0:00:01.458,0:00:04.250 When we're young, we're innocently brave, 0:00:04.292,0:00:07.809 and we fearlessly dream[br]about what our lives might be like. 0:00:07.833,0:00:11.351 Maybe you wanted to be an astronaut[br]or a rocket scientist. 0:00:11.375,0:00:15.143 Maybe you dreamed[br]of traveling to every continent. 0:00:15.167,0:00:16.851 Since I was very young, 0:00:16.875,0:00:19.059 I dreamed of working[br]for the United Nations 0:00:19.083,0:00:22.059 in some of the most difficult[br]countries in the world. 0:00:22.083,0:00:24.393 And thanks to a lot of courage 0:00:24.417,0:00:26.518 that dream came true. 0:00:26.542,0:00:28.559 But here's the thing about courage: 0:00:28.583,0:00:31.184 it doesn't just appear[br]whenever we need it. 0:00:31.208,0:00:34.518 It's the result of tough[br]reflection and real work, 0:00:34.542,0:00:39.018 involving the balance[br]between fear and bravery. 0:00:39.042,0:00:41.851 Without fear, we'll do foolish things. 0:00:41.875,0:00:45.893 And without courage,[br]we'll never step into the unknown. 0:00:45.917,0:00:48.768 The balance of the two[br]is where the magic lies, 0:00:48.792,0:00:51.833 and it's a balance[br]we all deal with every day. 0:00:52.958,0:00:55.393 First, a word about my fancy wheels. 0:00:55.417,0:00:57.476 I haven't always used a wheelchair. 0:00:57.500,0:00:58.976 I grew up like many of you, 0:00:59.000,0:01:01.184 running, jumping and dancing. 0:01:01.208,0:01:04.059 I love to dance. 0:01:04.083,0:01:06.351 However, in my mid-twenties, 0:01:06.375,0:01:10.476 I began to experience[br]a series of inexplicable falls. 0:01:10.500,0:01:11.809 And a few years later, 0:01:11.833,0:01:15.184 I was diagnosed with a recessive[br]genetic condition 0:01:15.208,0:01:18.851 called hereditary inclusion body myopathy, 0:01:18.875,0:01:21.393 or HIBM. 0:01:21.417,0:01:24.226 It's a progressive muscle wasting disease 0:01:24.250,0:01:27.893 that affects all of my muscles[br]from head to toe. 0:01:27.917,0:01:30.059 HIBM is very rare. 0:01:30.083,0:01:35.476 In the United States there are[br]less than 200 people diagnosed. 0:01:35.500,0:01:39.684 To date, there is[br]no proved treatment or cure, 0:01:39.708,0:01:42.768 and within 10 to 15 years of its onset, 0:01:42.792,0:01:45.684 HIBM typically leads to quadriplegia, 0:01:45.708,0:01:48.643 which is why I now use a wheelchair. 0:01:48.667,0:01:52.268 When I was first diagnosed,[br]everything changed. 0:01:52.292,0:01:54.268 It was frightening news, 0:01:54.292,0:01:58.643 because I had no experience[br]with chronic illness or disabilities. 0:01:58.667,0:02:03.059 And I had no idea[br]how the disease might progress. 0:02:03.083,0:02:05.184 But what was most disheartening 0:02:05.208,0:02:08.351 was to listen to other people advise me 0:02:08.375,0:02:10.518 to limit my ambitions and dreams, 0:02:10.542,0:02:14.208 and to change my expectations[br]of what to expect from life. 0:02:15.208,0:02:18.018 "You should quit[br]your international career." 0:02:18.042,0:02:20.684 "No one will marry you this way." 0:02:20.708,0:02:23.417 "You would be selfish to have children." 0:02:24.750,0:02:26.976 The fact that someone who wasn't me 0:02:27.000,0:02:29.851 was putting limitations[br]on my dreams and ambitions 0:02:29.875,0:02:31.643 was preposterous. 0:02:31.667,0:02:33.292 And unacceptable. 0:02:34.875,0:02:36.143 So I ignored them. 0:02:36.167,0:02:42.684 (Cheers and applause) 0:02:42.708,0:02:44.351 I did get married. 0:02:44.375,0:02:48.184 And I decided for myself[br]not to have children. 0:02:48.208,0:02:51.518 And I continued my career[br]with the United Nations 0:02:51.542,0:02:52.809 after my diagnosis, 0:02:52.833,0:02:55.268 going to work for two years in Angola, 0:02:55.292,0:02:59.208 a country recovering[br]from 27 years of brutal civil war. 0:03:00.125,0:03:02.059 However, it would be another five years 0:03:02.083,0:03:05.893 until I officially declared[br]my diagnosis to my employer. 0:03:05.917,0:03:07.226 Because I was afraid 0:03:07.250,0:03:11.601 that they would question my capacity[br]to manage and I'd lose my job. 0:03:11.625,0:03:14.851 I was working in countries[br]where polio had been common, 0:03:14.875,0:03:16.643 so when I overheard someone say 0:03:16.667,0:03:19.393 that they thought[br]I might have survived polio, 0:03:19.417,0:03:22.018 I thought my secret was safe. 0:03:22.042,0:03:24.351 No one asked why I was limping. 0:03:24.375,0:03:26.559 So I didn't say anything. 0:03:26.583,0:03:27.934 It took me over a decade 0:03:27.958,0:03:31.143 to internalize the severity of HIBM, 0:03:31.167,0:03:35.809 even as basic tasks and functions[br]became increasingly difficult. 0:03:35.833,0:03:39.893 Yet, I continued to pursue my dream[br]of working all over the world, 0:03:39.917,0:03:42.309 and was even appointed[br]as a disability focal point 0:03:42.333,0:03:44.226 for UNICEF in Haiti, 0:03:44.250,0:03:48.125 where I served for two years[br]after the devastating 2010 earthquake. 0:03:49.000,0:03:51.893 And then my work brought me[br]to the United States. 0:03:51.917,0:03:54.684 And even as the disease[br]progressed significantly 0:03:54.708,0:03:57.726 and I needed leg braces[br]and a walker to get around, 0:03:57.750,0:04:00.726 I still longed for adventure. 0:04:00.750,0:04:02.018 And this time, 0:04:02.042,0:04:05.434 I started dreaming[br]of a grand outdoor adventure. 0:04:05.458,0:04:08.917 And what's more grand[br]than the Grand Canyon? 0:04:09.875,0:04:14.268 Did you know that for every[br]five million people who visit the Rim 0:04:14.292,0:04:17.542 only one percent go down[br]to the canyon's base? 0:04:18.417,0:04:21.393 I wanted to be a part of that one percent. 0:04:21.417,0:04:22.934 The only thing is -- 0:04:22.958,0:04:27.309 (Applause) 0:04:27.333,0:04:31.726 The only thing is that the Grand Canyon[br]isn't exactly accessible. 0:04:31.750,0:04:33.476 I was going to need some assistance 0:04:33.500,0:04:38.434 to get down the 5,000-foot descent[br]of vertical loose terrain. 0:04:38.458,0:04:40.018 Now, when I face obstacles, 0:04:40.042,0:04:43.809 fear doesn't necessarily[br]immediately set in, 0:04:43.833,0:04:46.643 because I assume that one way or another, 0:04:46.667,0:04:48.226 I'll figure it out. 0:04:48.250,0:04:50.476 And in this case, my thought was, 0:04:50.500,0:04:52.643 well, if I can't walk down, 0:04:52.667,0:04:54.851 I could learn to ride a horse. 0:04:54.875,0:04:56.809 So that's what I did. 0:04:56.833,0:04:58.643 And with that fateful decision 0:04:58.667,0:05:00.643 began a four-year commitment, 0:05:00.667,0:05:03.726 tossing back and forth[br]between fear and courage 0:05:03.750,0:05:06.476 to undertake a 12-day expedition. 0:05:06.500,0:05:09.726 Four days on horseback[br]to cross Grand Canyon rim to rim, 0:05:09.750,0:05:13.768 and eight days rafting[br]150 miles of the Colorado River, 0:05:13.792,0:05:15.726 all with a film crew in tow. 0:05:15.750,0:05:18.059 Spoiler alert -- we made it. 0:05:18.083,0:05:20.893 But not without showing me[br]how my deepest fear 0:05:20.917,0:05:25.768 can somehow manifest[br]a mirror response of equal courage. 0:05:25.792,0:05:28.976 On April 13, 2018, 0:05:29.000,0:05:30.726 sitting eight feet above the ground, 0:05:30.750,0:05:32.976 riding a mustang horse named Sheriff, 0:05:33.000,0:05:35.268 my first impression of Grand Canyon 0:05:35.292,0:05:38.184 was one of shock and terror. 0:05:38.208,0:05:41.018 Who knew I had a fear of heights. 0:05:41.042,0:05:42.309 (Laughter) 0:05:42.333,0:05:44.851 But there was no giving up now. 0:05:44.875,0:05:48.601 I mustered up every ounce[br]of courage inside me 0:05:48.625,0:05:52.101 to not let my fear get the best of me. 0:05:52.125,0:05:53.934 Embarking on the South Rim, 0:05:53.958,0:05:56.684 all I could do to keep myself composed 0:05:56.708,0:06:00.351 was to breathe deeply,[br]stare up into the clouds 0:06:00.375,0:06:03.893 and focus on my team's voices. 0:06:03.917,0:06:08.476 But then, in the first hour,[br]disaster struck. 0:06:08.500,0:06:10.851 Unable to hold myself[br]upright in the saddle, 0:06:10.875,0:06:12.851 going down an oversized step, 0:06:12.875,0:06:17.393 I flung forward and smacked my face[br]on the back of the horse's head. 0:06:17.417,0:06:18.684 There was panic, 0:06:18.708,0:06:20.268 my head hurt fiercely, 0:06:20.292,0:06:23.976 but the path was too narrow[br]for us to dismount. 0:06:24.000,0:06:26.809 Only at the halfway point at 2,300 feet, 0:06:26.833,0:06:29.059 at least another two hours down, 0:06:29.083,0:06:31.184 could we stop and remove my helmet 0:06:31.208,0:06:35.143 and see the egg-sized bump[br]protruding from my forehead. 0:06:35.167,0:06:37.226 For all of that planning and gear, 0:06:37.250,0:06:40.059 how is it that we didn't[br]even have an ice pack? 0:06:40.083,0:06:41.101 (Laughter) 0:06:41.125,0:06:44.018 Luckily for all of us,[br]the swelling came outwards, 0:06:44.042,0:06:48.059 and would drain into my face[br]as two fantastic black eyes 0:06:48.083,0:06:51.143 which is an amazing way to look[br]in a documentary film. 0:06:51.167,0:06:53.226 (Laughter) 0:06:53.250,0:06:58.309 (Applause and cheers) 0:06:58.333,0:07:00.476 This was not an easy, peaceful journey, 0:07:00.500,0:07:02.559 and yet, that was exactly the point. 0:07:02.583,0:07:05.184 Even though I was afraid[br]to get back into the saddle, 0:07:05.208,0:07:06.559 I got back in. 0:07:06.583,0:07:08.934 The descent alone to the canyon floor 0:07:08.958,0:07:10.851 took a total of 10 hours 0:07:10.875,0:07:13.768 and that was just day one of four riding. 0:07:13.792,0:07:15.851 Next came the mighty rapids. 0:07:15.875,0:07:17.851 The Colorado River in the Grand Canyon 0:07:17.875,0:07:20.768 has some of the highest[br]white water in the country. 0:07:20.792,0:07:23.643 And just to be prepared[br]in case we should capsize, 0:07:23.667,0:07:26.476 we'd practice having me swim[br]through a smaller rapid. 0:07:26.500,0:07:29.184 And it's safe to say it wasn't glamorous. 0:07:29.208,0:07:30.268 (Laughter) 0:07:30.292,0:07:32.809 I took my breath[br]in the wrong part of the wave, 0:07:32.833,0:07:34.268 choked on river water 0:07:34.292,0:07:36.809 and was unable to steer myself. 0:07:36.833,0:07:38.393 Yes, it was scary, 0:07:38.417,0:07:40.809 but it was also fantastic. 0:07:40.833,0:07:42.976 Waterfalls, slick canyons 0:07:43.000,0:07:44.934 and a couple billion years of bedrock 0:07:44.958,0:07:47.434 that seemed to change color[br]throughout the day. 0:07:47.458,0:07:50.351 The Grand Canyon is true wilderness 0:07:50.375,0:07:53.059 and worthy of all of its accolades. 0:07:53.083,0:07:56.792 (Applause) 0:08:00.833,0:08:02.226 The expedition, 0:08:02.250,0:08:05.184 all that planning and the trip itself, 0:08:05.208,0:08:10.226 showed me a level of fear[br]I had never experienced before. 0:08:10.250,0:08:11.643 But more importantly, 0:08:11.667,0:08:16.059 it showed me how boldly[br]courageous I can be. 0:08:16.083,0:08:18.351 My Grand Canyon journey was not easy. 0:08:18.375,0:08:21.018 This was not a vision[br]of an Amazonian woman 0:08:21.042,0:08:24.559 effortlessly making her way[br]through epic scenery. 0:08:24.583,0:08:26.268 This was me crying, 0:08:26.292,0:08:30.184 exhausted and beat up with two black eyes. 0:08:30.208,0:08:31.601 It was scary, 0:08:31.625,0:08:33.601 it was stressful, 0:08:33.625,0:08:35.917 it was exhilarating. 0:08:37.000,0:08:38.268 Now that the trip is over, 0:08:38.292,0:08:41.809 it's easy to be blasé[br]about what we achieved. 0:08:41.833,0:08:44.351 I know I want to raft the river again. 0:08:44.375,0:08:47.768 This time, all 277 miles of it. 0:08:47.792,0:08:51.226 (Applause) 0:08:51.250,0:08:54.601 But I also know that I would never do[br]the horseback-riding part again. 0:08:54.625,0:08:56.268 (Laughter) 0:08:56.292,0:08:58.851 It's just too dangerous. 0:08:58.875,0:09:00.518 And that's my real point. 0:09:00.542,0:09:03.434 I'm not just here[br]to show you my film footage. 0:09:03.458,0:09:05.476 I'm here to remind us all 0:09:05.500,0:09:07.726 that life is really just a lesson 0:09:07.750,0:09:10.809 in finding the balance[br]between fear and courage. 0:09:10.833,0:09:15.643 And understanding what is[br]and what isn't a good idea. 0:09:15.667,0:09:16.893 (Laughter) 0:09:16.917,0:09:18.643 Life is already scary, 0:09:18.667,0:09:22.393 so for our dreams to come true,[br]we need to be brave. 0:09:22.417,0:09:23.768 In facing my fears 0:09:23.792,0:09:26.393 and finding the courage[br]to push through them, 0:09:26.417,0:09:30.101 I swear my life has been extraordinary. 0:09:30.125,0:09:31.559 So live big 0:09:31.583,0:09:34.518 and try to let your courage[br]outweigh your fear. 0:09:34.542,0:09:37.476 You never know where it might take you. 0:09:37.500,0:09:38.768 Thank you. 0:09:38.792,0:09:42.250 (Applause and cheers)