The beautiful balance between courage and fear

When we're young, we're innocently brave,

and we fearlessly dream
about what our lives might be like.

Maybe you wanted to be an astronaut
or a rocket scientist.

Maybe you dreamed
of traveling to every continent.

Since I was very young,

I dreamed of working
for the United Nations

in some of the most difficult
countries in the world.

And thanks to a lot of courage

that dream came true.

But here's the thing about courage:

it doesn't just appear
whenever we need it.

It's the result of tough
reflection and real work,

involving the balance
between fear and bravery.

Without fear, we'll do foolish things.

And without courage,
we'll never step into the unknown.

The balance of the two
is where the magic lies,

and it's a balance
we all deal with every day.

First, a word about my fancy wheels.

I haven't always used a wheelchair.

I grew up like many of you,

running, jumping and dancing.

I love to dance.

However, in my mid-twenties,

I began to experience
a series of inexplicable falls.

And a few years later,

I was diagnosed with a recessive
genetic condition

called hereditary inclusion body myopathy,

or HIBM.

It's a progressive muscle wasting disease

that affects all of my muscles
from head to toe.

HIBM is very rare.

In the United States there are
less than 200 people diagnosed.

To date, there is
no proved treatment or cure,

and within 10 to 15 years of its onset,

HIBM typically leads to quadriplegia,

which is why I now use a wheelchair.

When I was first diagnosed,
everything changed.

It was frightening news,

because I had no experience
with chronic illness or disabilities.

And I had no idea
how the disease might progress.

But what was most disheartening

was to listen to other people advise me

to limit my ambitions and dreams,

and to change my expectations
of what to expect from life.

"You should quit
your international career."

"No one will marry you this way."

"You would be selfish to have children."

The fact that someone who wasn't me

was putting limitations
on my dreams and ambitions

was preposterous.

And unacceptable.

So I ignored them.

(Cheers and applause)

I did get married.

And I decided for myself
not to have children.

And I continued my career
with the United Nations

after my diagnosis,

going to work for two years in Angola,

a country recovering
from 27 years of brutal civil war.

However, it would be another five years

until I officially declared
my diagnosis to my employer.

Because I was afraid

that they would question my capacity
to manage and I'd lose my job.

I was working in countries
where polio had been common,

so when I overheard someone say

that they thought
I might have survived polio,

I thought my secret was safe.

No one asked why I was limping.

So I didn't say anything.

It took me over a decade

to internalize the severity of HIBM,

even as basic tasks and functions
became increasingly difficult.

Yet, I continued to pursue my dream
of working all over the world,

and was even appointed
as a disability focal point

for UNICEF in Haiti,

where I served for two years
after the devastating 2010 earthquake.

And then my work brought me
to the United States.

And even as the disease
progressed significantly

and I needed leg braces
and a walker to get around,

I still longed for adventure.

And this time,

I started dreaming
of a grand outdoor adventure.

And what's more grand
than the Grand Canyon?

Did you know that for every
five million people who visit the Rim

only one percent go down
to the canyon's base?

I wanted to be a part of that one percent.

The only thing is --

(Applause)

The only thing is that the Grand Canyon
isn't exactly accessible.

I was going to need some assistance

to get down the 5,000-foot descent
of vertical loose terrain.

Now, when I face obstacles,

fear doesn't necessarily
immediately set in,

because I assume that one way or another,

I'll figure it out.

And in this case, my thought was,

well, if I can't walk down,

I could learn to ride a horse.

So that's what I did.

And with that fateful decision

began a four-year commitment,

tossing back and forth
between fear and courage

to undertake a 12-day expedition.

Four days on horseback
to cross Grand Canyon rim to rim,

and eight days rafting
150 miles of the Colorado River,

all with a film crew in tow.

Spoiler alert -- we made it.

But not without showing me
how my deepest fear

can somehow manifest
a mirror response of equal courage.

On April 13, 2018,

sitting eight feet above the ground,

riding a mustang horse named Sheriff,

my first impression of Grand Canyon

was one of shock and terror.

Who knew I had a fear of heights.

(Laughter)

But there was no giving up now.

I mustered up every ounce
of courage inside me

to not let my fear get the best of me.

Embarking on the South Rim,

all I could do to keep myself composed

was to breathe deeply,
stare up into the clouds

and focus on my team's voices.

But then, in the first hour,
disaster struck.

Unable to hold myself
upright in the saddle,

going down an oversized step,

I flung forward and smacked my face
on the back of the horse's head.

There was panic,

my head hurt fiercely,

but the path was too narrow
for us to dismount.

Only at the halfway point at 2,300 feet,

at least another two hours down,

could we stop and remove my helmet

and see the egg-sized bump
protruding from my forehead.

For all of that planning and gear,

how is it that we didn't
even have an ice pack?

(Laughter)

Luckily for all of us,
the swelling came outwards,

and would drain into my face
as two fantastic black eyes

which is an amazing way to look
in a documentary film.

(Laughter)

(Applause and cheers)

This was not an easy, peaceful journey,

and yet, that was exactly the point.

Even though I was afraid
to get back into the saddle,

I got back in.

The descent alone to the canyon floor

took a total of 10 hours

and that was just day one of four riding.

Next came the mighty rapids.

The Colorado River in the Grand Canyon

has some of the highest
white water in the country.

And just to be prepared
in case we should capsize,

we'd practice having me swim
through a smaller rapid.

And it's safe to say it wasn't glamorous.

(Laughter)

I took my breath
in the wrong part of the wave,

choked on river water

and was unable to steer myself.

Yes, it was scary,

but it was also fantastic.

Waterfalls, slick canyons

and a couple billion years of bedrock

that seemed to change color
throughout the day.

The Grand Canyon is true wilderness

and worthy of all of its accolades.

(Applause)

The expedition,

all that planning and the trip itself,

showed me a level of fear
I had never experienced before.

But more importantly,

it showed me how boldly
courageous I can be.

My Grand Canyon journey was not easy.

This was not a vision
of an Amazonian woman

effortlessly making her way
through epic scenery.

This was me crying,

exhausted and beat up with two black eyes.

It was scary,

it was stressful,

it was exhilarating.

Now that the trip is over,

it's easy to be blasé
about what we achieved.

I know I want to raft the river again.

This time, all 277 miles of it.

(Applause)

But I also know that I would never do
the horseback-riding part again.

(Laughter)

It's just too dangerous.

And that's my real point.

I'm not just here
to show you my film footage.

I'm here to remind us all

that life is really just a lesson

in finding the balance
between fear and courage.

And understanding what is
and what isn't a good idea.

(Laughter)

Life is already scary,

so for our dreams to come true,
we need to be brave.

In facing my fears

and finding the courage
to push through them,

I swear my life has been extraordinary.

So live big

and try to let your courage
outweigh your fear.

You never know where it might take you.

Thank you.

(Applause and cheers)