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