What its like to have Tourettes 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)