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

Translator: Agus Ari Wibawa Reviewer: Made Pramana

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

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

Aku ingin kalian membayangkan bagaimana rasanya

your eyes were constantly rolling,

kalau, selama dua menit, lengan kirimu terus-menerus bergerak,

your jaw was clenching so hard

that it felt like your teeth were about to break,

matamu terus-menerus berputar,

and every ten seconds,

rahangmu mengatup sangat keras

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

hingga gigimu terasa seperti akan hancur,

(Tic)

dan setiap sepuluh detik,

kamu dipaksa untuk mengeluarkan pekikan yang keras dan bernada tinggi.

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

every waking moment, seven days a week.

(Tic)

(Tic)

Beginilah aku hidup sejak usia enam tahun,

And these were only some of my symptoms.

setiap bangun tidur, setiap hari dalam seminggu.

When these symptoms surfaced, my life literally changed overnight.

(Tic)

Dan ini hanyalah beberapa gejalaku.

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

Ketika gejala-gejala ini muncul, hidupku benar-benar berubah seketika.

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

Aku tak lagi bisa bersekolah, bertemu teman-temanku

In search for a cure, we flew to New York

atau bahkan makan di luar,

karena gangguan tic-ku akan menarik perhatian orang-orang.

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

Dalam perjalanan mencari obat, kami terbang ke New York

(Tic)

untuk bertemu dokter neuropsikologis anak terbaik yang bisa ditemukan orang tuaku.

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

Instead, she diagnosed me with an incurable neurological disorder,

(Tic)

Namun dokter itu tak memberikan kami obat yang kami harapkan.

Tourette syndrome.

Sebagai gantinya, ia mendiagnosisku dengan kelainan saraf yang tak bisa disembukan,

Oftentimes, medication can be an essential and valuable part

of many treatment processes.

sindrom Tourrete.

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

Sering kali, obat-obatan bisa jadi bagian penting dan berharga

One drug put me in a wheelchair,

dari banyaknya proses pengobatan.

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

Namun dalam kasusku, obat-obatan hanya memperburuk keadaan.

Satu obat membuatku memakai kursi roda,

Another one caused me to hallucinate.

karena kakiku mati rasa hingga aku tak bisa menggerakkannya.

I would see green people running after me,

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

Yang satunya membuatku berhalusinasi.

And it was really scary.

Aku melihat orang berwarna hijau mengejarku,

We tried drug after drug

mengancam akan merebusku dan memakanku sebagai sup.

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

Dan itu sangat menakutkan.

But every single attempt just ended up making things worse.

Kami mencoba berbagai obat

untuk mencari sesuatu yang bisa membuatku lega.

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

Namun semuanya berakhir memperburuk keadaan.

the prescription drug expenditure

to treat neurological conditions and mental illness

Diperkirakan tahun 2013 di Amerika Serikat saja,

was about 89 billion dollars annually.

pengeluaran untuk membeli obat

untuk mengobati kondisi neurologis dan gangguan mental

But imagine if there were a way to treat these conditions

adalah sekitar 80 miliar dolar setiap tahunnya.

without a price or without side effects.

Namun bayangkan jika ada sebuah cara untuk mengobati kondisi-kondisi ini

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

secara gratis atau tanpa efek samping.

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

Bayangkan jika dokter kalian meresepkan untuk mendengarkan musik setiap harinya.

and the effect that it had on my neurological disorder.

Aku di sini untuk membagikan pengalaman pribadiku dengan musik

(Tic)

Tourette syndrome is essentially a series

dan efeknya terhadap gangguan neurologisku.

of involuntary movements and sounds,

(Tic)

known as tics.

SIndrom Tourette pada dasarnya adalah serangkaian

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

gerakan dan suara yang tak disengaja,

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

yang dikenal sebagai tics.

the hiccups.

Yang paling bisa aku gambarkan tentang rasanya menderita sindrom Tourette

You can try to stop yourself from the act.

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

adalah sesuatu yang aku yakin kalian semua familier--

cegukan.

but there is just nothing you can do about it

Kalian bisa coba untuk menghentikan cegukan.

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

Kalian bisa tahan napas & berhitung sampai 10, atau meminum air secara terbalik,

namun sebenarnya tak ada yang bisa dilakukan

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

sampai sensasi itu hilang dan cegukannya pergi.

feeling exhausted and in despair.

(Tic)

Aku sering berbaring di lantai kamarku setelah terjadinya serangan tics,

My equally desperate mother would attempt to soothe me and herself

merasa lelah dan putus asa.

by putting on some music.

(Tic)

She would play peaceful music to soothe our aching hearts.

Ibuku yang sama putus asanya denganku akan mencoba untuk menenangkan kami

And we'd lie together on the floor

dengan memutar musik.

and allow the beat of the drums to uplift us.

Dia akan memutar musik yang damai untuk menenangkan hati kami yang sakit.

And as the rhythms and the tunes unfolded,

Dan kami berdua berbaring di lantai

our spirits would rise, our moods would be lighter,

dan membiarkan dentuman drum menghibur kami.

and we would be rejuvenated.

Dan dengan irama dan lagu yang mengalun,

(Tic)

jiwa kami akan terangkat, suasana hati kami akan membaik,

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

dan kami akan pulih kembali.

(Tic)

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

Selanjutnya, dan tanpa disadari, aku kecanduan obat baru ini.

I would rush to the 88 keys of my piano,

Ketika aku larut dalam kesedihan dan sedang mengasihani diri sendiri,

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

aku segera menuju piano 88 tuts-ku,

would soon set me free.

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

tahu kalau lagu dan irama dari setiap tuts itu

It was just something I did by default.

akan membebaskanku.

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

Pada saat itu, aku tak menyadari betapa membantunya musik bagiku.

It was just a release.

Sesuatu yang aku lakukan dengan sendirinya.

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

Ketika aku menulis laguku, itu bukan untuk membuat orang lain terkesan.

and the intensity of my attacks reduced.

Itu hanyalah sebuah pelampiasan.

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

Namun, semakin aku memainkannya, semakin berkurang gejala yang muncul,

dan intensitas serangan tics-ku berkurang.

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

Aku jadi penasaran tentang bagaimana lagu-lagu ini meringankan gejalaku.

So I began to search.

Dan aku bertanya-tanya kalau ada kasus lain mengenai pengobatan musik.

I found that there was a highly successful US congresswoman,

Gabby Giffords, who was shot in the head.

Jadi aku mulai mencarinya.

She lost her ability to speak.

Aku menemukan seorang anggota kongres yang sangat sukses,

Because the ability to speak and the ability to sing

Gabby Giffords, yang ditembak di kepala.

lay in two separate parts of the brain,

Dia kehilangan kemampuan untuk berbicara.

her doctors brought in music therapists to work with her.

Dikarenakan kemampuan untuk berbicara dan bernyanyi

The therapists encouraged her to sing her thoughts,

terletak di bagian otak yang berbeda,

since she was incapable of speaking them.

dokternya membawakan terapis musik untuk membantunya.

And through this technique,

the congresswoman was finally able to regain her speech.

Terapis itu mendorong agar dia menyanyikan isi kepalanya,

karena dia tak bisa membicarakannya.

Music helped heal Gabby Giffords.

Dan melalui teknik ini,

anggota kongres itu akhirnya bisa berbicara lagi.

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

Musik membantu Gabby Gillfords.

known as oxytocin

and a feel-good chemical, dopamine.

Ilmuwan menemukan bahwa musik menyebabkan otak untuk melepaskan pereda nyeri alami

Dopamine is essential for a healthy nervous system

yang dikenal sebagai oksitosin

and strongly impacts emotional health.

dan senyawa peningkat suasana hati, dopamin.

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

Dopamin sangat penting bagi sistem saraf yang sehat

dan sangat memengaruhi kesehatan emosional.

as it stimulates blood flow.

In addition, it lowers our cortisol levels,

Musik juga memengaruhi denyut jantung, laju pernapasan dan denyut nadi kita,

thus reducing anxiety,

karena itu merangsang peredaran darah.

which is a common stimulant for neurological symptoms.

Sebagai tambahan, itu juga menurunkan kadar kortisol,

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

sehingga meredakan kecemasan,

yang mana merupakan perangsang umum bagi gejala neurologis.

If it's not a family member --

(Tic)

Di sepanjang hidup kita, kita akan mengenal orang dengan gangguan neurologis.

it could be a friend or a coworker.

Please help me spread this message:

Kalau bukan anggota keluarga--

(Tic)

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

bisa jadi temanmu atau rekan kerja.

Tolong bantu aku menyebarkan pesan ini:

I still have Tourette syndrome.

musik punya kemampuan untuk menghibur kita dan menyembuhkan kita dari dalam.

I deal with it every day, every hour.

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

Aku masih menderita sindrom Tourette.

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

Aku menghadapinya setiap hari, setiap jam.

because my verbal tics can be extremely distracting.

Aku akan menghadapinya seumur hidupku.

That means that sometimes when I wink my eyes involuntarily,

Dan itu artinya aku harus sering permisi dari kelas,

karena serangan tics verbal yang bisa sangat mengganggu.

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

Itu berarti terkadaan saat aku berkedip secara tidak disengaja,

when I'm really not.

(Laughter)

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

pria yang duduk di hadapanku mengira kalau aku merayunya,

But the most amazing thing is

padahal tidak.

(Tertawa)

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

Dan aku harus memberitahunya, “Maaf -- Aku tak bermaksud merayu.”

Namun yang paling menakjubkan adalah

I don't tic.

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

ketika aku bernyanyi, memainkan musik dan bahkan hanya mendengarkan musik,

with thousands of people watching me.

aku tak mengalami serangan tics.

Aku sudah tampil banyak kali dalam situasi yang membuat stres,

And while I do tic before my performance --

(Tic)

dengan ribuan orang menontonku.

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

Dan ketika tics-ku menyerang sebelum penampilanku --

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

(Tic)

ketika musiknya mulai, serangan tics-nya akan menghilang.

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

Jadi, aku mungkin sudah menuliskan lirikku sendiri dan membuat musikku sendiri.

Thank you.

(Applause)

Namun nyatanya, aku sadar kalau sebenarnya musiklah yang membentukku.

Terima kasih.

(Tepuk tangan)

(Tic)

(Music)

(Tic)

(Musik)

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

'Cause you were there and then you were not

(Bernyanyi) Kurasa aku membuka topengku terlalu dini

I think I pushed it all onto you

I should have dragged it out dragged it out

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

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

And oh I wanted you to know the real me

And take it seriously

But now

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

I'm not loving you

I thought I could trust you

But you're running away from me and my mask

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

I'm not loving you

Right now

I think I took my mask off too soon

Because you screamed when I pulled it off

You told me you were unprepared

And like that just like that

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

I think maybe this blow I took was a little more

A little more

And oh I wanted you to know the real me

And take it seriously

But now

I’m not loving you I'm not loving you

I'm not loving you

I thought I could trust you

But you're running away from me and my mask

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

I'm not loving you

Right now

(Applause)

(Tepuk tangan)