Why I speak up about living with epilepsy | Sitawa Wafula

Prevoditelj: Sanda L Recezent: Teodor Coporda

I have a confession.

Moram nešto priznati.

I have been in an affair

U vezi sam

since I was 17 years old.

od svoje sedamnaeste godine.

I wish I could talk about butterflies in my stomach

Voljela bih da mogu pričati o leptirićima u trbuhu

or maps I drew on the ground

ili o mapama koje sam iscrtala po podu

when I think about this affair,

kada razmišljam o toj vezi,

but I cannot.

ali ne mogu.

I wish I could talk about sweet words spoken

Voljela bih da mogu pričati o slatkim riječima koje su izgovorene,

or gifts that I received

ili o darovima koje sam primila

from this affair,

u toj vezi

but I cannot.

ali ne mogu.

All I can tell you about is the aftermath,

Sve što vam mogu reći o tome su posljedice,

about days I spent constantly asking:

o danima kada sam se neprestano pitala:

Why, why, why me?

Zašto, zašto, zašto baš ja?

I remember how it all began.

Sjećam se kako je sve počelo.

I was in my final year of high school,

Bila sam u zadnjoj godini srednje škole,

and my class had just won in sports,

i moj razred je upravo dobio jednu utakmicu,

so we were singing and dancing and hugging each other.

pjevali smo, plesali i grlili se od sreće.

I went and took a shower.

Otišla sam pod tuš,

Then I went for dinner.

zatim na večeru.

And when I sat down to eat,

I kada sam sjela za stol,

my teeth started chattering,

zubi su mi počeli cvokotati,

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

i nisam mogla staviti žlicu u usta.

I rushed to the nurse's office,

Požurila sam do ureda medicinske sestre,

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

a budući nisam mogla govoriti, samo sam pokazala na svoja usta.

She didn't know what was happening,

Sestra nije znala što se dešava,

so she told me to lie down,

stoga mi je rekla da legnem,

and it worked --

i to je djelovalo.

after a few minutes, the chattering stopped.

Nakon nekoliko minuta cvokotanje je prestalo.

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

Htjela sam izjuriti van, no ona je rekla,

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

ne, inzistirala je, da odem gore odspavati.

Here I was in my final year of high school,

Bila sam u zadnjoj godini srednje škole,

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

samo nekoliko mjeseci me dijelilo od polaganja završnih testova u školi

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

i samo nekoliko dana od grupe testova koje ovdje u Keniji zovemo 'pripreme',

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

koje služe za procjenu pripremljenosti/znanja za završne ispite.

There is no way I was going to sleep

Nije bilo šanse da spavam,

and let a set of exams mock me.

i dopustim sebi podbaciti na ispitima.

I went to class, sat down,

Ušla sam u učionicu, sjela,

took my Kenyan history notes,

uzela svoje bilješke iz povijesti Kenije,

and there I was, down Kenyan coastal town,

i eto me, kenijski priobalni grad,

with the great Mekatilili wa Menza,

s čuvenom Mekatilili wa Menza,

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

ženom iz plemena Giriama, koja je povela narod protiv britanskog kolonijalizima

Then, without any notice,

A onda, bez ikakve naznake,

my left hand started jerking,

moja lijeva ruka počela se trzati,

and it was as if I was marking imaginary papers.

kao da označavam zamišljene papire,

In and out it went,

naizmjenično unutra-van,

and with every stroke, one by one,

i sa svakim tim udarcem, jednim za drugim,

my classmates stopped concentrating on their reading

moje kolege prestali su koncentrirati se na čitanje

and started looking at me.

i počeli me gledati.

And I tried really hard to stop it,

Zaista sam se trudila to zaustaviti,

but I couldn't,

ali nisam mogla,

because it had a life of its own.

jer se to odvijalo samo od sebe.

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

I tada, kada je bilo jasno da su svi gledali samo nas,

in its final show and official introduction,

na vrhuncu prizora i službene najave,

I had my first full-blown seizure,

imala sam svoj prvi jaki napadaj,

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

što je ujedno bio i početak 15-godišnje veze.

Seizures are the trademark characteristic for most types of epilepsy,

Napadaji su glavno/zaštitno obilježje za većinu tipova epilepsije,

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

i svaki prvi napadaj treba proći liječničku procjenu,

to determine if one has epilepsy

kako bi se utvrdilo radi li se o epilepsiji,

or if it's a symptom of something else.

ili je simptom nečeg drugog.

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

U mojem slučaju, potvrđeno je da imam epilepsiju.

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

Provela sam veliku količinu vremena u bolnici i kod kuće,

and only went back to do my final exams.

a vratila sam se samo na završne ispite.

I had seizures in between papers,

Imala sam napadaje i između ispita,

but managed to get good enough grades

no uspjela sam dobiti dovoljno dobre ocjene

to be admitted for an actuarial science degree

za upis aktuarskog znanstvenog stupnja

at the University of Nairobi.

na Sveučilištu u Nairobiju.

(Applause)

(Pljesak)

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

Nažalost, morala sam odustati na drugoj godini.

I didn't have good enough coping skills

Nisam imala dovoljno vještina za nositi se s time,

and a support community around me.

ni podršku zajednice i ljudi oko mene.

I was lucky enough to get a job,

Imala sam dovoljno sreće da nađem posao,

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

no dobila sam otkaz kada sam imala napadaj na radnom mjestu.

So I found myself in a space

I tako sam sada u poziciji

where I was constantly asking myself

gdje se neprestano pitam

why this had to happen to me.

zašto se to moralo meni dogoditi.

I lived in denial for a long time,

Dugo vremena živjela sam u poricanju,

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

a poricanje se možda javljalo i zbog stvari koje su se dogodile,

dropping out of school and being fired from my job.

odustajanje od školovanja i otkaz na poslu.

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

A možda i zbog onoga što sam čula o epilepsiji

and about people living with epilepsy:

te o ljudima koji žive s epilepsijom:

that they would never live on their own;

da oni nikada neće samostalno živjeti,

that they would never travel on their own

nikada neće samostalno putovati,

or even get work;

ili dobiti posao,

that they were outcasts,

da su izopćeni,

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

svojim duhom kojeg se trebaju osloboditi

And so the more I thought about these things,

I što sam više razmišljala o tim stvarima,

the more my seizures became,

moji napadaji bili su češći,

and I spent days with my legs locked,

provela sam dane vezanih nogu,

my speech became blurred

govor mi je postao nerazgovjetan,

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

i tako bi bilo do kraja dana.

Two or three days after a seizure,

Dva ili tri dana nakon napadaja,

my head and my hand would still be twitching.

glava i ruka i dalje bi se trzale.

I felt lost,

Osjećala sam se izgubljeno,

like I'd lost everything,

kao da sam sve izgubila,

and sometimes,

a ponekad

even the will to live.

čak i želju za životom.

(Sigh)

(Uzdah)

I had so much frustration in me.

Imala sam toliko frustracija u sebi.

And so I started writing,

I tako sam počela pisati,

because the people around me didn't have answers

jer ljudi oko meni nisu imali odgovore

to the questions that I had.

na moja pitanja.

And so I wrote my fears

I tako sam zapisala svoje strahove

and my doubts.

i svoje sumnje.

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

Pisala sam o svojim dobrim danima, lošim danima i onim zaista užasnim danima,

and I shared them on a blog.

i objavila ih na svom blogu.

And before long,

I uskoro

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

primijetili su me ljudi koji imaju epilepsiju

and their families,

i njihove obitelji,

and even those who did not have the diagnosis.

čak i oni koji nisu imali dijagnozu.

And I moved from that girl who constantly asked why me

Promijenila sam se, od one djevojke koja se neprestano pitala 'Zašto baš ja',

to one who not only self-advocates,

u onu koja ne samo zagovara/predstavlja samu sebe,

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

već to čini i za one čiji glas se tek treba čuti.

(Applause)

(Pljesak)

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

Moji napadaji značajno su se smanjili, od onih dva do tri puta dnevno,

to sometimes two to three times in one year.

na ponekad samo dva do tri puta godišnje.

I went on --

Krenula sam --

(Applause)

(Pljesak)

I went on to employ five people,

Krenula sam sa zapošljavanjem petero ljudi

when I began what was Kenya's first

kada sam počela, bila je to u Keniji

free mental health and epilepsy support line.

prva besplatna podrška mentalnom zdravlju i oboljelima od epilepsije.

And I travel --

I putujem --

(Applause)

(Pljesak)

And I travel to speak about my affair,

Putujem kako bih govorila o svom stanju,

all these things that I had been told

o svemu što su mi govorili

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

što ljudi poput mene s epilepsijom nikada ne bi mogli.

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

Svake godine, stanovništvu veličine 80% Nairobija

gets diagnosed with epilepsy

dijagnosticira se epilepsija

across the globe.

po cijelom svijetu.

And they, like me,

I oni, poput mene,

go through the emotions of stigma and exclusion.

prolaze kroz osjećaj stigme i isključenosti.

And so I have made it my life journey

I tako sam od toga stvorila svoje životno putovanje

to keep these conversations going,

kako bi se ovakve priče nastavile,

and I keep confessing about my affair

a ja i dalje iznosim svom priču

so that those people who do not have the diagnosis

tako da oni koji nemaju ovu dijagnozu

might know and might have a constant reminder

mogu saznati i imati stalan podsjetnik

that it is alright to engage with people like us,

kako je sasvim u redu povezati se s ljudima poput nas,

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

te da sve dok će rušiti zidove stigme i isljučivanja,

that we, just like them,

mi, kao i oni,

can be able to take anything life throws at us.

možemo prihvatiti sve što nam život bude nosio.

Thank you.

Hvala vam.

(Applause)

(Pljesak)