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Sitawa Wafula: Why I speak up about living with epilepsy
Sitawa Wafula: Zašto progovaram o svom životu s epilepsijom
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Jednom kada je zbog epilepsije postala vezana za svoj dom, zagovornica mentalnog zdravlja, Sitawa Wafula, pronašla je svoju snagu pišući o epilepsiji.
Sada se zalaže za druge, za koje se tek treba čuti, probijajući se kroz stigmu i isključenje, kako bi ispričala što znači živjeti s ovakvim stanjem.
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.
00:12
I have a confession.
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Moram nešto priznati.
00:17
I have been in an affair
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U vezi sam
00:19
since I was 17 years old.
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od svoje sedamnaeste godine.
00:22
I wish I could talk about
butterflies in my stomach
butterflies in my stomach
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Voljela bih da mogu pričati
o leptirićima u trbuhu
o leptirićima u trbuhu
00:26
or maps I drew on the ground
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ili o mapama koje sam iscrtala po podu
00:29
when I think about this affair,
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kada razmišljam o toj vezi,
00:31
but I cannot.
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ali ne mogu.
00:34
I wish I could talk about
sweet words spoken
sweet words spoken
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Voljela bih da mogu pričati
o slatkim riječima koje su izgovorene,
o slatkim riječima koje su izgovorene,
00:37
or gifts that I received
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ili o darovima koje sam primila
00:39
from this affair,
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u toj vezi
00:41
but I cannot.
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ali ne mogu.
00:43
All I can tell you about is the aftermath,
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Sve što vam mogu reći o tome
su posljedice,
su posljedice,
00:47
about days I spent constantly asking:
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o danima kada sam se neprestano pitala:
00:51
Why, why, why me?
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Zašto, zašto, zašto baš ja?
00:57
I remember how it all began.
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Sjećam se kako je sve počelo.
01:00
I was in my final year of high school,
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Bila sam u zadnjoj godini srednje škole,
01:03
and my class had just won in sports,
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i moj razred je upravo dobio
jednu utakmicu,
jednu utakmicu,
01:06
so we were singing and dancing
and hugging each other.
and hugging each other.
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pjevali smo, plesali i grlili se od sreće.
01:10
I went and took a shower.
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Otišla sam pod tuš,
01:12
Then I went for dinner.
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zatim na večeru.
01:15
And when I sat down to eat,
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I kada sam sjela za stol,
01:17
my teeth started chattering,
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zubi su mi počeli cvokotati,
01:20
and so I couldn't put
the spoon in my mouth.
the spoon in my mouth.
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i nisam mogla staviti žlicu u usta.
01:22
I rushed to the nurse's office,
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Požurila sam do ureda medicinske sestre,
01:25
and because I couldn't talk,
I just pointed at my mouth.
I just pointed at my mouth.
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a budući nisam mogla govoriti,
samo sam pokazala na svoja usta.
samo sam pokazala na svoja usta.
01:29
She didn't know what was happening,
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Sestra nije znala što se dešava,
01:30
so she told me to lie down,
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stoga mi je rekla da legnem,
01:33
and it worked --
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i to je djelovalo.
01:34
after a few minutes,
the chattering stopped.
the chattering stopped.
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Nakon nekoliko minuta
cvokotanje je prestalo.
cvokotanje je prestalo.
01:36
I was about to dash out,
and she told me --
and she told me --
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Htjela sam izjuriti van,
no ona je rekla,
no ona je rekla,
01:41
no, she insisted -- that I go up
to the dormitories to sleep.
to the dormitories to sleep.
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ne, inzistirala je,
da odem gore odspavati.
da odem gore odspavati.
01:46
Here I was in my final year
of high school,
of high school,
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Bila sam u zadnjoj godini srednje škole,
01:49
just a few months from doing
my end of high school exams
my end of high school exams
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samo nekoliko mjeseci me dijelilo
od polaganja završnih testova u školi
od polaganja završnih testova u školi
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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i samo nekoliko dana od grupe testova
koje ovdje u Keniji zovemo 'pripreme',
koje ovdje u Keniji zovemo 'pripreme',
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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koje služe za procjenu pripremljenosti/znanja
za završne ispite.
za završne ispite.
02:04
There is no way I was going to sleep
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Nije bilo šanse da spavam,
02:06
and let a set of exams mock me.
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i dopustim sebi podbaciti na ispitima.
02:09
I went to class, sat down,
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Ušla sam u učionicu, sjela,
02:12
took my Kenyan history notes,
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uzela svoje bilješke iz povijesti Kenije,
02:14
and there I was, down Kenyan coastal town,
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i eto me, kenijski priobalni grad,
02:18
with the great Mekatilili wa Menza,
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s čuvenom Mekatilili wa Menza,
02:21
the Giriama woman who led her people
against British colonial rule.
against British colonial rule.
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ženom iz plemena Giriama,
koja je povela svoj narod u pobunu
koja je povela svoj narod u pobunu
protiv britanskog kolonijalizma.
02:27
Then, without any notice,
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A onda, bez ikakve naznake,
02:30
my left hand started jerking,
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moja lijeva ruka počela se trzati,
02:34
and it was as if I was marking
imaginary papers.
imaginary papers.
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kao da označavam zamišljene papire,
02:38
In and out it went,
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naizmjenično unutra-van,
02:41
and with every stroke, one by one,
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i sa svakim tim udarcem, jednim za drugim,
02:44
my classmates stopped
concentrating on their reading
concentrating on their reading
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moje kolege prestali su
koncentrirati se na čitanje
koncentrirati se na čitanje
02:47
and started looking at me.
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i počeli me gledati.
02:50
And I tried really hard to stop it,
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Zaista sam se trudila to zaustaviti,
02:53
but I couldn't,
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ali nisam mogla,
02:54
because it had a life of its own.
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jer se to odvijalo samo od sebe.
02:58
And then, when it was sure
everybody was looking at us,
everybody was looking at us,
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I tada, kada je bilo jasno
da su svi gledali samo nas,
da su svi gledali samo nas,
03:02
in its final show
and official introduction,
and official introduction,
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na vrhuncu prizora i službene najave,
03:07
I had my first full-blown seizure,
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imala sam svoj prvi jaki napadaj,
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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što je ujedno bio i početak
15-godišnje veze.
15-godišnje veze.
03:17
Seizures are the trademark characteristic
for most types of epilepsy,
for most types of epilepsy,
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Napadaji su glavno/zaštitno obilježje
za većinu tipova epilepsije,
za većinu tipova epilepsije,
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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i svaki prvi napadaj treba proći
liječničku procjenu,
liječničku procjenu,
03:28
to determine if one has epilepsy
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kako bi se utvrdilo
radi li se o epilepsiji,
radi li se o epilepsiji,
03:31
or if it's a symptom of something else.
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ili je simptom nečeg drugog.
03:33
In my case, it was confirmed
that I had epilepsy.
that I had epilepsy.
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U mojem slučaju, potvrđeno je
da imam epilepsiju.
da imam epilepsiju.
03:38
I spent a large chunk of my time
in hospital and at home,
in hospital and at home,
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Provela sam veliku količinu vremena
u bolnici i kod kuće,
u bolnici i kod kuće,
03:43
and only went back to do my final exams.
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a vratila sam se samo na završne ispite.
03:47
I had seizures in between papers,
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Imala sam napadaje i između ispita,
03:51
but managed to get good enough grades
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no uspjela sam dobiti
dovoljno dobre ocjene
dovoljno dobre ocjene
03:53
to be admitted for an actuarial
science degree
science degree
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za upis aktuarskog znanstvenog stupnja
03:56
at the University of Nairobi.
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na Sveučilištu u Nairobiju.
03:58
(Applause)
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(Pljesak)
04:04
Unfortunately, I had to drop out
in my second year.
in my second year.
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Nažalost, morala sam odustati
na drugoj godini.
na drugoj godini.
04:09
I didn't have good enough coping skills
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Nisam imala dovoljno vještina
za nositi se s time,
za nositi se s time,
04:11
and a support community around me.
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ni podršku zajednice i ljudi oko mene.
04:14
I was lucky enough to get a job,
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Imala sam dovoljno sreće
da nađem posao,
da nađem posao,
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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no dobila sam otkaz kada sam
imala napadaj na radnom mjestu.
imala napadaj na radnom mjestu.
04:22
So I found myself in a space
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I tako sam sada u poziciji
04:26
where I was constantly asking myself
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gdje se neprestano pitam
04:30
why this had to happen to me.
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zašto se to moralo meni dogoditi.
04:33
I lived in denial for a long time,
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Dugo vremena živjela sam u poricanju,
04:37
and the denial was maybe because
of the things that had happened,
of the things that had happened,
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a poricanje se možda javljalo
i zbog stvari koje su se dogodile,
i zbog stvari koje su se dogodile,
04:44
dropping out of school
and being fired from my job.
and being fired from my job.
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odustajanje od školovanja
i otkaz na poslu.
i otkaz na poslu.
04:47
Or maybe it was because of the things
I had heard about epilepsy
I had heard about epilepsy
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A možda i zbog onoga
što sam čula o epilepsiji
što sam čula o epilepsiji
04:51
and about people living with epilepsy:
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te o ljudima koji žive s epilepsijom:
04:54
that they would never live on their own;
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da oni nikada neće samostalno živjeti,
04:56
that they would never travel on their own
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nikada neće samostalno putovati,
04:58
or even get work;
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ili dobiti posao,
05:01
that they were outcasts,
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da su izopćeni,
05:03
with a spirit in them that they needed
to be delivered from.
to be delivered from.
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svojim duhom kojeg trebaju (?)
05:08
And so the more I thought
about these things,
about these things,
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I što sam više razmišljala o tim stvarima,
05:12
the more my seizures became,
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moji napadaji bili su češći,
05:16
and I spent days with my legs locked,
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provela sam dane vezanih nogu,
05:19
my speech became blurred
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govor mi je postao nerazgovjetan,
05:22
and on days on end, this is how I'd be.
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i tako bi bilo do kraja dana.
05:27
Two or three days after a seizure,
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Dva ili tri dana nakon napadaja,
05:29
my head and my hand
would still be twitching.
would still be twitching.
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glava i ruka i dalje bi se trzale.
05:34
I felt lost,
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Osjećala sam se izgubljeno,
05:36
like I'd lost everything,
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kao da sam sve izgubila,
05:39
and sometimes,
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a ponekad
05:42
even the will to live.
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čak i želju za životom.
05:53
(Sigh)
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(Uzdah)
06:00
I had so much frustration in me.
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Imala sam toliko frustracija u sebi.
06:04
And so I started writing,
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I tako sam počela pisati,
06:05
because the people around me
didn't have answers
didn't have answers
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jer ljudi oko meni nisu imali odgovore
06:08
to the questions that I had.
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na moja pitanja.
06:11
And so I wrote my fears
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I tako sam zapisala svoje strahove
06:13
and my doubts.
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i svoje sumnje.
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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Pisala sam o svojim dobrim danima,
lošim danima i onim zaista užasnim danima,
lošim danima i onim zaista užasnim danima,
06:20
and I shared them on a blog.
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i objavila ih na svom blogu.
06:23
And before long,
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I uskoro
06:25
I began to be seen and heard
by people who had epilepsy
by people who had epilepsy
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primijetili su me ljudi
koji imaju epilepsiju
koji imaju epilepsiju
06:29
and their families,
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i njihove obitelji,
06:30
and even those who did not
have the diagnosis.
have the diagnosis.
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čak i oni koji nisu imali dijagnozu.
06:33
And I moved from that girl
who constantly asked why me
who constantly asked why me
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Promijenila sam se, od one djevojke koja
se neprestano pitala 'Zašto baš ja',
se neprestano pitala 'Zašto baš ja',
06:38
to one who not only self-advocates,
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u onu koja ne samo zagovara/predstavlja samu sebe,
06:40
but does it for those who are yet
to find their voices.
to find their voices.
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već to čini i za one
čiji glas se tek treba čuti.
čiji glas se tek treba čuti.
06:47
(Applause)
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(Pljesak)
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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Moji napadaji značajno su se smanjili,
od onih dva do tri puta dnevno,
od onih dva do tri puta dnevno,
06:59
to sometimes two to three
times in one year.
times in one year.
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na ponekad samo dva do tri puta godišnje.
07:02
I went on --
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Krenula sam...
07:03
(Applause)
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(Pljesak)
07:09
I went on to employ five people,
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Krenula sam sa zapošljavanjem petero ljudi
kada sam počela, bila je to u Keniji
prva besplatna linija
prva besplatna linija
07:12
when I began what was Kenya's first
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07:14
free mental health
and epilepsy support line.
and epilepsy support line.
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za podršku mentalnom zdravlju
i oboljelima od epilepsije.
i oboljelima od epilepsije.
07:17
And I travel --
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I putujem...
07:19
(Applause)
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(Pljesak)
07:21
And I travel to speak about my affair,
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Putujem kako bih govorila o svom stanju,
07:26
all these things that I had been told
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o svemu što su mi govorili
07:28
people like me living with epilepsy
could never be able to do.
could never be able to do.
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što ljudi poput mene s epilepsijom
nikada ne bi mogli.
nikada ne bi mogli.
07:33
Every year, a population
as big as 80 percent of Nairobi
as big as 80 percent of Nairobi
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Svake godine,
stanovništvu veličine 80% Nairobija
stanovništvu veličine 80% Nairobija
07:38
gets diagnosed with epilepsy
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dijagnosticira se epilepsija
07:41
across the globe.
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po cijelom svijetu.
07:43
And they, like me,
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I oni, poput mene,
07:44
go through the emotions
of stigma and exclusion.
of stigma and exclusion.
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prolaze kroz osjećaj stigme
i isključenosti.
i isključenosti.
07:50
And so I have made it my life journey
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I tako sam od toga stvorila
svoje životno putovanje
svoje životno putovanje
07:54
to keep these conversations going,
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kako bi se ovakve priče nastavile,
07:56
and I keep confessing about my affair
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a ja i dalje iznosim svom priču
07:59
so that those people who do not
have the diagnosis
have the diagnosis
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tako da oni koji nemaju ovu dijagnozu
08:03
might know and might have
a constant reminder
a constant reminder
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mogu saznati i imati stalan podsjetnik
08:07
that it is alright to engage
with people like us,
with people like us,
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kako je sasvim u redu povezati se
s ljudima poput nas,
s ljudima poput nas,
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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te da sve dok će rušiti zidove
stigme i isljučivanja,
stigme i isljučivanja,
08:16
that we, just like them,
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mi, kao i oni,
08:18
can be able to take anything
life throws at us.
life throws at us.
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možemo prihvatiti sve
što nam život bude nosio.
što nam život bude nosio.
08:21
Thank you.
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Hvala vam.
08:23
(Applause)
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(Pljesak)
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