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Sitawa Wafula: Why I speak up about living with epilepsy
Sitawa Wafula: Kwanini naongelea kuhusu kuishi na kifafa
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Aliyewahi kubaki nyumbani kutokana na ugonjwa wa kifafa. Sitawa Wafula, ambae ni mhamasishaji wa afya ya akili alipata nguvu kuandika kuhusu ugonjwa wake. Kwa sasa, anahamasisha kwa ajili ya wengine ambao bado hawajatambua sauti zao, akivunja unyanyapaa na kutengwa katika kuongelea ni namna gani inavyokuwa kwa mtu anayeishi na ugonjwa wa kifafa.
Sitawa Wafula - Mental health advocate
Sitawa Wafula started Kenya's first free mental health and epilepsy support line. Full bio
Sitawa Wafula started Kenya's first free mental health and epilepsy support line. Full bio
Double-click the English transcript below to play the video.
Nina jambo la kushuhudia.
00:12
I have a confession.
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00:17
I have been in an affair
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Nimekuwa katika mahusiano
00:19
since I was 17 years old.
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tangu nikiwa na miaka 17.
00:22
I wish I could talk about
butterflies in my stomach
butterflies in my stomach
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Natamani ningeongelea kuhusu vipepeo ndani ya tumbo langu
00:26
or maps I drew on the ground
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au ramani nilizochora ardhini
00:29
when I think about this affair,
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kila ninapowaza kuhusu uhusiano huu,
00:31
but I cannot.
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lakini siwezi.
00:34
I wish I could talk about
sweet words spoken
sweet words spoken
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Natamani ningeongelea kuhusu maneno matamu yaliyotamkwa
00:37
or gifts that I received
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au zawadi nilizowahi kupokea
00:39
from this affair,
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kutokana na uhusiano huu,
00:41
but I cannot.
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lakini siwezi.
00:43
All I can tell you about is the aftermath,
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Yote ninayoweza kukwambia ni matokeo,
00:47
about days I spent constantly asking:
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ya kuhusu siku nilizotumia nikijiuliza mfululizo;
00:51
Why, why, why me?
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Kwanini, kwanini, kwanini mimi?
00:57
I remember how it all began.
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Nakumbuka yote haya yalipoanzia.
01:00
I was in my final year of high school,
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Nilikuwa katika mwaka wangu wa mwisho wa shule ya sekondari,
01:03
and my class had just won in sports,
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na darasa langu lilikuwa limeshinda katika michezo,
01:06
so we were singing and dancing
and hugging each other.
and hugging each other.
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hivyo tulikuwa tukiimba na kucheza na kukumbatiana.
01:10
I went and took a shower.
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Nilikwenda kuoga.
01:12
Then I went for dinner.
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Kisha nikaenda kupata chakula cha jioni.
01:15
And when I sat down to eat,
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Na nilipokaa ili nipate chakula,
01:17
my teeth started chattering,
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meno yangu yakaanza kugongana,
01:20
and so I couldn't put
the spoon in my mouth.
the spoon in my mouth.
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na nikashindwa kuweka kijiko katika mdomo wangu.
01:22
I rushed to the nurse's office,
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Nilikimbia katika ofisi ya nesi,
01:25
and because I couldn't talk,
I just pointed at my mouth.
I just pointed at my mouth.
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na kwa sababu nilikuwa siwezi kuongea, nilinyooshea kidole mdomoni mwangu.
01:29
She didn't know what was happening,
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Hakuelewa ni jambo gani lililokuwa likitokea,
01:30
so she told me to lie down,
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aliniambia nilale
01:33
and it worked --
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ilinisaidia --
01:34
after a few minutes,
the chattering stopped.
the chattering stopped.
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baada ya dakika chache, kugongana kwa meno kuliacha.
01:36
I was about to dash out,
and she told me --
and she told me --
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Nilitaka kuondoka haraka, kisha akaniambia --
01:41
no, she insisted -- that I go up
to the dormitories to sleep.
to the dormitories to sleep.
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Hapana, akisisitiza -- kwamba niende bwenini kulala.
01:46
Here I was in my final year
of high school,
of high school,
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Wakati huu nilikuwa mwaka wa mwisho wa elimu yangu ya sekondari,
01:49
just a few months from doing
my end of high school exams
my end of high school exams
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miezi michache tu kabla sijaanza mitihani yangu ya mwisho
01:53
and a few days from doing a set
of exams we call here in Kenya "mocks,"
of exams we call here in Kenya "mocks,"
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na siku chache kabla ya kufanya mitihani ambayo kwa hapa Kenya tunaiita "mocks"
01:58
which are somehow meant to gauge
how prepared one is for the final exams.
how prepared one is for the final exams.
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ambayo dhumuni lake ni kumpima mwanafunzi ni kwa namna gani amejiandaa na mtihani wa mwisho.
02:04
There is no way I was going to sleep
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Hakuna namna ningeweza kulala
02:06
and let a set of exams mock me.
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na kuacha mitihani hii inifanyie mzaha.
02:09
I went to class, sat down,
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Nilienda darasani, nikaketi,
02:12
took my Kenyan history notes,
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nikachukua notisi zangu za historia ya Kenya,
02:14
and there I was, down Kenyan coastal town,
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Nikaanza kusoma, kuhusu miji ya pwani za Kenya,
02:18
with the great Mekatilili wa Menza,
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kuhusu mfalme Mekatili wa Menza,
02:21
the Giriama woman who led her people
against British colonial rule.
against British colonial rule.
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mwanamke wa Giriama aliyeongoza watu wake kupinga ukoloni wa Waingereza.
02:27
Then, without any notice,
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Baada ya hapo, bila kutambua chochote,
02:30
my left hand started jerking,
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mkono wangu wa kushoto ukaanza kutetemeka,
02:34
and it was as if I was marking
imaginary papers.
imaginary papers.
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na ikawa kama naweka alama katika karatasi la kufikirika.
02:38
In and out it went,
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Ndani na nje,
02:41
and with every stroke, one by one,
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na kila mjongeo, mmoja baada ya mwingine,
02:44
my classmates stopped
concentrating on their reading
concentrating on their reading
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wanadarasa wenzangu wakaacha kujisomea
02:47
and started looking at me.
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na wakaanza kunishangaa mimi.
02:50
And I tried really hard to stop it,
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Na kujaribu kwa bidii zote kuzuia hali hiyo,
02:53
but I couldn't,
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lakini sikuweza,
02:54
because it had a life of its own.
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kwa sababu ulikuwa na aina yake ya maisha.
02:58
And then, when it was sure
everybody was looking at us,
everybody was looking at us,
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Kisha, ulipokuwa umehakikisha kwamba kila mtu alikuwa akituangalia,
03:02
in its final show
and official introduction,
and official introduction,
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Ukaonyesha rasmi,
03:07
I had my first full-blown seizure,
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Kuwa na degedege kwa mara ya kwanza,
03:09
which was the beginning of what
has been a 15-year-long affair.
has been a 15-year-long affair.
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ambapo ilikuwa ni mwanzo wa mahusiano ambayo yana miaka 15 mpaka sasa.
03:17
Seizures are the trademark characteristic
for most types of epilepsy,
for most types of epilepsy,
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Mpapatiko ni moja dalili ya aina nyingi za kifafa,
03:24
and every first-ever seizure
needs to be assessed by a doctor
needs to be assessed by a doctor
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na kila mpapatiko wowote wa mapema hutakiwa kuchunguzwa na daktari
03:28
to determine if one has epilepsy
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kugundua kama mtu ana kifafa
03:31
or if it's a symptom of something else.
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au kama ni dalili ya ugonjwa mwingine.
03:33
In my case, it was confirmed
that I had epilepsy.
that I had epilepsy.
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Katika tatizo langu, iligundulika kwamba nilikuwa na kifafa.
03:38
I spent a large chunk of my time
in hospital and at home,
in hospital and at home,
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Nilitumia muda mwingi sana hospitali na nyumbani,
03:43
and only went back to do my final exams.
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na shule nilirudi kufanya mtihani wangu wa mwisho tu.
03:47
I had seizures in between papers,
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Nilikuwa nikipatwa na mpapatiko katika ya mitihani,
03:51
but managed to get good enough grades
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lakini nilifanikiwa kupata alama nzuri za kutosha
03:53
to be admitted for an actuarial
science degree
science degree
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kupata nafasi ya kujiunga na shahada ya sayansi ya takwimu za bima
03:56
at the University of Nairobi.
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katika chuo cha Nairobi.
03:58
(Applause)
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(Makofi)
04:04
Unfortunately, I had to drop out
in my second year.
in my second year.
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Kwa bahati mbaya, niliacha chuo nikiwa mwaka wa pili.
04:09
I didn't have good enough coping skills
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Sikuwa na uwezo wa kutosha wa kuendana na wenzangu
04:11
and a support community around me.
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na jamii iliyokuwa inanizunguka.
04:14
I was lucky enough to get a job,
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Nilibahatika kupata kazi,
04:17
but I was fired from that job
when I had a seizure in the workplace.
when I had a seizure in the workplace.
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lakini nilifukuzwa baada ya kupatwa na mpapatiko nikiwa kazini.
04:22
So I found myself in a space
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Nikajikuta katika mahala
04:26
where I was constantly asking myself
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ambapo nilikuwa najiuliza kila wakati
04:30
why this had to happen to me.
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kwanini suala hili limenitokea mimi.
04:33
I lived in denial for a long time,
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Nimeishi katika kukataa ukweli kwa muda mrefu,
04:37
and the denial was maybe because
of the things that had happened,
of the things that had happened,
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na kujikataa huku pengine ni kwa sababu ya mambo ambayo yalitokea,
04:44
dropping out of school
and being fired from my job.
and being fired from my job.
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kuacha chuo na kufukuzwa kazi.
04:47
Or maybe it was because of the things
I had heard about epilepsy
I had heard about epilepsy
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Au kwa sababu ya vitu nilivyosikia kuhusu kifafa
04:51
and about people living with epilepsy:
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na kuhusu watu wanaoishi na kifafa;
04:54
that they would never live on their own;
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kwamba hawawezi kuishi wenyewe
04:56
that they would never travel on their own
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na hawawezi kusafiri wakiwa peke yao
04:58
or even get work;
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au hata kupata kazi;
05:01
that they were outcasts,
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Kwamba ni watu walio tofauti,
05:03
with a spirit in them that they needed
to be delivered from.
to be delivered from.
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walio na roho ambayo wanatakiwa kuokolewa kutoka hiyo roho.
05:08
And so the more I thought
about these things,
about these things,
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Hivyo, nilipokuwa nikizidi kuwaza kuhusu haya mambo,
05:12
the more my seizures became,
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na ndiyo hali yangu ilikuwa ikinitokea,
05:16
and I spent days with my legs locked,
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Niliishi miguu yangu ikiwa inafungwa kamba kwa siku kadhaa,
05:19
my speech became blurred
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sauti yangu ilikuwa ikififia
05:22
and on days on end, this is how I'd be.
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na katika mwisho wa siku, hivi ndivyo ambavyo ningekuwa.
05:27
Two or three days after a seizure,
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Siku mbili au tatu baada ya mpapatiko,
05:29
my head and my hand
would still be twitching.
would still be twitching.
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kichwa na mikono yangu vilikuwa bado vinatingishika.
05:34
I felt lost,
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Nilijihisi kupotea,
05:36
like I'd lost everything,
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kama vile ningepoteza kila kitu,
05:39
and sometimes,
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na wakati mwingine,
05:42
even the will to live.
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hata shauri la kuishi.
05:53
(Sigh)
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(Mguno)
06:00
I had so much frustration in me.
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Nilikuwa na msongo mkubwa wa mawazo.
06:04
And so I started writing,
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Nikaanza kuandika,
06:05
because the people around me
didn't have answers
didn't have answers
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kwa sababu watu waliokuwa wananizunguka hawakuwa na majibu
06:08
to the questions that I had.
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ya maswali niliyokuwa nayo.
06:11
And so I wrote my fears
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Kisha nikaandika hofu zangu zote
06:13
and my doubts.
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na wasiwasi wangu.
06:15
I wrote about my good days
and my bad days and my really ugly days,
and my bad days and my really ugly days,
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Niliandika kuhusu siku zangu nzuri na siku zangu mbaya na zile zilizo mbaya zaidi,
06:20
and I shared them on a blog.
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kisha nikashirikisha katika blogu.
06:23
And before long,
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Na kabla ya muda kupita,
06:25
I began to be seen and heard
by people who had epilepsy
by people who had epilepsy
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Nilianza kuonekana na kusikika na watu waliokuwa na kifafa
06:29
and their families,
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na familia zao,
06:30
and even those who did not
have the diagnosis.
have the diagnosis.
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na hata wale ambao hawana ugonjwa huu.
06:33
And I moved from that girl
who constantly asked why me
who constantly asked why me
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Na nikaondoka kutoka kwa yule msichana ambae alikuwa akijiuliza ni kwanini mimi kila wakati mimi
06:38
to one who not only self-advocates,
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na nikawa ambae sio tu najishauri mwenyewe
06:40
but does it for those who are yet
to find their voices.
to find their voices.
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lakini hata kwa wale ambao bado hawajatambua sauti zao.
06:47
(Applause)
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(Makofi)
06:55
My seizures are greatly reduced,
from two to three times a day,
from two to three times a day,
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Mpapatiko wangu umepungua mno, kutoka mara mbili hadi tatu kwa siku,
06:59
to sometimes two to three
times in one year.
times in one year.
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na wakati mwingine mara mbili hadi tatu ndani ya mwaka.
07:02
I went on --
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Nikaendelea --
07:03
(Applause)
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(Makofi)
07:09
I went on to employ five people,
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Nikafanikiwa kuajiri watu watano,
07:12
when I began what was Kenya's first
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nilipoanzisha inayofahamika kama taasisi ya kwanza Kenya
07:14
free mental health
and epilepsy support line.
and epilepsy support line.
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ya bure kuhusu ushauri wa afya ya akili na kifafa.
07:17
And I travel --
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Na nikasafiri --
07:19
(Applause)
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(Makofi)
07:21
And I travel to speak about my affair,
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Nikasafiri kuongelea kuhusu uhusiano wangu,
07:26
all these things that I had been told
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vitu hivi vyote ambavyo niliambiwa
07:28
people like me living with epilepsy
could never be able to do.
could never be able to do.
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kwamba watu wenye kifafa kama mimi hawatoweza kamwe.
07:33
Every year, a population
as big as 80 percent of Nairobi
as big as 80 percent of Nairobi
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Kila mwaka, watu takribani asilimia 80 sawa na watu waliopo jijini Nairobi
07:38
gets diagnosed with epilepsy
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hugundulika kuwa na kifafa
07:41
across the globe.
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dunia nzima.
07:43
And they, like me,
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Na ni watu kama mimi.
07:44
go through the emotions
of stigma and exclusion.
of stigma and exclusion.
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ambao wanapitia hisia za unyanyapaa na kutengwa.
07:50
And so I have made it my life journey
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Nimeifanya kuwa safari ya maisha yangu
07:54
to keep these conversations going,
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kufanya maongezi yaendelee,
07:56
and I keep confessing about my affair
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na bado ninakubaliana na uhusiano wangu
07:59
so that those people who do not
have the diagnosis
have the diagnosis
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Ili watu ambao hawana kifafa
08:03
might know and might have
a constant reminder
a constant reminder
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wanaweza tambua na kukumbuka kila wakati
08:07
that it is alright to engage
with people like us,
with people like us,
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kwamba hakuna tatizo kuwa pamoja na watu kama sisi.
08:10
that as long as they pull down
the walls of stigma and exclusion,
the walls of stigma and exclusion,
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kwa kadiri wanavyodidimiza ukuta wala unyanyapaa na kutengwa,
08:16
that we, just like them,
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Ya kwamba sisi, kama wao,
08:18
can be able to take anything
life throws at us.
life throws at us.
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tunaweza kabiliana na chochote kinachotujia maishani.
08:21
Thank you.
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Asante.
08:23
(Applause)
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(Makofi)
ABOUT THE SPEAKER
Sitawa Wafula - Mental health advocateSitawa Wafula started Kenya's first free mental health and epilepsy support line.
Why you should listen
Sitawa Wafula is a blogger and nomadic mental health crusader. She's using her personal journey as a rape survivor living with a dual diagnosis of epilepsy and bipolar disorder to provide people in Africa with information and support to handle mental health conditions and deal with everyday life.
Wafula is also an Aspen New Voices Fellow with the Aspen Institute, USA and a non-communicable disease champion under the Ministry of Health in her home country, Kenya.
Sitawa Wafula | Speaker | TED.com