0:00:01.468,0:00:04.285 When we're young, we're innocently brave, 0:00:04.309,0:00:07.419 and we fearlessly dream[br]about what our lives might be like. 0:00:07.841,0:00:11.371 Maybe you wanted to be an astronaut[br]or a rocket scientist. 0:00:11.395,0:00:14.712 Maybe you dreamed[br]of traveling to every continent. 0:00:15.157,0:00:16.871 Since I was very young, 0:00:16.895,0:00:19.045 I dreamed of working[br]for the United Nations 0:00:19.069,0:00:21.790 in some of the most difficult[br]countries in the world. 0:00:22.101,0:00:24.410 And thanks to a lot of courage, 0:00:24.434,0:00:25.834 that dream came true. 0:00:26.561,0:00:28.546 But here's the thing about courage: 0:00:28.570,0:00:31.204 it doesn't just appear[br]whenever we need it. 0:00:31.228,0:00:34.537 It's the result of tough[br]reflection and real work, 0:00:34.561,0:00:38.267 involving the balance[br]between fear and bravery. 0:00:39.022,0:00:41.555 Without fear, we'll do foolish things. 0:00:41.863,0:00:45.418 And without courage,[br]we'll never step into the unknown. 0:00:45.903,0:00:48.760 The balance of the two[br]is where the magic lies, 0:00:48.784,0:00:51.857 and it's a balance we all[br]deal with every day. 0:00:52.956,0:00:55.376 First, a word about my fancy wheels. 0:00:55.400,0:00:57.471 I haven't always used a wheelchair. 0:00:57.495,0:00:58.971 I grew up like many of you, 0:00:58.995,0:01:01.178 running, jumping and dancing. 0:01:01.202,0:01:03.477 I love to dance. 0:01:04.083,0:01:06.336 However, in my mid-twenties, 0:01:06.360,0:01:10.046 I began to experience a series[br]of inexplicable falls. 0:01:10.487,0:01:11.789 And a few years later, 0:01:11.813,0:01:15.194 I was diagnosed with a recessive[br]genetic condition 0:01:15.218,0:01:18.852 called hereditary inclusion body myopathy, 0:01:18.876,0:01:20.614 or HIBM. 0:01:21.416,0:01:24.244 It's a progressive muscle wasting disease 0:01:24.268,0:01:27.275 that affects all of my muscles[br]from head to toe. 0:01:27.934,0:01:30.045 HIBM is very rare. 0:01:30.069,0:01:34.958 In the United States there are less[br]than 200 people diagnosed. 0:01:35.514,0:01:39.704 To date, there is no[br]proved treatment or cure, 0:01:39.728,0:01:42.760 and within 10 to 15 years of its onset, 0:01:42.784,0:01:45.664 HIBM typically leads to quadriplegia, 0:01:45.688,0:01:47.894 which is why I now use a wheelchair. 0:01:48.680,0:01:51.862 When I was first diagnosed,[br]everything changed. 0:01:52.299,0:01:54.283 It was frightening news, 0:01:54.307,0:01:58.302 because I had no experience[br]with chronic illness or disabilities. 0:01:58.649,0:02:02.426 And I had no idea how[br]the disease might progress. 0:02:03.083,0:02:05.170 But what was most disheartening 0:02:05.194,0:02:08.337 was to listen to other people advise me 0:02:08.361,0:02:10.527 to limit my ambitions and dreams, 0:02:10.551,0:02:14.229 and to change my expectations[br]of what to expect from life. 0:02:15.198,0:02:18.007 "You should quit[br]your international career." 0:02:18.031,0:02:20.231 "No one will marry you this way." 0:02:20.729,0:02:23.396 "You would be selfish to have children." 0:02:24.744,0:02:26.983 The fact that someone who wasn't me 0:02:27.007,0:02:29.865 was putting limitations[br]on my dreams and ambitions 0:02:29.889,0:02:31.188 was preposterous. 0:02:31.665,0:02:33.299 And unacceptable. 0:02:34.875,0:02:36.081 So I ignored them. 0:02:36.105,0:02:42.676 (Cheers and applause) 0:02:42.700,0:02:44.033 I did get married. 0:02:44.371,0:02:47.504 And I decided for myself[br]not to have children. 0:02:48.188,0:02:51.514 And I continued my career[br]with the United Nations 0:02:51.538,0:02:52.768 after my diagnosis, 0:02:52.792,0:02:55.268 going to work for two years in Angola, 0:02:55.292,0:02:59.275 a country recovering from 27 years[br]of brutal civil war. 0:03:00.117,0:03:02.045 However, it would be another five years 0:03:02.069,0:03:05.501 until I officially declared[br]my diagnosis to my employer. 0:03:05.919,0:03:07.213 Because I was afraid 0:03:07.237,0:03:11.093 that they would question my capacity[br]to manage and I'd lose my job. 0:03:11.625,0:03:14.848 I was working in countries[br]where polio had been common, 0:03:14.872,0:03:16.650 so when I overheard someone say 0:03:16.674,0:03:19.396 that they thought[br]I might have survived polio, 0:03:19.420,0:03:21.353 I thought my secret was safe. 0:03:22.039,0:03:24.348 No one asked why I was limping. 0:03:24.372,0:03:26.039 So I didn't say anything. 0:03:26.596,0:03:27.953 It took me over a decade 0:03:27.977,0:03:31.128 to internalize the severity of HIBM, 0:03:31.152,0:03:35.199 even as basic tasks and functions[br]became increasingly difficult. 0:03:35.839,0:03:39.879 Yet, I continued to pursue my dream[br]of working all over the world, 0:03:39.903,0:03:42.318 and was appointed[br]as a disability focal point 0:03:42.342,0:03:44.220 for UNICEF in Haiti, 0:03:44.244,0:03:48.109 where I served for two years[br]after the devastating 2010 earthquake. 0:03:48.998,0:03:51.912 And then my work brought me[br]to the United States. 0:03:51.936,0:03:54.698 And even as the disease[br]progressed significantly, 0:03:54.722,0:03:57.745 and I needed leg braces[br]and a walker to get around, 0:03:57.769,0:04:00.110 I still longed for adventure. 0:04:00.752,0:04:01.903 And this time, 0:04:01.927,0:04:05.442 I started dreaming of a grand[br]outdoor adventure. 0:04:05.466,0:04:08.870 And what's more grand[br]than the Grand Canyon? 0:04:09.887,0:04:14.283 Did you know that for every[br]five million people who visit the Rim 0:04:14.307,0:04:17.680 only one percent go down[br]to the canyon's base? 0:04:18.419,0:04:20.969 I wanted to be a part of that one percent. 0:04:21.419,0:04:22.926 The only thing is -- 0:04:22.950,0:04:27.309 (Applause) 0:04:27.333,0:04:31.214 The only thing is is that the Grand Canyon[br]isn't exactly accessible. 0:04:31.730,0:04:33.477 I was going to need some assistance 0:04:33.501,0:04:37.785 to get down the 5,000-foot descent[br]of vertical loose terrain. 0:04:38.472,0:04:40.028 Now, when I face obstacles, 0:04:40.052,0:04:43.813 fear doesn't necessarily[br]immediately set in, 0:04:43.837,0:04:46.639 because I assume that one way or another, 0:04:46.663,0:04:47.929 I'll figure it out. 0:04:48.268,0:04:50.490 And in this case, my thought was, 0:04:50.514,0:04:52.633 well, if I can't walk down, 0:04:52.657,0:04:54.855 I could learn to ride a horse. 0:04:54.879,0:04:56.279 So that's what I did. 0:04:56.831,0:04:58.649 And with that fateful decision, 0:04:58.673,0:05:00.633 began a four-year commitment, 0:05:00.657,0:05:03.728 tossing back and forth[br]between fear and courage 0:05:03.752,0:05:06.466 to undertake a 12-day expedition. 0:05:06.490,0:05:09.712 Four days on horseback to cross[br]Grand Canyon rim to rim, 0:05:09.736,0:05:13.768 and eight days rafting 150 miles[br]of the Colorado River, 0:05:13.792,0:05:15.728 all with a film crew in tow. 0:05:15.752,0:05:17.767 Spoiler alert -- we made it. 0:05:18.069,0:05:20.962 But not without showing me[br]how my deepest fear 0:05:20.986,0:05:25.291 can somehow manifest[br]a mirror response of equal courage. 0:05:25.784,0:05:28.966 On April 13, 2018, 0:05:28.990,0:05:30.719 sitting eight feet above the ground, 0:05:30.743,0:05:32.990 riding a mustang horse named Sheriff, 0:05:33.014,0:05:35.268 my first impression of Grand Canyon 0:05:35.292,0:05:37.688 was one of shock and terror. 0:05:38.196,0:05:40.720 Who knew I had a fear of heights. 0:05:41.053,0:05:42.212 (Laughter) 0:05:42.236,0:05:44.303 But there was no giving up now. 0:05:44.895,0:05:48.615 I mustered up every ounce[br]of courage inside me 0:05:48.639,0:05:51.421 to not let my fear get the best of me. 0:05:52.133,0:05:53.990 Embarking on the South Rim, 0:05:54.014,0:05:56.680 all I could do to keep myself composed 0:05:56.704,0:06:00.450 was to breathe deeply,[br]stare up into the clouds, 0:06:00.474,0:06:03.505 and focus on my team's voices. 0:06:03.927,0:06:07.746 But then, in the first hour,[br]disaster struck. 0:06:08.483,0:06:10.840 Unable to hold myself[br]upright in the saddle, 0:06:10.864,0:06:12.856 going down an oversized step, 0:06:12.880,0:06:17.382 I flung forward and smacked my face[br]on the back of the horse's head. 0:06:17.406,0:06:18.652 There was panic, 0:06:18.676,0:06:20.247 my head hurt fiercely, 0:06:20.271,0:06:23.961 but the path was too narrow[br]for us to dismount. 0:06:23.985,0:06:26.799 Only at the halfway point at 2,300 feet, 0:06:26.823,0:06:29.045 at least another two hours down, 0:06:29.069,0:06:31.204 could we stop and remove my helmet 0:06:31.228,0:06:34.515 and see the egg-sized bump[br]protruding from my forehead. 0:06:35.149,0:06:37.236 For all of that planning and gear, 0:06:37.260,0:06:40.069 how is it that we didn't[br]even have an ice pack? 0:06:40.093,0:06:41.093 (Laughter) 0:06:41.141,0:06:44.006 Luckily for all of us,[br]the swelling came outwards, 0:06:44.030,0:06:48.078 and would drain into my face[br]as two fantastic black eyes 0:06:48.102,0:06:51.137 which is an amazing way to look[br]in a documentary film. 0:06:51.161,0:06:53.244 (Laughter) 0:06:53.268,0:06:58.295 (Applause and cheers) 0:06:58.319,0:07:00.467 This was not an easy, peaceful journey, 0:07:00.491,0:07:02.557 and yet, that was exactly the point. 0:07:02.581,0:07:05.192 Even though I was afraid[br]to get back into the saddle, 0:07:05.216,0:07:06.498 I got back in. 0:07:06.522,0:07:08.878 The descent alone to the canyon floor 0:07:08.902,0:07:10.869 took a total of 10 hours 0:07:10.893,0:07:13.783 and that was just day one of four riding. 0:07:13.807,0:07:15.839 Next came the mighty rapids. 0:07:15.863,0:07:17.871 The Colorado River in the Grand Canyon 0:07:17.895,0:07:20.768 has some of the highest[br]white water in the country. 0:07:20.792,0:07:23.642 And just to be prepared[br]in case we should capsize, 0:07:23.666,0:07:26.466 we'd practice having me swim[br]through a smaller rapid. 0:07:26.490,0:07:29.196 And it's safe to say it wasn't glamorous. 0:07:29.220,0:07:30.220 (Laughter) 0:07:30.284,0:07:32.813 I took my breath[br]in the wrong part of the wave, 0:07:32.837,0:07:34.268 choked on river water 0:07:34.292,0:07:36.815 and was unable to steer myself. 0:07:36.839,0:07:38.403 Yes, it was scary, 0:07:38.427,0:07:40.474 but it was also fantastic. 0:07:40.847,0:07:42.966 Waterfalls, slick canyons 0:07:42.990,0:07:44.955 and a couple billion years of bedrock 0:07:44.979,0:07:47.423 that seemed to change color[br]throughout the day. 0:07:47.447,0:07:50.344 The Grand Canyon is true wilderness 0:07:50.368,0:07:53.434 and worthy of all of its accolades. 0:07:53.458,0:08:00.283 (Applause) 0:08:00.849,0:08:02.238 The expedition, 0:08:02.262,0:08:05.183 all that planning and the trip itself, 0:08:05.207,0:08:09.627 showed me a level of fear[br]I had never experienced before. 0:08:10.246,0:08:11.656 But more importantly, 0:08:11.680,0:08:15.426 it showed me how boldly[br]courageous I can be. 0:08:16.093,0:08:18.371 My Grand Canyon journey was not easy. 0:08:18.395,0:08:21.022 This was not a vision[br]of an Amazonian woman 0:08:21.046,0:08:24.140 effortlessly making her way[br]through epic scenery. 0:08:24.585,0:08:26.252 This was me crying, 0:08:26.276,0:08:29.921 exhausted and beat up with two black eyes. 0:08:30.223,0:08:31.611 It was scary, 0:08:31.635,0:08:33.595 it was stressful, 0:08:33.619,0:08:35.706 it was exhilarating. 0:08:36.992,0:08:38.260 Now that the trip is over, 0:08:38.284,0:08:41.823 it's easy to be blaze[br]about what we achieved. 0:08:41.847,0:08:44.355 I know I want to raft the river again. 0:08:44.379,0:08:47.897 This time, all 277 miles of it. 0:08:47.921,0:08:51.223 (Applause) 0:08:51.247,0:08:54.585 But I also know that I would never do[br]the horseback-riding part again. 0:08:54.609,0:08:56.270 (Laughter) 0:08:56.294,0:08:58.373 It's just too dangerous. 0:08:58.891,0:09:00.525 And that's my real point. 0:09:00.549,0:09:03.056 I'm not just here[br]to show you my film footage. 0:09:03.478,0:09:05.462 I'm here to remind us all 0:09:05.486,0:09:07.731 that life is really just a lesson 0:09:07.755,0:09:10.799 in finding the balance[br]between fear and courage. 0:09:10.823,0:09:15.529 And understanding what is[br]and what isn't a good idea. 0:09:15.553,0:09:16.878 (Laughter) 0:09:16.902,0:09:18.648 Life is already scary, 0:09:18.672,0:09:21.914 so for our dreams to come true,[br]we need to be brave. 0:09:22.419,0:09:23.750 In facing my fears 0:09:23.774,0:09:26.412 and finding the courage[br]to push through them, 0:09:26.436,0:09:29.514 I swear my life has been extraordinary. 0:09:30.109,0:09:31.539 So live big 0:09:31.563,0:09:34.516 and try to let your courage[br]outweigh your fear. 0:09:34.540,0:09:37.020 You never know where it might take you. 0:09:37.503,0:09:38.654 Thank you. 0:09:38.678,0:09:42.238 (Applause and cheers)