Why I speak up about living with epilepsy | Sitawa Wafula

Translator: Nelson Simfukwe Reviewer: Joachim Mangilima

Nina jambo la kushuhudia.

I have a confession.

I have been in an affair

Nimekuwa katika mahusiano

since I was 17 years old.

tangu nikiwa na miaka 17.

I wish I could talk about butterflies in my stomach

Natamani ningeongelea kuhusu vipepeo ndani ya tumbo langu

or maps I drew on the ground

au ramani nilizochora ardhini

when I think about this affair,

kila ninapowaza kuhusu uhusiano huu,

but I cannot.

lakini siwezi.

I wish I could talk about sweet words spoken

Natamani ningeongelea kuhusu maneno matamu yaliyotamkwa

or gifts that I received

au zawadi nilizowahi kupokea

from this affair,

kutokana na uhusiano huu,

but I cannot.

lakini siwezi.

All I can tell you about is the aftermath,

Yote ninayoweza kukwambia ni matokeo,

about days I spent constantly asking:

ya kuhusu siku nilizotumia nikijiuliza mfululizo;

Why, why, why me?

Kwanini, kwanini, kwanini mimi?

I remember how it all began.

Nakumbuka yote haya yalipoanzia.

I was in my final year of high school,

Nilikuwa katika mwaka wangu wa mwisho wa shule ya sekondari,

and my class had just won in sports,

na darasa langu lilikuwa limeshinda katika michezo,

so we were singing and dancing and hugging each other.

hivyo tulikuwa tukiimba na kucheza na kukumbatiana.

I went and took a shower.

Nilikwenda kuoga.

Then I went for dinner.

Kisha nikaenda kupata chakula cha jioni.

And when I sat down to eat,

Na nilipokaa ili nipate chakula,

my teeth started chattering,

meno yangu yakaanza kugongana,

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

na nikashindwa kuweka kijiko katika mdomo wangu.

I rushed to the nurse's office,

Nilikimbia katika ofisi ya nesi,

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

na kwa sababu nilikuwa siwezi kuongea, nilinyooshea kidole mdomoni mwangu.

She didn't know what was happening,

Hakuelewa ni jambo gani lililokuwa likitokea,

so she told me to lie down,

aliniambia nilale

and it worked --

ilinisaidia --

after a few minutes, the chattering stopped.

baada ya dakika chache, kugongana kwa meno kuliacha.

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

Nilitaka kuondoka haraka, kisha akaniambia --

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

Hapana, akisisitiza -- kwamba niende bwenini kulala.

Here I was in my final year of high school,

Wakati huu nilikuwa mwaka wa mwisho wa elimu yangu ya sekondari,

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

miezi michache tu kabla sijaanza mitihani yangu ya mwisho

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

na siku chache kabla ya kufanya mitihani ambayo kwa hapa Kenya tunaiita "mocks"

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

ambayo dhumuni lake ni kumpima mwanafunzi ni kwa namna gani amejiandaa na mtihani wa mwisho.

There is no way I was going to sleep

Hakuna namna ningeweza kulala

and let a set of exams mock me.

na kuacha mitihani hii inifanyie mzaha.

I went to class, sat down,

Nilienda darasani, nikaketi,

took my Kenyan history notes,

nikachukua notisi zangu za historia ya Kenya,

and there I was, down Kenyan coastal town,

Nikaanza kusoma, kuhusu miji ya pwani za Kenya,

with the great Mekatilili wa Menza,

kuhusu mfalme Mekatili wa Menza,

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

mwanamke wa Giriama aliyeongoza watu wake kupinga ukoloni wa Waingereza.

Then, without any notice,

Baada ya hapo, bila kutambua chochote,

my left hand started jerking,

mkono wangu wa kushoto ukaanza kutetemeka,

and it was as if I was marking imaginary papers.

na ikawa kama naweka alama katika karatasi la kufikirika.

In and out it went,

Ndani na nje,

and with every stroke, one by one,

na kila mjongeo, mmoja baada ya mwingine,

my classmates stopped concentrating on their reading

wanadarasa wenzangu wakaacha kujisomea

and started looking at me.

na wakaanza kunishangaa mimi.

And I tried really hard to stop it,

Na kujaribu kwa bidii zote kuzuia hali hiyo,

but I couldn't,

lakini sikuweza,

because it had a life of its own.

kwa sababu ulikuwa na aina yake ya maisha.

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

Kisha, ulipokuwa umehakikisha kwamba kila mtu alikuwa akituangalia,

in its final show and official introduction,

Ukaonyesha rasmi,

I had my first full-blown seizure,

Kuwa na degedege kwa mara ya kwanza,

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

ambapo ilikuwa ni mwanzo wa mahusiano ambayo yana miaka 15 mpaka sasa.

Seizures are the trademark characteristic for most types of epilepsy,

Mpapatiko ni moja dalili ya aina nyingi za kifafa,

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

na kila mpapatiko wowote wa mapema hutakiwa kuchunguzwa na daktari

to determine if one has epilepsy

kugundua kama mtu ana kifafa

or if it's a symptom of something else.

au kama ni dalili ya ugonjwa mwingine.

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

Katika tatizo langu, iligundulika kwamba nilikuwa na kifafa.

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

Nilitumia muda mwingi sana hospitali na nyumbani,

and only went back to do my final exams.

na shule nilirudi kufanya mtihani wangu wa mwisho tu.

I had seizures in between papers,

Nilikuwa nikipatwa na mpapatiko katika ya mitihani,

but managed to get good enough grades

lakini nilifanikiwa kupata alama nzuri za kutosha

to be admitted for an actuarial science degree

kupata nafasi ya kujiunga na shahada ya sayansi ya takwimu za bima

at the University of Nairobi.

katika chuo cha Nairobi.

(Applause)

(Makofi)

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

Kwa bahati mbaya, niliacha chuo nikiwa mwaka wa pili.

I didn't have good enough coping skills

Sikuwa na uwezo wa kutosha wa kuendana na wenzangu

and a support community around me.

na jamii iliyokuwa inanizunguka.

I was lucky enough to get a job,

Nilibahatika kupata kazi,

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

lakini nilifukuzwa baada ya kupatwa na mpapatiko nikiwa kazini.

So I found myself in a space

Nikajikuta katika mahala

where I was constantly asking myself

ambapo nilikuwa najiuliza kila wakati

why this had to happen to me.

kwanini suala hili limenitokea mimi.

I lived in denial for a long time,

Nimeishi katika kukataa ukweli kwa muda mrefu,

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

na kujikataa huku pengine ni kwa sababu ya mambo ambayo yalitokea,

dropping out of school and being fired from my job.

kuacha chuo na kufukuzwa kazi.

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

Au kwa sababu ya vitu nilivyosikia kuhusu kifafa

and about people living with epilepsy:

na kuhusu watu wanaoishi na kifafa;

that they would never live on their own;

kwamba hawawezi kuishi wenyewe

that they would never travel on their own

na hawawezi kusafiri wakiwa peke yao

or even get work;

au hata kupata kazi;

that they were outcasts,

Kwamba ni watu walio tofauti,

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

walio na roho ambayo wanatakiwa kuokolewa kutoka hiyo roho.

And so the more I thought about these things,

Hivyo, nilipokuwa nikizidi kuwaza kuhusu haya mambo,

the more my seizures became,

na ndiyo hali yangu ilikuwa ikinitokea,

and I spent days with my legs locked,

Niliishi miguu yangu ikiwa inafungwa kamba kwa siku kadhaa,

my speech became blurred

sauti yangu ilikuwa ikififia

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

na katika mwisho wa siku, hivi ndivyo ambavyo ningekuwa.

Two or three days after a seizure,

Siku mbili au tatu baada ya mpapatiko,

my head and my hand would still be twitching.

kichwa na mikono yangu vilikuwa bado vinatingishika.

I felt lost,

Nilijihisi kupotea,

like I'd lost everything,

kama vile ningepoteza kila kitu,

and sometimes,

na wakati mwingine,

even the will to live.

hata shauri la kuishi.

(Sigh)

(Mguno)

I had so much frustration in me.

Nilikuwa na msongo mkubwa wa mawazo.

And so I started writing,

Nikaanza kuandika,

because the people around me didn't have answers

kwa sababu watu waliokuwa wananizunguka hawakuwa na majibu

to the questions that I had.

ya maswali niliyokuwa nayo.

And so I wrote my fears

Kisha nikaandika hofu zangu zote

and my doubts.

na wasiwasi wangu.

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

Niliandika kuhusu siku zangu nzuri na siku zangu mbaya na zile zilizo mbaya zaidi,

and I shared them on a blog.

kisha nikashirikisha katika blogu.

And before long,

Na kabla ya muda kupita,

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

Nilianza kuonekana na kusikika na watu waliokuwa na kifafa

and their families,

na familia zao,

and even those who did not have the diagnosis.

na hata wale ambao hawana ugonjwa huu.

And I moved from that girl who constantly asked why me

Na nikaondoka kutoka kwa yule msichana ambae alikuwa akijiuliza ni kwanini mimi kila wakati mimi

to one who not only self-advocates,

na nikawa ambae sio tu najishauri mwenyewe

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

lakini hata kwa wale ambao bado hawajatambua sauti zao.

(Applause)

(Makofi)

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

Mpapatiko wangu umepungua mno, kutoka mara mbili hadi tatu kwa siku,

to sometimes two to three times in one year.

na wakati mwingine mara mbili hadi tatu ndani ya mwaka.

I went on --

Nikaendelea --

(Applause)

(Makofi)

I went on to employ five people,

Nikafanikiwa kuajiri watu watano,

when I began what was Kenya's first

nilipoanzisha inayofahamika kama taasisi ya kwanza Kenya

free mental health and epilepsy support line.

ya bure kuhusu ushauri wa afya ya akili na kifafa.

And I travel --

Na nikasafiri --

(Applause)

(Makofi)

And I travel to speak about my affair,

Nikasafiri kuongelea kuhusu uhusiano wangu,

all these things that I had been told

vitu hivi vyote ambavyo niliambiwa

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

kwamba watu wenye kifafa kama mimi hawatoweza kamwe.

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

Kila mwaka, watu takribani asilimia 80 sawa na watu waliopo jijini Nairobi

gets diagnosed with epilepsy

hugundulika kuwa na kifafa

across the globe.

dunia nzima.

And they, like me,

Na ni watu kama mimi.

go through the emotions of stigma and exclusion.

ambao wanapitia hisia za unyanyapaa na kutengwa.

And so I have made it my life journey

Nimeifanya kuwa safari ya maisha yangu

to keep these conversations going,

kufanya maongezi yaendelee,

and I keep confessing about my affair

na bado ninakubaliana na uhusiano wangu

so that those people who do not have the diagnosis

Ili watu ambao hawana kifafa

might know and might have a constant reminder

wanaweza tambua na kukumbuka kila wakati

that it is alright to engage with people like us,

kwamba hakuna tatizo kuwa pamoja na watu kama sisi.

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

kwa kadiri wanavyodidimiza ukuta wala unyanyapaa na kutengwa,

that we, just like them,

Ya kwamba sisi, kama wao,

can be able to take anything life throws at us.

tunaweza kabiliana na chochote kinachotujia maishani.

Thank you.

Asante.

(Applause)

(Makofi)