Why I speak up about living with epilepsy | Sitawa Wafula

譯者: Andy Lin 審譯者: Ming Lee

I have a confession.

我要坦白一件事

I have been in an affair

我正在談一段戀愛

since I was 17 years old.

這段感情從我 17 歲持續到現在

I wish I could talk about butterflies in my stomach

談論這段感情時

or maps I drew on the ground

我希望能談談我的緊張與不安

when I think about this affair,

或是之前我畫在地上的地圖

but I cannot.

但我不行

I wish I could talk about sweet words spoken

我希望能聊自己說過的情話

or gifts that I received

或從這段感情

from this affair,

所收到的愛禮

but I cannot.

但我無法

All I can tell you about is the aftermath,

我能告訴你們的 只有這段感情所帶來的的後遺症

about days I spent constantly asking:

關於過去那段日子裡 我不斷自問的疑問

Why, why, why me?

為什麼？為什麼？為什麼是我？

I remember how it all began.

我仍記得當初是怎麼開始的

I was in my final year of high school,

在我高中最後一年

and my class had just won in sports,

我們班贏了運動比賽

so we were singing and dancing and hugging each other.

大家一起唱歌跳舞並互相擁抱

I went and took a shower.

然後離開去沖澡

Then I went for dinner.

再去吃晚餐

And when I sat down to eat,

但當我坐下開始用餐時

my teeth started chattering,

我的牙齒開始咯咯地發出聲音

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

湯匙放不進嘴巴

I rushed to the nurse's office,

我趕緊衝去護理室

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

當下由於說不了話 我只能指著自己的嘴

She didn't know what was happening,

護士不知道發生了什麼事

so she told me to lie down,

所以她要我躺下

and it worked --

這方法有效

after a few minutes, the chattering stopped.

過了幾分鐘後 我的牙齒停止打顫

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

我本打算離去

但她說：

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

喔不是；是她堅持我必須回宿舍睡覺

Here I was in my final year of high school,

在高中的最後一年

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

考完期末考的幾個月後

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

和做完我們在肯亞稱之為 "mocks" 的模擬測驗幾天後

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

它是用來衡量學生 是否準備好期末考的模擬測驗

There is no way I was going to sleep

但是怕考不好所以哪敢去睡覺

and let a set of exams mock me.

我不能被這些考試擊倒

I went to class, sat down,

考試當天我坐在教室

took my Kenyan history notes,

看著我準備的肯亞歷史筆記

and there I was, down Kenyan coastal town,

讀到關於肯亞沿岸城鎮

with the great Mekatilili wa Menza,

及 "Mekatilili wa Menza" 女士的故事

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

這位偉大的女性 領導群眾對抗英國殖民政府

Then, without any notice,

然後，沒有任何徵兆

my left hand started jerking,

我的左手開始抽搐

and it was as if I was marking imaginary papers.

抽搐的樣子 讓我看起來像是在畫圖

In and out it went,

向裡向外不停地揮舞

and with every stroke, one by one,

一筆一筆地在畫圖一樣

my classmates stopped concentrating on their reading

我同學都沒辦法專心念書

and started looking at me.

開始看著我

And I tried really hard to stop it,

我想盡辦法試圖停下它的動作

but I couldn't,

但我辦不到

because it had a life of its own.

因為我的手完全不聽我的指揮

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

然後，當我確定大家都在注視我時

in its final show and official introduction,

它最後的演出正式上場

I had my first full-blown seizure,

就是我人生第一次的全身性癲癇發作

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

也開始了我和它 長達十五年的「不解之緣」

Seizures are the trademark characteristic for most types of epilepsy,

「抽搐」是癲癇症最常見的徵兆

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

第一次抽搐發作後 必須經過醫生的詳細檢查

to determine if one has epilepsy

才能確定是否真的罹患了癲癇症

or if it's a symptom of something else.

或是其他症狀的徵兆

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

而我則被診斷出患有癲癇

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

我在醫院和家裡待了很長的一段時間

and only went back to do my final exams.

只有在期末考時才去學校

I had seizures in between papers,

考試期間我的癲癇又發作了數次

but managed to get good enough grades

但我仍克服了

to be admitted for an actuarial science degree

並考上奈洛比大學的精算科學學系

at the University of Nairobi.

(Applause)

（鼓掌）

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

不幸的是我必須在大二退學

I didn't have good enough coping skills

我沒有很好的調適方法

and a support community around me.

背後也沒團體給我支援

I was lucky enough to get a job,

我很幸運能找到一個工作

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

但因工作時癲癇發作被解雇了

So I found myself in a space

所以我找了一個地方躲起來

where I was constantly asking myself

在那裏我不斷地問自己

why this had to happen to me.

為什麼這種事會發生在我身上？

I lived in denial for a long time,

很長一段時間我無法接受

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

不能接受的原因 也許是因為那些已經發生的事

dropping out of school and being fired from my job.

例如中途退學和被解雇

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

或是那些以前耳聞關於癲癇的事

and about people living with epilepsy:

和癲癇症患者的故事

that they would never live on their own;

那些人一輩子無法獨自生活

that they would never travel on their own

他們也無法獨自旅行

or even get work;

或是去工作

that they were outcasts,

他們被拋棄

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

為了這個他們無法擺脫的症狀

And so the more I thought about these things,

所以我越是去煩惱這些事

the more my seizures became,

我的癲癇就更常復發

and I spent days with my legs locked,

有一段時間裡 我的雙腳被固定著

my speech became blurred

我的口齒變得含糊不清

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

接連數天都是如此

Two or three days after a seizure,

每次癲癇發作後的兩三天內

my head and my hand would still be twitching.

我的頭和手仍會抽筋

I felt lost,

我感到迷惘

like I'd lost everything,

我覺得像失去了所有

and sometimes,

有時……

even the will to live.

甚至沒有活下去的意願

(Sigh)

（啜泣）

I had so much frustration in me.

我對自己深深感到挫折

And so I started writing,

所以我開始寫作

because the people around me didn't have answers

因為週遭的人們

找不到我要的答案

to the questions that I had.

And so I wrote my fears

所以我開始寫下自己的恐懼和疑惑

and my doubts.

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

我寫下自己快樂的時光 悲傷的和非常難過的日子

and I shared them on a blog.

我將這些分享在一個部落格上

And before long,

沒過多久

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

我開始被同樣患有癲癇的人關注

and their families,

還有他們的家人

and even those who did not have the diagnosis.

和那些沒有被診斷出病因的人

And I moved from that girl who constantly asked why me

我從原本只會自怨自艾

to one who not only self-advocates,

蛻變成一個不但懂得自我擁護

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

且可為同病相憐的人發聲的支持者

(Applause)

（鼓掌）

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

我癲癇的症狀已減緩不少

從每天發作兩三次 到現在的每年二至三次

to sometimes two to three times in one year.

I went on --

我接著──

(Applause)

（鼓掌）

I went on to employ five people,

接著我從雇用五個人作為開始

when I began what was Kenya's first

設立了肯亞第一個 免費的心理健康和癲癇支持群組

free mental health and epilepsy support line.

And I travel --

然後我開始旅行──

(Applause)

（鼓掌）

And I travel to speak about my affair,

我到各地分享我的故事

all these things that I had been told

講述那些我曾經被告知

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

身為癲癇患者所不能做的事

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

每年約有相當於 奈洛比八成人口總數的人數

gets diagnosed with epilepsy

在全世界罹患癲癇症

across the globe.

And they, like me,

這些人跟我一樣

go through the emotions of stigma and exclusion.

忍受著被排擠和汙名化

And so I have made it my life journey

所以我將持續投入這類講座

to keep these conversations going,

和分享我的親身經歷

and I keep confessing about my affair

定為我的人生歷程

so that those people who do not have the diagnosis

好讓那些無法被確診病因的人

might know and might have a constant reminder

或許能夠了解並能不斷地得到提醒

that it is alright to engage with people like us,

讓他們知道 跟我們併肩而行是沒關係的

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

直到這些汙辱和排斥的高牆被推倒

that we, just like them,

我們跟他們都是相同的

can be able to take anything life throws at us.

我們也一樣能克服生命中的難題

Thank you.

謝謝

(Applause)

（鼓掌）