Epilepsy Warrior

imagine this

an energetic little toddler girl

strolling around in a walker

upstairs in a two-story home

baby gates didn’t exist back then

suddenly

she went tumbling down the stairs her

mother diving to the rescue

calmed her down after pulling her out of

the walker

nothing much was thought of about that

experience

a few years later the same girl

six years old was seat with a glass cup

to get some flour from your auntie’s

house across the road

when the roads were clear she skipped

across the street

then this spider chill feeling

creeped up her like spiders creeping

under skin at the speed of lightning

then

damn she was out

slowly coming conscious

was no one else around

she could see glass in her hand

blood trickling down her arm

but you can feel it

she limped back home her parents rushed

you to hospital

a few years later she was sitting in the

school assembly

that spider chill feeling hit her again

and she started convulsing

in front of 300 students and teachers

brother dragged her out of assembly

embarrassed in front of his friends

having more ongoing similar experiences

she was officially diagnosed with

epilepsy

by age 11.

i am that little girl

from experiencing all these efforts

experiences

my seizure experiences were inflicted

from that traumatic brain injury

falling downstairs as a toddler

with over 80 million people worldwide

experiencing head injuries

every year if you fall

deal with domestic violence play contact

sports

or drive a car

this could happen to you

so what is epilepsy i’m one of

approximately 60 million epilepsy

warriors around the world

epilepsy is not hereditary in my family

i’m the only person of all my family

members i know who has it

epilepsy is defined as a disorder in

which the nerve cell activity in the

brain is disturbed

causing seizures

stress is a major trigger for seizures

for myself even standing here on the

stage today

is stressful

there are over 40 types of seizures some

of which

are life-threatening i myself

experienced six types of seizures

throughout my 23-year period of epilepsy

they included tonic-clonic randmill

nocturnal sleeping absence

complex partial and simple partial

seizures

as well as auras

i’ll explain a few of those types of

seizures

let’s start with the tonic clonic grand

mal seizures

the well-known shaking on the ground

type seizure

now let me clear a few misconceptions

about epilepsy

when someone’s having a seizure they’re

not being aggressive and violent

you don’t need to call the police to

intervene

when someone’s having a seizure they’re

not acting out

they’re not stoned they’re not drunk

they’re having a seizure

people aren’t leaning on this and making

it up

you need to trust that when someone’s

having

a seizure they’re actually

having a seizure

just to let you know it’s not cool

to pretend to have seizures if you don’t

have epilepsy yourself

please show some respect

for myself ninety percent of my tonic

chronic seizures came without warnings

no time to call an ambulance or push

buttons on a medical alarm

or strike blackouts

not feeling anything during these

seizures

then slowly coming conscious but having

lost my sense of feelings

for me it was a common incident to bite

my tongue during these seizures

waking with the taste of blood in my

mouth

i could see the blood

but i couldn’t feel the pain

it’s a bit like the experience of a

dentist numbing your mouth

this is what it was like immediately

after having these seizures

losing control of myself and not even

being able to speak properly

it was these feelings of helplessness

which caused a lot of anxiety shame

and fear

complex partial and absent seizures were

rather different

they were either blank steering

or fiddling activities

i will take you on the journey what it

was like to have these types of seizures

throughout my journey of motherhood

having up to four seizures every week

during pregnancy

i had a great fear of miscarrying my

child

every single time it happened

even the thought of having a seizure

while in labour giving birth

weighed on me

while that never happened i decided the

next day

while breastfeeding my precious newborn

son

lucky the nurses rescued my baby in

safety put him in a hospital

bassinet

i couldn’t bath my son alone i could

drop him and he would drown

i needed to attach his pram to my wrist

in case i had a seizure and he rolled

down the hill or on the road without me

i needed to catch taxis and buses

everywhere as you can’t

drive when you have seizures

i even came conscious from a few of my

seizures

with my toddler son right beside me

fear in his eyes

it was hard not to feel like a failure

as a parent or he witnessed

these experiences

so what is it like to have a seizure in

a situation

where you may die i had three near-death

experiences

one during a flying fox ride one during

surgery

and a seizure while swimming in a pool

when i was 13 i was at the public pools

of my family

i was doing what most other teenagers

were doing splashing around in the water

then it hit again no sooner did it

happen

where i felt my spirit

leave my physical body

i felt peace and tranquility as an angel

spirit

with pure white surroundings all around

and above me

even though i could clearly see everyone

down below watching the lifeguard pull

me out of the water and attempt

resuscitation

i felt someone behind me an angel spirit

urging me to go back down

as my time on earth was not yet finished

it didn’t take long before i rejoined my

physical body

and i coughed up water

i can’t remember much else about that

experience

except that i was in a trauma shock as

to what had just

happened

i will be forever grateful

for that quiet hero that lifesaver

who saved my life

after 23 years of ongoing seizures

trying many different medications

none of which had worked i come to this

point in life where

i couldn’t control i couldn’t handle

what was happening to me

i even asked a neurologist what more can

i do

and so this brain surgery path began

approximately six percent of the 16

million people with the epilepsy

qualify for this left temporal victory

brain surgery that was recommended

i ever needed to ask myself should i do

this

should i not

even though the success rate is between

60 to 70 percent

the surgery team still needed to explain

all the risks involved

loss of speech loss of vision

stroke paralysis

and even death

and why did i need to know these risks

they wanted to remove a third

of my brain

oh even just contemplating this thought

of surgery

overwhelmed me even to the extent that i

almost completely cancelled the surgery

but i pushed past these fears

i followed my heart not my head

and did it anyway

i arrived at the hospital

the medical team shaved off the left

side of my hair

and i was put to sleep

i solely became conscious in the

intensive care unit four hours later

according to medical research an average

person takes between four to

six weeks to recover from the surgery

through the power of faith prayers

and miracles i was discharged from

hospital

three days after and shopping the next

day

one week later no seizures

one month later

one year later

two years later

my last seizure was on the 6th of

january

2013 the day before the surgery

words cannot comprehend

how much gratitude i have

for myself taking the courage to undergo

the surgery

and for the skills and expertise of the

surgeons and medical team

who underwent this amazing intervention

faith precedes the miracle

now will i ever have another seizure

again

only time will tell

whether i have one or not

a haku

i will accept my limits continue to face

them with courage

and turn them into success

you