, and taxes, and all of that.
Claire: And I'm just ... I know right? Yeah definitely boo. But I'm also realizing how helpful having someone who has some finan ... Who will financially support you, if things get too hard ... How huge that is, 'cause I ... Before I was looking at it, kind of just from the perspective of a kid, you know what I mean? And a CF kid, that just wanted her parents to have some support. But now I'm looking at it as an adult CF who actually has bills to pay, and who needs some support sometimes.
Claire: And so I'm kind of understanding how helpful it is to have kind of a safety net in a way. In a way that I never did before. I never understood kind of how crucial it was, and how terrifying bills can be ... If you're kid is dying, it's horrible, but if you can't pay your bills, and your kid is dying.
Claire: That's a next [inaudible 00:40:09] ... It just seems it's so many levels of torture. I just can't imagine, and that's the least we can do for people. Is make sure that they have their basics covered.
Jeff: You're definitely doing a lot, and it's really awesome to see all the things that you are involved in. And I finally ... If you can kind of tell our listeners where they can follow you?
Claire: Oh of course. Well go to ... To find out more about the foundation, and about what we do, you can go to ClairesPlaceFoundation.org. To find out more about me? That's confusing, because I have so many different weird social media pages going at the moment. I'm trying to consolidate, but you can look up the Clarity Project, or you can follow me @clairewineland on Twitter, and I believe I have one of those ... And Instagram as well. I'm kind of, I'm all over the map.
Claire: But anything foundation wise is me. So, you're good.
Jeff: That's awesome.
Jeff: Well, thank you so much again for taking time to talk to us on the podcast.
Dustin: Yes, I feel I'm ready to take on the day now.
Claire: Okay, good!
Dustin: I feel stronger just from talking to you, seriously. It's really refreshing.
Claire: Awe, thank you so much. No, this was a pleasure.
Jeff: Awesome well, and we'll be in touch. Like I said I definitely want updates on that book.
Claire: Oh of course. Everyone will get updated.
Claire: Yeah, thank you guys so much.
Jeff: Excellent well yeah, thanks again.