1
00:00:00,785 --> 00:00:03,012
I have a confession.

2
00:00:05,038 --> 00:00:07,485
I have been in an affair

3
00:00:07,509 --> 00:00:09,712
since I was 17 years old.

4
00:00:10,884 --> 00:00:14,731
I wish I could talk about
butterflies in my stomach

5
00:00:14,755 --> 00:00:17,594
or maps I drew on the ground

6
00:00:17,618 --> 00:00:19,903
when I think about this affair,

7
00:00:19,927 --> 00:00:21,346
but I cannot.

8
00:00:22,076 --> 00:00:25,336
I wish I could talk about
sweet words spoken

9
00:00:25,360 --> 00:00:27,433
or gifts that I received

10
00:00:27,457 --> 00:00:29,177
from this affair,

11
00:00:29,201 --> 00:00:30,677
but I cannot.

12
00:00:31,918 --> 00:00:35,097
All I can tell you about is the aftermath,

13
00:00:35,922 --> 00:00:39,674
about days I spent constantly asking:

14
00:00:39,698 --> 00:00:43,071
Why, why, why me?

15
00:00:45,420 --> 00:00:47,565
I remember how it all began.

16
00:00:48,268 --> 00:00:51,055
I was in my final year of high school,

17
00:00:51,079 --> 00:00:54,202
and my class had just won in sports,

18
00:00:54,226 --> 00:00:58,945
so we were singing and dancing
and hugging each other.

19
00:00:58,969 --> 00:01:00,753
I went and took a shower.

20
00:01:00,777 --> 00:01:02,361
Then I went for dinner.

21
00:01:03,241 --> 00:01:05,491
And when I sat down to eat,

22
00:01:05,515 --> 00:01:08,065
my teeth started chattering,

23
00:01:08,089 --> 00:01:10,624
and so I couldn't put
the spoon in my mouth.

24
00:01:10,648 --> 00:01:13,202
I rushed to the nurse's office,

25
00:01:13,226 --> 00:01:16,402
and because I couldn't talk,
I just pointed at my mouth.

26
00:01:17,164 --> 00:01:18,950
She didn't know what was happening,

27
00:01:18,974 --> 00:01:21,058
so she told me to lie down,

28
00:01:21,082 --> 00:01:22,354
and it worked --

29
00:01:22,378 --> 00:01:24,841
after a few minutes,
the chattering stopped.

30
00:01:24,865 --> 00:01:29,293
I was about to dash out,
and she told me --

31
00:01:29,317 --> 00:01:33,447
no, she insisted -- that I go up
to the dormitories to sleep.

32
00:01:34,265 --> 00:01:37,382
Here I was in my final year
of high school,

33
00:01:37,406 --> 00:01:41,961
just a few months from doing
my end of high school exams

34
00:01:41,985 --> 00:01:46,874
and a few days from doing a set
of exams we call here in Kenya "mocks,"

35
00:01:46,898 --> 00:01:52,579
which are somehow meant to gauge
how prepared one is for the final exams.

36
00:01:52,603 --> 00:01:54,895
There is no way I was going to sleep

37
00:01:54,919 --> 00:01:57,363
and let a set of exams mock me.

38
00:01:57,387 --> 00:02:00,390
I went to class, sat down,

39
00:02:00,414 --> 00:02:02,769
took my Kenyan history notes,

40
00:02:02,793 --> 00:02:06,558
and there I was, down Kenyan coastal town,

41
00:02:06,582 --> 00:02:09,065
with the great Mekatilili wa Menza,

42
00:02:09,089 --> 00:02:14,087
the Giriama woman who led her people
against British colonial rule.

43
00:02:15,499 --> 00:02:18,415
Then, without any notice,

44
00:02:18,439 --> 00:02:21,216
my left hand started jerking,

45
00:02:22,555 --> 00:02:25,291
and it was as if I was marking
imaginary papers.

46
00:02:26,073 --> 00:02:28,479
In and out it went,

47
00:02:29,133 --> 00:02:32,328
and with every stroke, one by one,

48
00:02:32,352 --> 00:02:35,835
my classmates stopped
concentrating on their reading

49
00:02:35,859 --> 00:02:37,893
and started looking at me.

50
00:02:38,556 --> 00:02:41,227
And I tried really hard to stop it,

51
00:02:41,251 --> 00:02:42,907
but I couldn't,

52
00:02:42,931 --> 00:02:44,981
because it had a life of its own.

53
00:02:46,287 --> 00:02:50,909
And then, when it was sure
everybody was looking at us,

54
00:02:50,933 --> 00:02:55,123
in its final show
and official introduction,

55
00:02:55,147 --> 00:02:57,956
I had my first full-blown seizure,

56
00:02:57,980 --> 00:03:03,133
which was the beginning of what
has been a 15-year-long affair.

57
00:03:05,541 --> 00:03:12,096
Seizures are the trademark characteristic
for most types of epilepsy,

58
00:03:12,120 --> 00:03:16,598
and every first-ever seizure
needs to be assessed by a doctor

59
00:03:16,622 --> 00:03:19,125
to determine if one has epilepsy

60
00:03:19,149 --> 00:03:21,835
or if it's a symptom of something else.

61
00:03:21,859 --> 00:03:25,715
In my case, it was confirmed
that I had epilepsy.

62
00:03:26,271 --> 00:03:31,166
I spent a large chunk of my time
in hospital and at home,

63
00:03:31,190 --> 00:03:34,475
and only went back to do my final exams.

64
00:03:35,435 --> 00:03:39,284
I had seizures in between papers,

65
00:03:39,308 --> 00:03:41,444
but managed to get good enough grades

66
00:03:41,468 --> 00:03:44,728
to be admitted for an actuarial
science degree

67
00:03:44,752 --> 00:03:46,343
at the University of Nairobi.

68
00:03:46,367 --> 00:03:49,815
(Applause)

69
00:03:52,710 --> 00:03:57,273
Unfortunately, I had to drop out
in my second year.

70
00:03:57,297 --> 00:03:59,740
I didn't have good enough coping skills

71
00:03:59,764 --> 00:04:01,900
and a support community around me.

72
00:04:02,495 --> 00:04:04,405
I was lucky enough to get a job,

73
00:04:05,230 --> 00:04:09,914
but I was fired from that job
when I had a seizure in the workplace.

74
00:04:10,701 --> 00:04:14,825
So I found myself in a space

75
00:04:14,849 --> 00:04:18,281
where I was constantly asking myself

76
00:04:18,305 --> 00:04:20,776
why this had to happen to me.

77
00:04:21,728 --> 00:04:24,586
I lived in denial for a long time,

78
00:04:25,444 --> 00:04:32,305
and the denial was maybe because
of the things that had happened,

79
00:04:32,329 --> 00:04:35,049
dropping out of school
and being fired from my job.

80
00:04:35,703 --> 00:04:39,718
Or maybe it was because of the things
I had heard about epilepsy

81
00:04:39,742 --> 00:04:42,327
and about people living with epilepsy:

82
00:04:42,351 --> 00:04:44,583
that they would never live on their own;

83
00:04:44,607 --> 00:04:46,848
that they would never travel on their own

84
00:04:46,872 --> 00:04:48,292
or even get work;

85
00:04:49,371 --> 00:04:51,220
that they were outcasts,

86
00:04:51,244 --> 00:04:55,067
with a spirit in them that they needed
to be delivered from.

87
00:04:56,662 --> 00:05:00,289
And so the more I thought
about these things,

88
00:05:00,313 --> 00:05:03,990
the more my seizures became,

89
00:05:04,014 --> 00:05:07,119
and I spent days with my legs locked,

90
00:05:07,143 --> 00:05:10,564
my speech became blurred

91
00:05:10,588 --> 00:05:14,249
and on days on end, this is how I'd be.

92
00:05:15,047 --> 00:05:17,080
Two or three days after a seizure,

93
00:05:17,104 --> 00:05:20,334
my head and my hand
would still be twitching.

94
00:05:22,259 --> 00:05:23,863
I felt lost,

95
00:05:24,680 --> 00:05:26,624
like I'd lost everything,

96
00:05:27,533 --> 00:05:28,990
and sometimes,

97
00:05:30,776 --> 00:05:32,495
even the will to live.

98
00:05:41,724 --> 00:05:43,066
(Sigh)

99
00:05:48,557 --> 00:05:51,092
I had so much frustration in me.

100
00:05:52,001 --> 00:05:53,548
And so I started writing,

101
00:05:53,572 --> 00:05:56,411
because the people around me
didn't have answers

102
00:05:56,435 --> 00:05:58,390
to the questions that I had.

103
00:05:59,109 --> 00:06:01,811
And so I wrote my fears

104
00:06:01,835 --> 00:06:03,135
and my doubts.

105
00:06:03,929 --> 00:06:08,196
I wrote about my good days
and my bad days and my really ugly days,

106
00:06:08,220 --> 00:06:09,970
and I shared them on a blog.

107
00:06:11,078 --> 00:06:12,416
And before long,

108
00:06:13,488 --> 00:06:17,119
I began to be seen and heard
by people who had epilepsy

109
00:06:17,143 --> 00:06:18,577
and their families,

110
00:06:18,601 --> 00:06:21,437
and even those who did not
have the diagnosis.

111
00:06:21,953 --> 00:06:26,043
And I moved from that girl
who constantly asked why me

112
00:06:26,067 --> 00:06:28,854
to one who not only self-advocates,

113
00:06:28,878 --> 00:06:32,370
but does it for those who are yet
to find their voices.

114
00:06:35,377 --> 00:06:40,227
(Applause)

115
00:06:43,081 --> 00:06:47,025
My seizures are greatly reduced,
from two to three times a day,

116
00:06:47,049 --> 00:06:50,456
to sometimes two to three
times in one year.

117
00:06:50,480 --> 00:06:51,690
I went on --

118
00:06:51,714 --> 00:06:55,678
(Applause)

119
00:06:57,479 --> 00:07:00,083
I went on to employ five people,

120
00:07:00,107 --> 00:07:02,368
when I began what was Kenya's first

121
00:07:02,392 --> 00:07:05,470
free mental health
and epilepsy support line.

122
00:07:05,862 --> 00:07:07,184
And I travel --

123
00:07:07,208 --> 00:07:09,505
(Applause)

124
00:07:09,529 --> 00:07:14,027
And I travel to speak about my affair,

125
00:07:14,051 --> 00:07:16,408
all these things that I had been told

126
00:07:16,432 --> 00:07:20,789
people like me living with epilepsy
could never be able to do.

127
00:07:21,290 --> 00:07:26,506
Every year, a population
as big as 80 percent of Nairobi

128
00:07:26,530 --> 00:07:29,295
gets diagnosed with epilepsy

129
00:07:29,319 --> 00:07:30,758
across the globe.

130
00:07:31,346 --> 00:07:32,505
And they, like me,

131
00:07:32,529 --> 00:07:37,459
go through the emotions
of stigma and exclusion.

132
00:07:38,602 --> 00:07:42,078
And so I have made it my life journey

133
00:07:42,102 --> 00:07:44,686
to keep these conversations going,

134
00:07:44,710 --> 00:07:47,885
and I keep confessing about my affair

135
00:07:47,909 --> 00:07:51,263
so that those people who do not
have the diagnosis

136
00:07:51,287 --> 00:07:55,224
might know and might have
a constant reminder

137
00:07:55,248 --> 00:07:58,428
that it is alright to engage
with people like us,

138
00:07:58,452 --> 00:08:04,012
that as long as they pull down
the walls of stigma and exclusion,

139
00:08:04,036 --> 00:08:06,253
that we, just like them,

140
00:08:06,277 --> 00:08:09,957
can be able to take anything
life throws at us.

141
00:08:09,981 --> 00:08:11,164
Thank you.

142
00:08:11,188 --> 00:08:15,591
(Applause)