ABOUT THE SPEAKER
Sitawa Wafula - Mental health advocate
Sitawa 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.

More profile about the speaker
Sitawa Wafula | Speaker | TED.com
TEDNairobi Ideas Search

Sitawa Wafula: Why I speak up about living with epilepsy

Sitawa Wafula: Kwanini naongelea kuhusu kuishi na kifafa

Filmed:
891,685 views

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.
- Mental health advocate
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 confessionkuungama.
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00:17
I have been in an affairjambo
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Nimekuwa katika mahusiano
00:19
sincetangu I was 17 yearsmiaka oldzamani.
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tangu nikiwa na miaka 17.
00:22
I wishunataka I could talk about
butterfliesvipepeo in my stomachtumbo
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Natamani ningeongelea kuhusu vipepeo ndani ya tumbo langu
00:26
or mapsramani I drewakauchomoa on the groundardhi
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au ramani nilizochora ardhini
00:29
when I think about this affairjambo,
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kila ninapowaza kuhusu uhusiano huu,
00:31
but I cannothaiwezi.
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lakini siwezi.
00:34
I wishunataka I could talk about
sweettamu wordsmaneno spokenamesema
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Natamani ningeongelea kuhusu maneno matamu yaliyotamkwa
00:37
or giftszawadi that I receivedalipokea
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au zawadi nilizowahi kupokea
00:39
from this affairjambo,
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kutokana na uhusiano huu,
00:41
but I cannothaiwezi.
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lakini siwezi.
00:43
All I can tell you about is the aftermathbaada ya,
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Yote ninayoweza kukwambia ni matokeo,
00:47
about dayssiku I spentalitumia constantlydaima askingkuuliza:
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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 rememberkumbuka how it all beganilianza.
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Nakumbuka yote haya yalipoanzia.
01:00
I was in my finalmwisho yearmwaka of highjuu schoolshule,
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Nilikuwa katika mwaka wangu wa mwisho wa shule ya sekondari,
01:03
and my classdarasa had just wonalishinda in sportsmichezo,
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na darasa langu lilikuwa limeshinda katika michezo,
01:06
so we were singingkuimba and dancingkucheza
and huggingkukumbatia eachkila mmoja other.
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hivyo tulikuwa tukiimba na kucheza na kukumbatiana.
01:10
I wentakaenda and tookalichukua a showerkuoga.
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Nilikwenda kuoga.
01:12
Then I wentakaenda for dinnerchajio.
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Kisha nikaenda kupata chakula cha jioni.
01:15
And when I satameketi down to eatkula,
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Na nilipokaa ili nipate chakula,
01:17
my teethmeno startedilianza chatteringanaongea,
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meno yangu yakaanza kugongana,
01:20
and so I couldn'thaikuweza put
the spoonkijiko in my mouthkinywa.
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na nikashindwa kuweka kijiko katika mdomo wangu.
01:22
I rushedalikimbia to the nurse'swa muuguzi officeofisi,
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Nilikimbia katika ofisi ya nesi,
01:25
and because I couldn'thaikuweza talk,
I just pointedalisema at my mouthkinywa.
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na kwa sababu nilikuwa siwezi kuongea, nilinyooshea kidole mdomoni mwangu.
01:29
She didn't know what was happeningkinachotokea,
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Hakuelewa ni jambo gani lililokuwa likitokea,
01:30
so she told me to lieuongo down,
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aliniambia nilale
01:33
and it workedkazi --
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ilinisaidia --
01:34
after a fewwachache minutesdakika,
the chatteringanaongea stoppedkusimamishwa.
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baada ya dakika chache, kugongana kwa meno kuliacha.
01:36
I was about to dashkistari out,
and she told me --
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Nilitaka kuondoka haraka, kisha akaniambia --
01:41
no, she insistedalisisitiza -- that I go up
to the dormitoriesmabweni to sleepusingizi.
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Hapana, akisisitiza -- kwamba niende bwenini kulala.
01:46
Here I was in my finalmwisho yearmwaka
of highjuu schoolshule,
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Wakati huu nilikuwa mwaka wa mwisho wa elimu yangu ya sekondari,
01:49
just a fewwachache monthsmiezi from doing
my endmwisho of highjuu schoolshule examsmitihani
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miezi michache tu kabla sijaanza mitihani yangu ya mwisho
01:53
and a fewwachache dayssiku from doing a setkuweka
of examsmitihani we call here in KenyaKenya "mockshudhihaki,"
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na siku chache kabla ya kufanya mitihani ambayo kwa hapa Kenya tunaiita "mocks"
01:58
whichambayo are somehowkwa namna fulani meantmaana yake to gaugekupima
how preparedtayari one is for the finalmwisho examsmitihani.
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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 sleepusingizi
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Hakuna namna ningeweza kulala
02:06
and let a setkuweka of examsmitihani mockmshtuko me.
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na kuacha mitihani hii inifanyie mzaha.
02:09
I wentakaenda to classdarasa, satameketi down,
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Nilienda darasani, nikaketi,
02:12
tookalichukua my KenyanKenya historyhistoria notesmaelezo,
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nikachukua notisi zangu za historia ya Kenya,
02:14
and there I was, down KenyanKenya coastalpwani townmji,
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Nikaanza kusoma, kuhusu miji ya pwani za Kenya,
02:18
with the great MekatililiMekatilili wawa MenzaMenza,
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kuhusu mfalme Mekatili wa Menza,
02:21
the GiriamaWagiriama womanmwanamke who led her people
againstdhidi BritishUingereza colonialkikoloni ruleutawala.
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mwanamke wa Giriama aliyeongoza watu wake kupinga ukoloni wa Waingereza.
02:27
Then, withoutbila any noticetazama,
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Baada ya hapo, bila kutambua chochote,
02:30
my left handmkono startedilianza jerkingmkutuo,
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mkono wangu wa kushoto ukaanza kutetemeka,
02:34
and it was as if I was markingkuweka alama
imaginarykufikirika paperskaratasi.
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na ikawa kama naweka alama katika karatasi la kufikirika.
02:38
In and out it wentakaenda,
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Ndani na nje,
02:41
and with everykila strokekiharusi, one by one,
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na kila mjongeo, mmoja baada ya mwingine,
02:44
my classmateswanafunzi wenzake stoppedkusimamishwa
concentratingkuzingatia on theirwao readingkusoma
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wanadarasa wenzangu wakaacha kujisomea
02:47
and startedilianza looking at me.
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na wakaanza kunishangaa mimi.
02:50
And I triedwalijaribu really hardngumu to stop it,
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Na kujaribu kwa bidii zote kuzuia hali hiyo,
02:53
but I couldn'thaikuweza,
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lakini sikuweza,
02:54
because it had a life of its ownmwenyewe.
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kwa sababu ulikuwa na aina yake ya maisha.
02:58
And then, when it was sure
everybodykila mtu was looking at us,
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Kisha, ulipokuwa umehakikisha kwamba kila mtu alikuwa akituangalia,
03:02
in its finalmwisho showonyesha
and officialrasmi introductionkuanzishwa,
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Ukaonyesha rasmi,
03:07
I had my first full-blownlikizibwa seizuremshtuko,
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Kuwa na degedege kwa mara ya kwanza,
03:09
whichambayo was the beginningmwanzo of what
has been a 15-year-long-mwaka-mrefu affairjambo.
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ambapo ilikuwa ni mwanzo wa mahusiano ambayo yana miaka 15 mpaka sasa.
03:17
SeizuresKifafa are the trademarkalama ya biashara characteristictabia
for mostwengi typesaina of epilepsykifafa,
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Mpapatiko ni moja dalili ya aina nyingi za kifafa,
03:24
and everykila first-everkwanza kabisa seizuremshtuko
needsmahitaji to be assessedkuchunguzwa by a doctordaktari
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na kila mpapatiko wowote wa mapema hutakiwa kuchunguzwa na daktari
03:28
to determinekuamua if one has epilepsykifafa
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kugundua kama mtu ana kifafa
03:31
or if it's a symptomdalili of something elsemwingine.
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au kama ni dalili ya ugonjwa mwingine.
03:33
In my casekesi, it was confirmedimethibitishwa
that I had epilepsykifafa.
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Katika tatizo langu, iligundulika kwamba nilikuwa na kifafa.
03:38
I spentalitumia a largekubwa chunkchunk of my time
in hospitalhospitali and at home,
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Nilitumia muda mwingi sana hospitali na nyumbani,
03:43
and only wentakaenda back to do my finalmwisho examsmitihani.
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na shule nilirudi kufanya mtihani wangu wa mwisho tu.
03:47
I had seizuresmajeruhi in betweenkati paperskaratasi,
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Nilikuwa nikipatwa na mpapatiko katika ya mitihani,
03:51
but managedimeweza to get good enoughkutosha gradesmadarasa ya
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lakini nilifanikiwa kupata alama nzuri za kutosha
03:53
to be admittedalikiri for an actuarialactuarial
sciencesayansi degreeshahada
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kupata nafasi ya kujiunga na shahada ya sayansi ya takwimu za bima
03:56
at the UniversityChuo Kikuu cha of NairobiNairobi.
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katika chuo cha Nairobi.
03:58
(ApplauseMakofi)
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(Makofi)
04:04
UnfortunatelyKwa bahati mbaya, I had to droptone out
in my secondpili yearmwaka.
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Kwa bahati mbaya, niliacha chuo nikiwa mwaka wa pili.
04:09
I didn't have good enoughkutosha copingkukabiliana skillsujuzi
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Sikuwa na uwezo wa kutosha wa kuendana na wenzangu
04:11
and a supportmsaada communityjumuiya around me.
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na jamii iliyokuwa inanizunguka.
04:14
I was luckybahati enoughkutosha to get a jobkazi,
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Nilibahatika kupata kazi,
04:17
but I was firedilifukuzwa from that jobkazi
when I had a seizuremshtuko in the workplacemahali pa kazi.
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lakini nilifukuzwa baada ya kupatwa na mpapatiko nikiwa kazini.
04:22
So I foundkupatikana myselfMimi mwenyewe in a spacenafasi
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Nikajikuta katika mahala
04:26
where I was constantlydaima askingkuuliza myselfMimi mwenyewe
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ambapo nilikuwa najiuliza kila wakati
04:30
why this had to happenkutokea to me.
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kwanini suala hili limenitokea mimi.
04:33
I livedaliishi in denialkukataa for a long time,
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Nimeishi katika kukataa ukweli kwa muda mrefu,
04:37
and the denialkukataa was maybe because
of the things that had happenedkilichotokea,
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na kujikataa huku pengine ni kwa sababu ya mambo ambayo yalitokea,
04:44
droppingkuacha out of schoolshule
and beingkuwa firedilifukuzwa from my jobkazi.
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kuacha chuo na kufukuzwa kazi.
04:47
Or maybe it was because of the things
I had heardkusikia about epilepsykifafa
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Au kwa sababu ya vitu nilivyosikia kuhusu kifafa
04:51
and about people livingwanaishi with epilepsykifafa:
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na kuhusu watu wanaoishi na kifafa;
04:54
that they would never livekuishi on theirwao ownmwenyewe;
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kwamba hawawezi kuishi wenyewe
04:56
that they would never travelkusafiri on theirwao ownmwenyewe
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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 outcastswatu waliotengwa,
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Kwamba ni watu walio tofauti,
05:03
with a spiritroho in them that they neededinahitajika
to be deliveredilitoa 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,
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Hivyo, nilipokuwa nikizidi kuwaza kuhusu haya mambo,
05:12
the more my seizuresmajeruhi becameikawa,
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na ndiyo hali yangu ilikuwa ikinitokea,
05:16
and I spentalitumia dayssiku with my legsmiguu lockedimefungwa,
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Niliishi miguu yangu ikiwa inafungwa kamba kwa siku kadhaa,
05:19
my speechhotuba becameikawa blurredkizunguzungu
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sauti yangu ilikuwa ikififia
05:22
and on dayssiku on endmwisho, this is how I'd be.
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na katika mwisho wa siku, hivi ndivyo ambavyo ningekuwa.
05:27
Two or threetatu dayssiku after a seizuremshtuko,
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Siku mbili au tatu baada ya mpapatiko,
05:29
my headkichwa and my handmkono
would still be twitchingwakitetemeka.
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kichwa na mikono yangu vilikuwa bado vinatingishika.
05:34
I feltwalihisi lostpotea,
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Nilijihisi kupotea,
05:36
like I'd lostpotea everything,
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kama vile ningepoteza kila kitu,
05:39
and sometimesmara nyingine,
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na wakati mwingine,
05:42
even the will to livekuishi.
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hata shauri la kuishi.
05:53
(SighKushusha pumzi)
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(Mguno)
06:00
I had so much frustrationkuchanganyikiwa in me.
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Nilikuwa na msongo mkubwa wa mawazo.
06:04
And so I startedilianza writingkuandika,
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Nikaanza kuandika,
06:05
because the people around me
didn't have answersmajibu
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kwa sababu watu waliokuwa wananizunguka hawakuwa na majibu
06:08
to the questionsmaswali that I had.
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ya maswali niliyokuwa nayo.
06:11
And so I wrotealiandika my fearshofu
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Kisha nikaandika hofu zangu zote
06:13
and my doubtsmashaka.
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na wasiwasi wangu.
06:15
I wrotealiandika about my good dayssiku
and my badmbaya dayssiku and my really uglymbaya dayssiku,
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Niliandika kuhusu siku zangu nzuri na siku zangu mbaya na zile zilizo mbaya zaidi,
06:20
and I sharedimeshirikiwa them on a blogblogu.
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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 beganilianza to be seenkuonekana and heardkusikia
by people who had epilepsykifafa
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Nilianza kuonekana na kusikika na watu waliokuwa na kifafa
06:29
and theirwao familiesfamilia,
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na familia zao,
06:30
and even those who did not
have the diagnosisutambuzi.
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na hata wale ambao hawana ugonjwa huu.
06:33
And I movedwakiongozwa from that girlmsichana
who constantlydaima askedaliuliza 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-advocatesbinafsi watetezi,
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na nikawa ambae sio tu najishauri mwenyewe
06:40
but does it for those who are yetbado
to find theirwao voicessauti.
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lakini hata kwa wale ambao bado hawajatambua sauti zao.
06:47
(ApplauseMakofi)
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(Makofi)
06:55
My seizuresmajeruhi are greatlysana reducedkupunguzwa,
from two to threetatu timesnyakati a day,
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Mpapatiko wangu umepungua mno, kutoka mara mbili hadi tatu kwa siku,
06:59
to sometimesmara nyingine two to threetatu
timesnyakati in one yearmwaka.
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na wakati mwingine mara mbili hadi tatu ndani ya mwaka.
07:02
I wentakaenda on --
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Nikaendelea --
07:03
(ApplauseMakofi)
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(Makofi)
07:09
I wentakaenda on to employtumia fivetano people,
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Nikafanikiwa kuajiri watu watano,
07:12
when I beganilianza what was Kenya'sGazeti first
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nilipoanzisha inayofahamika kama taasisi ya kwanza Kenya
07:14
freebure mentalakili healthafya
and epilepsykifafa supportmsaada linemstari.
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ya bure kuhusu ushauri wa afya ya akili na kifafa.
07:17
And I travelkusafiri --
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Na nikasafiri --
07:19
(ApplauseMakofi)
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(Makofi)
07:21
And I travelkusafiri to speaksema about my affairjambo,
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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 livingwanaishi with epilepsykifafa
could never be ableinaweza to do.
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kwamba watu wenye kifafa kama mimi hawatoweza kamwe.
07:33
EveryKila yearmwaka, a populationidadi ya watu
as bigkubwa as 80 percentasilimia of NairobiNairobi
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Kila mwaka, watu takribani asilimia 80 sawa na watu waliopo jijini Nairobi
07:38
getshupata diagnosedkukutwa with epilepsykifafa
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hugundulika kuwa na kifafa
07:41
acrosskote the globeglobe.
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dunia nzima.
07:43
And they, like me,
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Na ni watu kama mimi.
07:44
go throughkupitia the emotionshisia
of stigmaunyanyapaa and exclusionkutengwa.
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ambao wanapitia hisia za unyanyapaa na kutengwa.
07:50
And so I have madealifanya it my life journeysafari
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Nimeifanya kuwa safari ya maisha yangu
07:54
to keep these conversationsmazungumzo going,
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kufanya maongezi yaendelee,
07:56
and I keep confessingkukiri about my affairjambo
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na bado ninakubaliana na uhusiano wangu
07:59
so that those people who do not
have the diagnosisutambuzi
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Ili watu ambao hawana kifafa
08:03
mightnguvu know and mightnguvu have
a constantmara kwa mara reminderukumbusho
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wanaweza tambua na kukumbuka kila wakati
08:07
that it is alrightsawa to engagekushiriki
with people like us,
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kwamba hakuna tatizo kuwa pamoja na watu kama sisi.
08:10
that as long as they pullkuvuta down
the wallskuta of stigmaunyanyapaa and exclusionkutengwa,
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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 ableinaweza to take anything
life throwshutupa at us.
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tunaweza kabiliana na chochote kinachotujia maishani.
08:21
Thank you.
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Asante.
08:23
(ApplauseMakofi)
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(Makofi)
Translated by Nelson Simfukwe
Reviewed by Joachim Mangilima

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ABOUT THE SPEAKER
Sitawa Wafula - Mental health advocate
Sitawa 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.

More profile about the speaker
Sitawa Wafula | Speaker | TED.com