WEBVTT

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I have a confession.

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I have been in an affair

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since I was 17 years old.

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I wish I could talk about
butterflies in my stomach

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or maps I drew on the ground

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when I think about this affair,

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but I cannot.

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I wish I could talk about
sweet words spoken

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or gifts that I received

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from this affair,

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but I cannot.

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All I can tell you about is the aftermath,

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about days I spent constantly asking

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why, why, why me?

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I remember how it all began.

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I was in my final year of high school,

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and my class had just won in the sports,

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so we were singing and dancing
and hugging each other.

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I went and took a shower.

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Then I went for dinner.

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And when I sat down to eat,

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my teeth started chattering,

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and so I couldn't put
the spoon in my mouth.

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I rushed to the nurse's office,

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and because I couldn't talk,
I just pointed at my mouth.

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She didn't know what was happening,

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so she told me to lie down,

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and it worked.

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After a few minutes,
the chattering stopped.

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I was about to dash out,
and she told me --

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no, she insisted -- that I go up
to the dormitories to sleep.

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Here I was in my final year of high school

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just a few months from doing
my end of high school exams

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and a few days from doing a set
of exams we call here in Kenya "mocks,"

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which are somehow meant to gauge
how prepared one is for the final exams.

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There is no way I was going to sleep

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and let a set of exams mock me.

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I went to class, sat down,

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took my Kenyan history notes,

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and there I was down Kenyan coastal town

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with the great Mekatilili wa Menza,

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the Giriama woman who led her people
against British colonial rule.

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Then, without any notice,

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my left hand started jerking,

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and it was as if I was marking
imaginary papers.

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In and out it went,

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and with every stroke, one by one,

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my classmates stopped
concentrating on their reading

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and started looking at me.

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And I tried really hard to stop it,

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but I couldn't

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because it had a life of its own.

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And then, when it was sure
everybody was looking at us,

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in its final show
and official introduction,

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I had my first full-blown seizure,

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which was the beginning of what
has been a 15-year long affair.

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Seizures are the trademark characteristic

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for most types of epilepsy,

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and every first ever seizure
needs to be assessed by a doctor

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to determine if one has epilepsy,

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or if it's a symptom of something else.

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In my case, it was confirmed
that I had epilepsy.

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I spent a large chunk of my time
in hospital and at home,

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and only went back to do my final exams.

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I had seizures in between papers,

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but managed to get good enough grades

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to be admitted for an Actuarial
Science degree

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at the University of Nairobi.

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(Applause)

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Unfortunately, I had to drop out
in my second year.

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I didn't have good enough coping skills

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and a support community around me.

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I was lucky enough to get a job,

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but I was fired from that job
when I had a seizure in the workplace.

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So I found myself in a space
where I was constantly asking myself

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why this had to happen to me.

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I lived in denial for a long time,

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and the denial was maybe because
of the things that had happened:

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dropping out of school
and being fired from my job.

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Or maybe it was because
of the things I had heard about epilepsy

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and about people living with epilepsy --

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that they would never live on their own;

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that they would never travel on their own

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or even get work;

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that they were outcasts,

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with a spirit in them that they needed
to be delivered from.

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And so the more I thought
about these things,

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the more my seizures became,

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and I spent days with my legs locked

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and my speech became blurred,

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and on days on end, this is how I'd be.

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Two or three days after a seizure,

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my head and my head
would still be twitching.

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I felt lost,

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like I'd lost everything,

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and sometimes,

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even the will to live.

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(Sigh)

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I had so much frustration in me,

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and so I started writing,

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because the people around me
didn't have answers

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to the questions that I had.

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And so I wrote my fears

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and my doubts.

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I wrote about my good days
and my bad days and my really ugly days,

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and I shared them on a blog.

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And before long,

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I began to be seen and heard
by people who had epilepsy

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and their families,

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and even those who did not
have the diagnosis.

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And I moved from that girl
who constantly asked why me

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to one who not only self-advocates,

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but does it for those who are yet
to find their voices.

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(Applause)

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My seizures are greatly reduced,
from two to three times a day

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to sometimes two to three
times in one year.

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I went on --

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(Applause)

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I went on to employ five people

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when I began what was Kenya's first
free mental health

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and epilepsy support line.

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And I travel --

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(Applause)

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And I travel to speak about my affair,

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all these things that I had been told

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people like me living with epilepsy
could never be able to do.

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Every year, a population
as big as 80 percent of Nairobi

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gets diagnosed with epilepsy

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across the globe.

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And they, like me,

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go through the emotions
of stigma and exclusion.

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And so I have made it my life journey

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to keep these conversations going,

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and I keep confessing about my affair

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so that those people who do not
have the diagnosis

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might know and might have
a constant reminder

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that it is all right to engage
with people like us,

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that as long as they pull down
the walls of stigma and exclusion,

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that we, just like them,

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can be able to take anything
life throws at us.

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Thank you.

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(Applause)