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What it's like to have Tourette's -- and how music gives me back control

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    I'd like you to imagine
    what it would feel like
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    if, for two whole minutes,
    your left arm was continuously flapping,
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    your eyes were constantly rolling,
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    your jaw was clenching so hard
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    that it felt like your teeth
    were about to break,
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    and every ten seconds,
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    you were forced to let out
    a loud, high-pitched screech.
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    (Tic)
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    This is how I lived
    at the young age of six,
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    every waking moment, seven days a week.
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    (Tic)
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    And these were only some of my symptoms.
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    When these symptoms surfaced,
    my life literally changed overnight.
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    I could no longer go to school,
    see my friends or even eat out,
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    because my tics would attract
    the attention of everyone in the room.
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    In search for a cure, we flew to New York
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    to meet with the best pediatric
    neuropsychologist my parents could find.
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    (Tic)
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    But the doctor did not give us
    the easy remedy we had hoped for.
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    Instead, she diagnosed me
    with an incurable neurological disorder,
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    Tourette's syndrome.
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    Oftentimes, medication can be
    an essential and valuable part
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    of many treatment processes.
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    But in my case, the drugs
    only made things worse.
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    One drug put me in a wheelchair,
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    because my legs had gotten so numb
    that I couldn't move them.
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    Another one caused me to hallucinate.
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    I would see green people running after me,
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    threatening to boil me in a pot
    and drink me as soup.
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    And it was really scary.
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    We tried drug after drug
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    to find something that would bring me
    some sort of relief.
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    But every single attempt
    just ended up making things worse.
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    It is estimated that in 2013
    in the United States alone,
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    the prescription drug expenditure
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    to treat neurological conditions
    and mental illness
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    was about 89 billion dollars annually.
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    But imagine if there were a way
    to treat these conditions
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    without a price or without side effects.
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    Imagine if your doctor prescribed you
    a daily dose of music.
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    I'm here today to share with you
    my personal experience with music
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    and the effect that it had
    on my neurological disorder.
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    (Tic)
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    Tourette's syndrome
    is essentially a series
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    of involuntary movements and sounds,
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    known as tics.
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    The best way for me to really describe
    what it's like to have Tourette's syndrome
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    is something I'm sure
    you're all very familiar with --
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    the hiccups.
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    You can try to stop yourself from the act.
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    You can hold your breath and count to 10,
    or drink water upside down,
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    but there is just nothing
    you can do about it
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    until the sensation passes
    and the hiccups have taken their course.
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    I often lay on my bedroom floor
    after an attack of tics,
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    feeling exhausted and in despair.
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    (Tic)
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    My equally desperate mother
    would attempt to soothe me and herself
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    by putting on some music.
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    She would play peaceful music
    to soothe our aching hearts.
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    And we'd lie together on the floor
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    and allow the beat
    of the drums to uplift us.
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    And as the rhythms and the tunes unfolded,
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    our spirits would rise,
    our moods would be lighter,
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    and we would be rejuvenated.
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    (Tic)
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    Very soon, and rather unknowingly,
    I became an addict of this newfound drug.
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    When I found myself slipping
    into my bouts of sadness and self-pity,
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    I would rush to the 88 keys of my piano,
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    knowing in my heart that the tones
    and rhythms from each one of those keys
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    would soon set me free.
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    At the time, I didn't realize
    how much music was helping me.
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    It was just something I did by default.
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    When I wrote my songs,
    it wasn't to impress anybody.
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    It was just a release.
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    But the more I played,
    the less my symptoms surfaced,
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    and the intensity of my attacks reduced.
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    So I became curious as to how
    these songs were soothing my symptoms.
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    And I wondered if there were
    any other cases of medicinal music.
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    So I began to search.
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    I found that there was
    a highly successful US congresswoman,
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    Gabby Giffords, who was shot in the head.
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    She lost her ability to speak.
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    Because the ability to speak
    and the ability to sing
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    lay in two separate parts of the brain,
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    her doctors brought in
    music therapists to work with her.
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    The therapists encouraged her
    to sing her thoughts,
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    since she was incapable of speaking them.
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    And through this technique,
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    the congresswoman was finally able
    to regain her speech.
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    Music helped heal Gabby Giffords.
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    Scientists have found that music causes
    our brains to release a natural painkiller
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    known as oxytocin
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    and a feel-good chemical, dopamine.
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    Dopamine is essential
    for a healthy nervous system
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    and strongly impacts emotional health.
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    Music also affects our heart rate,
    breathing and pulse rate,
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    as it stimulates blood flow.
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    In addition, it lowers
    our cortisol levels,
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    thus reducing anxiety,
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    which is a common stimulant
    for neurological symptoms.
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    In our lifetimes, we are all going to know
    someone with a neurological disorder.
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    If it's not a family member --
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    (Tic)
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    it could be a friend or a coworker.
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    Please help me spread this message:
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    music has the ability to uplift our lives
    and heal us from within.
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    I still have Tourette's syndrome.
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    I deal with it every day, every hour.
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    I'm going to deal with it
    for the rest of my life.
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    And that means that I have to frequently
    excuse myself from my classroom,
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    because my verbal tics
    can be extremely distracting.
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    That means that sometimes
    when I wink my eyes involuntarily,
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    the guy sitting opposite from me
    thinks I'm flirting with him,
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    when I'm really not.
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    (Laughter)
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    And I have to tell him,
    "Sorry -- I wasn't trying to flirt."
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    But the most amazing thing is
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    that when I sing, play music
    and even just listen to music,
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    I don't tic.
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    I've been onstage numerous times
    in highly stressful situations,
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    with thousands of people watching me.
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    And while I do tic
    before my performance --
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    (Tic)
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    when the music starts,
    the tics take a back seat.
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    So I may have written my own lyrics
    and composed my own music,
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    but in reality, I realized
    it was the music that composed me.
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    Thank you.
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    (Applause)
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    (Tic)
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    (Music)
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    (Singing) I think I took
    my mask off too soon
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    'cause you were there
    and then you were not
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    I think I pushed it all onto you
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    I should have dragged it out
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    dragged it out
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    I think that maybe each time
    I lose a bit of myself I put it back on
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    just to fake it till I break
    my own heart in two
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    And oh I wanted you
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    to know the real me
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    and take it seriously
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    But now
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    I'm not loving you
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    I'm not loving you
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    I'm not loving you
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    I thought I could trust you
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    but you're running away
    from me and my mask
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    I'm not loving you
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    I'm not loving you
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    I'm not loving you
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    right now
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    I think I took my mask off too soon
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    because you screamed when I pulled it off
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    You told me you were unprepared
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    and like that
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    just like that
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    I think that maybe this time
    it hurt more than it ever has before
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    I think maybe this blow I took
    was a little more
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    a little more
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    And oh I wanted you
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    to know the real me
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    and take it seriously
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    But now
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    I’m not loving you
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    I'm not loving you
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    I'm not loving you
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    I thought I could trust you
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    but you're running away
    from me and my mask
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    I'm not loving you
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    I'm not loving you
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    I'm not loving you
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    right now
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    (Applause)
Title:
What it's like to have Tourette's -- and how music gives me back control
Speaker:
Esha Alwani
Description:

more » « less
Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
09:55

English subtitles

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