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

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

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

your eyes were constantly rolling,

your jaw was clenching so hard

that it felt like your teeth were about to break,

and every ten seconds,

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

(Tic)

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

every waking moment, seven days a week.

(Tic)

And these were only some of my symptoms.

When these symptoms surfaced, my life literally changed overnight.

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

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

In search for a cure, we flew to New York

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

(Tic)

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

Instead, she diagnosed me with an incurable neurological disorder,

Tourette syndrome.

Oftentimes, medication can be an essential and valuable part

of many treatment processes.

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

One drug put me in a wheelchair,

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

Another one caused me to hallucinate.

I would see green people running after me,

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

And it was really scary.

We tried drug after drug

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

But every single attempt just ended up making things worse.

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

the prescription drug expenditure

to treat neurological conditions and mental illness

was about 89 billion dollars annually.

But imagine if there were a way to treat these conditions

without a price or without side effects.

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

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

and the effect that it had on my neurological disorder.

(Tic)

Tourette syndrome is essentially a series

of involuntary movements and sounds,

known as tics.

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

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

the hiccups.

You can try to stop yourself from the act.

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

but there is just nothing you can do about it

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

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

feeling exhausted and in despair.

(Tic)

My equally desperate mother would attempt to soothe me and herself

by putting on some music.

She would play peaceful music to soothe our aching hearts.

And we'd lie together on the floor

and allow the beat of the drums to uplift us.

And as the rhythms and the tunes unfolded,

our spirits would rise, our moods would be lighter,

and we would be rejuvenated.

(Tic)

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

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

I would rush to the 88 keys of my piano,

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

would soon set me free.

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

It was just something I did by default.

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

It was just a release.

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

and the intensity of my attacks reduced.

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

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

So I began to search.

I found that there was a highly successful US congresswoman,

Gabby Giffords, who was shot in the head.

She lost her ability to speak.

Because the ability to speak and the ability to sing

lay in two separate parts of the brain,

her doctors brought in music therapists to work with her.

The therapists encouraged her to sing her thoughts,

since she was incapable of speaking them.

And through this technique,

the congresswoman was finally able to regain her speech.

Music helped heal Gabby Giffords.

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

known as oxytocin

and a feel-good chemical, dopamine.

Dopamine is essential for a healthy nervous system

and strongly impacts emotional health.

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

as it stimulates blood flow.

In addition, it lowers our cortisol levels,

thus reducing anxiety,

which is a common stimulant for neurological symptoms.

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

If it's not a family member --

(Tic)

it could be a friend or a coworker.

Please help me spread this message:

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

I still have Tourette syndrome.

I deal with it every day, every hour.

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

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

because my verbal tics can be extremely distracting.

That means that sometimes when I wink my eyes involuntarily,

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

when I'm really not.

(Laughter)

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

But the most amazing thing is

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

I don't tic.

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

with thousands of people watching me.

And while I do tic before my performance --

(Tic)

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

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

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

Thank you.

(Applause)

(Tic)

(Music)

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

'Cause you were there and then you were not

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)