What it's like to have Tourette's -- and how music gives me back control
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0:01 - 0:04I'd like you to imagine
what it would feel like -
0:04 - 0:09if for two whole minutes
your left arm was continuously flapping, -
0:09 - 0:12your eyes were constantly rolling,
-
0:12 - 0:14your jaw was clenching so hard,
-
0:14 - 0:16that it felt like your teeth
were about to break. -
0:17 - 0:18And every ten seconds,
-
0:18 - 0:23you were forced to let out
a loud, high-pitched screech. -
0:25 - 0:28This is how I lived
at the young age of six. -
0:29 - 0:32Every waking moment, seven days a week.
-
0:33 - 0:35And these were only some of my symptoms.
-
0:36 - 0:40When these symptoms surfaced,
my life literally changed over night. -
0:40 - 0:45I could no longer go to school,
see my friends or even eat out, -
0:45 - 0:49because my tics would attract
the attention of everyone in the room. -
0:50 - 0:52In search for a cure, we flew to New York
-
0:52 - 0:56to meet with the best pediatric
neuropsychologist my parents could find. -
1:00 - 1:03But the doctor did not give us
the easy remedy we had hoped for. -
1:04 - 1:08Instead, she diagnosed me
with an incurable neurological disorder, -
1:08 - 1:10Tourette's syndrome.
-
1:11 - 1:14Oftentimes, medication can be
an essential and valuable part -
1:14 - 1:16of many treatment processes.
-
1:16 - 1:19But in my case, the drugs
only made things worse. -
1:20 - 1:22One drug put me in a wheelchair,
-
1:22 - 1:26because my legs had gotten so numb,
that I couldn't move them. -
1:27 - 1:29Another one caused me to hallucinate.
-
1:29 - 1:32I would see green people running after me,
-
1:32 - 1:35threatening to boil me in a pot
and drink me as soup. -
1:35 - 1:36And it was really scary.
-
1:37 - 1:38We tried drug after drug
-
1:38 - 1:41to find something that would bring me
some sort of relief. -
1:42 - 1:45But every single attempt
just ended up making things worse. -
1:47 - 1:52It is estimated that in 2013
in the United States alone, -
1:52 - 1:54the prescription drug expenditure
-
1:54 - 1:57to treat neurological conditions
and mental illness -
1:57 - 2:01was about 89 billion dollars annually.
-
2:02 - 2:05But imagine if there were a way
to treat these conditions -
2:05 - 2:08without a price or without side effects.
-
2:09 - 2:13Imagine if your doctor prescribed you
a daily dose of music. -
2:14 - 2:18I'm here today to share with you
my personal experience with music, -
2:18 - 2:21and the effect that it had
on my neurological disorder. -
2:24 - 2:26Tourette's syndrome
is essentially a series -
2:26 - 2:29of involuntary movements
and sounds, known as tics. -
2:30 - 2:34And the best way for me to really describe
what it's like to have Tourette's syndrome -
2:34 - 2:37is something I'm sure
you're all very familiar with -- -
2:37 - 2:38the hiccups.
-
2:39 - 2:41You can try to stop yourself from the act.
-
2:41 - 2:44You can hold your breath and count to 10,
or drink water upside down, -
2:44 - 2:47but there is just nothing
you can do about it -
2:47 - 2:50until the sensation passes
and the hiccups have taken their course. -
2:51 - 2:55I often lay on my bedroom floor
after an attack of tics, -
2:55 - 2:57feeling exhausted and in despair.
-
2:59 - 3:03My equally desperate mother
would attempt to soothe me and herself -
3:03 - 3:05by putting on some music.
-
3:05 - 3:08She would play peaceful music,
to soothe our aching hearts. -
3:09 - 3:10And we'd lie together on the floor,
-
3:10 - 3:13and allow the beat
of the drums to uplift us. -
3:13 - 3:16And as the rhythms and the tunes unfolded,
-
3:16 - 3:19our spirits would rise,
our moods would be lighter, -
3:19 - 3:21and we would be rejuvenated.
-
3:24 - 3:28Very soon, and rather unknowingly,
I became an addict of this newfound drug. -
3:29 - 3:33When I found myself slipping
into my bouts of sadness and self-pity, -
3:33 - 3:35I would rush to the 88 keys of my piano,
-
3:35 - 3:40knowing in my heart that the tones
and rhythms from each one of those keys -
3:40 - 3:41would soon set me free.
-
3:42 - 3:45At the time, I didn't realize
how much music was helping me. -
3:45 - 3:48It was just something I did by default.
-
3:48 - 3:51When I wrote my songs
it wasn't to impress anybody, -
3:51 - 3:52it was just a release.
-
3:53 - 3:56But the more I played,
the less my symptoms surfaced, -
3:56 - 3:58and the intensity of my attacks reduced.
-
3:58 - 4:02So I became curious as to how
these songs were soothing my symptoms. -
4:02 - 4:06And I wondered if there were
any other cases of medicinal music. -
4:08 - 4:09So I began to search.
-
4:11 - 4:14I found that there was
a highly successful US congresswoman, -
4:14 - 4:16Gabby Giffords, who was shot in the head.
-
4:17 - 4:19She lost her ability to speak.
-
4:19 - 4:22Because the ability to speak
and the ability to sing -
4:22 - 4:24lay in two separate parts of the brain,
-
4:24 - 4:27her doctors brought in
music therapist to work with her. -
4:28 - 4:30The therapist encouraged her
to sing her thoughts, -
4:30 - 4:32since she was incapable of speaking them.
-
4:32 - 4:34And through this technique,
-
4:34 - 4:37the congresswoman was finally able
to regain her speech. -
4:38 - 4:40Music helped heal Gabby Giffords.
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4:42 - 4:46Scientists have found that music causes
our brains to release a natural painkiller -
4:46 - 4:47known as oxytocin,
-
4:47 - 4:49and a feel-good chemical dopamine.
-
4:50 - 4:52Dopamine is essential
for a healthy nervous system, -
4:52 - 4:55and strongly impacts emotional health.
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4:55 - 4:59Music also affects our heart rate,
breathing and pulse rate, -
4:59 - 5:01as it stimulates blood flow.
-
5:01 - 5:04In addition, it lowers
our cortisol levels, -
5:04 - 5:06thus reducing anxiety,
-
5:06 - 5:09which is a common stimulant
for neurological symptoms. -
5:10 - 5:14In our lifetimes, we are all going to know
someone with a neurological disorder. -
5:15 - 5:17If it's not a family member,
-
5:18 - 5:20it could be a friend or a coworker.
-
5:21 - 5:23Please help me spread this message.
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5:23 - 5:27Music has the ability to uplift our lives
and heal us from within. -
5:29 - 5:30I still have Tourette's syndrome,
-
5:30 - 5:33I deal with it every day, every hour.
-
5:33 - 5:35I'm going to deal with it
for the rest of my life. -
5:35 - 5:39And that means that I have to frequently
excuse myself from my classroom, -
5:39 - 5:42because my verbal tics
can be extremely distracting. -
5:42 - 5:45That means that sometimes
when I wink my eyes involuntarily, -
5:45 - 5:48the guy sitting opposite from me
thinks I'm flirting with him -
5:48 - 5:49when I'm really not.
-
5:49 - 5:53And I have to tell him, "Sorry,
I wasn't trying to flirt." -
5:54 - 5:56But the most amazing thing is
-
5:56 - 6:01that when I sing, play music
and even just listen to music, -
6:01 - 6:02I don't tic.
-
6:03 - 6:07I've been onstage numerous times
in highly stressful situations, -
6:07 - 6:09with thousands of people watching me.
-
6:09 - 6:12And while I do tic before my performance,
-
6:13 - 6:16when the music starts,
the tics take a back seat. -
6:18 - 6:23So, I may have written my own lyrics
and composed my own music, -
6:23 - 6:27but in reality I realized
it was the music that composed me. -
6:28 - 6:29Thank you.
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6:29 - 6:36(Applause)
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6:41 - 6:45(Music)
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7:10 - 7:14I think I took my mask off too soon.
-
7:14 - 7:17'Cause you were there
and then you were not -
7:17 - 7:21I think I pushed it all onto you
-
7:21 - 7:23I should have dragged it out
-
7:23 - 7:24dragged it out
-
7:24 - 7:31I think that maybe each time
I lose a bit of myself I put it back on -
7:31 - 7:37Just to fake ti till I break
my own heart in two -
7:39 - 7:43And oh I wanted you
-
7:43 - 7:46To know the real me
-
7:46 - 7:49And take it seriously
-
7:51 - 7:53But now
-
7:53 - 7:54I'm not loving you
-
7:54 - 7:56I'm not loving you
-
7:56 - 7:59I'm not loving you
-
7:59 - 8:01I thought I could trust you
-
8:02 - 8:06But you're running away
from me and my mask -
8:06 - 8:08I'm not loving you
-
8:08 - 8:09I'm not loving you
-
8:09 - 8:12I'm not loving you
-
8:18 - 8:21right now
-
8:21 - 8:25I think I took my mask off too soon
-
8:25 - 8:28because you screamed when I pulled it off
-
8:28 - 8:33You told me you were
unprepared and like that -
8:33 - 8:35just like that
-
8:35 - 8:42I think that maybe this time
it hurt more than it ever has before -
8:42 - 8:47I think maybe this blow
I took was a little more -
8:47 - 8:49a little more
-
8:50 - 8:53And oh I wanted you
-
8:53 - 8:55To know the real me
-
8:57 - 8:59And take it seriously
-
9:02 - 9:03But now
-
9:03 - 9:05I’m not loving you
-
9:05 - 9:06I'm not loving you
-
9:06 - 9:09I'm not loving you
-
9:10 - 9:12I thought I could trust you
-
9:12 - 9:17but you're running away
from me and my mask -
9:17 - 9:18I'm not loving you
-
9:18 - 9:20I'm not loving you
-
9:20 - 9:23I'm not loving you
-
9:30 - 9:33right now
-
9:33 - 9:39(Applause)
- Title:
- What it's like to have Tourette's -- and how music gives me back control
- Speaker:
- Esha Alwani
- Description:
-
- Video Language:
- English
- Team:
closed TED
- Project:
- TEDTalks
- Duration:
- 09:55
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