Health Basic: Personal Impact Paper

Growing up Epileptic

Growing up Epileptic
June of 1970, during a time where Neurologist did not really know much about Epilepsy,
is when I was born. Born to a mother who did not know how to handle a child that would cry
every time she would pick me up or move me in any way, do to having a seizure. How do people
deal with things or people that are different from what they know? In the same case, those that
are different from the majority, how do we grow up in a world where we are treated as outcast?
This is my story, a story of a girl who always felt like an outcast, and have used it to my
advantage.
As a child, my mother and I would drive to every couple of weeks to Seattle for routine
visits at Childrens Hospital. Whether it be for a scan or a simple test where I would have to
visualize something and describe what I saw. The only problem was, I did not know how to
visualize something without seeing a picture of it first. They would also blindfold me and have
me put pieces in a box with the same shape. However, I found a way to cheat at this, which lead
to me wanting to learn how to do things blindfolded or with my eyes closed. No matter what it
was, I spent a lot of my youth sitting in a Hospital waiting for the doctor to show or getting my
blood drawn for more test. (Always asking for the butterfly, it takes longer but the needle is a
quarter of an inch long compared to the really long one they would have used!)
Going to school was difficult, still is. Since I was two years old, I was on Phenobarbital,
Mysoline, or Tegretol. Though I took myself off my drugs when I was 13 going on 14, my body
and brain took some major hits. Personally, I have no idea how I got through school. Reading
was and still is a problem, granted it has gotten better but I still have problems retaining
information. When I was younger reading a mere paragraph over and over, say 14 times or so, I
still would not be able to tell you what it said. Now, I can read something and give you a brief

summary but not the details and within a day, the information may still be there but I have to
reread the information again in order to tell you what it was about. Going to the movies is a lot
like reading. If I do not see a movie at least twice I do not remember even seeing the darn thing
or what it was about without the visual stimulation of something from the movie.
Sometimes, I would be sitting in class and like a dream, something would hit me from the
grade before, and I would understand what it was the teacher was trying to say. However, the
year before, I would be sitting in class not grasping anything and break down into tears for lack
of understanding. (I wanted to understand and be like the other kids, where things came so much
easier to them.) It would be test day, I would make little sheets with information on them, but
nothing I ever wrote would seep into my brain or would be on the test. Academics seemed like
something so bizarre and ungraspable, yet art could be done without much frustration or
pressure.
One grandmother was an artist another was a dancer. My sister, two cousins, and I would
perform at my grandma the dancers tavern as a song and dance group.

No ridicules or

judgments made by peers or strangers, just approval of 5 adorable girls who shined on stage.
School and my home life where different stories. During the school hours, kids would call me
names or throw food at me during the lunch hour. On one occasion, a kid threw a smoke bomb at
me that made my shirt melt into a large hole. (Thank goodness, it did not burn my skin) Then
after school, my sister would also verbally abuse me but then she would add physical abuse as
well. While my mother would sing her praises and say to me daily: Why cant you be more like
your sister? Why would anyone want to be such an abusive individual, no matter what kind of
grades she got in school. How was I supposed to compare to someone else and be on massive
drugs? Still to this day, I do not understand where my mother was coming from.

While my sister would be out playing, my artistic grandmother taught me how to paint,
sew, fix things, and to think outside the box. She never saw what was going on between my
sister or mother, until much later in life, however she always treated me like a normal kid. To
me, I was always a normal kid who had minor limitations or setbacks. Nothing was truly off
limits to me (just what others would not let me explore or do).
When I was 13, my mother and I moved to Hawaii because my mother accidently burnt
our house down with a blow touch on a frozen pipe. (She bought a grocery store / fish market on
the Big Island) This was my chance to get away from my sister and everyone who knew about
me, and not be treated like a freak! (My sister refused to go until her junior year was over)
Slowly, I began to take myself off my drugs; it took me about 6 months to get off them. By the
time, my mom asked about needing more, I was done! Granted, I knew what would set me off
into a seizure and what would not, so I avoid those things that do. Two seems to be the magical
number for me. I can be spun twice while dancing but not three times. My brain does not
understand the movement, nor does it understand strobe light. If I start to feel displaced, I need
to get away from the situation and be quite. The more people talk to me the more I have to focus
on other things and it takes me longer to get snap out of it or I just cant control it and Ill go into
a seizure.
My seizures are between a petite mall and a grand mall. When I was a child, if I was
standing I would fall, if I was sitting, Id just fall back. None of my muscles would work, I could
not move, I could talk but nothing more. The world became dizzy and upside down. Sometimes
Id toss my cookies. It would take 20 minutes to an hour to take its course. These would happen
at least once a day. As an adult things are a bit different. Now I can walk, though I look like Im
drunk and all I want to do is get somewhere quite and curl up in a ball until it goes away.

Luckily, I dont throw up and the world doesnt go upside down, though the dizziness is still
there. I have always been able to feel it coming.
After a car accident back in 1992, I had about 3 to 4 seizures a day for a few months until
my neck healed. The doctors put me on the same drugs and dosage I was on when I was a kid,
and could not even function. It took me all day just to get to the bathroom (10 feet) and back. (I
didnt take another pill after that) Then a couple years ago, I was in another car accident and I
had a concussion and had my first (hopefully only) grand mall seizure. Grand mall seizures are
really scary. It started like a regular seizure and started to increase quite rapidly. I had idiotically
tried going back to work a week after the accident but it induced a seizure with the lights from
the screen. I told my boss I needed to sit down in his office and he said No. No was not an
answer I was going to take, I sat down and started feeling shaky, dizzy and if my hands where
going numb. I kept shaking my hands hoping it would liven them up. Then I tried lying down
because the dizziness was getting worse but that only made it stronger. Within moments of sitting
down, all this took plac,e and all I could say to him was to call 911. Id never felt such intensity
before, and before I knew it, I was on the floor. I awoke long enough to ask him to take my shoes
off before I woke up again with a paramedic over me and the again in the hospital. This off and
one blacking out lasted 6 hours!
People have often tried to get me to drink or do drugs. As an epileptic, one of the worst
things would be to drink or do drugs. Now if you had to endure seizures throughout your life, as
I have described, would you ever want to do something that could bring them on? I have never
understood why anyone would want to take drugs when someone like me had to take drugs on a
daily basis.

Most people do not seem to understand what Epilepsy is or what to do when someone has
a seizure. Epilepsy is a condition of the nervous system that affects 2.5 million Americans.
More than 180,000 people are diagnosed with epilepsy every year. (Website 1) Epilepsy is an
injury to the brain, it can happen inside the womb, during delivery, or from some type of head
trauma at any time. The brain is the most complicated organ in the human body. No matter what
it will respond in two ways. It will shut down either completely until it heals itself or it will
seize. Things that irritate the brain can cause neurons to fire erratically (Bazil 35) Doctors
seem to think the answer to Epileptic attacks is to use medications. Phenytoin was the next
major drug introduced after Phenobarbital. Its most common side effect is tiredness with
dizziness and unsteadiness that can occur at higher concentrations (Bazil 103) What Doctors
dont seem to understand is that with these drugs they give us dont just make us tired but make
us so out of it that were in a daze we cant snap out of. Drugs are not the answer. The brain is
an organ that will heal itself with enough time and sleep. Doctors have proven that they can take
half an Epileptics brain out and the neurotransmitters will reboot elsewhere within the brain.
The overall risk of severe complications from epilepsy surgery is approximately one percent.
The nature and severity of these complications depend on the type and extent of the surgical
procedure. (Weaver 88)
It used to be that if an epileptic had, had any seizure during 5 years or less they would not
be allowed to drive a car. Technically, since I have not been on meds since I was 13 my license
has never been an issue. However, legally they could have taken the privilege away from me
when I had the grand mall 2 years ago. These days the Epilepsy driving standards have changed.
You can apply or reapply for a category A, B, B+E, F, G, H, K, L or P license as long as: You
have been free from seizures completely for one year or have experienced asleep seizures only,

for a period of at least three years; and as far as your are able, you follow your doctors advice
about your treatment and check-ups for epilepsy; and the driving agency is satisfied that as a
driver you are not likely to be a source of danger to the public. (Website 2)
So how do we epileptics deal with the day-to-day struggles that many take for granted
and the pressures of life that others like to drown with medications or liquor. We have become
stronger people who deal with what comes our way. Become more understanding to those who
cannot do for themselves. Try to help and see things from a different perspective where those
with no so called human malfunctions have prevented them in doing whatever they wanted to do
when they wanted to do it. (Other than financial of course)
Many people come in and out of our lives, most only stay for a brief moment in time.
Usually these people come in our paths for a reason or they for us. The bullies find themselves
being bullied or their children receive the bulling and they finally understand what it is they did
and why it should never had been. As we get older we can become more wrapped up in our own
lives and forget to help out our fellow man. However, with the way I grew up it has made me
more responsible, understanding and compassionate to those around me.

So even though

Epilepsy made things a bit harder Ive turned it into a strength from within me that has kept me
from becoming an alcoholic, a drug abuser and a more sensitive person who understands that we
are all in need of love and compassion. I am proud to be an Epileptic and I make a heck of a
good designated driver.

Work Cited
Brazel, Carl W. Living Well With Epilepsy 2004
Weaver, Dr. Donald F. Epilepsy and Seizures 2001
Website 1: http://kidshealth.org/teen/diseases_conditions/brain_nervous/epilepsy.html
Website 2: http://www.epilepsy.org.uk/info/driving/agencies-licence-categories#standards