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