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