0:00:00.785,0:00:03.012 I have a confession. 0:00:05.038,0:00:07.485 I have been in an affair 0:00:07.509,0:00:09.712 since I was 17 years old. 0:00:10.884,0:00:14.731 I wish I could talk about[br]butterflies in my stomach 0:00:14.755,0:00:17.594 or maps I drew on the ground 0:00:17.618,0:00:19.903 when I think about this affair, 0:00:19.927,0:00:21.346 but I cannot. 0:00:22.076,0:00:25.336 I wish I could talk about[br]sweet words spoken 0:00:25.360,0:00:27.433 or gifts that I received 0:00:27.457,0:00:29.177 from this affair, 0:00:29.201,0:00:30.677 but I cannot. 0:00:31.918,0:00:35.097 All I can tell you about is the aftermath, 0:00:35.922,0:00:39.674 about days I spent constantly asking: 0:00:39.698,0:00:43.071 Why, why, why me? 0:00:45.420,0:00:47.565 I remember how it all began. 0:00:48.268,0:00:51.055 I was in my final year of high school, 0:00:51.079,0:00:54.202 and my class had just won in sports, 0:00:54.226,0:00:58.945 so we were singing and dancing[br]and hugging each other. 0:00:58.969,0:01:00.753 I went and took a shower. 0:01:00.777,0:01:02.361 Then I went for dinner. 0:01:03.241,0:01:05.491 And when I sat down to eat, 0:01:05.515,0:01:08.065 my teeth started chattering, 0:01:08.089,0:01:10.624 and so I couldn't put[br]the spoon in my mouth. 0:01:10.648,0:01:13.202 I rushed to the nurse's office, 0:01:13.226,0:01:16.402 and because I couldn't talk,[br]I just pointed at my mouth. 0:01:17.164,0:01:18.950 She didn't know what was happening, 0:01:18.974,0:01:21.058 so she told me to lie down, 0:01:21.082,0:01:22.354 and it worked -- 0:01:22.378,0:01:24.841 after a few minutes,[br]the chattering stopped. 0:01:24.865,0:01:29.293 I was about to dash out,[br]and she told me -- 0:01:29.317,0:01:33.447 no, she insisted -- that I go up[br]to the dormitories to sleep. 0:01:34.265,0:01:37.382 Here I was in my final year[br]of high school, 0:01:37.406,0:01:41.961 just a few months from doing[br]my end of high school exams 0:01:41.985,0:01:46.874 and a few days from doing a set[br]of exams we call here in Kenya "mocks," 0:01:46.898,0:01:52.579 which are somehow meant to gauge[br]how prepared one is for the final exams. 0:01:52.603,0:01:54.895 There is no way I was going to sleep 0:01:54.919,0:01:57.363 and let a set of exams mock me. 0:01:57.387,0:02:00.390 I went to class, sat down, 0:02:00.414,0:02:02.769 took my Kenyan history notes, 0:02:02.793,0:02:06.558 and there I was, down Kenyan coastal town, 0:02:06.582,0:02:09.065 with the great Mekatilili wa Menza, 0:02:09.089,0:02:14.087 the Giriama woman who led her people[br]against British colonial rule. 0:02:15.499,0:02:18.415 Then, without any notice, 0:02:18.439,0:02:21.216 my left hand started jerking, 0:02:22.555,0:02:25.291 and it was as if I was marking[br]imaginary papers. 0:02:26.073,0:02:28.479 In and out it went, 0:02:29.133,0:02:32.328 and with every stroke, one by one, 0:02:32.352,0:02:35.835 my classmates stopped[br]concentrating on their reading 0:02:35.859,0:02:37.893 and started looking at me. 0:02:38.556,0:02:41.227 And I tried really hard to stop it, 0:02:41.251,0:02:42.907 but I couldn't, 0:02:42.931,0:02:44.981 because it had a life of its own. 0:02:46.287,0:02:50.909 And then, when it was sure[br]everybody was looking at us, 0:02:50.933,0:02:55.123 in its final show[br]and official introduction, 0:02:55.147,0:02:57.956 I had my first full-blown seizure, 0:02:57.980,0:03:03.133 which was the beginning of what[br]has been a 15-year-long affair. 0:03:05.541,0:03:12.096 Seizures are the trademark characteristic[br]for most types of epilepsy, 0:03:12.120,0:03:16.598 and every first-ever seizure[br]needs to be assessed by a doctor 0:03:16.622,0:03:19.125 to determine if one has epilepsy 0:03:19.149,0:03:21.835 or if it's a symptom of something else. 0:03:21.859,0:03:25.715 In my case, it was confirmed[br]that I had epilepsy. 0:03:26.271,0:03:31.166 I spent a large chunk of my time[br]in hospital and at home, 0:03:31.190,0:03:34.475 and only went back to do my final exams. 0:03:35.435,0:03:39.284 I had seizures in between papers, 0:03:39.308,0:03:41.444 but managed to get good enough grades 0:03:41.468,0:03:44.728 to be admitted for an actuarial[br]science degree 0:03:44.752,0:03:46.343 at the University of Nairobi. 0:03:46.367,0:03:49.815 (Applause) 0:03:52.710,0:03:57.273 Unfortunately, I had to drop out[br]in my second year. 0:03:57.297,0:03:59.740 I didn't have good enough coping skills 0:03:59.764,0:04:01.900 and a support community around me. 0:04:02.495,0:04:04.405 I was lucky enough to get a job, 0:04:05.230,0:04:09.914 but I was fired from that job[br]when I had a seizure in the workplace. 0:04:10.701,0:04:14.825 So I found myself in a space 0:04:14.849,0:04:18.281 where I was constantly asking myself 0:04:18.305,0:04:20.776 why this had to happen to me. 0:04:21.728,0:04:24.586 I lived in denial for a long time, 0:04:25.444,0:04:32.305 and the denial was maybe because[br]of the things that had happened, 0:04:32.329,0:04:35.049 dropping out of school[br]and being fired from my job. 0:04:35.703,0:04:39.718 Or maybe it was because of the things[br]I had heard about epilepsy 0:04:39.742,0:04:42.327 and about people living with epilepsy: 0:04:42.351,0:04:44.583 that they would never live on their own; 0:04:44.607,0:04:46.848 that they would never travel on their own 0:04:46.872,0:04:48.292 or even get work; 0:04:49.371,0:04:51.220 that they were outcasts, 0:04:51.244,0:04:55.067 with a spirit in them that they needed[br]to be delivered from. 0:04:56.662,0:05:00.289 And so the more I thought[br]about these things, 0:05:00.313,0:05:03.990 the more my seizures became, 0:05:04.014,0:05:07.119 and I spent days with my legs locked, 0:05:07.143,0:05:10.564 my speech became blurred 0:05:10.588,0:05:14.249 and on days on end, this is how I'd be. 0:05:15.047,0:05:17.080 Two or three days after a seizure, 0:05:17.104,0:05:20.334 my head and my hand[br]would still be twitching. 0:05:22.259,0:05:23.863 I felt lost, 0:05:24.680,0:05:26.624 like I'd lost everything, 0:05:27.533,0:05:28.990 and sometimes, 0:05:30.776,0:05:32.495 even the will to live. 0:05:41.724,0:05:43.066 (Sigh) 0:05:48.557,0:05:51.092 I had so much frustration in me. 0:05:52.001,0:05:53.548 And so I started writing, 0:05:53.572,0:05:56.411 because the people around me[br]didn't have answers 0:05:56.435,0:05:58.390 to the questions that I had. 0:05:59.109,0:06:01.811 And so I wrote my fears 0:06:01.835,0:06:03.135 and my doubts. 0:06:03.929,0:06:08.196 I wrote about my good days[br]and my bad days and my really ugly days, 0:06:08.220,0:06:09.970 and I shared them on a blog. 0:06:11.078,0:06:12.416 And before long, 0:06:13.488,0:06:17.119 I began to be seen and heard[br]by people who had epilepsy 0:06:17.143,0:06:18.577 and their families, 0:06:18.601,0:06:21.437 and even those who did not[br]have the diagnosis. 0:06:21.953,0:06:26.043 And I moved from that girl[br]who constantly asked why me 0:06:26.067,0:06:28.854 to one who not only self-advocates, 0:06:28.878,0:06:32.370 but does it for those who are yet[br]to find their voices. 0:06:35.377,0:06:40.227 (Applause) 0:06:43.081,0:06:47.025 My seizures are greatly reduced,[br]from two to three times a day, 0:06:47.049,0:06:50.456 to sometimes two to three[br]times in one year. 0:06:50.480,0:06:51.690 I went on -- 0:06:51.714,0:06:55.678 (Applause) 0:06:57.479,0:07:00.083 I went on to employ five people, 0:07:00.107,0:07:02.368 when I began what was Kenya's first 0:07:02.392,0:07:05.470 free mental health[br]and epilepsy support line. 0:07:05.862,0:07:07.184 And I travel -- 0:07:07.208,0:07:09.505 (Applause) 0:07:09.529,0:07:14.027 And I travel to speak about my affair, 0:07:14.051,0:07:16.408 all these things that I had been told 0:07:16.432,0:07:20.789 people like me living with epilepsy[br]could never be able to do. 0:07:21.290,0:07:26.506 Every year, a population[br]as big as 80 percent of Nairobi 0:07:26.530,0:07:29.295 gets diagnosed with epilepsy 0:07:29.319,0:07:30.758 across the globe. 0:07:31.346,0:07:32.505 And they, like me, 0:07:32.529,0:07:37.459 go through the emotions[br]of stigma and exclusion. 0:07:38.602,0:07:42.078 And so I have made it my life journey 0:07:42.102,0:07:44.686 to keep these conversations going, 0:07:44.710,0:07:47.885 and I keep confessing about my affair 0:07:47.909,0:07:51.263 so that those people who do not[br]have the diagnosis 0:07:51.287,0:07:55.224 might know and might have[br]a constant reminder 0:07:55.248,0:07:58.428 that it is alright to engage[br]with people like us, 0:07:58.452,0:08:04.012 that as long as they pull down[br]the walls of stigma and exclusion, 0:08:04.036,0:08:06.253 that we, just like them, 0:08:06.277,0:08:09.957 can be able to take anything[br]life throws at us. 0:08:09.981,0:08:11.164 Thank you. 0:08:11.188,0:08:15.591 (Applause)