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