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

譯者: Lilian Chiu 審譯者: Bruce Sung

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

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

（掌聲）

我想請各位試著 想像一下這樣的感覺：

your eyes were constantly rolling,

如果，有整整兩分鐘， 你的左手臂持續拍打，

your jaw was clenching so hard

that it felt like your teeth were about to break,

你的雙眼不斷轉動，

and every ten seconds,

你的下巴緊緊咬合著，

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

感覺好像你的牙齒 就要咬到裂開一樣，

(Tic)

且每十秒鐘，

你被迫要用高音大聲 發出尖刺的聲音。

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

every waking moment, seven days a week.

（痙攣＋尖聲）

(Tic)

我在六歲的時候就這樣過日子，

And these were only some of my symptoms.

一週七天，醒著的每一刻都是如此。

When these symptoms surfaced, my life literally changed overnight.

（痙攣＋尖聲）

且這些僅是我所有 症狀的一部分而已。

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

當這些症狀出現時， 我的人生真的可說是風雲變色。

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

我不再能去上學、見朋友， 我甚至不能在外面吃飯，

In search for a cure, we flew to New York

因為我的痙攣會引來 房間中所有人的注意。

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

為了尋找解藥，我們飛到紐約，

(Tic)

去會見我父母能找到 最好的小兒神經心理學家。

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

Instead, she diagnosed me with an incurable neurological disorder,

（痙攣＋尖聲）

但，醫生並沒有提供 我們期望的簡單治療。

Tourette syndrome.

她反而診斷我得了 無法治癒的神經系統疾病，

Oftentimes, medication can be an essential and valuable part

（痙攣＋尖聲）

of many treatment processes.

妥瑞症。

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

通常，在許多治療過程中，

藥物是很重要且有用的部分。

One drug put me in a wheelchair,

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

但在我的情況中， 藥物只會有反效果。

有一種藥物讓我坐上輪椅，

Another one caused me to hallucinate.

因為我的雙腳麻木到無法移動。

I would see green people running after me,

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

另一種藥物讓我產生幻覺。

And it was really scary.

我會看見綠色的人在追我，

We tried drug after drug

威脅要把我丟到 沸水中煮成湯來喝。

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

那十分駭人。

But every single attempt just ended up making things worse.

我們不斷嘗試藥物，

想找到某種能讓我能 至少鬆口氣的方式。

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

但每一次的嘗試， 最後都只是讓狀況更糟。

the prescription drug expenditure

to treat neurological conditions and mental illness

據估計，2013 年，

was about 89 billion dollars annually.

光是在美國，

用來治療神經系統疾病

和心理疾病的處方藥的支出，

But imagine if there were a way to treat these conditions

一年大約是 890 億美金。

without a price or without side effects.

但，想像一下，如果有辦法 可以治療這些疾病，

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

沒有價格，且沒有副作用。

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

想像一下，如果你的醫生 開給你的藥是每天一劑音樂。

and the effect that it had on my neurological disorder.

今天我來跟各位分享的， 就是我對於音樂的個人體驗，

(Tic)

Tourette syndrome is essentially a series

以及音樂如何影響 我的神經系統疾病。

of involuntary movements and sounds,

（痙攣＋尖聲）

known as tics.

基本的上，妥瑞症就是一連串

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

非自主性的動作和聲音，

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

即一般所知的痙攣。

the hiccups.

對我來說，要描述得了妥瑞症 是怎樣的狀況，最好的形容

You can try to stop yourself from the act.

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

就是各位都很熟悉的——

打嗝。

but there is just nothing you can do about it

你可以試著阻止你自己打嗝。

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

你可以閉氣然後數到十， 或是顛倒過來喝水，

但你還是無能為力，

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

直到那感覺過去，打嗝自然結束。

feeling exhausted and in despair.

(Tic)

在痙攣襲擊過後，我通常 會躺在我臥室的地板上，

My equally desperate mother would attempt to soothe me and herself

筋疲力盡，且覺得很絕望。

by putting on some music.

（痙攣＋尖聲）

She would play peaceful music to soothe our aching hearts.

我媽媽同樣也很絕望， 她會試著安慰我和她自己，

And we'd lie together on the floor

做法就是放音樂。

and allow the beat of the drums to uplift us.

她會放平靜的音樂， 來平撫我們疼痛的心。

And as the rhythms and the tunes unfolded,

我們會一起躺在地板上，

our spirits would rise, our moods would be lighter,

敲擊的鼓聲會使我們振奮起來。

and we would be rejuvenated.

隨著節奏和曲調出現，

(Tic)

我們的精神會提振， 我們的心情會比較輕鬆一點，

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

我們會再次恢復活力。

（痙攣＋尖聲）

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

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。

I would rush to the 88 keys of my piano,

當我發現我又開始下一回合的 悲傷和自怨自艾時，

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

我就會快去找 我的鋼琴的 88 個琴鍵，

would soon set me free.

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

我心裡很清楚， 那些琴鍵傳來的曲調和節奏

It was just something I did by default.

很快就會讓我得到解放。

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

當時，我並不知道音樂 對我的幫助有多大。

It was just a release.

我就是這麼做。

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

當我寫歌時，我的目的並不是 要讓任何人對我印象深刻。

and the intensity of my attacks reduced.

那只是一種解脫方式。

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

但，我演奏得越多， 我的症狀就越少出現，

且症狀發作時的強度也有減低。

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

所以，我開始好奇這些歌曲 如何能夠緩和我的症狀。

So I began to search.

我很納悶，是否有其他 用音樂當藥物的案例存在？

I found that there was a highly successful US congresswoman,

Gabby Giffords, who was shot in the head.

所以我開始搜尋。

She lost her ability to speak.

我發現，有一位非常成功的 美國眾議院女議員，

Because the ability to speak and the ability to sing

嘉貝麗吉佛斯， 她的頭部遭到槍擊。

lay in two separate parts of the brain,

她失去了說話能力。

her doctors brought in music therapists to work with her.

因為說話和唱歌的能力

The therapists encouraged her to sing her thoughts,

位在大腦中兩個不同的區域，

since she was incapable of speaking them.

她的醫生請音樂治療師 介入，來協助她。

And through this technique,

the congresswoman was finally able to regain her speech.

治療師鼓勵她唱出她的想法，

因為她無法把想法說出來。

Music helped heal Gabby Giffords.

透過這項技巧，

這名女眾議員終於 重新恢復了說話能力。

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

音樂協助治癒了嘉貝麗吉佛斯。

known as oxytocin

and a feel-good chemical, dopamine.

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，

Dopamine is essential for a healthy nervous system

即一般所知的催產素，

and strongly impacts emotional health.

還有一種令人感覺很棒的 化學物質，多巴胺。

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

多巴胺對神經系統的 健康是很重要的，

且它對情緒健康的影響甚大。

as it stimulates blood flow.

In addition, it lowers our cortisol levels,

音樂也會影響我們的 心跳率、呼吸，和脈搏，

thus reducing anxiety,

which is a common stimulant for neurological symptoms.

因為音樂會刺激血流。

此外，音樂會降低 我們的皮質醇濃度，

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

因而減輕焦慮，

對於神經系統症狀， 它是一種常見的刺激物。

If it's not a family member --

(Tic)

在我們的一生中，都有可能 認識神經系統疾病患者。

it could be a friend or a coworker.

Please help me spread this message:

如果不是家中的成員——

（痙攣＋尖聲）

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

也有可能是朋友、同事。

請協助我將這個訊息傳播出去：

I still have Tourette syndrome.

音樂可以振奮我們的生命， 從內在治癒我們。

I deal with it every day, every hour.

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

我仍然有妥瑞症。

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

我每天、每小時都要去處理它。

because my verbal tics can be extremely distracting.

我接下來的人生 也都得要去處理它。

That means that sometimes when I wink my eyes involuntarily,

那就表示，我常常得要 暫時離開我的教室，

因為我的言語痙攣可能 會造成極大的分心作用。

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

那就表示，有時， 當我不自主地眨眼時，

when I'm really not.

(Laughter)

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

坐在我對面的男人 會以為我在挑逗他，

But the most amazing thing is

但我其實沒有。（笑聲）

我得要告訴他：「對不起—— 我不是在試著調情。」

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

但，最驚人的是，

I don't tic.

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

當我唱歌、演奏音樂， 甚至只是聽音樂時，

with thousands of people watching me.

我就不會痙攣。

我已經多次站上壓力極大的舞台，

And while I do tic before my performance --

(Tic)

有數千人看著我。

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

雖然我在演出之前確實會痙攣——

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

（痙攣＋尖聲）

當音樂開始時， 痙攣就坐到後座去了。

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

所以，雖然我自己寫了詞、作了曲。

Thank you.

(Applause)

但，在現實中，我發現

其實是音樂在安定 （和「作曲」同一個字）我。

謝謝。

（掌聲）

(Tic)

(Music)

（痙攣＋尖聲）

（音樂）

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

'Cause you were there and then you were not

（唱歌）我想我太早 取下我的面具了，

I think I pushed it all onto you

I should have dragged it out dragged it out

因為你本來在那裡， 接著就不在了。

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

我想，我把一切都推給了你。

我應該要把一切拖出去的， 把一切拖出去的。

我想，也許每次 我失去一點點自我，

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

我就會再把它戴上。

只是做偽裝，直到我 把我自己的心打破成兩半。

And oh I wanted you to know the real me

And take it seriously

喔，我希望你能認識真正的我，

But now

並認真看待。

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

I'm not loving you

但，現在，

我並不愛你。我並不愛你。

I thought I could trust you

But you're running away from me and my mask

我並不愛你。

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

我以為我可以信任你，

但你逃離了我和我的面具。

I'm not loving you

我並不愛你。我並不愛你。

我並不愛你。

Right now

I think I took my mask off too soon

現在，

Because you screamed when I pulled it off

我想我太早取下我的面具了，

You told me you were unprepared

And like that just like that

因為我把它脫下來時， 你大叫出來。

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

你告訴我，你沒做好準備，

像那樣，就像那樣。

我想，這次也許會 比以往都還要痛。

I think maybe this blow I took was a little more

A little more

我想，我承受的這一擊 稍微強了一些，

And oh I wanted you to know the real me

稍微強了一些。

喔，我希望你能認識真正的我，

And take it seriously

But now

並認真看待。

I’m not loving you I'm not loving you

I'm not loving you

但，現在，

I thought I could trust you

我並不愛你。我並不愛你。

But you're running away from me and my mask

我並不愛你。

我以為我可以信任你，

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

但你逃離了我和我的面具。

I'm not loving you

我並不愛你。我並不愛你。

我並不愛你。

Right now

(Applause)

現在。

（掌聲）