What it's like to have Tourette's — and how music gives me back control | Esha Alwani

翻译人员: jacks peng 校对人员: Cissy Yun

I'd like you to imagine what it would feel like

if, for two whole minutes, your left arm was continuously flapping,

我想让大家想象一下 如下情况会怎样，

your eyes were constantly rolling,

假如，整整两分钟，你的 左臂在不停地拍打着，

your jaw was clenching so hard

that it felt like your teeth were about to break,

你的眼睛在不停的翻滚，

and every ten seconds,

你的下巴咬的紧紧的

you were forced to let out a loud, high-pitched screech.

都要把牙齿咬碎了，

(Tic)

并且每10秒钟，

你都被迫发出一声高亢的尖叫。

This is how I lived at the young age of six,

every waking moment, seven days a week.

（抽搐）

(Tic)

这就是我6岁时候的样子，

And these were only some of my symptoms.

一周7天，每一个醒着的时候。

When these symptoms surfaced, my life literally changed overnight.

（抽搐）

并且这只是我的一些症状。

I could no longer go to school, see my friends or even eat out,

当这些症状出现时，我的生活 一夜间被彻底颠覆了。

because my tics would attract the attention of everyone in the room.

我无法继续上学， 看朋友或者外出就餐，

In search for a cure, we flew to New York

因为我的抽搐会吸引房间中 每个人的注意。

to meet with the best pediatric neuropsychologist my parents could find.

为了寻找治疗，我们飞到纽约

(Tic)

去见我父母能找到的最好的 儿科神经心理学家。

But the doctor did not give us the easy remedy we had hoped for.

Instead, she diagnosed me with an incurable neurological disorder,

（抽搐）

但医生并没有给我们 所希望的简单治疗方法。

Tourette syndrome.

反之，她诊断我患有一种 无法治愈的神经障碍

Oftentimes, medication can be an essential and valuable part

of many treatment processes.

图雷特氏病（抽动障碍症）。

But in my case, the drugs only made things worse.

通常，药物治疗是必不可少， 很有价值

One drug put me in a wheelchair,

的治疗环节。

because my legs had gotten so numb that I couldn't move them.

但在我的情况中， 药物却让事情变得更糟了。

有一种药物让我坐上了轮椅，

Another one caused me to hallucinate.

因为我的腿麻木到无法动弹。

I would see green people running after me,

threatening to boil me in a pot and drink me as soup.

另一种药物让我产生幻觉。

And it was really scary.

我会看到绿色的人追着我跑，

We tried drug after drug

威胁要把我煮在锅里，当汤喝。

to find something that would bring me some sort of relief.

我真是非常害怕。

But every single attempt just ended up making things worse.

我们试了一种又一种药物

去寻找能让我解脱的药物。

It is estimated that in 2013 in the United States alone,

但每次尝试的结果只是 让事情变得更糟糕。

the prescription drug expenditure

to treat neurological conditions and mental illness

据估计2013年仅在美国，

was about 89 billion dollars annually.

用来治疗神经系统疾病和精神疾病

的处方药的开支

But imagine if there were a way to treat these conditions

每年就高达890亿美元。

without a price or without side effects.

但是想象一下 如果有一种治疗这些状况

Imagine if your doctor prescribed you a daily dose of music.

却无任何成本或副作用的 方法会是怎样？

I'm here today to share with you my personal experience with music

假象你的医生每天给你 开的是一剂音乐。

and the effect that it had on my neurological disorder.

我今天在这里想和你们分享 我个人与音乐的体验

(Tic)

Tourette syndrome is essentially a series

以及它对我神经紊乱的影响。

of involuntary movements and sounds,

（抽搐）

known as tics.

图雷特综合症本质上是一系列

The best way for me to really describe what it's like to have Tourette syndrome

不自主的动作和声音，

is something I'm sure you're all very familiar with --

被人们称为抽搐。

the hiccups.

对我来说，描述图雷特综合症 最好方式是

You can try to stop yourself from the act.

You can hold your breath and count to 10, or drink water upside down,

我确定你们都很熟悉的——

打嗝。

but there is just nothing you can do about it

你可以试着阻止这样做。

until the sensation passes and the hiccups have taken their course.

你可以屏住呼吸数到10， 或者倒过来喝水，

但你仍然对它毫无作用，

I often lay on my bedroom floor after an attack of tics,

直到这种感觉消失，打嗝也停止。

feeling exhausted and in despair.

(Tic)

受到抽搐袭击时，我常常躺在卧室的地板上，

My equally desperate mother would attempt to soothe me and herself

感到疲惫和绝望。

by putting on some music.

（抽搐）

She would play peaceful music to soothe our aching hearts.

同样绝望的母亲会播放一些音乐

And we'd lie together on the floor

来安慰我和她自己。

and allow the beat of the drums to uplift us.

她会播放安静的音乐来 抚平我们痛疼的心灵。

And as the rhythms and the tunes unfolded,

我们会一道躺在地板上，

our spirits would rise, our moods would be lighter,

让鼓声鼓舞我们。

and we would be rejuvenated.

随着旋律和音调的展开，

(Tic)

我们的精神会振作起来， 我们的情绪会更轻松些，

Very soon, and rather unknowingly, I became an addict of this newfound drug.

我们会重新焕发活力。

（抽搐）

When I found myself slipping into my bouts of sadness and self-pity,

很快，不知不觉中，我成了 这种新药物的瘾君子。

I would rush to the 88 keys of my piano,

当我发现自己陷入一种 悲伤和自怜的状态时，

knowing in my heart that the tones and rhythms from each one of those keys

我会冲向我钢琴的88个键，

would soon set me free.

At the time, I didn't realize how much music was helping me.

打心里觉得这些按键的音调和节奏

It was just something I did by default.

会很快让我自由。

When I wrote my songs, it wasn't to impress anybody.

那时，我并不没有意识到音乐 会帮助我多少。

It was just a release.

它只是我默认会去做的事情。

But the more I played, the less my symptoms surfaced,

当我写自己的音乐时，它不是 为了打动其它任何人。

and the intensity of my attacks reduced.

它只是一种释放。

So I became curious as to how these songs were soothing my symptoms.

但随着我演凑地越多， 我的症状就越不明显，

我的受攻击强度也减轻了。

And I wondered if there were any other cases of medicinal music.

于是我开始好奇这些音乐 是如何缓解我的症状的。

So I began to search.

我想知道是否还有其他医学音乐的例子。

I found that there was a highly successful US congresswoman,

Gabby Giffords, who was shot in the head.

所以我开始搜索。

She lost her ability to speak.

我发现有一位非常成功 的美国国会议员，

Because the ability to speak and the ability to sing

加贝·吉福兹，她头部中枪，

lay in two separate parts of the brain,

失去了说话的能力。

her doctors brought in music therapists to work with her.

由于说话的能力和唱歌的能力

The therapists encouraged her to sing her thoughts,

位于大脑两个不同的部分，

since she was incapable of speaking them.

她的医生引入音乐疗法治疗她。

And through this technique,

the congresswoman was finally able to regain her speech.

医生鼓励她唱出她的想法，

既然她已经不能说出来。

Music helped heal Gabby Giffords.

通过这个技术，

这位国会女议员最终能够重新讲话。

Scientists have found that music causes our brains to release a natural painkiller

音乐帮助治愈了加贝·吉福兹。

known as oxytocin

and a feel-good chemical, dopamine.

科学家发现，音乐能使我们 的大脑释放一种名为催产素

Dopamine is essential for a healthy nervous system

的天然止痛药，

and strongly impacts emotional health.

和一种让人感觉良好的化学物质 多巴胺。

Music also affects our heart rate, breathing and pulse rate,

多巴胺对健康的神经系统至关重要

并且强烈影响情绪健康。

as it stimulates blood flow.

In addition, it lowers our cortisol levels,

音乐也影响我们的心率， 呼吸和脉搏，

thus reducing anxiety,

which is a common stimulant for neurological symptoms.

随着它刺激血液流动。

此外，它还能降低我们的 皮质醇水平，

In our lifetimes, we are all going to know someone with a neurological disorder.

而从减少焦虑，

这是一种常见的神经症状刺激物。

If it's not a family member --

(Tic)

在我们的生活中，我们都会 认识有神经障碍的人。

it could be a friend or a coworker.

Please help me spread this message:

如果他不是我们的家人——

（抽搐）

music has the ability to uplift our lives and heal us from within.

也可能是朋友或者同事。

请帮我传播这条消息：

I still have Tourette syndrome.

音乐有能力提升我们的生活 和治愈我们的内心。

I deal with it every day, every hour.

I'm going to deal with it for the rest of my life.

我仍然有图雷特综合症。

And that means that I have to frequently excuse myself from my classroom,

我每天，每时都在应对它。

because my verbal tics can be extremely distracting.

我余生都要应付它。

That means that sometimes when I wink my eyes involuntarily,

这意味着我不得不经常离开课室，

因为我的语言动作很容易打扰他人。

the guy sitting opposite from me thinks I'm flirting with him,

这意味着有时我不由自主地眨眼时，

when I'm really not.

(Laughter)

And I have to tell him, "Sorry -- I wasn't trying to flirt."

坐在我对面的人会以为 我在跟他调情，

But the most amazing thing is

但我实际上没有。

（笑声）

that when I sing, play music and even just listen to music,

我不得不告诉他， “抱歉——我没有在调情。”

但最神奇的事情是

I don't tic.

I've been onstage numerous times in highly stressful situations,

当我唱，演凑音乐， 甚至只是听听音乐时，

with thousands of people watching me.

我都不会抽搐。

我曾无数次在高度紧张 的情况下登台演出，

And while I do tic before my performance --

(Tic)

有成千上万的人看着我。

when the music starts, the tics take a back seat.

当表演前我抽搐时——

So I may have written my own lyrics and composed my own music.

（抽搐）

一旦音乐响起，抽搐就退居二线。

But in reality, I've realized it was the music that composed me.

所以我可能是写了自己的歌词， 创造了自己的音乐。

Thank you.

(Applause)

但在实际中，我知道是音乐 创作了我。

谢谢。

（鼓掌）

(Tic)

(Music)

（抽搐）

（音乐）

(Singing) I think I took my mask off too soon

'Cause you were there and then you were not

（演唱）我想我把面具摘早了，

I think I pushed it all onto you

I should have dragged it out dragged it out

因为你在那，然后又不在了，

I think that maybe each time I lose a bit of myself I put it back on

我想我把一切都推给了你，

我应该把它说出来，说出来，

我想，也许每次我失去一点自我， 我都会把它找回来。

Just to fake it till I break my own heart in two

假装到把我的心撕成两半。

And oh I wanted you to know the real me

And take it seriously

我想让你了解真正的我，

But now

并认真对待

I'm not loving you I'm not loving you

I'm not loving you

但现在，

我不爱你了，我不爱你了。

I thought I could trust you

But you're running away from me and my mask

我不爱你了。

I'm not loving you I'm not loving you

我曾认为我可以信任你，

但你在逃避我和我的面具。

I'm not loving you

我不爱你了，我不爱你了。

我不爱你了。

Right now

I think I took my mask off too soon

现在，

Because you screamed when I pulled it off

我想我把面具摘早了，

You told me you were unprepared

And like that just like that

因为我把它摘下来时，你尖叫了。

I think that maybe this time it hurt more than it ever has before

你告诉我你没准备好。

这样的，那样的。

我想这一次可能比以前 任何一次都更伤人。

I think maybe this blow I took was a little more

A little more

我想也许我受到的打击要更大一些，

And oh I wanted you to know the real me

更大一些。

我想让你了解真正的我，

And take it seriously

But now

并认真对待。

I’m not loving you I'm not loving you

I'm not loving you

但现在，

I thought I could trust you

我不爱你了，我不爱你了。

But you're running away from me and my mask

我不爱你了。

我曾认为我可以信任你。

I'm not loving you I'm not loving you

但你在逃避我和我的面具。

I'm not loving you

我不爱你了，我不爱你了。

我不爱你了。

Right now

(Applause)

现在。

（鼓掌）