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Don’t wait to be healed to start serving humanity | Claire Wineland | TEDxCardiffbytheSea


Translator: Mohand Habchi
Reviewer: Peter van de Ven 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. (Laughter) 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. (Laughter) 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 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 – (Laughter) 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 – (Laughter) 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?” I was [inaudible] 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?” (Laughter) 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… (Laughter) 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 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. (Laughter) So, the title of my talk was
“Dionysus, the rising and dying god,” or maybe it was the dying
and rising god, who knows. (Laughter) 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! (Applause)

Glenn Chapman

100 Comments

  1. what an angel. i hope wherever she is now she's at peace and proud that she's inspired many people.

  2. feels like someone is alive when their videos and spirit are captured all over the internet, im glad claire is still alive.

  3. "We view it as a curse from the Gods because we haven't grown to appreciate our own human suffering."
    Amen. This was so moving for me, esp. the last three minutes. Very sad I only got to experience her after her life passed.

  4. I watched her first few talks on SoulPancake and now Iโ€™m watching this โ€” she has grown so much. But she has been such a constant inspiration to many. Your work and impact will not be forgotten and will continue to serve many others, CF patients or not. Even normal, healthy people like me feel the impact of your work, Claire.

  5. I completely relate to the bra strap being visible when youre trying to be serious. Also youve made me take nothing for granted. You and all who have said what they had to say in this life before they left.

  6. She has more than life brimming from her compared to anyone that I've ever met.

  7. We've never crossed paths, but you taught me something about life.
    May your soul rest in peace my friend in Jesus name.

  8. It's sad that I often discover all the most inspiring and beautiful souls when they no longer physically exist in the world and live with their spirit talking to me throughout all my journey, regretting that I couldn't get to meet them. She made my life even more brighter through her allure that still keeps on shining!

    life is beautiful! be happy, people!

  9. When she said the bit about people saying sorry, I could relate to that. My whole life I have had a brain tumour and in 2015 my epilepsy came back and thatโ€™s all people say โ€œIโ€™m so sorryโ€ and what Claire said is so true

  10. ๐Ÿค’๐Ÿฅบ๐Ÿ˜”, Fly high bright and bubbly claireโฃ๏ธ

  11. I remember being at Disneyland with Claire and going in the elevator at Indiana Jones and she told the same story! She was such a strong human!

  12. I definetely can't imagine what the parents are going through by having lost this incredible girl

  13. My favorite TedTalk ever. What a stunning personality. Thank you for the gift youโ€™ve given to the world.

  14. Thank you for shining your light on this world Claire, you'll keep shining wherever you are. โค

  15. I've only found out about her like 2 days ago. I'm extremely disappointed in myself because I didn't find out about her earlier.

  16. ๐Ÿ’–๐Ÿ’—๐Ÿ’“ I think iv listened to all her talks and there isn't a soul left untouched after listening.. She found her calling. And No matter ones gender or age, her wisdom can change anyones life . She's left a lasting legacy and she'll bring her beauty grace and wisdom to future generations๐Ÿ’“๐Ÿ’—๐Ÿ’–

  17. What a brave strong woman – and this talk was very powerful, thank you/her. A friend in my year at school had CF and so did her older sister, I saw them struggling to breathe and heard about their treatments: so awful (for them & their parents), and I don't know how long they survived or if alive now. I've got a brain injury (& loads of pain & other stuff) and so I know daily (& nightly) struggles & pain, I'm lucky though: not nearly as severe as CF. I try to be brave and push myself as hard as I can but sometimes (as right now) I've don way too much and it's like an overdraft: must pay it back over time plus interest on top = worse pain & fatigue. There's lots of us out here with 'invisible' illnesses/disabilities, I wish there was more daily help, complete healthcare, financial aid that's enough to live on and decent housing we can afford – for all of us.

  18. I just found you today and I'm heartbroken. You are gorgeous in and out. Im SO PROUD OF YOU

  19. PLEASE…find a damn cure for this murderous disease. I lost my sister from it, too. She was only 16โ€“I was 10. Please.

  20. To everyone reading this please turn to Jesus He loves you and wants to save you, Only Jesus can truly heal you, He is the God of miracles The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, There is nothing impossible to Jesus, its as simple as asking Him to show you He is there and if you really want to know He will tell you, I know this because it happened to me

  21. Only watched this today so inspiring, our daughter has cystic fibrosis, she's 11.

  22. Sad to hear she passed. Inspiring story. I wonder why nobody told her bread and rice and potatoes promote mucus and probably enhanced her suffering… ๐Ÿ™ R.I.P.

  23. You were so inspirational, your words and motivation live on, thank you for your life.

  24. So inspiring. She literally lived death not far away and still showed us all what one can do with lives when you live is so short.
    She will be remembered.

  25. Claire I keep watching your videos and just stare at you. You're beautiful, caring, loving, and you were and still are SO inspirational. I miss you and I know everyone else does too. We all love you.

    Breathe easy, angel ๐Ÿ–ค๐Ÿ–ค

  26. Love you brave girl! You'll forever live in my heart n that of others!โค๏ธ๐Ÿ–คโค๏ธ I hope you know that wherever you are now!

  27. Watching Claireโ€™s videos has helped me and continues to help me with my horrible death anxiety. RIPโค๏ธ

  28. Just wow, never thought only a person speaking could give something like that to me

  29. May Jesus Christ ๐Ÿ™ bring peace to the hearts of her parents as they will always miss and grieve their lil angel. May she RIP in heaven.

  30. Sometimes the Energy gives us a beautiful soul like Claire's. I wish I had the opportunity to talk to you face to face.

  31. What a beautiful soul ๐Ÿ’œ your cup of life overflows and the impact you have made inspires. I hope you got to meet your childhood inspiration

  32. Sounds like she really had a good education and upbringing the way she expresses herself. That comes from a loving and supportive environment. Too sad that the disease took away so much from this obviously amazing person. I hope sheโ€™s in a better place making her the truly lucky one and us the unlucky ones until our turn. Rip

  33. U know when I see that one person and there the most beautiful creature you've ever seen and u just wish you had a chance to talk to and get to know them. Like your just madly crashing on them. Yeah this women is so great she's so inspirational it's sad she passed so young. I've been watching her videos and it just makes me more sad. But with her videos she inspires me do do better. I suffer from chronic health issues as well like some pretty bad ones I've always had that like helping people mentality I feel like I'm trapped with all my health issues especially when I feel like nobody cares. I need to learn to be more happy to be more kind especially when people tick me off just have gratitude for still being alive I guess but at the same time being happy to others might rub off on them and if I can make someone happy that's all that matters. Even though I didn't know you Claire you are an inspiration to me I will never forget you. If there is such a place called Heaven which I believe Maybe we can meet. You know sometimes I think maybe there isn't a heaven or another dimension a realm that we go to when were gone were just gone just makes me think about how more important life in his and the connections we make are. To all the people out there I love you we have to start loving each other this world is turning hateful more and more. There's an imbalance everywhere we turn we need to practice love.

  34. I sure hope she's having fun exploring the universe bringing beauty to others…

  35. She's biutyfull, i like her mouth and teeth… Im fall in luv… โค๏ธ

  36. So much love to you girl, for your wonderful gifts, you were a beautiful soul and a blessing from heaven, rest in peace and keep shining your light of hope from up above.

  37. Amazing woman, just imagine if we all aspired to be the person that we would look up to

  38. Doctor sebi reginemet could have saved her!! Its natural herbs that stopss the mucus in your body killing diseases like this. If u dont know look up dr sebi. The gov. Doesnt want it its s threat.

  39. Wow!! I'm floored what a beautiful way of finding peace in such chaos. When i listen to her it just helps bring perspective on why we are here.

  40. I am going to miss you Claire but, I am so grateful for the time that you were with us.

  41. I aspire to live like you Claire. You may not have lived a long life, but you lived a complete life, more complete than a 90 year oldโ€™s life

  42. Absolutely soul crushing. Love you girl, you give me strength. Bet shes still smiling wherever she is

  43. When I heard she died I was so sad, she was so awesome and beautiful and smart โค๏ธ

  44. RIP my dear… You continue to inspire. Thank you, just thank you. You helped me step out of my comfort zone. Helped me realize I could use my suffering to make a positive impact in this world. I try. I try hard, so when it's my time to exit, I know my existence wasn't in vain.

    How wonderful it would be if more of us had the courage and compassion you had. What a different world we would live in, if we found the courage to share the truth about our journeys, with an intention of helping others in similar boats. How wonderful it would be….

  45. She is dead.But her words and inspiration will live on with and inside of us.

  46. Its always sad when some desperate sick person gets used and abused by the rich pushing an agenda but oh well the peasants always needed these more appropriate role models to wallow with ๐Ÿ˜‚

  47. such a beautiful soul, I barely just heard of Claireโ€™s story today but i feel like iโ€™ve known her my whole life. Rip Claire โค๏ธ

  48. Humanity is the only reason that the Earth is dying. There is no hope for the future. Earth will become like Mars.

  49. Sorry Chile pa tie q to.. filipines 28 thadulanag tile pa this with o by kilow g tivelgeri dilger are of hauoplaina Wetilodug lay leppos (up) Norry.. morod

  50. Netuilo pathis by Shopleinger.. Chaulag so esk po'tule good if hotitep lay Wothag seteulger Do.. nofilep ang Coth i b paunod ay kile Naplay dualg yeduelda your

  51. jesus the i taolaga si w there p yondiduel can from all by hile parreulediey so… are uofilep cmettuelg you Sorry by aofiellowed siseholey sareduel god kay Ciley
    Feeg tepile on carreud oay kile pa… Choplese in by Tailgedo Nofilsa Sorry No. No. No. Gofillsag or hile pculendile are teuley sp'esy

  52. (up) aehile porrha so' tenruod lay chile 2d you faulgadainad tiepala d sa to… here meue di n l ey

  53. (18291%) like lunesg can god it hile pa Sorry Not' all wothis Chaulapinaagd tiey you s' meuinsad for n Jesus 24 live

  54. I have just met you. You have inspired me more than any other human being in this world. I will come and hug you on the other side. You have put warmth back to my soul. God blesses you sweet Claire.

  55. Sheโ€™s so amazing ๐Ÿฅบ Living with that disease must be so difficult

  56. Claire is my inspiration! She is so Beautiful and Wise! Ps I say is. She lives on through YouTube Vlogs!Claire Namesake( Last name.)I guess her family likes to be merry! ๐Ÿ˜‚๐Ÿ˜๐Ÿ˜˜๐Ÿ™‹

  57. It's not the years in the life, but the life in the years.

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