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  • 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,