Why I speak up about living with epilepsy | Sitawa Wafula

翻译人员: Yan Gao 校对人员: Linda Sheu

I have a confession.

我要坦白一件事。

I have been in an affair

我一直在谈一场恋爱，

since I was 17 years old.

从17岁开始到现在。

I wish I could talk about butterflies in my stomach

我希望当我想到这感情时，

能说说心里的小鹿乱撞，

or maps I drew on the ground

when I think about this affair,

能说说我在地上勾勒的地图，

but I cannot.

但是我不能。

I wish I could talk about sweet words spoken

我希望可以聊聊这恋爱中

or gifts that I received

说过的甜言蜜语

from this affair,

或是收到的礼物，

but I cannot.

但是我不能。

All I can tell you about is the aftermath,

我能说给你听的只有它的后果，

about days I spent constantly asking:

只有我日夜不停地问：

Why, why, why me?

为什么，为什么，为什么是我？

I remember how it all began.

我记得这一切是如何开始的。

I was in my final year of high school,

那时我在高中最后一年，

and my class had just won in sports,

我们班刚赢了体育比赛，

so we were singing and dancing and hugging each other.

大家唱歌、跳舞、互相拥抱。

I went and took a shower.

我去冲了个澡。

Then I went for dinner.

然后去吃晚餐。

And when I sat down to eat,

当我坐下准备吃饭时，

my teeth started chattering,

我的牙齿开始咯咯作响，

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

导致勺子放不进嘴里。

I rushed to the nurse's office,

我跑到医务室，

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

因为不能说话， 我只用手指着自己的嘴。

She didn't know what was happening,

她不知道发生了什么事，

so she told me to lie down,

于是让我躺下，

and it worked --

这方法有效——

after a few minutes, the chattering stopped.

几分钟后，牙齿不再打颤了。

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

我准备离开，但她告诉我——

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

不，她坚持让我——回宿舍睡觉。

Here I was in my final year of high school,

当时，我在高中毕业前的最后一年，

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

还有几个月就要参加高中毕业考试，

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

还有几天后的一组测验， 在肯尼亚叫“模拟（嘲笑）测验”，

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

这些测验是用来衡量 你是否为毕业考试做好准备了。

There is no way I was going to sleep

我不可能去睡觉，

and let a set of exams mock me.

让一组测验来嘲笑我。

I went to class, sat down,

于是我去了教室，坐下来，

took my Kenyan history notes,

拿出肯尼亚历史笔记，

and there I was, down Kenyan coastal town,

于是，我走近肯尼亚沿海城镇，

with the great Mekatilili wa Menza,

追随伟大的Mekatilili wa Menza——

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

带领她的人民抵抗英国殖民统治的 吉日利亚女人。

Then, without any notice,

然后，没有任何征兆，

my left hand started jerking,

我的左手开始抽搐，

and it was as if I was marking imaginary papers.

就好像我在想象出的纸上画画。

In and out it went,

来来回回，

and with every stroke, one by one,

随着每一次抽动，

my classmates stopped concentrating on their reading

同学们一个个停下书本，

and started looking at me.

开始看着我。

And I tried really hard to stop it,

我真的用尽力气去阻止它，

but I couldn't,

但做不到，

because it had a life of its own.

因为它有着自己的生命。

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

然后，当它确定 大家都在看着我们的时候，

in its final show and official introduction,

它的终场演出及正式介绍来了，

I had my first full-blown seizure,

我经历了人生第一次的 全身性癫痫发作，

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

也开始了一场持续15年的纠缠。

Seizures are the trademark characteristic for most types of epilepsy,

癫痫发作是大多数类型 癫痫病的标志特征，

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

每一个首次癫痫发作都需要 由医生评估，

to determine if one has epilepsy

以确定它是癫痫病，

or if it's a symptom of something else.

还是其它问题产生的症状。

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

我的情况是，证实我有癫痫。

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

我的大量时间呆在医院和家里，

and only went back to do my final exams.

只回去考了我的毕业考试。

I had seizures in between papers,

我在考试期间也有发作，

but managed to get good enough grades

但还是努力获得了足够好的成绩，

to be admitted for an actuarial science degree

被内罗毕大学

精算科学专业录取。

at the University of Nairobi.

(Applause)

（掌声）

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

不幸的是，我大二时不得不退学。

I didn't have good enough coping skills

我没有足够好的应付能力，

and a support community around me.

周围也没有支持的群体。

I was lucky enough to get a job,

很幸运，我找到一份工作，

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

但在公司癫痫发作了， 之后被解雇。

So I found myself in a space

我把自己包围在一个空间里，

where I was constantly asking myself

在里面我不停问自己，

why this had to happen to me.

为什么这种事非要发生在我身上。

I lived in denial for a long time,

很长时间里我都在逃避现实，

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

这种逃避可能是因为所发生的事，

dropping out of school and being fired from my job.

辍学和丢工作。

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

也可能是因为我听说的

关于癫痫和癫痫患者的事：

and about people living with epilepsy:

that they would never live on their own;

他们永远不能独立生活，

that they would never travel on their own

他们永远不能独自旅行，

or even get work;

甚至永远不能工作，

that they were outcasts,

他们是被遗弃的人，

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

他们拥有着需要被解救的灵魂。

And so the more I thought about these things,

我对这些事情想得越多，

the more my seizures became,

我的癫痫发作就越多，

and I spent days with my legs locked,

很长时间我的腿被固定住，

my speech became blurred

说话变得含糊，

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

发作结束的日子里，我是这样子。

Two or three days after a seizure,

癫痫发作后的两三天，

my head and my hand would still be twitching.

我的头和我的手仍一直抽搐。

I felt lost,

我很迷茫，

like I'd lost everything,

感觉失去了所有的一切，

and sometimes,

有时，

even the will to live.

甚至失去了生存的意愿。

(Sigh)

（叹气）

I had so much frustration in me.

我心里有太多沮丧。

And so I started writing,

所以我开始写作，

because the people around me didn't have answers

因为我周围的人

回答不了我的问题。

to the questions that I had.

And so I wrote my fears

所以我写出我的恐惧

and my doubts.

和疑惑。

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

我写下我的快乐时光、 悲伤时刻和特别难过的日子，

and I shared them on a blog.

在博客上分享它们。

And before long,

不久之后，

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

有癫痫患者

and their families,

以及家属，

and even those who did not have the diagnosis.

甚至没有患病的人 开始看到我、听我说。

And I moved from that girl who constantly asked why me

我从那个不断问自己 “为什么是我”的女孩，

to one who not only self-advocates,

变成一个不仅主张自我

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

而且为那些沉默者提出主张的人。

(Applause)

（掌声）

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

我的发作次数大大减少， 从每天两到三次，

to sometimes two to three times in one year.

到有时一年两到三次。

I went on --

我继续——

(Applause)

（掌声）

I went on to employ five people,

我聘用了五个人，

when I began what was Kenya's first

启动了肯尼亚的第一个

free mental health and epilepsy support line.

免费的心理健康和癫痫支持热线。

And I travel --

我旅行——

(Applause)

（掌声）

And I travel to speak about my affair,

我旅行各地去分享我的故事，

all these things that I had been told

所有那些曾被告知

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

像我这样有癫痫的人 永远做不到的事。

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

每年，全球范围内，

多达80%的内罗毕人

gets diagnosed with epilepsy

被确诊为癫痫。

across the globe.

And they, like me,

像我一样，

go through the emotions of stigma and exclusion.

他们经历着羞耻和排斥的情绪。

And so I have made it my life journey

所以我确定自己的人生旅途

to keep these conversations going,

就是让这些对话持续下去，

and I keep confessing about my affair

并且持续坦白我自己的故事，

so that those people who do not have the diagnosis

从而让那些没有患病的人

might know and might have a constant reminder

可以理解，并且可以不断被提醒：

that it is alright to engage with people like us,

与我们这样的人交往完全没有问题，

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

只要他们摧毁羞耻和排斥的壁垒，

that we, just like them,

那么我们，与他们一样，

can be able to take anything life throws at us.

能够面对生命赐予的一切。

Thank you.

谢谢。

(Applause)

（掌声）