Transcriber: Yael Ring Reviewer: Capa Girl
What would you do if you had 100 years to live?
No more and no less.
It's a little weird, right?
As humans we come to expect these long vibrant existences,
especially with all these insane medical innovations of our time.
And because of this the previous question is often posed a little bit more dramatically.
What would you do if you had, say, only 6 more months left to live?
And I think it's a stimulating idea because
it causes us to question our invincibility.
Especially as teenagers,
when we realize we are not going to live forever,
we are forced to reflect on how we are spending our lives currently
and what we might need to do to change that.
Now, it gets really interesting when you have a 50% chance
of potentially living that short life, but you have no ability to know for sure.
That is when you have to start taking action right away,
because the consequences resulting from the failure to do so
are far too great.
This is me as a little kid.
Now, I was way cuter than my little brother,
but ladies, I promise you, he's an adorable 16-year-old in the audience, so, yeah.
(Laughter)
So, I was this extremely shy but inquisitive, curious kid,
an idealist full of big dreams.
When I was 7 years old or so,
I told my dad all at once I wanted to be a princess,
a house builder – or a carpenter, a veterinarian, fire fighter,
President of the United States of course, animal cop,
and apparently after watching "Bill Nye"
I wanted to be a person who saves people after volcanic eruptions.
(Laughter)
So that was kind of unique in itself.
And, looking back at my childhood events,
it both surprises and relieves me that this optimism and idealism did not fade.
In 2001, my parents began what would become
a long divorce process, complicated by the fact that my mom
was suffering from a disease we didn't even know she had.
In 2003, she was officially diagnosed with Huntington's disease,
a genetic brain disorder that causes its victims
to lose the ability to walk, talk, think and reason
over the span of about 10 to 20 years.
There is no cure and the treatments that are available
only lessen symptoms, but they don't eliminate them.
And some people I've heard describe it this way –
If you combine Parkinson's, Alzheimer's, Dementia, Bipolar Disorder
and ALS you'd get a different form of Huntington's disease each time.
And in 2005, things began to get a whole lot worse.
My mom began to express her disease in physical form,
and I watched this happen through skinned knees from falls,
broken bones, bruises and experiencing one too many car accidents.
The disease also was destroying her emotional capabilities as well.
One day she would range from severe depression
in the next to a violent outburst.
And one of her episodes sent her to the psychiatric ward of a hospital
where she was deemed unable to remain in a normal home setting.
She was subsequently moved into a nursing home
where she would remain until she passed away in January 2011.
This is my mom and me and my dad in 1994.
This is what Huntington's disease did to my mom.
This about 7 years or so after diagnosis,
you can see she doesn't have any control of her motor capabilities,
and at this point she was also unable to speak,
the disease has taken away any form of communication
and she could only really correspond in small noises.
And as I visited my mom more and more in the nursing home,
I came to the realization that I was watching her die,
because she wasn't gonna get any better.
And obviously, as a 12-year-old at that time
that was really hard on me.
And I thought about how young she was,
I thought about how if I had the disease, or decided not to test,
I couldn't have children.
I thought about if my own two brothers had the disease
how I might have to be a caregiver for them,
like my grandmother was a caregiver for my mom.
I thought about how if I had this disease ,
what husband would want to take care of me if I had it.
I also thought about how I might never be one of those crazy old grandmothers
telling her grandchildren the ridiculous stories of her youth,
which I have many.
But I think most of all, I was scared about the fact
that I could potentially lose my independence and freedom
far earlier that I had ever planned on.
And so as I was experiencing all these emotions
I began to write, I wrote in tons of journals –
Sorry, I also have a 50% chance of inheriting this disease that my mom had
and so do my two brothers.
So I wrote in journals about this,
I wrote in the form of fiction, poetry, short stories, anything.
And for years I couldn't go anywhere without a pen and a piece of paper
because I never knew when inspiration was gonna strike.
And because of this I ended up writing a philosophy
that has absolutely changed everything for me.
The best philosophies come off paper and are experienced in real life,
so I'm gonna do that for you today.
I met some Chapel Hill kids in the audience earlier
which is crazy cool
'cause we're from North Carolina which is kind of far away.
And people back in "The Thrill," as we call it,
know me to be kind of zany, weird –
and I have a tendency to embarrass myself
because I put myself out there all the time,
and do stuff that I probably am not capable of doing,
but I try anyway.
And this is really fitting timing because I'm going to attempt to sing for you all
and I can't sing.
(Laughter)
But I wanna tell you before I do that.
So, there once was a sponge who lived under the sea
and you may know him,
and he was an expert at being creative and having fun and all that.
And he was trying to explain to his frenemy, Plankton,
that you could have fun and you didn't have to destroy the world,
it's okay to have fun.
And Plankton wasn't getting it. So he was like, "Okay, well –
Being the creative genius that he is, he was like,
"I'm gonna sing a song for you
'cause music is the universal language and you'll get it that way."
So the song went like this –
♫ F is for friends who do stuff together ♫
♫ U is for you and me ♫
♫ N is for anywhere and anytime at all ♫
♫ down here in the deep blue sea. ♫
Alright, cool, so you guys got it!
(Applause)
And so I wanted – you guys sang along,
but I also want for maybe the older audience
to like go over lyric by lyric so that you guys can sing this too.
And listen carefully because there's a word change in here,
so just repeat after me –
♫ F is for friends who do stuff together ♫
(Audience): ♫ F is for friends who do stuff together ♫
♫ U is for you and me ♫
(Audience): ♫ U is for you and me ♫
♫ N is for anywhere and anytime at all ♫
(Audience): ♫ N is for anywhere and anytime at all ♫
♫ Down here at TEDxTeen. ♫
(Audience): ♫ Down here at TEDxTeen. ♫
Alright, so give yourself a round of applause!
(Applause)
Okay, so, "InnerKid" started when I was 11 years old,
when I had this epiphany that even though I couldn't test
for another 7 years and not know about my genetic fate
I could still make the most out of every single day.
And there's two components to "InnerKid."
First of all, I decided that just because I was a young person
without a car, a boss, money or other source of "adult power"
didn't mean I couldn't change the world.
I mean young people when given the right tools, motivation,
and organization can often enact change better than most adults can.
Secondly, I refused to grow up,
and I don't mean like I went to Neverland and pulled a Peter Pan.
After watching the adults around me talk about
how childhood was the best time of their life
and nothing has matched it.
As a pre-teen I was like, "Well, why does it have to be that way?"
Why does the best part of life have to be at the beginning
and everything else has to be downhill from there?
Can't you just take the fun, the essence, out of childhood
and just spread it over the course of your entire life?
And because of this ability to harness my inner kid
I become happier and more satisfied as I slowly adjust to this
absolutely ridiculous concept we call adulthood.
So, now that I wasn't afraid to take action,
I started the "Green Tiger Campaign" at my high school.
This sustainability club and its flagship project "The Green Tiger Garden"
has been recognised by the likes of the White House family and Parade magazine –
Family Circle and Parade magazine, excuse me,
DoSomething. org up in the back
and the "We are Family" foundation's "Three Dot Dash" program.
And "Green Tiger" really lives by the InnerKid philosophy
we don't even call our work work.
For example, our garden fun days, which are held every Saturday morning,
are filled with food, which is delicious,
music, which is awesome and we dance along to, and friends.
My best friend of all times, I met him through "Green Tigers"
and he has had such an influence on my life.
And while I received a lot of recognition for having fun and saving the world,
which is ridiculous, I would have done it without all of it.
I love what I do and if I didn't I would've changed track by now.
Why would I spend time doing something I didn't like?
I believed so much in the power of fun to save the world.
Now, "InnerKid" is leading me on a different track.
Now that I'm 18 years old, as of this past October,
I will be testing for Huntington's disease this May.
I'll be making a documentary that will record every word,
moment, laugh, tear, everything.
People need to know about this disease.
Genetic testing is a huge controversy of our time,
but Huntington's disease in itself can potentially
unlock a cure to other diseases as I mentioned before.
And some of you might be wondering why am I giving a speech
about the wisdom of not knowing, when I've decided to know
about my medical future, and you have a point there.
But for me the wisdom of not knowing began
when I was 11 years old,
when I decided that I wasn't going to waste one more second.
And if I had known whether I was gene positive or negative back then
I may have never found the urgency, motivation, desire
to create the "Green Tiger" campaign.
I may have never been vigorously shaken by Vice President Joe Biden,
Stephen Colbert may have never quenched his thirst with
a "Green Tiger" re-usable water bottle
after eating an Eiffel tower of bacon on his TV show
and I may have never made it to this stage.
But, then again, maybe I would have.
It seems that the ultimate wisdom of not knowing
is being able to determine when you should follow these crazy ideas of yours.
None of us in this room know what is going to happen to us tomorrow,
try as you might.
Despite this so many of you are moving ahead anyway
and following those crazy ideas and passions regardless of whether
society tells you that taking that risk is acceptable or not.
And I want to go back to the first question and think,
"What would you do if you had 100 years?"
Clean slate, you can fill it with success, joy, failure, triumph, sadness, anything.
But I also want you to think about – right now –
what are you doing at this moment to make sure
you are living your life to its fullest potential, to its most fun?
How are you harnessing your inner kid?
Like I said, life is full of chances and risks and we can't predict anything,
yet, it is the wisest of us all who will forge ahead anyway
to leave a heartfelt legacy on this planet,
regardless of whether we have a day or a century ahead of us.
Thank you.
(Applause)