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

In this moving talk, Claire Wineland, an impassioned cystic fibrosis patient and an inspirational Youtube personality, invites us to enjoy our human suffering and make something from it. "Life is determined by what you make out of the embarrassing moments and the painful moments. It's what you make and what you give from that place," she says.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

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)