1 00:00:01,468 --> 00:00:04,285 When we're young, we're innocently brave, 2 00:00:04,309 --> 00:00:07,419 and we fearlessly dream about what our lives might be like. 3 00:00:07,841 --> 00:00:11,371 Maybe you wanted to be an astronaut or a rocket scientist. 4 00:00:11,395 --> 00:00:14,712 Maybe you dreamed of traveling to every continent. 5 00:00:15,157 --> 00:00:16,871 Since I was very young, 6 00:00:16,895 --> 00:00:19,045 I dreamed of working for the United Nations 7 00:00:19,069 --> 00:00:21,790 in some of the most difficult countries in the world. 8 00:00:22,101 --> 00:00:24,410 And thanks to a lot of courage, 9 00:00:24,434 --> 00:00:25,834 that dream came true. 10 00:00:26,561 --> 00:00:28,546 But here's the thing about courage: 11 00:00:28,570 --> 00:00:31,204 it doesn't just appear whenever we need it. 12 00:00:31,228 --> 00:00:34,537 It's the result of tough reflection and real work, 13 00:00:34,561 --> 00:00:38,267 involving the balance between fear and bravery. 14 00:00:39,022 --> 00:00:41,555 Without fear, we'll do foolish things. 15 00:00:41,863 --> 00:00:45,418 And without courage, we'll never step into the unknown. 16 00:00:45,903 --> 00:00:48,760 The balance of the two is where the magic lies, 17 00:00:48,784 --> 00:00:51,857 and it's a balance we all deal with every day. 18 00:00:52,956 --> 00:00:55,376 First, a word about my fancy wheels. 19 00:00:55,400 --> 00:00:57,471 I haven't always used a wheelchair. 20 00:00:57,495 --> 00:00:58,971 I grew up like many of you, 21 00:00:58,995 --> 00:01:01,178 running, jumping and dancing. 22 00:01:01,202 --> 00:01:03,477 I love to dance. 23 00:01:04,083 --> 00:01:06,336 However, in my mid-twenties, 24 00:01:06,360 --> 00:01:10,046 I began to experience a series of inexplicable falls. 25 00:01:10,487 --> 00:01:11,789 And a few years later, 26 00:01:11,813 --> 00:01:15,194 I was diagnosed with a recessive genetic condition 27 00:01:15,218 --> 00:01:18,852 called hereditary inclusion body myopathy, 28 00:01:18,876 --> 00:01:20,614 or HIBM. 29 00:01:21,416 --> 00:01:24,244 It's a progressive muscle wasting disease 30 00:01:24,268 --> 00:01:27,275 that affects all of my muscles from head to toe. 31 00:01:27,934 --> 00:01:30,045 HIBM is very rare. 32 00:01:30,069 --> 00:01:34,958 In the United States there are less than 200 people diagnosed. 33 00:01:35,514 --> 00:01:39,704 To date, there is no proved treatment or cure, 34 00:01:39,728 --> 00:01:42,760 and within 10 to 15 years of its onset, 35 00:01:42,784 --> 00:01:45,664 HIBM typically leads to quadriplegia, 36 00:01:45,688 --> 00:01:47,894 which is why I now use a wheelchair. 37 00:01:48,680 --> 00:01:51,862 When I was first diagnosed, everything changed. 38 00:01:52,299 --> 00:01:54,283 It was frightening news, 39 00:01:54,307 --> 00:01:58,302 because I had no experience with chronic illness or disabilities. 40 00:01:58,649 --> 00:02:02,426 And I had no idea how the disease might progress. 41 00:02:03,083 --> 00:02:05,170 But what was most disheartening 42 00:02:05,194 --> 00:02:08,337 was to listen to other people advise me 43 00:02:08,361 --> 00:02:10,527 to limit my ambitions and dreams, 44 00:02:10,551 --> 00:02:14,229 and to change my expectations of what to expect from life. 45 00:02:15,198 --> 00:02:18,007 "You should quit your international career." 46 00:02:18,031 --> 00:02:20,231 "No one will marry you this way." 47 00:02:20,729 --> 00:02:23,396 "You would be selfish to have children." 48 00:02:24,744 --> 00:02:26,983 The fact that someone who wasn't me 49 00:02:27,007 --> 00:02:29,865 was putting limitations on my dreams and ambitions 50 00:02:29,889 --> 00:02:31,188 was preposterous. 51 00:02:31,665 --> 00:02:33,299 And unacceptable. 52 00:02:34,875 --> 00:02:36,081 So I ignored them. 53 00:02:36,105 --> 00:02:42,676 (Cheers and applause) 54 00:02:42,700 --> 00:02:44,033 I did get married. 55 00:02:44,371 --> 00:02:47,504 And I decided for myself not to have children. 56 00:02:48,188 --> 00:02:51,514 And I continued my career with the United Nations 57 00:02:51,538 --> 00:02:52,768 after my diagnosis, 58 00:02:52,792 --> 00:02:55,268 going to work for two years in Angola, 59 00:02:55,292 --> 00:02:59,275 a country recovering from 27 years of brutal civil war. 60 00:03:00,117 --> 00:03:02,045 However, it would be another five years 61 00:03:02,069 --> 00:03:05,501 until I officially declared my diagnosis to my employer. 62 00:03:05,919 --> 00:03:07,213 Because I was afraid 63 00:03:07,237 --> 00:03:11,093 that they would question my capacity to manage and I'd lose my job. 64 00:03:11,625 --> 00:03:14,848 I was working in countries where polio had been common, 65 00:03:14,872 --> 00:03:16,650 so when I overheard someone say 66 00:03:16,674 --> 00:03:19,396 that they thought I might have survived polio, 67 00:03:19,420 --> 00:03:21,353 I thought my secret was safe. 68 00:03:22,039 --> 00:03:24,348 No one asked why I was limping. 69 00:03:24,372 --> 00:03:26,039 So I didn't say anything. 70 00:03:26,596 --> 00:03:27,953 It took me over a decade 71 00:03:27,977 --> 00:03:31,128 to internalize the severity of HIBM, 72 00:03:31,152 --> 00:03:35,199 even as basic tasks and functions became increasingly difficult. 73 00:03:35,839 --> 00:03:39,879 Yet, I continued to pursue my dream of working all over the world, 74 00:03:39,903 --> 00:03:42,318 and was appointed as a disability focal point 75 00:03:42,342 --> 00:03:44,220 for UNICEF in Haiti, 76 00:03:44,244 --> 00:03:48,109 where I served for two years after the devastating 2010 earthquake. 77 00:03:48,998 --> 00:03:51,912 And then my work brought me to the United States. 78 00:03:51,936 --> 00:03:54,698 And even as the disease progressed significantly, 79 00:03:54,722 --> 00:03:57,745 and I needed leg braces and a walker to get around, 80 00:03:57,769 --> 00:04:00,110 I still longed for adventure. 81 00:04:00,752 --> 00:04:01,903 And this time, 82 00:04:01,927 --> 00:04:05,442 I started dreaming of a grand outdoor adventure. 83 00:04:05,466 --> 00:04:08,870 And what's more grand than the Grand Canyon? 84 00:04:09,887 --> 00:04:14,283 Did you know that for every five million people who visit the Rim 85 00:04:14,307 --> 00:04:17,680 only one percent go down to the canyon's base? 86 00:04:18,419 --> 00:04:20,969 I wanted to be a part of that one percent. 87 00:04:21,419 --> 00:04:22,926 The only thing is -- 88 00:04:22,950 --> 00:04:27,309 (Applause) 89 00:04:27,333 --> 00:04:31,214 The only thing is is that the Grand Canyon isn't exactly accessible. 90 00:04:31,730 --> 00:04:33,477 I was going to need some assistance 91 00:04:33,501 --> 00:04:37,785 to get down the 5,000-foot descent of vertical loose terrain. 92 00:04:38,472 --> 00:04:40,028 Now, when I face obstacles, 93 00:04:40,052 --> 00:04:43,813 fear doesn't necessarily immediately set in, 94 00:04:43,837 --> 00:04:46,639 because I assume that one way or another, 95 00:04:46,663 --> 00:04:47,929 I'll figure it out. 96 00:04:48,268 --> 00:04:50,490 And in this case, my thought was, 97 00:04:50,514 --> 00:04:52,633 well, if I can't walk down, 98 00:04:52,657 --> 00:04:54,855 I could learn to ride a horse. 99 00:04:54,879 --> 00:04:56,279 So that's what I did. 100 00:04:56,831 --> 00:04:58,649 And with that fateful decision, 101 00:04:58,673 --> 00:05:00,633 began a four-year commitment, 102 00:05:00,657 --> 00:05:03,728 tossing back and forth between fear and courage 103 00:05:03,752 --> 00:05:06,466 to undertake a 12-day expedition. 104 00:05:06,490 --> 00:05:09,712 Four days on horseback to cross Grand Canyon rim to rim, 105 00:05:09,736 --> 00:05:13,768 and eight days rafting 150 miles of the Colorado River, 106 00:05:13,792 --> 00:05:15,728 all with a film crew in tow. 107 00:05:15,752 --> 00:05:17,767 Spoiler alert -- we made it. 108 00:05:18,069 --> 00:05:20,962 But not without showing me how my deepest fear 109 00:05:20,986 --> 00:05:25,291 can somehow manifest a mirror response of equal courage. 110 00:05:25,784 --> 00:05:28,966 On April 13, 2018, 111 00:05:28,990 --> 00:05:30,719 sitting eight feet above the ground, 112 00:05:30,743 --> 00:05:32,990 riding a mustang horse named Sheriff, 113 00:05:33,014 --> 00:05:35,268 my first impression of Grand Canyon 114 00:05:35,292 --> 00:05:37,688 was one of shock and terror. 115 00:05:38,196 --> 00:05:40,720 Who knew I had a fear of heights. 116 00:05:41,053 --> 00:05:42,212 (Laughter) 117 00:05:42,236 --> 00:05:44,303 But there was no giving up now. 118 00:05:44,895 --> 00:05:48,615 I mustered up every ounce of courage inside me 119 00:05:48,639 --> 00:05:51,421 to not let my fear get the best of me. 120 00:05:52,133 --> 00:05:53,990 Embarking on the South Rim, 121 00:05:54,014 --> 00:05:56,680 all I could do to keep myself composed 122 00:05:56,704 --> 00:06:00,450 was to breathe deeply, stare up into the clouds, 123 00:06:00,474 --> 00:06:03,505 and focus on my team's voices. 124 00:06:03,927 --> 00:06:07,746 But then, in the first hour, disaster struck. 125 00:06:08,483 --> 00:06:10,840 Unable to hold myself upright in the saddle, 126 00:06:10,864 --> 00:06:12,856 going down an oversized step, 127 00:06:12,880 --> 00:06:17,382 I flung forward and smacked my face on the back of the horse's head. 128 00:06:17,406 --> 00:06:18,652 There was panic, 129 00:06:18,676 --> 00:06:20,247 my head hurt fiercely, 130 00:06:20,271 --> 00:06:23,961 but the path was too narrow for us to dismount. 131 00:06:23,985 --> 00:06:26,799 Only at the halfway point at 2,300 feet, 132 00:06:26,823 --> 00:06:29,045 at least another two hours down, 133 00:06:29,069 --> 00:06:31,204 could we stop and remove my helmet 134 00:06:31,228 --> 00:06:34,515 and see the egg-sized bump protruding from my forehead. 135 00:06:35,149 --> 00:06:37,236 For all of that planning and gear, 136 00:06:37,260 --> 00:06:40,069 how is it that we didn't even have an ice pack? 137 00:06:40,093 --> 00:06:41,093 (Laughter) 138 00:06:41,141 --> 00:06:44,006 Luckily for all of us, the swelling came outwards, 139 00:06:44,030 --> 00:06:48,078 and would drain into my face as two fantastic black eyes 140 00:06:48,102 --> 00:06:51,137 which is an amazing way to look in a documentary film. 141 00:06:51,161 --> 00:06:53,244 (Laughter) 142 00:06:53,268 --> 00:06:58,295 (Applause and cheers) 143 00:06:58,319 --> 00:07:00,467 This was not an easy, peaceful journey, 144 00:07:00,491 --> 00:07:02,557 and yet, that was exactly the point. 145 00:07:02,581 --> 00:07:05,192 Even though I was afraid to get back into the saddle, 146 00:07:05,216 --> 00:07:06,498 I got back in. 147 00:07:06,522 --> 00:07:08,878 The descent alone to the canyon floor 148 00:07:08,902 --> 00:07:10,869 took a total of 10 hours 149 00:07:10,893 --> 00:07:13,783 and that was just day one of four riding. 150 00:07:13,807 --> 00:07:15,839 Next came the mighty rapids. 151 00:07:15,863 --> 00:07:17,871 The Colorado River in the Grand Canyon 152 00:07:17,895 --> 00:07:20,768 has some of the highest white water in the country. 153 00:07:20,792 --> 00:07:23,642 And just to be prepared in case we should capsize, 154 00:07:23,666 --> 00:07:26,466 we'd practice having me swim through a smaller rapid. 155 00:07:26,490 --> 00:07:29,196 And it's safe to say it wasn't glamorous. 156 00:07:29,220 --> 00:07:30,220 (Laughter) 157 00:07:30,284 --> 00:07:32,813 I took my breath in the wrong part of the wave, 158 00:07:32,837 --> 00:07:34,268 choked on river water 159 00:07:34,292 --> 00:07:36,815 and was unable to steer myself. 160 00:07:36,839 --> 00:07:38,403 Yes, it was scary, 161 00:07:38,427 --> 00:07:40,474 but it was also fantastic. 162 00:07:40,847 --> 00:07:42,966 Waterfalls, slick canyons 163 00:07:42,990 --> 00:07:44,955 and a couple billion years of bedrock 164 00:07:44,979 --> 00:07:47,423 that seemed to change color throughout the day. 165 00:07:47,447 --> 00:07:50,344 The Grand Canyon is true wilderness 166 00:07:50,368 --> 00:07:53,434 and worthy of all of its accolades. 167 00:07:53,458 --> 00:08:00,283 (Applause) 168 00:08:00,849 --> 00:08:02,238 The expedition, 169 00:08:02,262 --> 00:08:05,183 all that planning and the trip itself, 170 00:08:05,207 --> 00:08:09,627 showed me a level of fear I had never experienced before. 171 00:08:10,246 --> 00:08:11,656 But more importantly, 172 00:08:11,680 --> 00:08:15,426 it showed me how boldly courageous I can be. 173 00:08:16,093 --> 00:08:18,371 My Grand Canyon journey was not easy. 174 00:08:18,395 --> 00:08:21,022 This was not a vision of an Amazonian woman 175 00:08:21,046 --> 00:08:24,140 effortlessly making her way through epic scenery. 176 00:08:24,585 --> 00:08:26,252 This was me crying, 177 00:08:26,276 --> 00:08:29,921 exhausted and beat up with two black eyes. 178 00:08:30,223 --> 00:08:31,611 It was scary, 179 00:08:31,635 --> 00:08:33,595 it was stressful, 180 00:08:33,619 --> 00:08:35,706 it was exhilarating. 181 00:08:36,992 --> 00:08:38,260 Now that the trip is over, 182 00:08:38,284 --> 00:08:41,823 it's easy to be blaze about what we achieved. 183 00:08:41,847 --> 00:08:44,355 I know I want to raft the river again. 184 00:08:44,379 --> 00:08:47,897 This time, all 277 miles of it. 185 00:08:47,921 --> 00:08:51,223 (Applause) 186 00:08:51,247 --> 00:08:54,585 But I also know that I would never do the horseback-riding part again. 187 00:08:54,609 --> 00:08:56,270 (Laughter) 188 00:08:56,294 --> 00:08:58,373 It's just too dangerous. 189 00:08:58,891 --> 00:09:00,525 And that's my real point. 190 00:09:00,549 --> 00:09:03,056 I'm not just here to show you my film footage. 191 00:09:03,478 --> 00:09:05,462 I'm here to remind us all 192 00:09:05,486 --> 00:09:07,731 that life is really just a lesson 193 00:09:07,755 --> 00:09:10,799 in finding the balance between fear and courage. 194 00:09:10,823 --> 00:09:15,529 And understanding what is and what isn't a good idea. 195 00:09:15,553 --> 00:09:16,878 (Laughter) 196 00:09:16,902 --> 00:09:18,648 Life is already scary, 197 00:09:18,672 --> 00:09:21,914 so for our dreams to come true, we need to be brave. 198 00:09:22,419 --> 00:09:23,750 In facing my fears 199 00:09:23,774 --> 00:09:26,412 and finding the courage to push through them, 200 00:09:26,436 --> 00:09:29,514 I swear my life has been extraordinary. 201 00:09:30,109 --> 00:09:31,539 So live big 202 00:09:31,563 --> 00:09:34,516 and try to let your courage outweigh your fear. 203 00:09:34,540 --> 00:09:37,020 You never know where it might take you. 204 00:09:37,503 --> 00:09:38,654 Thank you. 205 00:09:38,678 --> 00:09:42,238 (Applause and cheers)