TED-Ed Weekend
Esha Alwani: What it's like to have Tourette's -- and how music gives me back control
埃莎·阿尔瓦尼: 得了图雷特氏病是什么样——音乐如何让我重新控制自己
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埃莎·阿尔瓦尼(Esha Alwani)六岁时开始写歌，就在她被诊断出患有图雷特综合症(Tourette syndrome)后不久。她注意到一件令人惊奇的事情:每当她演奏音乐时，她不由自主的抽搐突然消失了。听阿瓦尼讲述她如何探索音乐的力量，并倾听她的钢琴民谣《我不爱你(我的面具)》的空灵表演。
Esha Alwani - Singer-songwriter
Esha Alwani's message to the world is simple: "Music is healing therapy, and we need to make a place for it in our lives." Full bio
Esha Alwani's message to the world is simple: "Music is healing therapy, and we need to make a place for it in our lives." Full bio
Double-click the English transcript below to play the video.
00:12
I'd like you to imagine
what it would feel like
what it would feel like
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我想让大家想象一下
如下情况会怎样，
如下情况会怎样，
00:16
if, for two whole minutes,
your left arm was continuously flapping,
your left arm was continuously flapping,
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假如，整整两分钟，你的
左臂在不停地拍打着，
左臂在不停地拍打着，
00:21
your eyes were constantly rolling,
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你的眼睛在不停的翻滚，
00:23
your jaw was clenching so hard
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你的下巴咬的紧紧的
00:25
that it felt like your teeth
were about to break,
were about to break,
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都要把牙齿咬碎了，
00:28
and every ten seconds,
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并且每10秒钟，
00:30
you were forced to let out
a loud, high-pitched screech.
a loud, high-pitched screech.
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你都被迫发出一声高亢的尖叫。
00:34
(Tic)
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（抽搐）
00:37
This is how I lived
at the young age of six,
at the young age of six,
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这就是我6岁时候的样子，
00:40
every waking moment, seven days a week.
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一周7天，每一个醒着的时候。
00:43
(Tic)
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（抽搐）
00:44
And these were only some of my symptoms.
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并且这只是我的一些症状。
00:48
When these symptoms surfaced,
my life literally changed overnight.
my life literally changed overnight.
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当这些症状出现时，我的生活
一夜间被彻底颠覆了。
一夜间被彻底颠覆了。
00:52
I could no longer go to school,
see my friends or even eat out,
see my friends or even eat out,
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我无法继续上学，
看朋友或者外出就餐，
看朋友或者外出就餐，
00:56
because my tics would attract
the attention of everyone in the room.
the attention of everyone in the room.
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因为我的抽搐会吸引房间中
每个人的注意。
每个人的注意。
01:01
In search for a cure, we flew to New York
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为了寻找治疗，我们飞到纽约
01:04
to meet with the best pediatric
neuropsychologist my parents could find.
neuropsychologist my parents could find.
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去见我父母能找到的最好的
儿科神经心理学家。
儿科神经心理学家。
01:09
(Tic)
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（抽搐）
01:11
But the doctor did not give us
the easy remedy we had hoped for.
the easy remedy we had hoped for.
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但医生并没有给我们
所希望的简单治疗方法。
所希望的简单治疗方法。
01:15
Instead, she diagnosed me
with an incurable neurological disorder,
with an incurable neurological disorder,
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反之，她诊断我患有一种
无法治愈的神经障碍
无法治愈的神经障碍
01:20
Tourette syndrome.
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图雷特氏病（抽动障碍症）。
01:22
Oftentimes, medication can be
an essential and valuable part
an essential and valuable part
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通常，药物治疗是必不可少，
很有价值
很有价值
01:26
of many treatment processes.
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的治疗环节。
01:28
But in my case, the drugs
only made things worse.
only made things worse.
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但在我的情况中，
药物却让事情变得更糟了。
药物却让事情变得更糟了。
01:32
One drug put me in a wheelchair,
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有一种药物让我坐上了轮椅，
01:34
because my legs had gotten so numb
that I couldn't move them.
that I couldn't move them.
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因为我的腿麻木到无法动弹。
01:39
Another one caused me to hallucinate.
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另一种药物让我产生幻觉。
01:41
I would see green people running after me,
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我会看到绿色的人追着我跑，
01:43
threatening to boil me in a pot
and drink me as soup.
and drink me as soup.
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威胁要把我煮在锅里，当汤喝。
01:46
And it was really scary.
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我真是非常害怕。
01:48
We tried drug after drug
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我们试了一种又一种药物
01:50
to find something that would bring me
some sort of relief.
some sort of relief.
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去寻找能让我解脱的药物。
01:53
But every single attempt
just ended up making things worse.
just ended up making things worse.
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但每次尝试的结果只是
让事情变得更糟糕。
让事情变得更糟糕。
01:59
It is estimated that in 2013
in the United States alone,
in the United States alone,
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据估计2013年仅在美国，
02:04
the prescription drug expenditure
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用来治疗神经系统疾病和精神疾病
02:05
to treat neurological conditions
and mental illness
and mental illness
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的处方药的开支
02:08
was about 89 billion dollars annually.
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每年就高达890亿美元。
02:13
But imagine if there were a way
to treat these conditions
to treat these conditions
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但是想象一下
如果有一种治疗这些状况
如果有一种治疗这些状况
02:16
without a price or without side effects.
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却无任何成本或副作用的
方法会是怎样？
方法会是怎样？
02:21
Imagine if your doctor prescribed you
a daily dose of music.
a daily dose of music.
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假象你的医生每天给你
开的是一剂音乐。
开的是一剂音乐。
02:26
I'm here today to share with you
my personal experience with music
my personal experience with music
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我今天在这里想和你们分享
我个人与音乐的体验
我个人与音乐的体验
02:30
and the effect that it had
on my neurological disorder.
on my neurological disorder.
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以及它对我神经紊乱的影响。
02:33
(Tic)
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（抽搐）
02:35
Tourette syndrome
is essentially a series
is essentially a series
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图雷特综合症本质上是一系列
02:38
of involuntary movements and sounds,
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不自主的动作和声音，
02:40
known as tics.
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被人们称为抽搐。
02:42
The best way for me to really describe
what it's like to have Tourette syndrome
what it's like to have Tourette syndrome
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对我来说，描述图雷特综合症
最好方式是
最好方式是
02:46
is something I'm sure
you're all very familiar with --
you're all very familiar with --
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我确定你们都很熟悉的——
02:48
the hiccups.
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打嗝。
02:50
You can try to stop yourself from the act.
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你可以试着阻止这样做。
02:52
You can hold your breath and count to 10,
or drink water upside down,
or drink water upside down,
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你可以屏住呼吸数到10，
或者倒过来喝水，
或者倒过来喝水，
02:56
but there is just nothing
you can do about it
you can do about it
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但你仍然对它毫无作用，
02:58
until the sensation passes
and the hiccups have taken their course.
and the hiccups have taken their course.
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直到这种感觉消失，打嗝也停止。
03:03
I often lay on my bedroom floor
after an attack of tics,
after an attack of tics,
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受到抽搐袭击时，我常常躺在卧室的地板上，
03:07
feeling exhausted and in despair.
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感到疲惫和绝望。
03:09
(Tic)
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（抽搐）
03:10
My equally desperate mother
would attempt to soothe me and herself
would attempt to soothe me and herself
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同样绝望的母亲会播放一些音乐
03:14
by putting on some music.
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来安慰我和她自己。
03:16
She would play peaceful music
to soothe our aching hearts.
to soothe our aching hearts.
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她会播放安静的音乐来
抚平我们痛疼的心灵。
抚平我们痛疼的心灵。
03:20
And we'd lie together on the floor
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我们会一道躺在地板上，
03:22
and allow the beat
of the drums to uplift us.
of the drums to uplift us.
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让鼓声鼓舞我们。
03:25
And as the rhythms and the tunes unfolded,
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随着旋律和音调的展开，
03:27
our spirits would rise,
our moods would be lighter,
our moods would be lighter,
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我们的精神会振作起来，
我们的情绪会更轻松些，
我们的情绪会更轻松些，
03:31
and we would be rejuvenated.
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我们会重新焕发活力。
03:33
(Tic)
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（抽搐）
03:35
Very soon, and rather unknowingly,
I became an addict of this newfound drug.
I became an addict of this newfound drug.
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很快，不知不觉中，我成了
这种新药物的瘾君子。
这种新药物的瘾君子。
03:40
When I found myself slipping
into my bouts of sadness and self-pity,
into my bouts of sadness and self-pity,
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当我发现自己陷入一种
悲伤和自怜的状态时，
悲伤和自怜的状态时，
03:44
I would rush to the 88 keys of my piano,
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我会冲向我钢琴的88个键，
03:47
knowing in my heart that the tones
and rhythms from each one of those keys
and rhythms from each one of those keys
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打心里觉得这些按键的音调和节奏
03:51
would soon set me free.
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会很快让我自由。
03:53
At the time, I didn't realize
how much music was helping me.
how much music was helping me.
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那时，我并不没有意识到音乐
会帮助我多少。
会帮助我多少。
03:57
It was just something I did by default.
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它只是我默认会去做的事情。
03:59
When I wrote my songs,
it wasn't to impress anybody.
it wasn't to impress anybody.
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当我写自己的音乐时，它不是
为了打动其它任何人。
为了打动其它任何人。
04:02
It was just a release.
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它只是一种释放。
04:04
But the more I played,
the less my symptoms surfaced,
the less my symptoms surfaced,
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但随着我演凑地越多，
我的症状就越不明显，
我的症状就越不明显，
04:07
and the intensity of my attacks reduced.
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我的受攻击强度也减轻了。
04:10
So I became curious as to how
these songs were soothing my symptoms.
these songs were soothing my symptoms.
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于是我开始好奇这些音乐
是如何缓解我的症状的。
是如何缓解我的症状的。
04:14
And I wondered if there were
any other cases of medicinal music.
any other cases of medicinal music.
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我想知道是否还有其他医学音乐的例子。
04:19
So I began to search.
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所以我开始搜索。
04:22
I found that there was
a highly successful US congresswoman,
a highly successful US congresswoman,
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我发现有一位非常成功
的美国国会议员，
的美国国会议员，
04:25
Gabby Giffords, who was shot in the head.
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加贝·吉福兹，她头部中枪，
04:28
She lost her ability to speak.
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失去了说话的能力。
04:31
Because the ability to speak
and the ability to sing
and the ability to sing
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由于说话的能力和唱歌的能力
04:34
lay in two separate parts of the brain,
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位于大脑两个不同的部分，
04:36
her doctors brought in
music therapists to work with her.
music therapists to work with her.
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她的医生引入音乐疗法治疗她。
04:39
The therapists encouraged her
to sing her thoughts,
to sing her thoughts,
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医生鼓励她唱出她的想法，
04:42
since she was incapable of speaking them.
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既然她已经不能说出来。
04:44
And through this technique,
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通过这个技术，
04:45
the congresswoman was finally able
to regain her speech.
to regain her speech.
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这位国会女议员最终能够重新讲话。
04:49
Music helped heal Gabby Giffords.
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音乐帮助治愈了加贝·吉福兹。
04:53
Scientists have found that music causes
our brains to release a natural painkiller
our brains to release a natural painkiller
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科学家发现，音乐能使我们
的大脑释放一种名为催产素
的大脑释放一种名为催产素
04:57
known as oxytocin
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的天然止痛药，
04:59
and a feel-good chemical, dopamine.
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和一种让人感觉良好的化学物质
多巴胺。
多巴胺。
05:01
Dopamine is essential
for a healthy nervous system
for a healthy nervous system
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多巴胺对健康的神经系统至关重要
05:04
and strongly impacts emotional health.
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并且强烈影响情绪健康。
05:07
Music also affects our heart rate,
breathing and pulse rate,
breathing and pulse rate,
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音乐也影响我们的心率，
呼吸和脉搏，
呼吸和脉搏，
05:11
as it stimulates blood flow.
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随着它刺激血液流动。
05:13
In addition, it lowers
our cortisol levels,
our cortisol levels,
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此外，它还能降低我们的
皮质醇水平，
皮质醇水平，
05:16
thus reducing anxiety,
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而从减少焦虑，
05:17
which is a common stimulant
for neurological symptoms.
for neurological symptoms.
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这是一种常见的神经症状刺激物。
05:22
In our lifetimes, we are all going to know
someone with a neurological disorder.
someone with a neurological disorder.
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在我们的生活中，我们都会
认识有神经障碍的人。
认识有神经障碍的人。
05:27
If it's not a family member --
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如果他不是我们的家人——
05:28
(Tic)
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（抽搐）
05:30
it could be a friend or a coworker.
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也可能是朋友或者同事。
05:32
Please help me spread this message:
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请帮我传播这条消息：
05:35
music has the ability to uplift our lives
and heal us from within.
and heal us from within.
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音乐有能力提升我们的生活
和治愈我们的内心。
和治愈我们的内心。
05:40
I still have Tourette syndrome.
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我仍然有图雷特综合症。
05:42
I deal with it every day, every hour.
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我每天，每时都在应对它。
05:44
I'm going to deal with it
for the rest of my life.
for the rest of my life.
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我余生都要应付它。
05:47
And that means that I have to frequently
excuse myself from my classroom,
excuse myself from my classroom,
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这意味着我不得不经常离开课室，
05:50
because my verbal tics
can be extremely distracting.
can be extremely distracting.
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因为我的语言动作很容易打扰他人。
05:53
That means that sometimes
when I wink my eyes involuntarily,
when I wink my eyes involuntarily,
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这意味着有时我不由自主地眨眼时，
05:57
the guy sitting opposite from me
thinks I'm flirting with him,
thinks I'm flirting with him,
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坐在我对面的人会以为
我在跟他调情，
我在跟他调情，
06:00
when I'm really not.
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但我实际上没有。
06:01
(Laughter)
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（笑声）
06:02
And I have to tell him,
"Sorry -- I wasn't trying to flirt."
"Sorry -- I wasn't trying to flirt."
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我不得不告诉他，
“抱歉——我没有在调情。”
“抱歉——我没有在调情。”
06:05
But the most amazing thing is
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但最神奇的事情是
06:08
that when I sing, play music
and even just listen to music,
and even just listen to music,
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当我唱，演凑音乐，
甚至只是听听音乐时，
甚至只是听听音乐时，
06:12
I don't tic.
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我都不会抽搐。
06:14
I've been onstage numerous times
in highly stressful situations,
in highly stressful situations,
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我曾无数次在高度紧张
的情况下登台演出，
的情况下登台演出，
06:18
with thousands of people watching me.
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有成千上万的人看着我。
06:21
And while I do tic
before my performance --
before my performance --
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当表演前我抽搐时——
06:24
(Tic)
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（抽搐）
06:25
when the music starts,
the tics take a back seat.
the tics take a back seat.
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一旦音乐响起，抽搐就退居二线。
06:29
So I may have written my own lyrics
and composed my own music.
and composed my own music.
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所以我可能是写了自己的歌词，
创造了自己的音乐。
创造了自己的音乐。
06:34
But in reality, I've realized
it was the music that composed me.
it was the music that composed me.
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但在实际中，我知道是音乐
创作了我。
创作了我。
06:39
Thank you.
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谢谢。
06:40
(Applause)
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（鼓掌）
06:49
(Tic)
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（抽搐）
06:53
(Music)
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（音乐）
07:22
(Singing) I think I took
my mask off too soon
my mask off too soon
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（演唱）我想我把面具摘早了，
07:26
'Cause you were there
and then you were not
and then you were not
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因为你在那，然后又不在了，
07:29
I think I pushed it all onto you
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我想我把一切都推给了你，
07:32
I should have dragged it out
dragged it out
dragged it out
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我应该把它说出来，说出来，
07:35
I think that maybe each time
I lose a bit of myself I put it back on
I lose a bit of myself I put it back on
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我想，也许每次我失去一点自我，
我都会把它找回来。
我都会把它找回来。
07:42
Just to fake it till I break
my own heart in two
my own heart in two
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假装到把我的心撕成两半。
07:51
And oh I wanted you
to know the real me
to know the real me
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我想让你了解真正的我，
07:57
And take it seriously
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并认真对待
08:03
But now
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但现在，
08:04
I'm not loving you
I'm not loving you
I'm not loving you
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我不爱你了，我不爱你了。
08:07
I'm not loving you
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我不爱你了。
08:11
I thought I could trust you
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我曾认为我可以信任你，
08:13
But you're running away
from me and my mask
from me and my mask
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但你在逃避我和我的面具。
08:17
I'm not loving you
I'm not loving you
I'm not loving you
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我不爱你了，我不爱你了。
08:21
I'm not loving you
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我不爱你了。
08:30
Right now
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现在，
08:33
I think I took my mask off too soon
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我想我把面具摘早了，
08:37
Because you screamed when I pulled it off
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因为我把它摘下来时，你尖叫了。
08:40
You told me you were unprepared
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你告诉我你没准备好。
08:43
And like that
just like that
just like that
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这样的，那样的。
08:46
I think that maybe this time
it hurt more than it ever has before
it hurt more than it ever has before
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我想这一次可能比以前
任何一次都更伤人。
任何一次都更伤人。
08:53
I think maybe this blow I took
was a little more
was a little more
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我想也许我受到的打击要更大一些，
08:58
A little more
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更大一些。
09:01
And oh I wanted you
to know the real me
to know the real me
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我想让你了解真正的我，
09:08
And take it seriously
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并认真对待。
09:14
But now
155
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但现在，
09:15
I’m not loving you
I'm not loving you
I'm not loving you
156
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我不爱你了，我不爱你了。
09:18
I'm not loving you
157
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2403
我不爱你了。
09:21
I thought I could trust you
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我曾认为我可以信任你。
09:24
But you're running away
from me and my mask
from me and my mask
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但你在逃避我和我的面具。
09:28
I'm not loving you
I'm not loving you
I'm not loving you
160
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3375
我不爱你了，我不爱你了。
09:31
I'm not loving you
161
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我不爱你了。
09:41
Right now
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现在。
09:45
(Applause)
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（鼓掌）
ABOUT THE SPEAKER
Esha Alwani - Singer-songwriterEsha Alwani's message to the world is simple: "Music is healing therapy, and we need to make a place for it in our lives."
Why you should listen
Esha Alwani's passion for singing, songwriting and performing started at a young age. It quickly gained priority in her life when she realized that music had the ability to help manage the symptoms of her neurological disorder, Tourette's syndrome. She shares a message of positivity, hope and perseverance to people in similar situations.
A singer-songwriter from the happy island of Aruba, Alwani wrote and recorded her first EP, Beautiful, with a desire to share her music and awareness of the healing effects of music. She quickly found herself in partnerships with the Autism Foundation of Aruba and the Tourette Association of America, and she appeared at the TAA annual conference in 2016 in Arlington, Virginia.
Soon after the release of her second EP, Dangerous, Alwani began performing as the opening act for international superstars on some of Aruba's biggest stages. From arena shows with audiences of 10,000 -- opening for artists like Alicia Keys and Maluma -- to private events with artists like Nicky Jam and companies like Hublot and Cartier. Alwani has also performed at two sold-out performances at the legendary Bluebird Café in Nashville, Tennessee.
Esha Alwani | Speaker | TED.com