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