I have been in an affair

我要坦白一件事

since I was 17 years old.

我正在談一段戀愛

I wish I could talk about butterflies in my stomach

這段感情從我 17 歲持續到現在

or maps I drew on the ground

談論這段感情時

when I think about this affair,

我希望能談談我的緊張與不安

but I cannot.

或是之前我畫在地上的地圖

I wish I could talk about sweet words spoken

但我不行

or gifts that I received

我希望能聊自己說過的情話

from this affair,

或從這段感情

but I cannot.

所收到的愛禮

All I can tell you about is the aftermath,

但我無法

about days I spent constantly asking:

我能告訴你們的 只有這段感情所帶來的的後遺症

Why, why, why me?

關於過去那段日子裡 我不斷自問的疑問

I remember how it all began.

為什麼？為什麼？為什麼是我？

I was in my final year of high school,

我仍記得當初是怎麼開始的

and my class had just won in sports,

在我高中最後一年

so we were singing and dancing and hugging each other.

我們班贏了運動比賽

I went and took a shower.

大家一起唱歌跳舞並互相擁抱

Then I went for dinner.

然後離開去沖澡

And when I sat down to eat,

再去吃晚餐

my teeth started chattering,

但當我坐下開始用餐時

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

我的牙齒開始咯咯地發出聲音

I rushed to the nurse's office,

湯匙放不進嘴巴

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

我趕緊衝去護理室

She didn't know what was happening,

當下由於說不了話 我只能指著自己的嘴

so she told me to lie down,

護士不知道發生了什麼事

and it worked --

所以她要我躺下

after a few minutes, the chattering stopped.

這方法有效

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

過了幾分鐘後 我的牙齒停止打顫

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

我本打算離去

Here I was in my final year of high school,

但她說：

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

喔不是；是她堅持我必須回宿舍睡覺

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

在高中的最後一年

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

考完期末考的幾個月後

There is no way I was going to sleep

和做完我們在肯亞稱之為 "mocks" 的模擬測驗幾天後

and let a set of exams mock me.

它是用來衡量學生 是否準備好期末考的模擬測驗

I went to class, sat down,

但是怕考不好所以哪敢去睡覺

took my Kenyan history notes,

我不能被這些考試擊倒

and there I was, down Kenyan coastal town,

考試當天我坐在教室

with the great Mekatilili wa Menza,

看著我準備的肯亞歷史筆記

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

讀到關於肯亞沿岸城鎮

Then, without any notice,

及 "Mekatilili wa Menza" 女士的故事

my left hand started jerking,

這位偉大的女性 領導群眾對抗英國殖民政府

and it was as if I was marking imaginary papers.

然後，沒有任何徵兆

In and out it went,

我的左手開始抽搐

and with every stroke, one by one,

抽搐的樣子 讓我看起來像是在畫圖

my classmates stopped concentrating on their reading

向裡向外不停地揮舞

and started looking at me.

一筆一筆地在畫圖一樣

And I tried really hard to stop it,

我同學都沒辦法專心念書

but I couldn't,

開始看著我

because it had a life of its own.

我想盡辦法試圖停下它的動作

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

但我辦不到

in its final show and official introduction,

因為我的手完全不聽我的指揮

I had my first full-blown seizure,

然後，當我確定大家都在注視我時

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

它最後的演出正式上場

Seizures are the trademark characteristic for most types of epilepsy,

就是我人生第一次的全身性癲癇發作

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

也開始了我和它 長達十五年的「不解之緣」

to determine if one has epilepsy

「抽搐」是癲癇症最常見的徵兆

or if it's a symptom of something else.

第一次抽搐發作後 必須經過醫生的詳細檢查

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

才能確定是否真的罹患了癲癇症

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

或是其他症狀的徵兆

and only went back to do my final exams.

而我則被診斷出患有癲癇

I had seizures in between papers,

我在醫院和家裡待了很長的一段時間

but managed to get good enough grades

只有在期末考時才去學校

to be admitted for an actuarial science degree

考試期間我的癲癇又發作了數次

at the University of Nairobi.

但我仍克服了

(Applause)

並考上奈洛比大學的精算科學學系

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

（鼓掌）

I didn't have good enough coping skills

不幸的是我必須在大二退學

and a support community around me.

我沒有很好的調適方法

I was lucky enough to get a job,

背後也沒團體給我支援

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

我很幸運能找到一個工作

So I found myself in a space

但因工作時癲癇發作被解雇了

where I was constantly asking myself

所以我找了一個地方躲起來

why this had to happen to me.

在那裏我不斷地問自己

I lived in denial for a long time,

為什麼這種事會發生在我身上？

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

很長一段時間我無法接受

dropping out of school and being fired from my job.

不能接受的原因 也許是因為那些已經發生的事

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

例如中途退學和被解雇

and about people living with epilepsy:

或是那些以前耳聞關於癲癇的事

that they would never live on their own;

和癲癇症患者的故事

that they would never travel on their own

那些人一輩子無法獨自生活

or even get work;

他們也無法獨自旅行

that they were outcasts,

或是去工作

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

他們被拋棄

And so the more I thought about these things,

為了這個他們無法擺脫的症狀

the more my seizures became,

所以我越是去煩惱這些事

and I spent days with my legs locked,

我的癲癇就更常復發

my speech became blurred

有一段時間裡 我的雙腳被固定著

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

我的口齒變得含糊不清

Two or three days after a seizure,

接連數天都是如此

my head and my hand would still be twitching.

每次癲癇發作後的兩三天內

I felt lost,

我的頭和手仍會抽筋

like I'd lost everything,

我感到迷惘

and sometimes,

我覺得像失去了所有

even the will to live.

有時……

(Sigh)

甚至沒有活下去的意願

I had so much frustration in me.

（啜泣）

And so I started writing,

我對自己深深感到挫折

because the people around me didn't have answers

所以我開始寫作

to the questions that I had.

因為週遭的人們

And so I wrote my fears

找不到我要的答案

and my doubts.

所以我開始寫下自己的恐懼和疑惑

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

to sometimes two to three times in one year.

從每天發作兩三次 到現在的每年二至三次

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.

然後我開始旅行──

And I travel --

（鼓掌）

(Applause)

我到各地分享我的故事

And I travel to speak about my affair,

講述那些我曾經被告知

all these things that I had been told

身為癲癇患者所不能做的事

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

每年約有相當於 奈洛比八成人口總數的人數

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

在全世界罹患癲癇症

gets diagnosed with epilepsy

這些人跟我一樣

across the globe.

忍受著被排擠和汙名化

And they, like me,

所以我將持續投入這類講座

go through the emotions of stigma and exclusion.

和分享我的親身經歷

And so I have made it my life journey

定為我的人生歷程

to keep these conversations going,

好讓那些無法被確診病因的人

and I keep confessing about my affair

或許能夠了解並能不斷地得到提醒

so that those people who do not have the diagnosis

讓他們知道 跟我們併肩而行是沒關係的

might know and might have a constant reminder

直到這些汙辱和排斥的高牆被推倒

that it is alright to engage with people like us,

我們跟他們都是相同的

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

我們也一樣能克服生命中的難題

that we, just like them,

謝謝

can be able to take anything life throws at us.

（鼓掌）

Thank you.

(Applause)