each of us here today has experienced a
hardship in our lives some seemingly
impossible thing to overcome maybe
you’ve lost a job a home a spouse or
even a child and this loss changes you
forever right
well from my experience of losing part
of Who I am I know how we react as a
choice and my choice is to not let my
disability define me it was March 6 1998
my freshman year of high school I’m at
the top of my game successful basketball
player on student council and find
myself riding in the back seat of a car
with four of my girlfriends and just a
short distance from home the driver
swerved and crashed into a tree the next
thing I remember is waking up in a
hospital room my parents standing by the
side of my bed thrilled that after seven
days in a coma I’m finally awake and
then they told me what had happened all
the other girls in the car were ok but I
had a traumatic brain injury I remember
immediately touching the top of my head
and feeling a clump of big brown spikes
standing straight up like needles on a
Christmas tree my mom handed me a mirror
and my worst highschool nightmare had
come true my hair was my stuff
my mom called me down and let me know
that the ER had to shave part of my head
in order to monitor the pressure in my
brain as a 14-year old I was super
bummed but also relieved that after what
they explained was such a serious
accident all that had changed was my
hair I had no idea what was brewing
inside during my TBI rehabilitation TBI
short for traumatic brain injury and
that with my speech pathologist she
asked me to sing twinkle twinkle little
star but I couldn’t think of the words
she held up a pen and asked me Meg
what’s this I stared bright blankly at
her my heart racing I knew what it was
but just couldn’t get the words out of
my mouth she pointed to a ten-piece
rainbow puzzle and asked me to put it
together and I couldn’t do it any of it
and I worked for days and weeks and
months and I fought hard to recover but
I quickly learned that it wasn’t just a
piece of hair that was missing I was
more damaged on the inside than on the
out something that’s always been
difficult for people to understand
I remember going in to get my physical
before basketball my sophomore year of
high school I was so ready to just get
right back in the game
but then the doctor broke the news no
more basketball Meg ever because of the
risk of another head injury you just
can’t I started crying I worked so hard
my whole life to play basketball and the
doctor placed his hand on mine and he
said you know what Meg you’re really
lucky to even be here if you saw what I
saw you would know that your chance of
survival was slim but you made it so
instead of basketball I ran with the
cross-country team instead of can’t I
tried to focus on can and I made it into
college and to my relief my high school
guidance counselor assured me that I
could receive
we’ve accommodations to help me with
some of my shortcomings that came as a
result of my TBI note-takers extra time
on tests separate testing area they all
sounded really helpful I told my college
academic advisor about these
accommodations sounds good he said
you’ll just tell each new professor
about your disability and then you can
head on over to the students with
disabilities office and that’s where
you’ll take all your tests students with
disabilities office was I disabled am i
disabled he looked up and he said well I
read here in your file Meg that you had
a TBI in 1998 says here that due to your
TV I you have trouble with short-term
memory recall multitasking sound right I
nodded my head yeah
well that’s your disability makes sense
I tried to hold back tears and just kept
nodding and that’s when it hit me
I was becoming more and more aware even
though I so wanted that TBI to go away
and stay behind me in high school it was
here to stay but so is my dream of
becoming a registered nurse I’d
volunteered at a camp for kids with
cancer in California and I got in a
taste of what it would be like as a
nurse and I just knew that if I became a
nurse I could make a difference in those
kids lives a career as a pediatric nurse
was my dream a letter came in the mail
when I got home from camp that year I
shook my hands that I opened it and my
dream had come true
I made it into nursing school and during
my second semester there I had a
presentation to give in front of class
my name was called and I walked to the
front of the auditorium a minute or so
passed by and things were going really
well
all of a sudden out of nowhere my heart
began to race like not out of
nervousness though but more like I was
running away from a train and just
couldn’t get away I kept trying to
swallow but my mouth was too dry I had
worked hard preparing for the
presentation but the words I was
planning to use just weren’t coming out
I tried to take some deep breaths
to relieve when I thought it was nerves
but I couldn’t even gather the air for
ten seconds I felt paralyzed and blankly
stared off unable to look away from the
left side of the room and all the while
my right arm was starting to raise in
the air and after what seemed like
forever I regained my composure and
finished my talk a nursing instructor
who saw me that day encouraged me to see
a neurologist I had a few more of those
panicky feelings before my appointment a
few weeks later and the doctor explained
to me that those blank staring spells I
was describing were actually complex
partial seizures and that since I had
already had more than two I had epilepsy
he said it so casually so may you have
epilepsy I had only heard about seizures
on TV didn’t know anyone else who had
epilepsy and had no idea that just a
ten-second staring spell could cause
such trauma but believe me it could I
was immediately put on a seizure
medication I’d never really been on a
daily medication before so it was kind
of tough to get used to at first I was
tired more often but attributed it to
nursing school between the long hours of
clinicals homework lack of sleep my
seizures continued I was constantly
thinking when am I gonna have my next
one Oh God who was gonna see it I had to
slow down my nursing and start three
additional seizure medications about 20
pills a day
their side-effects alone were may
school days more and more difficult but
I refuse to give up with my
accommodations and assistance from
amazing teachers I graduated became a
registered nurse and started my first
job in Pediatrics but instead of
carrying out my dream of taking care of
patients I was laying down in the break
room after a seizure dizzy exhausted
embarrassed I tried to look positive on
the outside but on the inside I was
losing my confidence my self-esteem it
was like my breaking point
I was hopeless I knew that I had to do
something about it and then my doctor
told me I had another option brain
surgery they would go in and remove the
part of my brain with a scar tissue from
my 1998 TBI and hopes that my seizures
would stop I did months of testing and
when I finally found out I was a
candidate they made the scary decision
to go forward with surgery if it meant
that I could have a chance at a better
life they removed my left temporal lobe
and hippocampus where the seizures
originated that surgery was and is the
most terrifying thing I’ve ever done but
my memory loss however was here to stay
I was excited to get back into nursing
and tried three jobs and pediatrics
but during each one I was confronted by
a supervisor they asked if I had trouble
remembering and said that patients and
fellow employees were noticing you just
can’t handle this meg they told me again
I was devastated this time I wasn’t just
telling college professors and private
about my disability this time I had to
tell employers and I lost all three of
those jobs due to the lasting effects of
my traumatic brain injury in epilepsy
and I found a lot of shame and
embarrassment and having a disability
but accepting that my nursing career
could be over was just more than I could
bear I knew that there had to be a way
that I could still use my knowledge my
experience and my passion to help others
and then I remember that experience I
had as a counselor at the camp for kids
with cancer in California it was there
where I saw the true value of bringing a
group of kids together who really
understood each other’s illness and it
inspired me to create a similar
experience for kids and teens with
epilepsy here in the Med in the Midwest
I named it camp you can so many times
throughout my life I’ve been reminded of
what I can’t do
no more basketball no more slumber
parties no more driving no longer able
to be a nurse no independence no
self-esteem kids and teens with epilepsy
feel that way too they know their
disorder isn’t just physical
the effects are mental and emotional as
well and I wanted to create a place
where kids with epilepsy could come to
see all that they can do at camp you can
kids can zoom across the zipline climb a
rock wall shoot
arrow walking by the cabins and standing
in the lunch line you’ll hear things
like yeah I take that medication too and
it makes me really tired or this is the
only chance I get to talk about my
epilepsy without feeling embarrassed –
with epilepsy – many days are filled
with reminders of what shouldn’t be done
and that camp you can we’re on a mission
to change that and now camp you can has
grown into the Midwest you can
foundation so that we can work not only
with kids but adults like myself with
epilepsy to combat our challenges
through empowerment celebrating all the
amazing things that we can do as well
you need to know that even here today
it’s been a struggle for me to say the
word disability in regard to myself but
I know that my disability does not
define me Firdous help me to create
connect and change other’s lives it is
because of my disability that camp you
can even exist from a fateful afternoon
car ride to a camp that can impact a
child’s life forever my own tragedy has
turned into a story of triumph for
others
am I not forgetting this talk is a story
of triumph for me [Applause]
hardship in our lives some seemingly
impossible thing to overcome maybe
you’ve lost a job a home a spouse or
even a child and this loss changes you
forever right
well from my experience of losing part
of Who I am I know how we react as a
choice and my choice is to not let my
disability define me it was March 6 1998
my freshman year of high school I’m at
the top of my game successful basketball
player on student council and find
myself riding in the back seat of a car
with four of my girlfriends and just a
short distance from home the driver
swerved and crashed into a tree the next
thing I remember is waking up in a
hospital room my parents standing by the
side of my bed thrilled that after seven
days in a coma I’m finally awake and
then they told me what had happened all
the other girls in the car were ok but I
had a traumatic brain injury I remember
immediately touching the top of my head
and feeling a clump of big brown spikes
standing straight up like needles on a
Christmas tree my mom handed me a mirror
and my worst highschool nightmare had
come true my hair was my stuff
my mom called me down and let me know
that the ER had to shave part of my head
in order to monitor the pressure in my
brain as a 14-year old I was super
bummed but also relieved that after what
they explained was such a serious
accident all that had changed was my
hair I had no idea what was brewing
inside during my TBI rehabilitation TBI
short for traumatic brain injury and
that with my speech pathologist she
asked me to sing twinkle twinkle little
star but I couldn’t think of the words
she held up a pen and asked me Meg
what’s this I stared bright blankly at
her my heart racing I knew what it was
but just couldn’t get the words out of
my mouth she pointed to a ten-piece
rainbow puzzle and asked me to put it
together and I couldn’t do it any of it
and I worked for days and weeks and
months and I fought hard to recover but
I quickly learned that it wasn’t just a
piece of hair that was missing I was
more damaged on the inside than on the
out something that’s always been
difficult for people to understand
I remember going in to get my physical
before basketball my sophomore year of
high school I was so ready to just get
right back in the game
but then the doctor broke the news no
more basketball Meg ever because of the
risk of another head injury you just
can’t I started crying I worked so hard
my whole life to play basketball and the
doctor placed his hand on mine and he
said you know what Meg you’re really
lucky to even be here if you saw what I
saw you would know that your chance of
survival was slim but you made it so
instead of basketball I ran with the
cross-country team instead of can’t I
tried to focus on can and I made it into
college and to my relief my high school
guidance counselor assured me that I
could receive
we’ve accommodations to help me with
some of my shortcomings that came as a
result of my TBI note-takers extra time
on tests separate testing area they all
sounded really helpful I told my college
academic advisor about these
accommodations sounds good he said
you’ll just tell each new professor
about your disability and then you can
head on over to the students with
disabilities office and that’s where
you’ll take all your tests students with
disabilities office was I disabled am i
disabled he looked up and he said well I
read here in your file Meg that you had
a TBI in 1998 says here that due to your
TV I you have trouble with short-term
memory recall multitasking sound right I
nodded my head yeah
well that’s your disability makes sense
I tried to hold back tears and just kept
nodding and that’s when it hit me
I was becoming more and more aware even
though I so wanted that TBI to go away
and stay behind me in high school it was
here to stay but so is my dream of
becoming a registered nurse I’d
volunteered at a camp for kids with
cancer in California and I got in a
taste of what it would be like as a
nurse and I just knew that if I became a
nurse I could make a difference in those
kids lives a career as a pediatric nurse
was my dream a letter came in the mail
when I got home from camp that year I
shook my hands that I opened it and my
dream had come true
I made it into nursing school and during
my second semester there I had a
presentation to give in front of class
my name was called and I walked to the
front of the auditorium a minute or so
passed by and things were going really
well
all of a sudden out of nowhere my heart
began to race like not out of
nervousness though but more like I was
running away from a train and just
couldn’t get away I kept trying to
swallow but my mouth was too dry I had
worked hard preparing for the
presentation but the words I was
planning to use just weren’t coming out
I tried to take some deep breaths
to relieve when I thought it was nerves
but I couldn’t even gather the air for
ten seconds I felt paralyzed and blankly
stared off unable to look away from the
left side of the room and all the while
my right arm was starting to raise in
the air and after what seemed like
forever I regained my composure and
finished my talk a nursing instructor
who saw me that day encouraged me to see
a neurologist I had a few more of those
panicky feelings before my appointment a
few weeks later and the doctor explained
to me that those blank staring spells I
was describing were actually complex
partial seizures and that since I had
already had more than two I had epilepsy
he said it so casually so may you have
epilepsy I had only heard about seizures
on TV didn’t know anyone else who had
epilepsy and had no idea that just a
ten-second staring spell could cause
such trauma but believe me it could I
was immediately put on a seizure
medication I’d never really been on a
daily medication before so it was kind
of tough to get used to at first I was
tired more often but attributed it to
nursing school between the long hours of
clinicals homework lack of sleep my
seizures continued I was constantly
thinking when am I gonna have my next
one Oh God who was gonna see it I had to
slow down my nursing and start three
additional seizure medications about 20
pills a day
their side-effects alone were may
school days more and more difficult but
I refuse to give up with my
accommodations and assistance from
amazing teachers I graduated became a
registered nurse and started my first
job in Pediatrics but instead of
carrying out my dream of taking care of
patients I was laying down in the break
room after a seizure dizzy exhausted
embarrassed I tried to look positive on
the outside but on the inside I was
losing my confidence my self-esteem it
was like my breaking point
I was hopeless I knew that I had to do
something about it and then my doctor
told me I had another option brain
surgery they would go in and remove the
part of my brain with a scar tissue from
my 1998 TBI and hopes that my seizures
would stop I did months of testing and
when I finally found out I was a
candidate they made the scary decision
to go forward with surgery if it meant
that I could have a chance at a better
life they removed my left temporal lobe
and hippocampus where the seizures
originated that surgery was and is the
most terrifying thing I’ve ever done but
my memory loss however was here to stay
I was excited to get back into nursing
and tried three jobs and pediatrics
but during each one I was confronted by
a supervisor they asked if I had trouble
remembering and said that patients and
fellow employees were noticing you just
can’t handle this meg they told me again
I was devastated this time I wasn’t just
telling college professors and private
about my disability this time I had to
tell employers and I lost all three of
those jobs due to the lasting effects of
my traumatic brain injury in epilepsy
and I found a lot of shame and
embarrassment and having a disability
but accepting that my nursing career
could be over was just more than I could
bear I knew that there had to be a way
that I could still use my knowledge my
experience and my passion to help others
and then I remember that experience I
had as a counselor at the camp for kids
with cancer in California it was there
where I saw the true value of bringing a
group of kids together who really
understood each other’s illness and it
inspired me to create a similar
experience for kids and teens with
epilepsy here in the Med in the Midwest
I named it camp you can so many times
throughout my life I’ve been reminded of
what I can’t do
no more basketball no more slumber
parties no more driving no longer able
to be a nurse no independence no
self-esteem kids and teens with epilepsy
feel that way too they know their
disorder isn’t just physical
the effects are mental and emotional as
well and I wanted to create a place
where kids with epilepsy could come to
see all that they can do at camp you can
kids can zoom across the zipline climb a
rock wall shoot
arrow walking by the cabins and standing
in the lunch line you’ll hear things
like yeah I take that medication too and
it makes me really tired or this is the
only chance I get to talk about my
epilepsy without feeling embarrassed –
with epilepsy – many days are filled
with reminders of what shouldn’t be done
and that camp you can we’re on a mission
to change that and now camp you can has
grown into the Midwest you can
foundation so that we can work not only
with kids but adults like myself with
epilepsy to combat our challenges
through empowerment celebrating all the
amazing things that we can do as well
you need to know that even here today
it’s been a struggle for me to say the
word disability in regard to myself but
I know that my disability does not
define me Firdous help me to create
connect and change other’s lives it is
because of my disability that camp you
can even exist from a fateful afternoon
car ride to a camp that can impact a
child’s life forever my own tragedy has
turned into a story of triumph for
others
am I not forgetting this talk is a story
of triumph for me [Applause]
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