TED-Ed Weekend
Esha Alwani: What it's like to have Tourette's -- and how music gives me back control
艾莎艾爾瓦尼: 得到妥瑞症的樣子，以及音樂如何讓我重新取得控制權
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艾莎艾爾瓦尼從六歲時開始寫歌，那之前沒多久，她被診斷出得了妥瑞症。她發現了很不可思議的事：每當她演奏音樂時，她無法自主的痙攣就會突然消失。來聽聽艾爾瓦尼探索音樂的力量，並帶給觀眾一場超凡的演出：她的鋼琴歌謠「我並不愛你（我的面具）」。
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.
（掌聲）
00:12
I'd like you to imagine
what it would feel like
what it would feel like
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我想請各位試著
想像一下這樣的感覺：
想像一下這樣的感覺：
00:16
if, for two whole minutes,
your left arm was continuously flapping,
your left arm was continuously flapping,
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如果，有整整兩分鐘，
你的左手臂持續拍打，
你的左手臂持續拍打，
00:21
your eyes were constantly rolling,
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你的雙眼不斷轉動，
00:23
your jaw was clenching so hard
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你的下巴緊緊咬合著，
00:25
that it felt like your teeth
were about to break,
were about to break,
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感覺好像你的牙齒
就要咬到裂開一樣，
就要咬到裂開一樣，
00:28
and every ten seconds,
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且每十秒鐘，
00:30
you were forced to let out
a loud, high-pitched screech.
a loud, high-pitched screech.
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你被迫要用高音大聲
發出尖刺的聲音。
發出尖刺的聲音。
00:34
(Tic)
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（痙攣＋尖聲）
00:37
This is how I lived
at the young age of six,
at the young age of six,
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我在六歲的時候就這樣過日子，
00:40
every waking moment, seven days a week.
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一週七天，醒著的每一刻都是如此。
00:43
(Tic)
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（痙攣＋尖聲）
00:44
And these were only some of my symptoms.
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且這些僅是我所有
症狀的一部分而已。
症狀的一部分而已。
00:48
When these symptoms surfaced,
my life literally changed overnight.
my life literally changed overnight.
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當這些症狀出現時，
我的人生真的可說是風雲變色。
我的人生真的可說是風雲變色。
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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我不再能去上學、見朋友，
我甚至不能在外面吃飯，
我甚至不能在外面吃飯，
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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因為我的痙攣會引來
房間中所有人的注意。
房間中所有人的注意。
01:01
In search for a cure, we flew to New York
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為了尋找解藥，我們飛到紐約，
01:04
to meet with the best pediatric
neuropsychologist my parents could find.
neuropsychologist my parents could find.
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去會見我父母能找到
最好的小兒神經心理學家。
最好的小兒神經心理學家。
01:09
(Tic)
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（痙攣＋尖聲）
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，醫生並沒有提供
我們期望的簡單治療。
我們期望的簡單治療。
01:15
Instead, she diagnosed me
with an incurable neurological disorder,
with an incurable neurological disorder,
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她反而診斷我得了
無法治癒的神經系統疾病，
無法治癒的神經系統疾病，
（痙攣＋尖聲）
01:20
Tourette syndrome.
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妥瑞症。
01:22
Oftentimes, medication can be
an essential and valuable part
an essential and valuable part
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通常，在許多治療過程中，
藥物是很重要且有用的部分。
01:26
of many treatment processes.
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01:28
But in my case, the drugs
only made things worse.
only made things worse.
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但在我的情況中，
藥物只會有反效果。
藥物只會有反效果。
01:32
One drug put me in a wheelchair,
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有一種藥物讓我坐上輪椅，
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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因為我的雙腳麻木到無法移動。
01:39
Another one caused me to hallucinate.
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另一種藥物讓我產生幻覺。
01:41
I would see green people running after me,
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我會看見綠色的人在追我，
01:43
threatening to boil me in a pot
and drink me as soup.
and drink me as soup.
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威脅要把我丟到
沸水中煮成湯來喝。
沸水中煮成湯來喝。
01:46
And it was really scary.
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那十分駭人。
01:48
We tried drug after drug
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我們不斷嘗試藥物，
01:50
to find something that would bring me
some sort of relief.
some sort of relief.
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想找到某種能讓我能
至少鬆口氣的方式。
至少鬆口氣的方式。
01:53
But every single attempt
just ended up making things worse.
just ended up making things worse.
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但每一次的嘗試，
最後都只是讓狀況更糟。
最後都只是讓狀況更糟。
01:59
It is estimated that in 2013
in the United States alone,
in the United States alone,
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據估計，2013 年，
光是在美國，
02:04
the prescription drug expenditure
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用來治療神經系統疾病
02:05
to treat neurological conditions
and mental illness
and mental illness
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和心理疾病的處方藥的支出，
02:08
was about 89 billion dollars annually.
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一年大約是 890 億美金。
02:13
But imagine if there were a way
to treat these conditions
to treat these conditions
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但，想像一下，如果有辦法
可以治療這些疾病，
可以治療這些疾病，
02:16
without a price or without side effects.
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沒有價格，且沒有副作用。
02:21
Imagine if your doctor prescribed you
a daily dose of music.
a daily dose of music.
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想像一下，如果你的醫生
開給你的藥是每天一劑音樂。
開給你的藥是每天一劑音樂。
02:26
I'm here today to share with you
my personal experience with music
my personal experience with music
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今天我來跟各位分享的，
就是我對於音樂的個人體驗，
就是我對於音樂的個人體驗，
02:30
and the effect that it had
on my neurological disorder.
on my neurological disorder.
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以及音樂如何影響
我的神經系統疾病。
我的神經系統疾病。
02:33
(Tic)
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（痙攣＋尖聲）
02:35
Tourette syndrome
is essentially a series
is essentially a series
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基本的上，妥瑞症就是一連串
02:38
of involuntary movements and sounds,
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非自主性的動作和聲音，
02:40
known as tics.
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即一般所知的痙攣。
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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對我來說，要描述得了妥瑞症
是怎樣的狀況，最好的形容
是怎樣的狀況，最好的形容
02:46
is something I'm sure
you're all very familiar with --
you're all very familiar with --
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就是各位都很熟悉的——
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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你可以試著阻止你自己打嗝。
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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你可以閉氣然後數到十，
或是顛倒過來喝水，
或是顛倒過來喝水，
02:56
but there is just nothing
you can do about it
you can do about it
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但你還是無能為力，
02:58
until the sensation passes
and the hiccups have taken their course.
and the hiccups have taken their course.
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直到那感覺過去，打嗝自然結束。
03:03
I often lay on my bedroom floor
after an attack of tics,
after an attack of tics,
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在痙攣襲擊過後，我通常
會躺在我臥室的地板上，
會躺在我臥室的地板上，
03:07
feeling exhausted and in despair.
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筋疲力盡，且覺得很絕望。
03:09
(Tic)
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（痙攣＋尖聲）
03:10
My equally desperate mother
would attempt to soothe me and herself
would attempt to soothe me and herself
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我媽媽同樣也很絕望，
她會試著安慰我和她自己，
她會試著安慰我和她自己，
03:14
by putting on some music.
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做法就是放音樂。
03:16
She would play peaceful music
to soothe our aching hearts.
to soothe our aching hearts.
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她會放平靜的音樂，
來平撫我們疼痛的心。
來平撫我們疼痛的心。
03:20
And we'd lie together on the floor
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我們會一起躺在地板上，
03:22
and allow the beat
of the drums to uplift us.
of the drums to uplift us.
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敲擊的鼓聲會使我們振奮起來。
03:25
And as the rhythms and the tunes unfolded,
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隨著節奏和曲調出現，
03:27
our spirits would rise,
our moods would be lighter,
our moods would be lighter,
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我們的精神會提振，
我們的心情會比較輕鬆一點，
我們的心情會比較輕鬆一點，
03:31
and we would be rejuvenated.
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我們會再次恢復活力。
03:33
(Tic)
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（痙攣＋尖聲）
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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很快地，且算是不知不覺地，
我對於這種新發現的藥物上了癮。
我對於這種新發現的藥物上了癮。
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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當我發現我又開始下一回合的
悲傷和自怨自艾時，
悲傷和自怨自艾時，
03:44
I would rush to the 88 keys of my piano,
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我就會快去找
我的鋼琴的 88 個琴鍵，
我的鋼琴的 88 個琴鍵，
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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我心裡很清楚，
那些琴鍵傳來的曲調和節奏
那些琴鍵傳來的曲調和節奏
03:51
would soon set me free.
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很快就會讓我得到解放。
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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當時，我並不知道音樂
對我的幫助有多大。
對我的幫助有多大。
03:57
It was just something I did by default.
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我就是這麼做。
03:59
When I wrote my songs,
it wasn't to impress anybody.
it wasn't to impress anybody.
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當我寫歌時，我的目的並不是
要讓任何人對我印象深刻。
要讓任何人對我印象深刻。
04:02
It was just a release.
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那只是一種解脫方式。
04:04
But the more I played,
the less my symptoms surfaced,
the less my symptoms surfaced,
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但，我演奏得越多，
我的症狀就越少出現，
我的症狀就越少出現，
04:07
and the intensity of my attacks reduced.
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且症狀發作時的強度也有減低。
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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所以，我開始好奇這些歌曲
如何能夠緩和我的症狀。
如何能夠緩和我的症狀。
04:14
And I wondered if there were
any other cases of medicinal music.
any other cases of medicinal music.
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我很納悶，是否有其他
用音樂當藥物的案例存在？
用音樂當藥物的案例存在？
04:19
So I began to search.
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所以我開始搜尋。
04:22
I found that there was
a highly successful US congresswoman,
a highly successful US congresswoman,
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我發現，有一位非常成功的
美國眾議院女議員，
美國眾議院女議員，
04:25
Gabby Giffords, who was shot in the head.
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嘉貝麗吉佛斯，
她的頭部遭到槍擊。
她的頭部遭到槍擊。
04:28
She lost her ability to speak.
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她失去了說話能力。
04:31
Because the ability to speak
and the ability to sing
and the ability to sing
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因為說話和唱歌的能力
04:34
lay in two separate parts of the brain,
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位在大腦中兩個不同的區域，
04:36
her doctors brought in
music therapists to work with her.
music therapists to work with her.
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她的醫生請音樂治療師
介入，來協助她。
介入，來協助她。
04:39
The therapists encouraged her
to sing her thoughts,
to sing her thoughts,
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治療師鼓勵她唱出她的想法，
04:42
since she was incapable of speaking them.
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因為她無法把想法說出來。
04:44
And through this technique,
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透過這項技巧，
04:45
the congresswoman was finally able
to regain her speech.
to regain her speech.
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這名女眾議員終於
重新恢復了說話能力。
重新恢復了說話能力。
04:49
Music helped heal Gabby Giffords.
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音樂協助治癒了嘉貝麗吉佛斯。
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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科學家發現，音樂會讓我們的大腦
釋放出一種天然的止痛劑，
釋放出一種天然的止痛劑，
04:57
known as oxytocin
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即一般所知的催產素，
04:59
and a feel-good chemical, dopamine.
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還有一種令人感覺很棒的
化學物質，多巴胺。
化學物質，多巴胺。
05:01
Dopamine is essential
for a healthy nervous system
for a healthy nervous system
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多巴胺對神經系統的
健康是很重要的，
健康是很重要的，
05:04
and strongly impacts emotional health.
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且它對情緒健康的影響甚大。
05:07
Music also affects our heart rate,
breathing and pulse rate,
breathing and pulse rate,
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音樂也會影響我們的
心跳率、呼吸，和脈搏，
心跳率、呼吸，和脈搏，
05:11
as it stimulates blood flow.
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因為音樂會刺激血流。
05:13
In addition, it lowers
our cortisol levels,
our cortisol levels,
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此外，音樂會降低
我們的皮質醇濃度，
我們的皮質醇濃度，
05:16
thus reducing anxiety,
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因而減輕焦慮，
05:17
which is a common stimulant
for neurological symptoms.
for neurological symptoms.
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對於神經系統症狀，
它是一種常見的刺激物。
它是一種常見的刺激物。
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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在我們的一生中，都有可能
認識神經系統疾病患者。
認識神經系統疾病患者。
05:27
If it's not a family member --
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如果不是家中的成員——
05:28
(Tic)
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（痙攣＋尖聲）
05:30
it could be a friend or a coworker.
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也有可能是朋友、同事。
05:32
Please help me spread this message:
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請協助我將這個訊息傳播出去：
05:35
music has the ability to uplift our lives
and heal us from within.
and heal us from within.
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音樂可以振奮我們的生命，
從內在治癒我們。
從內在治癒我們。
05:40
I still have Tourette syndrome.
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我仍然有妥瑞症。
05:42
I deal with it every day, every hour.
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我每天、每小時都要去處理它。
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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我接下來的人生
也都得要去處理它。
也都得要去處理它。
05:47
And that means that I have to frequently
excuse myself from my classroom,
excuse myself from my classroom,
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那就表示，我常常得要
暫時離開我的教室，
暫時離開我的教室，
05:50
because my verbal tics
can be extremely distracting.
can be extremely distracting.
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因為我的言語痙攣可能
會造成極大的分心作用。
會造成極大的分心作用。
05:53
That means that sometimes
when I wink my eyes involuntarily,
when I wink my eyes involuntarily,
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那就表示，有時，
當我不自主地眨眼時，
當我不自主地眨眼時，
05:57
the guy sitting opposite from me
thinks I'm flirting with him,
thinks I'm flirting with him,
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坐在我對面的男人
會以為我在挑逗他，
會以為我在挑逗他，
但我其實沒有。（笑聲）
06:00
when I'm really not.
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06:01
(Laughter)
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我得要告訴他：「對不起——
我不是在試著調情。」
我不是在試著調情。」
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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06:05
But the most amazing thing is
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但，最驚人的是，
06:08
that when I sing, play music
and even just listen to music,
and even just listen to music,
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當我唱歌、演奏音樂，
甚至只是聽音樂時，
甚至只是聽音樂時，
06:12
I don't tic.
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我就不會痙攣。
06:14
I've been onstage numerous times
in highly stressful situations,
in highly stressful situations,
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我已經多次站上壓力極大的舞台，
06:18
with thousands of people watching me.
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有數千人看著我。
06:21
And while I do tic
before my performance --
before my performance --
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雖然我在演出之前確實會痙攣——
06:24
(Tic)
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（痙攣＋尖聲）
06:25
when the music starts,
the tics take a back seat.
the tics take a back seat.
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當音樂開始時，
痙攣就坐到後座去了。
痙攣就坐到後座去了。
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，雖然我自己寫了詞、作了曲。
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，在現實中，我發現
其實是音樂在安定
（和「作曲」同一個字）我。
（和「作曲」同一個字）我。
06:39
Thank you.
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謝謝。
06:40
(Applause)
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（掌聲）
06:49
(Tic)
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（痙攣＋尖聲）
06:53
(Music)
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（音樂）
07:22
(Singing) I think I took
my mask off too soon
my mask off too soon
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（唱歌）我想我太早
取下我的面具了，
取下我的面具了，
07:26
'Cause you were there
and then you were not
and then you were not
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因為你本來在那裡，
接著就不在了。
接著就不在了。
07:29
I think I pushed it all onto you
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我想，我把一切都推給了你。
07:32
I should have dragged it out
dragged it out
dragged it out
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我應該要把一切拖出去的，
把一切拖出去的。
把一切拖出去的。
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，也許每次
我失去一點點自我，
我失去一點點自我，
我就會再把它戴上。
07:42
Just to fake it till I break
my own heart in two
my own heart in two
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只是做偽裝，直到我
把我自己的心打破成兩半。
把我自己的心打破成兩半。
07:51
And oh I wanted you
to know the real me
to know the real me
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喔，我希望你能認識真正的我，
07:57
And take it seriously
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並認真看待。
08:03
But now
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但，現在，
08:04
I'm not loving you
I'm not loving you
I'm not loving you
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我並不愛你。我並不愛你。
08:07
I'm not loving you
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我並不愛你。
08:11
I thought I could trust you
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我以為我可以信任你，
08:13
But you're running away
from me and my mask
from me and my mask
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但你逃離了我和我的面具。
08:17
I'm not loving you
I'm not loving you
I'm not loving you
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我並不愛你。我並不愛你。
08:21
I'm not loving you
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我並不愛你。
08:30
Right now
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現在，
08:33
I think I took my mask off too soon
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我想我太早取下我的面具了，
08:37
Because you screamed when I pulled it off
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因為我把它脫下來時，
你大叫出來。
你大叫出來。
08:40
You told me you were unprepared
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你告訴我，你沒做好準備，
08:43
And like that
just like that
just like that
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像那樣，就像那樣。
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，這次也許會
比以往都還要痛。
比以往都還要痛。
08:53
I think maybe this blow I took
was a little more
was a little more
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我想，我承受的這一擊
稍微強了一些，
稍微強了一些，
08:58
A little more
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稍微強了一些。
09:01
And oh I wanted you
to know the real me
to know the real me
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喔，我希望你能認識真正的我，
09:08
And take it seriously
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並認真看待。
09:14
But now
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但，現在，
09:15
I’m not loving you
I'm not loving you
I'm not loving you
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我並不愛你。我並不愛你。
09:18
I'm not loving you
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我並不愛你。
09:21
I thought I could trust you
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我以為我可以信任你，
09:24
But you're running away
from me and my mask
from me and my mask
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但你逃離了我和我的面具。
09:28
I'm not loving you
I'm not loving you
I'm not loving you
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我並不愛你。我並不愛你。
09:31
I'm not loving you
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我並不愛你。
09:41
Right now
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現在。
09:45
(Applause)
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（掌聲）
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