Be Your Own Superhero
one of my most powerful memories
does not take place in the beach of my
friends but instead
in a hospital i was just seven years old
and had another seizure
one of seven i’ve had in my lifetime
among dozens
hospitalizations i’ve had and i just sat
there
in the hospital on an iv waiting
for my blood sugar to come up and my
metabolic control to stabilize
watching spider-man 3. yeah
that movie on dvd on a tiny tv
in an even tinier bed with my dad now
you may wonder why this scenario of all
things bring me happiness
i mean who wants to spend her day in a
hospital watching an authority movie but
it’s in moments like these
moments may feel most weak and lost they
feel a strongest sense of clarity
i felt alone and helpless in the
aftermath of a near-death experience
brought on by a disease nearly every
single hospital i’ve ever walked into
did not know how to treat
and my dad and a superhero like
spider-man brought me that sense of
comfort that i was safe
i wasn’t alone and i could be helped
but even more than that my own
fascination with superheroes
as well as the very strong pop cultural
resurgence they’ve experienced since the
2000s
flex the desire to be the best version
of yourself to embrace your identity
to be a hero to others and years later
it was these desires that brought me to
unlock my inner superhero to embrace my
disease
and control it in my life rather than
letting it and others control me
in this talk i hope that you too will
learn some key ways in which you can
become your own superhero
now let’s flash back to the year 2000
where a story begins
on june 15 2000 me and my twin brother
zach were born
he was born two minutes prior to me over
the seven months
following our birth my health
mysteriously declined while my brother
stayed fine
i cannot tolerate breast milk nor
formula was constantly in and out of the
hospital on an iv fluid
just to stay alive i was clinically
obese at this point my parents were
puzzled and distraught as to what was
wrong with me
come january 2001 and i was diagnosed
with glycogen storage disease type 1a
an orphan medical condition affecting
only 6 000 people
out of more than 7 billion worldwide
now to put that in perspective growing
up i
never lived in the same town as anyone
else’s disease
the diagnosis was immediately followed
by a surgical incision to allow for the
placement of the gastric feeding tube
since i could not tolerate food nor
drink
notably my brother was unscathed and
this
was a dichotomy that took hold my life
for quite some time
now i’m sure you’re all asking
yourselves well
what the heck is this disease to put it
as simply as possible
glycogen storage disease or gst is
characterized by a missing enzyme in the
liver
this missing enzyme means i cannot
release glycogen from my liver need
constant human glucose in my body
prevent hypoglycemia or low blood sugar
seizures or even death
my doctor dr david weinstein prescribed
me on a corn starch regimen
shaken and drunk with water as soon as i
was old enough to tolerate it in order
to maintain my blood sugar
this regimen consists of six to eight
doses of cornstarch at set times around
the clock
and because i have so much cornstarch i
carry this bag around me wherever
i go in it i have an entire day’s worth
of cornstarch prepared ahead of time
as well as any other medical supplies i
need to keep my blood sugar stable and
keep me alive
in other words this bag right here is my
lifeline
now if i’m even 10 minutes late for my
corn starch my blood sugar plummets
30 minutes late could result in a
seizure and
if i miss my dose before i go to sleep
that is all but a guaranteed death
sentence
on top of this growing up i could never
get a full night’s sleep without having
to wake up in the middle of the night
oftentimes this consisted of just three
and a half hours of uninterrupted sleep
a follow-up question i often get asked
is well jake
i understand that you need to have six
to eight doses of cornstarch and set
times around the clock
what does that mean how can you better
quantify that
first of all that’s a great question
and second of all as an adult i consume
nearly a pound of corn starch every
single day
just to stay alive that is 1 200
calories a day stemming exclusively from
corn french
roughly half the amount of calories i
need to maintain my body weight at my
size
now these calories are more or less
empty calories that is to say that i am
no more full than i was before i had the
corn stretch
and thus i would eat just like anyone
else would on top of these 1200 calories
and that’s how the hallmark of clinical
obesity gets associated with this
disease
adam topless the physical activity was
next to impossible that my blood sugar
absolutely plummeting
i felt helpless throughout my childhood
my family and i were told a multitude of
things as people tried to dictate my
life
when i was a baby my parents were told
that i’d never be able to go to college
yet here i am they were also told that
i’d be in
and out of the hospital so frequently
that i would never lead life outside of
it
again here i am
often times i was viciously bullied for
my medical condition
where i was made fun of for being
overweight may feel self-conscious
just for taking my medication that i
have some sort of freak
in other people’s eyes because these
comments i constantly compare myself to
others see myself as lesser
inferior not normal
having a twin brother who did not have
disease and was not overweight only draw
this idea into my head like a drill
because when you’re young and you have a
twin
all you can do is compare yourselves to
each other when you’re the same age
have the same genes the same likeness
the same parents it’s practically
impossible not to
and so with all this being said
superheroes and superhero movies weren’t
escapism for me
often depicted as mutants or aliens
typically alone
or aloof and not traditionally normal i
liked after their powers
and heroism to me superman and
spider-man showed me their strength in
being different
and adversity is the way forward rather
than backward
so finally when i was 15 years old i
pushed my limits and became my own
superhero
due to recent information at the time my
diet had changed relative to my disease
i’m possessing far less carbohydrates
i had an aha lipo moment where i
realized that i could not take control
of my situation
i then spent hundreds of hours
researching nutrition weightlifting
and cardio learning to maintain a
caloric deficit spike consuming 1
200 plus college of corn starch today
miraculously it worked i lost over 20
pounds over several months
me and my family were shocked we never
even imagined
that would be possible to get in shape
with this disease
that’s not to say that i haven’t made
concerted efforts before i had a trainer
jay who was helping me stay active for
nearly four years prior
a year or two into my working with him
he was diagnosed with late onset type 1
diabetes
but we bonded over our blood sugar
problems nevertheless
the nutritional factor always left me
helpless and out of shape hence my
family’s shock when i made it work
all on my own so
naturally we realized we need to do two
things
that is one raise awareness for gst
and two inspire and motivate
i made a video with my trainer this
video started to raise awareness about
gsd
and diabetes show that you can control
your disease conquer any adversity
that comes your way to keep testing my
limits
i ran a half marathon to 17 years old
working closely with my doctor to
accomplish this
i was the first person with gsd to do so
under the age of 18 and the second
overall proving that the impossible
could be done with this disease
i had to check my blood sugar and
consume the candy smarties every single
mile
as well as consume corn starch every
couple miles just to keep going
i’ll be running a full marathon later
this year
fast forward to today and i’m in my
third year at vanderbilt
when i was told that i don’t even get to
have a first year of college let alone
lead life outside of the hospital
i’m studying mechanical engineering and
computer science in hopes of pursuing a
career that creates technology
that helps people in the same way that
i’ve been helped
so what should you take away from all
this well
i want to leave you with three ideas one
be your own superhero your disease
or medical condition or just any form of
diversity in your life gives you
strength and real life superpowers
you can accomplish anything because that
adversity does not hold you back
but instead pushes you forward
on that note also be proud of who you
are don’t let anyone change that
our uniqueness defines our identities
but just like superheroes our identities
are a source for our powers
in that regard don’t compare yourself to
others
me and my brother become closer than
ever by embracing our strengths and
differences
rather than competing fulfill the same
role two
enjoy the journey while pursuing any of
your goals
i cannot stress enough how incredibly
important it is to stay present and
really appreciate where you are in life
even if you’re looking to improve that
absolutely does not mean you should
reject yourself in the present moment
three finally don’t let anyone dictate
your life or tell you what you can
or should do you and only you to find
what you’re capable of
and people’s previously notions of you
should never ever affect that
so with all this being said go out and
do the things that you or others thought
were not possible
don’t write that book that your friend
said you weren’t great enough to even
start
go around that iron man that you thought
you weren’t even good enough swimmer for
go be your own superhero thank you