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患有Tourette的感觉——以及音乐如何让我获得新生

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

我想让大家想象一下 发生如下情况会怎样:
I’d like you to imaginewhat it would feel like if,
整整两分钟的时间 你的左臂不停地拍打着
for two whole minutes,your left arm was continuously flapping,
你的眼睛在不停地翻转
your eyes were constantly rolling,
你的下巴咬得紧紧的
your jaw was clenching so hard that it felt
都要把牙齿咬碎了
like your teeth were about to break,
并且每10秒钟
and every ten seconds,
你都被迫发出一声高亢的尖叫
you were forced to let out a loud, high-pitched screech.
这就是我六岁时的样子
This is how I livedat the young age of six,
一周七天 醒着的每一刻
every waking moment, seven days a week.
并且这只是我的部分症状
And these were only some of my symptoms.
这些症状出现时 我的生活突然间彻底颠覆了
When these symptoms surfaced,my life literally changed overnight.
我无法继续上学
I could no longer go to school,
看朋友或者外出就餐
see my friends or even eat out,
因为我的抽搐会吸引房间里每个人的注意
because my tics would attract the attention of everyone in the room.
为了寻求医治 我们飞到纽约
In search for a cure, we flew to New York
去见我父母能找到的最好的儿科神经心理学家
to meet with the best pediatricneuropsychologist my parents could find.
但医生并没有给我们所希望的简单治疗方法
But the doctor did not give us the easy remedy we had hoped for.
相反 她诊断我患有一种无法治愈的神经障碍
Instead,she diagnosed mewith an incurable neurological disorder,
图雷特氏病(抽动障碍症)
Tourette syndrome.
通常 药物治疗是很多治疗环节中必不可少且很有价值的部分
Oftentimes,medication can be an essential and valuable part of many treatment processes.
但在我的情况中 药物却让事情变得更糟了
But in my case, the drugsonly made things worse.
有一种药物让我坐上了轮椅
One drug put me in a wheelchair,
因为我的腿麻木到无法动弹
because my legs had gotten so numb that I couldn’t move them.
另一种药物让我产生幻觉
Another one caused me to hallucinate.
我会看到绿色的人追着我跑
I would see green people running after me,
威胁要把我放在锅里煮 当汤喝
threatening to boil me in a pot and drink me as soup.
我真是非常害怕
And it was really scary.
我们试了一种又一种药物
We tried drug after drug to find something
去寻找能让我得到缓解的药物
that would bring me some sort of relief.
但每次尝试的结果只是让事情变得更糟糕
But every single attemptjust ended up making things worse.
据估计 2013年仅在美国
It is estimated that in 2013in the United States alone,
用来治疗神经系统疾病和精神疾病
the prescription drug expenditure to treat neurological conditions and mental illness
的处方药的开支就高达890亿美元
was about 89 billion dollars annually.
但是想象一下 如果有一种治疗这些状况
But imagine if there were a wayto treat these conditions
却无任何成本或副作用的方法会怎样?
without a price or without side effects.
假设你的医生每天给你开的是一剂音乐
Imagine if your doctor prescribed youa daily dose of music.
我今天在这里想和大家分享
I’m here today to share
我个人与音乐的体验
with you my personal experience with music
以及它们对我神经紊乱起到的效果
and the effect that it hadon my neurological disorder.
图雷综合症本质上是一系列
Tourette syndromeis essentially a series
不自主的动作和声音
of involuntary movements and sounds,
被人们称为抽搐
known as tics.
对我来说 描述图雷综合症最好的方式是
The best way for me to really describe what it’s like to have Tourette syndrome
我确定你们都很熟悉的—— 打嗝
is something I’m sure you’re all very familiar with — the hiccups.
你可以试着阻止这样做
You can try to stop yourself from the act.
你可以屏住呼吸数到10
You can hold your breath and count to 10,
或者倒过来喝水
or drink water upside down,
但你仍然拿它没办法
but there is just nothingyou can do about it
直到这种感觉消失 打嗝也停止
until the sensation passesand the hiccups have taken their course.
受到抽搐袭击时 我常常躺在卧室的地板上
I often lay on my bedroom floor after an attack of tics,
感到疲惫和绝望
feeling exhausted and in despair.
同样绝望的母亲会播放一些音乐
My equally desperate motherwould attempt to soothe me and herself
来安慰我和她自己
by putting on some music.
她会播放安静的音乐来抚平我们疼痛的心灵
She would play peaceful musicto soothe our aching hearts.
我们会一道躺在地板上 让鼓声鼓舞我们
And we’d lie together on the floor and allow the beat of the drums to uplift us.
随着旋律和音调的展开
And as the rhythms and the tunes unfolded,
我们的精神会振作起来 我们的情绪也更轻松些
our spirits would rise,our moods would be lighter,
我们会重新焕发活力
and we would be rejuvenated.
很快 不知不觉中
Very soon, and rather unknowingly,
我成了这种新药物的“瘾君子”
I became an addict of this newfound drug.
当我发现自己陷入一种悲伤和自怜的状态时
When I found myself slipping into my bouts of sadness and self-pity,
我就会冲向我钢琴的88个键
I would rush to the 88 keys of my piano,
打心里觉得
knowing in my heart
这些按键的音调和节奏
that the tones and rhythms from each one of those keys
会很快让我自由
would soon set me free.
那时 我并没有意识到音乐会帮助我多少
At the time, I didn’t realize how much music was helping me.
我只是不自觉的会去做这件事
It was just something I did by default.
当我写自己的音乐时 不是为打动其它任何人
When I wrote my songs,it wasn’t to impress anybody.
它只是一种释放
It was just a release.
但随着演奏地越多 我的症状就越不明显
But the more I played,the less my symptoms surfaced,
我所受困扰的强度也减弱了
and the intensity of my attacks reduced.
于是我开始好奇这些音乐是如何缓解我的症状的
So I became curious as to how these songs were soothing my symptoms.
我想知道是否还有其他治疗音乐的例子
And I wondered if there were any other cases of medicinal music.
于是我开始了搜索
So I began to search.
我发现有一位非常成功的美国国会议员
I found that there wasa highly successful US congresswoman,
加贝•吉福兹 她头部中枪
Gabby Giffords, who was shot in the head.
失去了说话的能力
She lost her ability to speak.
由于说话的能力和唱歌的能力
Because the ability to speakand the ability to sing
位于大脑两个不同的部分
lay in two separate parts of the brain,
她的医生引入音乐疗法治疗她
her doctors brought inmusic therapists to work with her.
医生鼓励她唱出她的想法
The therapists encouraged herto sing her thoughts,
既然无法说出来了
since she was incapable of speaking them.
通过这项技术 这位国会女议员最终能重新讲话
And through this technique, the congresswoman was finally able to regain her speech.
音乐帮助治愈了加贝•吉福兹
Music helped heal Gabby Giffords.
科学家发现
Scientists have found
音乐能使我们的大脑释放一种名为催产素的天然止痛药
that music causes our brains to release a natural painkiller
和一种让人感觉良好的化学物质多巴胺
known as oxytocin and a feel-good chemical, dopamine.
多巴胺对健康的神经系统至关重要
Dopamine is essentialfor a healthy nervous system
并且强烈影响情绪健康
and strongly impacts emotional health.
音乐也会影响我们的心率 呼吸和脉搏
Music also affects our heart rate,breathing and pulse rate,
刺激血液流动
as it stimulates blood flow.
此外 它还能降低我们的皮质醇水平
In addition, it lowersour cortisol levels,
从而减少焦虑 这是一种常见的神经症状刺激物
thus reducing anxiety, which is a common stimulant for neurological symptoms.
在我们的生活中 我们都会认识有神经障碍的人
In our lifetimes, we are all going to know someone with a neurological disorder.
如果他不是我们的家人——
If it’s not a family member —
也可能是朋友或同事
it could be a friend or a coworker.
请帮我传播这条消息:
Please help me spread this message:
音乐有能力提升我们的生活并治愈我们的内心
music has the ability to uplift our lives and heal us from within.
我仍然有图雷特综合症
I still have Tourette syndrome.
我每天 每时都在应对它
I deal with it every day, every hour.
我的余生都要应对它
I’m going to deal with it for the rest of my life.
这意味着 我不得不经常离开教室
And that means that I have to frequently excuse myself from my classroom,
因为我的抽噎很容易打扰他人
because my verbal ticscan be extremely distracting.
这意味着有时我不由自主地眨眼时
That means that sometimeswhen I wink my eyes involuntarily,
坐在我对面的人会以为我在跟他调情
the guy sitting opposite from methinks I’m flirting with him,
但我真的没有
when I’m really not.
我不得不告诉他 “抱歉——我没有在调情”
And I have to tell him,”Sorry — I wasn’t trying to flirt.”
但最神奇的事情是
But the most amazing thing is
当我唱歌 演奏音乐 甚至只是听听音乐时
that when I sing, play music and even just listen to music,
我都不会抽搐
I don’t tic.
我曾无数次在高度紧张的情况下登台演出
I’ve been onstage numerous timesin highly stressful situations,
有成千上万的人看着我
with thousands of people watching me.
表演前我会抽搐——
And while I do ticbefore my performance —
一旦音乐响起 抽搐就退居二线
when the music starts,the tics take a back seat.
所以我可能写了自己的歌词 创作了自己的音乐
So I may have written my own lyrics and composed my own music.
但实际上 我知道是音乐创作了我
But in reality, I’ve realized it was the music that composed me.
谢谢
Thank you.
(演唱)我想我把面具摘早了
(Singing) I think I tookmy mask off too soon
因为你原本在那儿 然后不在了
‘Cause you were thereand then you were not
我想我把一切都推给了你
I think I pushed it all onto you
我应该把它说出来 说出来
I should have dragged it outdragged it out
我想 也许每次我迷失一点点自我
I think that maybe each time I lose a bit
我都会把它找回来
of myself I put it back on
假装到把我的心
Just to fake it till I
撕成两半
break my own heart in two
我想让你了解真正的我
And oh I wanted youto know the real me
并认真对待
And take it seriously
但现在 我不爱你了 我不爱你了
But now I’m not loving youI’m not loving you
我不爱你了
I’m not loving you
我曾认为我可以信任你
I thought I could trust you
但你在逃避我和我的面具
But you’re running away from me and my mask
我不爱你了 我不爱你了
I’m not loving youI’m not loving you
我不爱你了
I’m not loving you
现在 我想我把面具摘早了
Right now I think I took my mask off too soon
因为我把它摘下来时 你尖叫了
Because you screamed when I pulled it off
你告诉我你没准备好
You told me you were unprepared
就像那样 像那样的
And like thatjust like that
我想这一次可能比以前
I think that maybe this time
任何一次都更伤人
it hurt more than it ever has before
我想也许我受到的打击要更大一些
I think maybe this blow I tookwas a little more
更大一些
A little more
我想让你了解真正的我
And oh I wanted youto know the real me
并认真对待
And take it seriously
但现在 我不爱你了 我不爱你了
But now I’m not loving youI’m not loving you
我不爱你了
I’m not loving you
我曾认为我可以信任你
I thought I could trust you
但你在逃避我和我的面具
But you’re running awayfrom me and my mask
我不爱你了 我不爱你了
I’m not loving youI’m not loving you
我不爱你了
I’m not loving you
现在
Right now

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视频概述

埃莎•阿尔瓦尼六岁时开始写歌,就在她被诊断出患有图雷特综合症后不久。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》的精彩表演。

听录译者

收集自网络

翻译译者

甪里

审核员

审核员 V

视频来源

https://www.youtube.com/watch?v=QtnBMSSk9Ok

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