[MUSIC PLAYING]
I've gone through periods in my life
where I've tried to live as if I don't have it.
I don't mean not adapt.
I mean just like stay on my feet all the time,
trying not to take naps or acknowledge the sleepiness.
That doesn't really work.
[LAUGHTER]
Socially all of my friends know that I have it.
Most of your friends just-- they all know.
Well, cause I sleep very publicly.
If I'm tired, I'm going to go to sleep.
I don't know.
It's kind of funny.
I try to take it lightly.
Because if you think about it too much, then it's like,
it's kind of depressing.
[LAUGHTER]
I know that some people tend to use humor
as a way to break the ice and let other people know
about narcolepsy.
But I think just first and foremost being open and direct
and really explaining what narcolepsy is,
how it's affected your life, and what they can do if they ever
see you have any sleep attacks or any episodes of cataplexy.
I mean, for me, I was 19.
And I told most of my friends.
But you're always in situations where you fall asleep.
And what I found was, even my friends that knew?
They were just like, I'm not sure what to do.
I don't know if I should wake you up or what I should do.
I guess it's probably good to educate them.
When I first was diagnosed, I tried
to keep a similar lifestyle.
And so I would show up and fall asleep.
So they started not inviting me after a while.
And it hurt.
I just feel like if they don't ask, if they don't ask about
that, I don't really, I don't want to go out
of my way to try to explain it.
He's very private about his narcolepsy.
He has told very few people at school.
I told them not to let their disease or narcolepsy take over
who they are and define them to their friends.
It may be freeing in a way to let
other people know that, hey, this is a part of me.
And this is what it looks like.
It's really difficult for people to understand it, especially
employers.
Because sleep is something that's looked upon as you're
slacking if you're sleeping.
As someone with narcolepsy, there's
that stigma of people sleeping all the time are lazy.
So I think it's really important for us
to disprove that by being better.
I totally agree.
Like, I think narcolepsy has been
one of the things that's motivated
me even more to succeed.
I've got to utilize every single moment I have
awake to do what I want to do.
I found somebody at the school who could help him.
And she even went-- the guidance counselor.
And she even went so far as to take a class on narcolepsy
to learn more about it.
You have to find those people though that are going to help.
And you have to advocate for your child.
And teach them to start to advocate for themselves.
Narcolepsy is a rare disease.
And it's not very well known by the general public.
So parents do need to take on that advocacy role
and let people know that it is a disease
and their child isn't lazy as some educators can think,
and what families and teachers can
do to help make a child successful.
I know that if I ever have issues or troubles
with my teachers concerning narcolepsy,
I can always go to my guidance counselor.
He's definitely been really helpful.
Yeah.
Kind of a point person?
Yeah.
Definitely.
It helps to be in the front and be one of the people that's
always raising their hands.
Because if I snap out of that, if I snap out
of like my in the moment zone, then I'll just be out.
I take a nap at least once a day.
It's a constant for me.
It's usually right around 1:00 p.m.
And then I will nap for about an hour.
And then I'll get up.
And then I'll have a nap around 5:00.
When she starts napping, she'll nap for six hours--
Yeah.
Or four hours.
I really won't get up.
I'm with you.
And then she, then she has to go through the sleepiness
at the end of the nap.
So she just was always missing activities.
Yeah.
Because once she starts napping, then I'm trying to wake her up.
And I'm grumpy.
And I'm like, don't wake me up.
I want to sleep.
I was that way at your age, too.
And I didn't know what was going on.
But my mother always said I was like, get away from me.
I was pretty easy to get along with person.
But, yeah.
Yeah, yeah, yeah.
Wake you up when you're a teenager and you're trying to?
No.
I tell parents to talk to the school nurse.
Having the opportunity to go and take
a nap in the nurse's office is really helpful.
It may help them feel a little bit more refreshed,
make them more available for learning.
I can tell when I'm going to fall asleep before I
get in the car driving.
So I either end up calling someone
saying I really can't come.
You know, I'm going to have to cancel.
Or I have tested it at times, which
is not a good thing to do.
I'll pull over and I'll take a nap.
Sometimes that does or doesn't mean I won't fall asleep again.
And I dial my lifeline.
I just call someone.
I do have friends that will be very supportive that way.
I can drive pretty much an hour and a half.
And then that's it.
No matter what.
I think having narcolepsy, the trials
make you stronger and more independent.
That's been the gift for me.
People don't even understand how resilient
you have to be to try to stay awake at times when
you painfully need to sleep.
Individuals should know that there are ways to live happy,
fulfilling lives.
I think the key is training yourself
that you're not missing out, that there's something maybe
you're gaining from it.