TEDNairobi Ideas Search
Sitawa Wafula: Why I speak up about living with epilepsy
西塔瓦·瓦芙拉: 为何我要大声说出自己有癫痫？
Filmed:
Readability: 3.5
891,685 views
曾受困于癫痫的心理健康倡导者西塔瓦·瓦芙拉在写出自己故事的同时找到了力量。现在，她鼓励那些沉默的癫痫患者排除羞耻和排斥，分享自己的故事。
Sitawa Wafula - Mental health advocate
Sitawa Wafula started Kenya's first free mental health and epilepsy support line. Full bio
Sitawa Wafula started Kenya's first free mental health and epilepsy support line. Full bio
Double-click the English transcript below to play the video.
00:12
I have a confession.
0
785
2227
我要坦白一件事。
00:17
I have been in an affair
1
5038
2447
我一直在谈一场恋爱，
从17岁开始到现在。
00:19
since I was 17 years old.
2
7509
2203
00:22
I wish I could talk about
butterflies in my stomach
butterflies in my stomach
3
10884
3847
我希望当我想到这感情时，
能说说心里的小鹿乱撞，
00:26
or maps I drew on the ground
4
14755
2839
能说说我在地上勾勒的地图，
00:29
when I think about this affair,
5
17618
2285
但是我不能。
00:31
but I cannot.
6
19927
1419
00:34
I wish I could talk about
sweet words spoken
sweet words spoken
7
22076
3260
我希望可以聊聊这恋爱中
说过的甜言蜜语
00:37
or gifts that I received
8
25360
2073
或是收到的礼物，
00:39
from this affair,
9
27457
1720
但是我不能。
00:41
but I cannot.
10
29201
1476
00:43
All I can tell you about is the aftermath,
11
31918
3179
我能说给你听的只有它的后果，
00:47
about days I spent constantly asking:
12
35922
3752
只有我日夜不停地问：
为什么，为什么，为什么是我？
00:51
Why, why, why me?
13
39698
3373
00:57
I remember how it all began.
14
45420
2145
我记得这一切是如何开始的。
01:00
I was in my final year of high school,
15
48268
2787
那时我在高中最后一年，
我们班刚赢了体育比赛，
01:03
and my class had just won in sports,
16
51079
3123
大家唱歌、跳舞、互相拥抱。
01:06
so we were singing and dancing
and hugging each other.
and hugging each other.
17
54226
4719
我去冲了个澡。
01:10
I went and took a shower.
18
58969
1784
然后去吃晚餐。
01:12
Then I went for dinner.
19
60777
1584
01:15
And when I sat down to eat,
20
63241
2250
当我坐下准备吃饭时，
我的牙齿开始咯咯作响，
01:17
my teeth started chattering,
21
65515
2550
导致勺子放不进嘴里。
01:20
and so I couldn't put
the spoon in my mouth.
the spoon in my mouth.
22
68089
2535
我跑到医务室，
01:22
I rushed to the nurse's office,
23
70648
2554
因为不能说话，
我只用手指着自己的嘴。
我只用手指着自己的嘴。
01:25
and because I couldn't talk,
I just pointed at my mouth.
I just pointed at my mouth.
24
73226
3176
01:29
She didn't know what was happening,
25
77164
1786
她不知道发生了什么事，
于是让我躺下，
01:30
so she told me to lie down,
26
78974
2084
这方法有效——
01:33
and it worked --
27
81082
1272
几分钟后，牙齿不再打颤了。
01:34
after a few minutes,
the chattering stopped.
the chattering stopped.
28
82378
2463
我准备离开，但她告诉我——
01:36
I was about to dash out,
and she told me --
and she told me --
29
84865
4428
不，她坚持让我——回宿舍睡觉。
01:41
no, she insisted -- that I go up
to the dormitories to sleep.
to the dormitories to sleep.
30
89317
4130
01:46
Here I was in my final year
of high school,
of high school,
31
94265
3117
当时，我在高中毕业前的最后一年，
还有几个月就要参加高中毕业考试，
01:49
just a few months from doing
my end of high school exams
my end of high school exams
32
97406
4555
还有几天后的一组测验，
在肯尼亚叫“模拟（嘲笑）测验”，
在肯尼亚叫“模拟（嘲笑）测验”，
01:53
and a few days from doing a set
of exams we call here in Kenya "mocks,"
of exams we call here in Kenya "mocks,"
33
101985
4889
这些测验是用来衡量
你是否为毕业考试做好准备了。
你是否为毕业考试做好准备了。
01:58
which are somehow meant to gauge
how prepared one is for the final exams.
how prepared one is for the final exams.
34
106898
5681
我不可能去睡觉，
02:04
There is no way I was going to sleep
35
112603
2292
让一组测验来嘲笑我。
02:06
and let a set of exams mock me.
36
114919
2444
于是我去了教室，坐下来，
02:09
I went to class, sat down,
37
117387
3003
拿出肯尼亚历史笔记，
02:12
took my Kenyan history notes,
38
120414
2355
于是，我走近肯尼亚沿海城镇，
02:14
and there I was, down Kenyan coastal town,
39
122793
3765
追随伟大的Mekatilili wa Menza——
02:18
with the great Mekatilili wa Menza,
40
126582
2483
带领她的人民抵抗英国殖民统治的
吉日利亚女人。
吉日利亚女人。
02:21
the Giriama woman who led her people
against British colonial rule.
against British colonial rule.
41
129089
4998
02:27
Then, without any notice,
42
135499
2916
然后，没有任何征兆，
我的左手开始抽搐，
02:30
my left hand started jerking,
43
138439
2777
02:34
and it was as if I was marking
imaginary papers.
imaginary papers.
44
142555
2736
就好像我在想象出的纸上画画。
02:38
In and out it went,
45
146073
2406
来来回回，
02:41
and with every stroke, one by one,
46
149133
3195
随着每一次抽动，
同学们一个个停下书本，
02:44
my classmates stopped
concentrating on their reading
concentrating on their reading
47
152352
3483
开始看着我。
02:47
and started looking at me.
48
155859
2034
02:50
And I tried really hard to stop it,
49
158556
2671
我真的用尽力气去阻止它，
但做不到，
02:53
but I couldn't,
50
161251
1656
因为它有着自己的生命。
02:54
because it had a life of its own.
51
162931
2050
02:58
And then, when it was sure
everybody was looking at us,
everybody was looking at us,
52
166287
4622
然后，当它确定
大家都在看着我们的时候，
大家都在看着我们的时候，
它的终场演出及正式介绍来了，
03:02
in its final show
and official introduction,
and official introduction,
53
170933
4190
我经历了人生第一次的
全身性癫痫发作，
全身性癫痫发作，
03:07
I had my first full-blown seizure,
54
175147
2809
也开始了一场持续15年的纠缠。
03:09
which was the beginning of what
has been a 15-year-long affair.
has been a 15-year-long affair.
55
177980
5153
03:17
Seizures are the trademark characteristic
for most types of epilepsy,
for most types of epilepsy,
56
185541
6555
癫痫发作是大多数类型
癫痫病的标志特征，
癫痫病的标志特征，
每一个首次癫痫发作都需要
由医生评估，
由医生评估，
03:24
and every first-ever seizure
needs to be assessed by a doctor
needs to be assessed by a doctor
57
192120
4478
以确定它是癫痫病，
03:28
to determine if one has epilepsy
58
196622
2503
还是其它问题产生的症状。
03:31
or if it's a symptom of something else.
59
199149
2686
我的情况是，证实我有癫痫。
03:33
In my case, it was confirmed
that I had epilepsy.
that I had epilepsy.
60
201859
3856
我的大量时间呆在医院和家里，
03:38
I spent a large chunk of my time
in hospital and at home,
in hospital and at home,
61
206271
4895
只回去考了我的毕业考试。
03:43
and only went back to do my final exams.
62
211190
3285
03:47
I had seizures in between papers,
63
215435
3849
我在考试期间也有发作，
但还是努力获得了足够好的成绩，
03:51
but managed to get good enough grades
64
219308
2136
被内罗毕大学
03:53
to be admitted for an actuarial
science degree
science degree
65
221468
3260
精算科学专业录取。
03:56
at the University of Nairobi.
66
224752
1591
03:58
(Applause)
67
226367
3448
（掌声）
04:04
Unfortunately, I had to drop out
in my second year.
in my second year.
68
232710
4563
不幸的是，我大二时不得不退学。
我没有足够好的应付能力，
04:09
I didn't have good enough coping skills
69
237297
2443
周围也没有支持的群体。
04:11
and a support community around me.
70
239764
2136
很幸运，我找到一份工作，
04:14
I was lucky enough to get a job,
71
242495
1910
但在公司癫痫发作了，
之后被解雇。
之后被解雇。
04:17
but I was fired from that job
when I had a seizure in the workplace.
when I had a seizure in the workplace.
72
245230
4684
04:22
So I found myself in a space
73
250701
4124
我把自己包围在一个空间里，
在里面我不停问自己，
04:26
where I was constantly asking myself
74
254849
3432
为什么这种事非要发生在我身上。
04:30
why this had to happen to me.
75
258305
2471
04:33
I lived in denial for a long time,
76
261728
2858
很长时间里我都在逃避现实，
04:37
and the denial was maybe because
of the things that had happened,
of the things that had happened,
77
265444
6861
这种逃避可能是因为所发生的事，
辍学和丢工作。
04:44
dropping out of school
and being fired from my job.
and being fired from my job.
78
272329
2720
04:47
Or maybe it was because of the things
I had heard about epilepsy
I had heard about epilepsy
79
275703
4015
也可能是因为我听说的
关于癫痫和癫痫患者的事：
04:51
and about people living with epilepsy:
80
279742
2585
他们永远不能独立生活，
04:54
that they would never live on their own;
81
282351
2232
他们永远不能独自旅行，
04:56
that they would never travel on their own
82
284607
2241
甚至永远不能工作，
04:58
or even get work;
83
286872
1420
05:01
that they were outcasts,
84
289371
1849
他们是被遗弃的人，
他们拥有着需要被解救的灵魂。
05:03
with a spirit in them that they needed
to be delivered from.
to be delivered from.
85
291244
3823
05:08
And so the more I thought
about these things,
about these things,
86
296662
3627
我对这些事情想得越多，
我的癫痫发作就越多，
05:12
the more my seizures became,
87
300313
3677
很长时间我的腿被固定住，
05:16
and I spent days with my legs locked,
88
304014
3105
说话变得含糊，
05:19
my speech became blurred
89
307143
3421
发作结束的日子里，我是这样子。
05:22
and on days on end, this is how I'd be.
90
310588
3661
05:27
Two or three days after a seizure,
91
315047
2033
癫痫发作后的两三天，
我的头和我的手仍一直抽搐。
05:29
my head and my hand
would still be twitching.
would still be twitching.
92
317104
3230
05:34
I felt lost,
93
322259
1604
我很迷茫，
05:36
like I'd lost everything,
94
324680
1944
感觉失去了所有的一切，
05:39
and sometimes,
95
327533
1457
有时，
05:42
even the will to live.
96
330776
1719
甚至失去了生存的意愿。
05:53
(Sigh)
97
341724
1342
（叹气）
06:00
I had so much frustration in me.
98
348557
2535
我心里有太多沮丧。
06:04
And so I started writing,
99
352001
1547
所以我开始写作，
因为我周围的人
06:05
because the people around me
didn't have answers
didn't have answers
100
353572
2839
回答不了我的问题。
06:08
to the questions that I had.
101
356435
1955
06:11
And so I wrote my fears
102
359109
2702
所以我写出我的恐惧
和疑惑。
06:13
and my doubts.
103
361835
1300
06:15
I wrote about my good days
and my bad days and my really ugly days,
and my bad days and my really ugly days,
104
363929
4267
我写下我的快乐时光、
悲伤时刻和特别难过的日子，
悲伤时刻和特别难过的日子，
在博客上分享它们。
06:20
and I shared them on a blog.
105
368220
1750
06:23
And before long,
106
371078
1338
不久之后，
06:25
I began to be seen and heard
by people who had epilepsy
by people who had epilepsy
107
373488
3631
有癫痫患者
以及家属，
06:29
and their families,
108
377143
1434
甚至没有患病的人
开始看到我、听我说。
开始看到我、听我说。
06:30
and even those who did not
have the diagnosis.
have the diagnosis.
109
378601
2836
06:33
And I moved from that girl
who constantly asked why me
who constantly asked why me
110
381953
4090
我从那个不断问自己
“为什么是我”的女孩，
“为什么是我”的女孩，
变成一个不仅主张自我
06:38
to one who not only self-advocates,
111
386067
2787
而且为那些沉默者提出主张的人。
06:40
but does it for those who are yet
to find their voices.
to find their voices.
112
388878
3492
06:47
(Applause)
113
395377
4850
（掌声）
06:55
My seizures are greatly reduced,
from two to three times a day,
from two to three times a day,
114
403081
3944
我的发作次数大大减少，
从每天两到三次，
从每天两到三次，
到有时一年两到三次。
06:59
to sometimes two to three
times in one year.
times in one year.
115
407049
3407
我继续——
07:02
I went on --
116
410480
1210
（掌声）
07:03
(Applause)
117
411714
3964
07:09
I went on to employ five people,
118
417479
2604
我聘用了五个人，
启动了肯尼亚的第一个
07:12
when I began what was Kenya's first
119
420107
2261
免费的心理健康和癫痫支持热线。
07:14
free mental health
and epilepsy support line.
and epilepsy support line.
120
422392
3078
我旅行——
07:17
And I travel --
121
425862
1322
（掌声）
07:19
(Applause)
122
427208
2297
我旅行各地去分享我的故事，
07:21
And I travel to speak about my affair,
123
429529
4498
所有那些曾被告知
07:26
all these things that I had been told
124
434051
2357
像我这样有癫痫的人
永远做不到的事。
永远做不到的事。
07:28
people like me living with epilepsy
could never be able to do.
could never be able to do.
125
436432
4357
每年，全球范围内，
07:33
Every year, a population
as big as 80 percent of Nairobi
as big as 80 percent of Nairobi
126
441290
5216
多达80%的内罗毕人
07:38
gets diagnosed with epilepsy
127
446530
2765
被确诊为癫痫。
07:41
across the globe.
128
449319
1439
07:43
And they, like me,
129
451346
1159
像我一样，
他们经历着羞耻和排斥的情绪。
07:44
go through the emotions
of stigma and exclusion.
of stigma and exclusion.
130
452529
4930
07:50
And so I have made it my life journey
131
458602
3476
所以我确定自己的人生旅途
就是让这些对话持续下去，
07:54
to keep these conversations going,
132
462102
2584
并且持续坦白我自己的故事，
07:56
and I keep confessing about my affair
133
464710
3175
从而让那些没有患病的人
07:59
so that those people who do not
have the diagnosis
have the diagnosis
134
467909
3354
可以理解，并且可以不断被提醒：
08:03
might know and might have
a constant reminder
a constant reminder
135
471287
3937
与我们这样的人交往完全没有问题，
08:07
that it is alright to engage
with people like us,
with people like us,
136
475248
3180
只要他们摧毁羞耻和排斥的壁垒，
08:10
that as long as they pull down
the walls of stigma and exclusion,
the walls of stigma and exclusion,
137
478452
5560
那么我们，与他们一样，
08:16
that we, just like them,
138
484036
2217
能够面对生命赐予的一切。
08:18
can be able to take anything
life throws at us.
life throws at us.
139
486277
3680
谢谢。
08:21
Thank you.
140
489981
1183
（掌声）
08:23
(Applause)
141
491188
4403
ABOUT THE SPEAKER
Sitawa Wafula - Mental health advocateSitawa Wafula started Kenya's first free mental health and epilepsy support line.
Why you should listen
Sitawa Wafula is a blogger and nomadic mental health crusader. She's using her personal journey as a rape survivor living with a dual diagnosis of epilepsy and bipolar disorder to provide people in Africa with information and support to handle mental health conditions and deal with everyday life.
Wafula is also an Aspen New Voices Fellow with the Aspen Institute, USA and a non-communicable disease champion under the Ministry of Health in her home country, Kenya.
Sitawa Wafula | Speaker | TED.com