picture yourself shopping you’re minding your own business getting what you need
your own business getting what you need
your own business getting what you need when you notice a group of girls
when you notice a group of girls
when you notice a group of girls laughing hysterically with each other
laughing hysterically with each other
laughing hysterically with each other but as soon as the laughter starts it
but as soon as the laughter starts it
but as soon as the laughter starts it stops one girl falls to the graft that
stops one girl falls to the graft that
stops one girl falls to the graft that girl was me and like you might have been
girl was me and like you might have been
girl was me and like you might have been had you seen a young girl collapse in
had you seen a young girl collapse in
had you seen a young girl collapse in the middle of the store the shoppers
the middle of the store the shoppers
the middle of the store the shoppers around me were pretty concerned luckily
around me were pretty concerned luckily
around me were pretty concerned luckily for me my friends knew what to do
for me my friends knew what to do
for me my friends knew what to do because there was always a possibility
because there was always a possibility
because there was always a possibility of this happening it wasn’t the first
of this happening it wasn’t the first
of this happening it wasn’t the first time it started the summer I turned 13 I
time it started the summer I turned 13 I
time it started the summer I turned 13 I like any teenager was tired all the time
like any teenager was tired all the time
like any teenager was tired all the time didn’t matter what I was doing I could
didn’t matter what I was doing I could
didn’t matter what I was doing I could be in the car talking to someone playing
be in the car talking to someone playing
be in the car talking to someone playing a game I was liable to fall asleep I
a game I was liable to fall asleep I
a game I was liable to fall asleep I once even fell asleep in the minute it
once even fell asleep in the minute it
once even fell asleep in the minute it took me to tie my shoes when school
took me to tie my shoes when school
took me to tie my shoes when school started things got much hoarse I swear
started things got much hoarse I swear
started things got much hoarse I swear that year my teachers voice sounded
that year my teachers voice sounded
that year my teachers voice sounded exactly like a metronome before school
exactly like a metronome before school
exactly like a metronome before school had been easy to the point of boredom
had been easy to the point of boredom
had been easy to the point of boredom but I was barely getting through the day
but I was barely getting through the day
but I was barely getting through the day I tried to explain to my parents and
I tried to explain to my parents and
I tried to explain to my parents and teachers how tired I was but I was a
teachers how tired I was but I was a
teachers how tired I was but I was a teenager and all teenagers get tired I
teenager and all teenagers get tired I
teenager and all teenagers get tired I tried to show them how when I would feel
tried to show them how when I would feel
tried to show them how when I would feel a strong emotion such as laughter or
a strong emotion such as laughter or
a strong emotion such as laughter or anxiety my knees would buckle to the
anxiety my knees would buckle to the
anxiety my knees would buckle to the point of me collapsing but I was
point of me collapsing but I was
point of me collapsing but I was probably just dehydrated more accurately
probably just dehydrated more accurately
probably just dehydrated more accurately I was frustrated I was confused I knew
I was frustrated I was confused I knew
I was frustrated I was confused I knew that there was something not right so I
that there was something not right so I
that there was something not right so I did what any other thirteen-year-old
did what any other thirteen-year-old
did what any other thirteen-year-old would do during a time of medical crisis
would do during a time of medical crisis
would do during a time of medical crisis I googled it
I googled it
I googled it and lo and behold there was the
and lo and behold there was the
and lo and behold there was the diagnosis that I would get from a
diagnosis that I would get from a
diagnosis that I would get from a neurologist a year later narcolepsy with
neurologist a year later narcolepsy with
neurologist a year later narcolepsy with cataplexy have you ever pulled an
cataplexy have you ever pulled an
cataplexy have you ever pulled an all-nighter how’d you feel afterwards
all-nighter how’d you feel afterwards
all-nighter how’d you feel afterwards probably not great how about two nights
probably not great how about two nights
probably not great how about two nights in a row or three according to the wake
in a row or three according to the wake
in a row or three according to the wake up narcolepsy foundation it’s estimated
up narcolepsy foundation it’s estimated
up narcolepsy foundation it’s estimated that a person with narcolepsy
that a person with narcolepsy
that a person with narcolepsy experiences the same exhaustion as
experiences the same exhaustion as
experiences the same exhaustion as someone who has not slept for 48 to 72
someone who has not slept for 48 to 72
someone who has not slept for 48 to 72 hours it’s a long time generally
hours it’s a long time generally
hours it’s a long time generally speaking what narcolepsy means is that I
speaking what narcolepsy means is that I
speaking what narcolepsy means is that I cannot control my sleep cycles it leaves
cannot control my sleep cycles it leaves
cannot control my sleep cycles it leaves me in a kind of in-between state of wake
me in a kind of in-between state of wake
me in a kind of in-between state of wake and sleep all the time
and sleep all the time
and sleep all the time cataplexy is the other half of my
cataplexy is the other half of my
cataplexy is the other half of my diagnosis not everyone who has
diagnosis not everyone who has
diagnosis not everyone who has narcolepsy has cataplexy but it’s common
narcolepsy has cataplexy but it’s common
narcolepsy has cataplexy but it’s common in more severe cases cataplexy is when I
in more severe cases cataplexy is when I
in more severe cases cataplexy is when I feel a strong emotion again laughter
feel a strong emotion again laughter
feel a strong emotion again laughter anxiety and my central nervous system
anxiety and my central nervous system
anxiety and my central nervous system overloads I become temporarily paralyzed
overloads I become temporarily paralyzed
overloads I become temporarily paralyzed so that day in the store wall it may
so that day in the store wall it may
so that day in the store wall it may have looked like I had just fallen
have looked like I had just fallen
have looked like I had just fallen asleep or was unconscious I was fully
asleep or was unconscious I was fully
asleep or was unconscious I was fully aware of everything that was going on
aware of everything that was going on
aware of everything that was going on around me I just was unable to do
around me I just was unable to do
around me I just was unable to do anything about it
anything about it
anything about it my parents joke that the only good thing
my parents joke that the only good thing
my parents joke that the only good thing that came out of my diagnosis was that I
that came out of my diagnosis was that I
that came out of my diagnosis was that I kind of slept through my moody teenage
kind of slept through my moody teenage
kind of slept through my moody teenage rebellion stage all jokes aside they
rebellion stage all jokes aside they
rebellion stage all jokes aside they weren’t wrong I my diagnosis was a
weren’t wrong I my diagnosis was a
weren’t wrong I my diagnosis was a double-edged sword
double-edged sword
double-edged sword on the one hand it I was ecstatic it
on the one hand it I was ecstatic it
on the one hand it I was ecstatic it confirmed that I was not crazy that I
confirmed that I was not crazy that I
confirmed that I was not crazy that I knew what I was talking about and there
knew what I was talking about and there
knew what I was talking about and there was actually something wrong with me
was actually something wrong with me
was actually something wrong with me well there’s that other hand once it’s
well there’s that other hand once it’s
well there’s that other hand once it’s confirmed the plausibility of something
confirmed the plausibility of something
confirmed the plausibility of something being wrong with me turned into a
being wrong with me turned into a
being wrong with me turned into a reality
reality
reality and that reality wasn’t all that pretty
and that reality wasn’t all that pretty
and that reality wasn’t all that pretty not only did I sort of skip over the
not only did I sort of skip over the
not only did I sort of skip over the typical teenage experience I had to
typical teenage experience I had to
typical teenage experience I had to start playing adult it seems silly but
start playing adult it seems silly but
start playing adult it seems silly but in questions of my health and my future
in questions of my health and my future
in questions of my health and my future it would be automatically deferred to my
it would be automatically deferred to my
it would be automatically deferred to my parents I had to step up and take
parents I had to step up and take
parents I had to step up and take responsibility in order for my point of
responsibility in order for my point of
responsibility in order for my point of view to be heard I had to worry about my
view to be heard I had to worry about my
view to be heard I had to worry about my symptoms incapacitating me at school I
symptoms incapacitating me at school I
symptoms incapacitating me at school I had to make sure that I was on a by the
had to make sure that I was on a by the
had to make sure that I was on a by the minute schedule for all my medications I
minute schedule for all my medications I
minute schedule for all my medications I had to talk to my teachers and my
had to talk to my teachers and my
had to talk to my teachers and my guidance counselor’s and advocate for
guidance counselor’s and advocate for
guidance counselor’s and advocate for myself and for my education and I had to
myself and for my education and I had to
myself and for my education and I had to worry about the future was I going to be
worry about the future was I going to be
worry about the future was I going to be able to drive a car or go to college or
able to drive a car or go to college or
able to drive a car or go to college or get a job I had no idea and that
get a job I had no idea and that
get a job I had no idea and that terrified me my parents and family could
terrified me my parents and family could
terrified me my parents and family could sympathize but they couldn’t empathize
sympathize but they couldn’t empathize
sympathize but they couldn’t empathize only one in every 2,000 people have
only one in every 2,000 people have
only one in every 2,000 people have narcolepsy and I was at one but and
narcolepsy and I was at one but and
narcolepsy and I was at one but and luckily for me a lot more than 2000
luckily for me a lot more than 2000
luckily for me a lot more than 2000 people have the internet so again I
people have the internet so again I
people have the internet so again I turned to Google this time in search of
turned to Google this time in search of
turned to Google this time in search of a life led with narcolepsy and
a life led with narcolepsy and
a life led with narcolepsy and surprisingly I found one that I found a
surprisingly I found one that I found a
surprisingly I found one that I found a small thriving community of people who
small thriving community of people who
small thriving community of people who on their Facebook pages and blogs and
on their Facebook pages and blogs and
on their Facebook pages and blogs and YouTube channels talk candidly about
YouTube channels talk candidly about
YouTube channels talk candidly about life with narcolepsy yes they discussed
life with narcolepsy yes they discussed
life with narcolepsy yes they discussed the frustrations that come with having
the frustrations that come with having
the frustrations that come with having to check the medical disability box but
to check the medical disability box but
to check the medical disability box but they never dwelt on that more often they
they never dwelt on that more often they
they never dwelt on that more often they talked about the constructive ways that
talked about the constructive ways that
talked about the constructive ways that they could make their lives better that
they could make their lives better that
they could make their lives better that community of people showed me that a
community of people showed me that a
community of people showed me that a disability doesn’t have the power to
disability doesn’t have the power to
disability doesn’t have the power to ruin my life
ruin my life
ruin my life not if I don’t let it when I was
not if I don’t let it when I was
not if I don’t let it when I was diagnosed I was promised two things a
diagnosed I was promised two things a
diagnosed I was promised two things a life sentence and a way to manage but
life sentence and a way to manage but
life sentence and a way to manage but I’ve done a lot more than manage I am
I’ve done a lot more than manage I am
I’ve done a lot more than manage I am learning to drive a car now next summer
learning to drive a car now next summer
learning to drive a car now next summer I can go and start looking at colleges
I can go and start looking at colleges
I can go and start looking at colleges and I’m less symptomatic today that I
and I’m less symptomatic today that I
and I’m less symptomatic today that I been in a very long time that doesn’t
been in a very long time that doesn’t
been in a very long time that doesn’t that’s not to say I still don’t have bad
that’s not to say I still don’t have bad
that’s not to say I still don’t have bad days or can stop thinking about it
days or can stop thinking about it
days or can stop thinking about it entirely but it’s taught me that even
entirely but it’s taught me that even
entirely but it’s taught me that even though I might have a disability and
though I might have a disability and
though I might have a disability and that there might be something wrong with
that there might be something wrong with
that there might be something wrong with the chemical nature in my brain there’s
the chemical nature in my brain there’s
the chemical nature in my brain there’s nothing wrong with me thank you
nothing wrong with me thank you
nothing wrong with me thank you [Applause]
[Applause]
[Applause] [Music]
”
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