Living
with Epilepsy as a Child and as an
Adult
Chapter One: Beginnings
Chapter Two: The Awful High
School Years
Chapter Three: Are These
Seizures?
Chapter Four: Seizures Again
Chapter Five: Living With
Epilepsy Part II
Chapter Six: Future Concerns
Chapter Seven: Epilogue
Chapter One:
Beginnings
The Shower Incident
I have epilepsy, an incurable disorder of the
central nervous system. Though I was diagnosed at the age of 11,
and my seizures were well controlled with medication, I sometimes have
a difficult time dealing with my condition.
My life changed on a hot and humid day in June of
1990. I was 20 years old and worked second shift at Oscar Mayer
Foods in Madison, Wisconsin. Because my father had worked there
for over 25 years, I easily gained employment as a summer temp between
academic years in college. Working on an assembly line in a cold
meat plant taught me that I wanted to finish college and have a better
job for the rest of my life. That summer, I lived in an apartment
with my fiancé, Brian, and another male roommate. On this
particular day, I prepared for work as usual by taking a shower.
Who doesn’t love a nice hot shower? The steam
clears my sinuses and pores while the water soothes my body. I
love hot showers, although I kept the door closed because of our
roommate.
Suddenly I felt dizzy and the lighting
changed. The room became darker, then a little lighter though not
as bright as it was originally; then darker more, a little lighter,
darker still. I knew these scary sensations. Even though I
had been seizure-free for over nine years, I remembered that my auras
felt like this. I still had an occasional aura, which is
considered a mild seizure by itself, but I could always ward off a more
severe seizure by putting my head between my knees or going some place
cool.
Some place cool; outside the bathroom. I
had to go outside the bathroom because I was determined not to have a
seizure. Going out of the hot and humid bathroom into the cooler
living room would help. Immediately I opened the shower curtain
and wrapped a towel around me. I was so dizzy I felt like I was
walking through a dream as I staggered around the bathroom.
Opening the door I shouted, “Brian!” He arrived as I started to
fall.
I was so dizzy, but I wasn’t going to have a
seizure. I’d been seizure-free for nine years, and I wasn’t going
to ruin that record now. My eyes were closed, and I felt like
throwing up, but I swallowed hard to prevent any emesis. I warded
off the full-blown seizure. When I opened my eyes, Brian was
holding me as he sat on the floor of the hallway.
“I heard you yell, then I saw you fall when I came
out of the kitchen.” He said. Concern for me showed in his
Zen mood eyes that change color on whim. Brian is 6' tall with
dark hair and full beard and mustache. His long torso is
accentuated by his large belly. When we first met, I told
him about my epilepsy and what to do in case I have a seizure. As
I sat in his arms, Brian said, “I panicked, but I remembered everything
you taught me. There really wasn’t any time for me to do
anything. Didn’t you tell me that your seizures lasted quite a
while?”
“Yes, at least a couple of minutes.”
“You weren’t out very long; was it a
seizure? You didn’t throw up or wet yourself, and you were
unconscious for less than thirty seconds.”
“That’s not the methodology of my seizures.” I
felt so confidant that seizures were a part of my past that I didn’t
even wear my Medic
Alert© bracelet anymore.
“Maybe you passed out because of the heat of the
shower.” Brian said.
I agreed with him. Since then I have
always showered with the door open.
The Last Appointment with Dr. Edelman
Later that summer, I had my last appointment with
the neurologist I had been seeing since my original diagnosis at the
age of eleven. Dr. Edelman looked like Groucho Marx, except my
neurologist had strawberry blond hair and moustache rather than the
late actor’s black hair. Dr. Edelman gave me a routine
neurological exam. He took a tuning fork and struck it, then he
put the fork near my ear and asked me, “Can you hear this?”
“Yes.”
He put the fork on my hand. “Can you feel this
buzzing?”
“Yes.”
He dimmed the lights and looked in my eyes with one
of those little scopes with a small light on it. “Good,
good,” he said of my eye reactions. He turned the lights
back up and spread his arms so his fingers were in my peripheral
vision. “Can you see my fingers?”
I could.
“Slap your hand back and forth.” He
said. So I slapped one of my hands against the other flipping the
slapping hand between back and palm.
“Walk in a straight line: first heel to toe,
then on your heels, then on your toes. I demonstrated my good
walking ability.
“Everything looks fine.” Dr. Edelman said.
“Unless you have any problems, you don’t need to see me anymore.”
I didn’t tell him about the shower incident because
I let myself believe it wasn’t a problem. I found out later that
I was wrong.
My First Seizure
My earliest memory of having a seizure occurred when
I was about ten years old. My parents had purchased a beautiful
blue bicycle for me, and I rode it all over the neighborhood. The
freedom of being able to go where I wanted, when I wanted–as long as it
wasn’t past nightfall–was exhilarating. I loved the wind blowing
through my long, brown hair; I loved riding my bicycle.
One summer afternoon I was riding my bike home when
I started feeling very dizzy. Although it was a bright day, the
light seemed to dim. I became very frightened, and I looked
behind me. I didn’t see the gravel driveway of my neighbor’s
house ahead when I skidded and lost consciousness.
When I awoke, I was shaking. My shorts were
wet, and my chest felt painful where my handlebar almost impaled
me. Because the bicycle had no grips, the raw metal left a
circular and striped scar that looked like a comet on my chest. I
had to pluck gravel out of my legs and hands. I felt miserable as
I walked my bike home.
I never told my parents about wiping out on my bike
because I didn’t know how to explain what had happened. I have
always been a clumsy person, and this was just one of many accidents
that occurred in my childhood even though the dizziness was
different. I cleaned myself up in the bathroom, put my soiled
clothes in the laundry, and took a nap because I was so tired.
The Seizure in Church
My last childhood seizure occurred on the first day
of February 1981, as my father and I sat in the front row at
mass. Because our parish had outgrown the old church building,
mass was being held in the school’s gymnasium until our new church
would be built two years later. During the Gospel part of the
Mass, when the congregation was expected to stand, I felt dizzy, like I
was going to pass out. I had just recovered from the flu earlier
that week, so I thought that might have something to do with how I
felt. Then the room became darker, then a little lighter, darker
still...
When it was finally time for the priest’s sermon,
and the congregation was allowed to sit on the metal folding chairs, I
expressed my ill feelings to my father.
“Poppy, I don’t feel so good.”
“Just rest your head on me,” my father said as
he patted his arm, so I placed my head there. Poppy has always
been a caring soul. He has the physical appearance of Homer
Simpson and the heart and faith of Clarence, the angel from It’s A Wonderful Life. I was
a “daddy’s girl.”
When I put my head on my father’s arm, I lost
consciousness. My father and Ron Shaw, another member of our
parish who was seated in the row behind us, carried me out of church,
took me to an office in the parish school, and placed me on top of the
desk. When I gained consciousness, they told me I fainted.
I felt that my shirt and pants were wet. While I was
unconsciousness, I peed my pants and vomited. The tell-tale signs
were on the brown corduroy pants and plaid shirt I wore that day.
I was a mess. Mum was called from home to come pick me up.
Mr. Shaw was a tall and strong man, an active parish
member, and employed by the Madison Fire Department. Part of his
job was staffing ambulances before professional paramedics were
required, but he still had some emergency medical training. He
told my father, “Fritz, to throw up and then faint is normal; to
faint and then throw up while unconscious is not normal. You
better have her checked out.”
When Mum arrived, she asked me “Do you want to go to
the emergency room?”
“We probably should have me checked out as Mr. Shaw
suggested, Mum.” So she took me to the hospital. The real
reason why I wanted to go to the hospital was because I didn’t want to
go back home and do my chores.
In the ER I started to regret my decision because I
was very uncomfortable on the examining table. The condition of
my shirt and pants added to my misery. Mum tried to comfort
me, “It’s not going to be much longer.” She’s a cross
between Donna Reed and Margaret Thatcher; homey, but
feisty. At the time her hair was black and in the same short,
curly style she has always worn. Mum wore a lot of polyester
because of the fabric’s durability, and that day she had on navy pants
and a matching blouse. Mum cared so much for us kids that she
usually wore her clothes long after their durability wore out.
We were in the ER for a long time, and the staff
wondered why Mum had brought me in. After all, I’d only fainted
and everybody faints at least once in a lifetime, especially
kids. Finally Mum called Mr. Shaw.
“Ron, this is Mary Hewuse. Thank you for
helping us with Lori. We took your suggestion, and I’m with Lori
at the emergency room, but the ER attendants don’t understand why you
recommended I bring her here.”
“Well, Lori threw up while she was unconscious,
which isn’t normal.”
“Fritz forgot to tell me that. Thanks again,
Ron.”
When Mum mentioned this to the emergency room staff,
they became very serious about me. Mum was instructed to take me
to my pediatrician, Dr. Weatherhogg. We made an appointment with
him later that week
Diagnosis and Prognosis
Dr. Weatherhogg in turn sent us to a
specialist: a neurologist named Dr. Frederick Stuart
Edelman. Dr. Edelman gave me a routine neurological exam.
Then he scheduled me for a sleep-deprived electroencephalograph (EEG).
An eleven-year-old usually has to go to bed by 9:00,
but I had to stay awake the entire night before my EEG, which was hard,
but really fun. I discovered that one of the cable stations we
received aired reruns of Get Smart!, a show I liked, at 4:00 in the
morning. The EEG itself was both scary and fascinating. A
technician used a special glue that was cold to the touch to attach
eighteen electrodes to my head, most on the top of my skull, two on my
forehead, and two at my wrist, presumably to take my pulse. Then
I had to look at a strobe light while it flashed anywhere from three
times per second to thirty times per second, which gave me a small
headache. I later learned that strobe lights induce seizures in
people with epilepsy. Then I slept for the half-hour exam, which
was easy to do after staying up all night. The only bad part was
trying to remove all the glue from my hair. My hair is long and
brown and I have enough to cover the heads of three average
people. Some say that I was given all the hair my father doesn’t
have. It would be at least a week before all the glue was finally
gone from my hair.
In late February of 1981, seated in his small
office, Dr. Edelman informed my mother and me that I have a seizure
disorder, “Specifically generalized seizures.” he said as he looked
over the results of the EEG. The stack of paper that showed my
brain-waves during the exam was about three inches thick and twice the
size of a hardcover book. He showed us a specific spike that
looked like the silhouette of a steak knife; it went up perfectly
straight on one side, then came down the other side in a curve.
“This spike indicates a seizure. The room becoming darker and
lighter was an aura. I’m going to prescribe an anti-epileptic
medication called phenobarbital for Lori. She’ll have to take it
at least until she’s sixteen or maybe for the rest of her life.”
Living With Epilepsy, Part I
Phenobarbital was hideous. The day after I
started taking phenobarbital, I was in school and feeling awful.
I went through the first two class periods, but knew I wouldn’t make it
through the third. I finally talked to my teacher, Mrs.
Redstein. She was a middle-aged woman with short blond hair in
the same style as my mom. Go figure, my teacher was also a mom
and had a daughter my age. Unlike my mom, Mrs. Redstein was rail
thin, and always wore sweater-vests to keep warm during Wisconsin
winters.
“Mrs. Redstein, I don’t feel so good.”
A classmate named Julie already was there talking
with our teacher. “Lor,” which is what she always called me,
“You’ve looked bad all morning.”
Mrs. Redstein had been a teacher for many years and
was seasoned enough to know when a kid was really ill or faking
it. With Julie backing me up, our teacher knew I was ill, so she
sent me to the school’s office.
The receptionist called my mother. Mum was at
work, and like most working mothers, couldn’t afford to take a day
off. The receptionist said it was okay for me to stay at school
on the cot where ill children rested.
Periodically throughout the day, Mum called to check
on me. I slept the entire day on that cot which was located in a
classroom converted into a faculty lounge. During the lunch hour
some of the teachers complained about my loud snoring. Other than
that, I was fine.
I took my medicine at 6:00 am and 6:00 pm, but
phenobarbital made me sleep for an entire week. One evening I was
at Julie’s house to work together on a school project on India and
spend the night. As usual, I took my medicine at 6:00 pm.
By 6:30, I was asleep and didn’t wake up until 10:30 the next
morning. I hated phenobarbital.
Then my mother, in her wonderful wisdom, made me
fight the drowsiness.
“Lori, you have to stop sleeping all the time.
You cannot take naps; you will be in bed by 9:00 pm every
night. You will be out of bed by 7:00 in the morning.”
Despite my best efforts, sometimes I would fall
asleep at school, especially during religion class (I attended a
parochial school). My classmates knew about my seizures and that
my medicine made me fall asleep. Julie testified about my night
at her house. The girls in my class were especially
helpful. Whoever was sitting next to me would just elbow me and
tell me to wake up.
My family and I were open and up front from the
start about my epilepsy. I believe my classmates rallied around
me and were wonderfully supportive because we didn’t hide my condition.
I have never hidden my epilepsy. After my
diagnosis, my mother took me to the Epilepsy Center South Central (now
called Epilepsy Foundation of South Central Wisconsin), our local
affiliate of the Epilepsy Foundation. The Foundation was
instrumental in helping me, my family, my friends, my classmates, my
teachers, my Girl Scout leaders, troop members and anyone else around
me learn more about epilepsy and what to do in case I have a
seizure. Throughout all the epilepsy literature I read, one theme
became clear: communication was essential. Toward that end,
I became an advocate for people with epilepsy before I even knew what
an advocate was. I always told those around me about my condition
even during my awful teenage years in high school. I believed
that being open and unafraid about my epilepsy would help to educate
others and make them less afraid. Much to my mother’s dismay, I
even corrected a missionary priest who visited our parish one
Sunday. He talked about a key figure in the history of his
mission who was “subject to epileptic fits.” I never saw my
mother’s rolling eyes when after mass I assertively told the missionary
the proper word is “seizures.”
The Epilepsy Foundation
I was in sixth grade when I was diagnosed with a
seizure disorder. The following year, my school invited a
representative from the Epilepsy
Foundation to speak to the junior high students. I kept
pumping him with questions until I finally asked, “So anyone who has
repeated seizures has epilepsy?”
“Yes.” he said concisely.
Twenty-four pairs of eyes turned and looked at
me. I was seated in the back of the room. The speaker said,
“Why do you ask?”
“Well, then I have epilepsy.”
That evening when Mum came home from work, I proudly
told her, “Guess what, Mum? I have epilepsy!”
“I know that, Lori.” she said.
“But you’ve always said that I have a seizure
disorder.”
“I didn’t want to use the word epilepsy around you
because most people don’t understand epilepsy. People with
epilepsy aren’t always treated well.”
Me, I’ve never been afraid of the word
epilepsy. Nor have I ever been embarrassed about my
epilepsy/seizure disorder. The day after the Epilepsy Foundation
spoke at my school, one boy from another class tried to tease me about
my seizures. His red hair was wild and as taunting as his words,
“How many seizures do you have a day? Thousands?”
I kept a steady gaze on him; I didn’t avert my
eyes. I stood tall and straight, not deflated or defeated.
“You’re trying to tease me about that?” I said. “Couldn’t you
think of something more original?” I made it clear that I was not
embarrassed about my epilepsy, and that I refused to feel bad at all
about having seizures. The boy stopped teasing me, and no one
ever tried to tease me again.
The Science Fair
In eighth grade, I entered my school’s annual
science fair. Yes, my topic was epilepsy. All students were
given one sheet of carbon paper to use as we wanted. I chose to
use mine for a questionnaire asking people what they knew about
epilepsy and what to do if someone has a seizure. I was
frightened by the fact that in all the junior high, amongst the
students and the teachers, only one person knew the correct
answers: a student teacher who wasn’t even at my school when the
Epilepsy Foundation sent someone the year previous. After this
warning, I quizzed those around me periodically to insure they knew
what to do if I had a seizure, just in case...
Chapter Two:
The Awful High School Years
The Choir Director
My high school years were an awful period of my
life. The teen years are complicated with many problems:
hormones raging, emotions swinging like pendulums, parents, classmates,
relationships, etc. I was from a working-class family and going
to a private high school. Many of my classmates thought
themselves superior to me because they had checkbooks, charge cards,
and trust funds provided to them by their daddies. My father
worked hard in a meat factory to provide for us. My mother worked
full-time as a bookkeeper and sometimes part-time in retail so my
siblings and I could have a parochial education. I hated most of
my classmates; they were snobbish and pretentious. If God
wants to put me in hell, all God has to do is put me back in high
school.
My epilepsy didn’t pose many special problems in
high school mainly because of my positive attitude. I still told
people about my condition. I would wait about a week or two until
they started to know me a little bit, then I would give them my “Oh, by
the way...” speech. I remember the day I told my best friend
Betsy:
“Oh, by the way, Betsy, I have epilepsy. It’s
a disorder of the central nervous system; you know, the brain and
the spinal chord? Well, some of my neurons, or brain cells, are
damaged. (Here I would hold out my arm with my fingers spread)
Neurons send bioelectric energy from one cell to another via the
dendrites (move one finger down the outstretched arm then wiggle my
other hand’s fingers as an example of dendrites) and across the
synapse, the tiny space between neurons. When these cells are
damaged, they can’t get rid of the energy in a normal way. So
they have to get rid of the energy in an abnormal way–through a
seizure.” Then I would go on to explain what happens during my
seizures and what to do if I had one.
“I know about epilepsy, Lori.” Betsy was
skinny with hair that is usually blond, but from time to time she
changed it to auburn or light brown. She can’t remember what her
original hair color was because she’s been dying it since she was in
middle school. I’ve never known her true hair color. “I’m
going to be a nurse. I used to bandage my teddy bears when I was
a little girl.”
I had formed the habit of quizzing my friends and
classmates about what to do if I had a seizure. One classmate in
particular was very sharp; every time I quizzed her she knew what
to do. She sat next to me in the freshman choir, and I was
grateful to her because of certain problems that arose.
Because of my condition, I insisted on being on the
end of the risers in choir. I explained to my choir director that
because of the breathing exercises we did, I would sometimes become
lightheaded and dizzy. Also, if a problem occurred during a
performance, I could easily walk off the risers and not disrupt the
rest of the choir.
The director reluctantly complied; however, he
still tried to discourage me from walking off the risers by placing me
on the end of the highest riser. Every time I became dizzy and
walked off, he would be upset with me. Finally, he called in my
mother. The three of us talked about the situation in his
office. Mum defended me, “Lori has epilepsy and sometimes needs
to walk off the risers to avoid having a seizure.”
“But she disrupts my performances!” the choir
director said.
“Don’t you think having a seizure during your
performance would be more disruptive?” Mom asked.
The choir director had no choice but to deal with
the disruptions during his performances. Mum knew he was a
perfectionist and not a well-liked person.
The Worst Year of My Life
Sophomore year was the worst year of my life.
Sophomores at my high school had the worst and most preordained
schedule: World History (my worst subject), Biology, Geometry (I
was in the honors math program), etc. The sophomore English class
had a lot of Middle English works in it such as The Canterbury Tales
and was also very hard. I’m not fond of Middle English because it
is so hard to translate, particularly Chaucer.
I was also very involved in extra-curricular
activities: Outdoor Club, Spirit Club, Chess Club, Girl Scouts,
etc. despite the fact that homework consumed a large portion of my
time. To compensate for the late-night study sessions, I began to
take caffeine pills. When my biology teacher found out about
this, he was very worried.
“The combination of caffeine pills and phenobarbital
is like telling your body to go in two different directions.” He told
me, “Caffeine is an upper; phenobarbital, a member of the
barbiturate family of drugs, is a downer. This is not a good
combination.”
He and another teacher convinced me to stop taking
the pills, which I finally did during finals week that year. I
took massive amounts of caffeine in pills and sodas while studying for
the World History final. With that help and the help of a tutor
who was majoring in History at the University of Wisconsin-Madison, I
scored high on the final and passed the course–barely.
One day after school during the spring semester of
my sophomore year, I was sitting in the school’s cafeteria waiting for
the weekly bingo fundraiser to begin. Mum was there to volunteer,
and she bought supper for me at the concession stand. “Are you sure you
want soda with caffeine in it?” Mum said, as she paid the bill.
I nodded my head that I was sure; I had
another marathon night of studying to do.
Without any warning or aura, I fainted while I was
eating my dinner. Boom! I hit my head on the table as I
fell. When I awoke, Mum was gently feeling the lump on my
forehead, and because of this lump, she rushed me to the emergency
room. All of the doctors I saw there determined that I just
fainted; it wasn’t a seizure. I even went to see Dr.
Edelman later that week, and because there was no aura, emesis, or
incontinence, he also determined it was not a seizure.
The incident didn’t scare me off of bingo.
Later that year I won $35, and I used the money to buy my first Medic
Alert© bracelet.
The Driver’s License Fiasco
When I was diagnosed with epilepsy, I was informed
that I could still do anything, that I would still be able to achieve
my dreams and goals. My parents raised me with that attitude even
before my diagnosis. No one ever told me that I couldn’t do
something because I have epilepsy, until I applied for a learner’s
permit for a driver’s license shortly before my sixteenth birthday.
In 1985, I took driver’s education and a typing
course during summer school. One of my high school teachers
advised taking typing for all the papers I’d have to write in
college. When my driver’s ed. class was ready to take the written
test, which we had to pass before we could be issued a learner’s permit
and start taking behind the wheel lessons, an examiner from the
Division of Motor Vehicles (DMV) came to my school to administer the
written exam. He was young and tall, but very serious about his
job. His blue DMV uniform was spotless and neatly pressed.
I thought I was ready. I had the license
application signed by my father and notarized by my notary public
mother. I had a copy of my birth certificate. I had
the application fee. I didn’t realize I needed one more item.
The examiner set up a machine to check vision, then
he asked “Have any of you checked yes on any of the questions on the
back of the application other than the question regarding vision?”
The fifth question read, ‘Have you had epilepsy in
the last five years?’ I thought this was a rather stupid way to
phrase the question because epilepsy isn’t curable, so I had to check
yes on the question. I raised my hand, and the examiner looked at
my form.
“Do you have a medical questionnaire completed and
approved for me?”
I had no clue what he was talking about, and it must
have shown on my face.
“Apparently not,” he said, “Please have a seat in
the corner while I administer the test to everyone else.”
I was shocked. For the first time in my life
somebody told me I couldn’t do something just because I have epilepsy.
After my classmates started taking the test, the
examiner gave me a copy of the medical questionnaire I needed approved
before I could even take the exam. I sat in the corner, crying,
and completed as much of the form as I could. Then I thought to
myself, This is ridiculous for me to sit there trying to keep my
tears quiet while the rest of the class is occupied with something I’m
being forbidden from doing. So I left the classroom, and wisely
neither the teacher nor the examiner tried to stop me.
That afternoon, my father and I took the form to Dr.
Edelman to have him complete the rest of the form. Then we went
to the Division of Motor Vehicles to have the questionnaire approved.
They didn’t approve it.
In 1985, Wisconsin laws regarding drivers with
epilepsy were, in my opinion, harsh and ridiculous. While I had
to admit that special regulations were needed for drivers with
epilepsy, the words the DMV chose for the license application proved to
me just how little those who made the laws knew about epilepsy. A
person with epilepsy had to be seizure-free for six months to obtain a
driver’s license. If a driver was seizure-free for more than six
months but less than two years, the driver could possibly obtain a
license with restrictions. More than two years seizure-free and
the driver could possibly obtain a restriction-free license, provided
those in the medical review office approved the application. The
reasoning behind this was the longer one went seizure-free, the better
one’s chances of not having another seizure. This is true, but
epilepsy still isn’t curable.
Because I fainted once within the last six months–at
Bingo–the DMV was not going to give me my learner’s permit. The
exact wording of the law didn’t use the word seizure; it used the
word ‘episode,’ which I again interpreted as the DMV’s lack of
knowledge about seizure disorders. The DMV called my fainting
spell an ‘episode’ even though it wasn’t a seizure.
“What do you mean you’re not approving my
application?” I said.
“I’m sorry,” the woman at the DMV replied, “but the Medical Review
Office said you had an episode within the last six months and are
denying your license.”
“That’s rather discriminatory; what if I had
just fainted due to a change in blood pressure?” the volume of my voice
raised. “That can happen to anyone, not just people with
epilepsy. The doctors at the emergency room didn’t consider my
faint a seizure, and neither did my neurologist. Why not the
Medical Review?”
“You had an episode in the last six months.
The law which governs drivers with conditions, Trans 108, clearly
states that anyone having an episode in the last six months cannot
obtain a license.”
“Show me that law.”
The DMV employee went to a cupboard on the far wall
behind her and retrieved a half-sheet of paper. At the top of the
sheet were the words, “Trans 108.” The law pertained not only to
people with epilepsy, but heart conditions and DWI convictions as
well. I was furious to be compared to people who drink and drive.
“I did not have an episode, nor did I have a
seizure, a heart attack, or a bout of drunken driving. This law
discriminates against me!”
To this day I wish I could apologize to the woman
who told me my application was denied; I was very rude to her and
she was only doing her job. Because I was so insistent, she
finally went to talk to her supervisor.
“Medical Review would like more information about
this ‘episode’ from both you and your neurologist.” the supervisor
explained. So, my father and I returned to Dr. Edelman’s office.
Dr. Ed. had gone to play golf, but his nurse was
able to provide the required information based on his notes in my
chart. When Poppy and I were back in the car, I asked him if we
could go back to the DMV and try again.
“Of course, Sweetheart.” he said. Poppy knew
how important this was to me.
This time the DMV approved my
application–conditionally. I finally was able to take the written
exam. I passed with only one error: when checking the rear
of the vehicle, the driver should look over the right shoulder, not the
left. I don’t live or drive in England.
When I finally received my learner’s permit, I
realized even more how ridiculous the law was regarding people with
epilepsy. The restriction put on my permit said that I couldn’t
drive outside a twenty-five mile radius of my home. The “logic”
behind this regulation was that fatigue is a known trigger for
seizures; the longer I drive, the more tired I could
become; therefore, I shouldn’t drive long distances so I don’t
become tired and thus can avoid having a seizure. The flaw in
this logic, however, was the fact that not everyone’s seizures are
precipitated by fatigue, and drivers can always stop and rest.
Besides, fatigue was not a trigger for my seizures. Another piece
of proof that the DMV knew very little about seizures and epilepsy.
Being a teenager with average grades and a
restriction on my license meant my auto insurance rates would have been
astronomical. My parents and I talked it over. Madison has
a great public transit system, and I didn’t have a car of my own to
drive (my brother Tom had totaled the family’s “kids’ car” the year
before). I really didn’t need a driver’s license.
“Can I go off this Stuff?”
The first day of my senior year of high school was
also my seventeenth birthday. My then boyfriend drove me to Dr.
Edelman’s office for my semi-annual check-up. My mother no longer
accompanied me to the doctor’s office because I was mature and
responsible enough to go without her. I knew what to expect, and
I knew what to do. I said to Dr. Ed., “You told me that I would
be taking phenobarbital until I was sixteen or for the rest of my
life. Today is my seventeenth birthday. Can I go off this
stuff?”
Dr. Edelman subjected me to another EEG. The
test was normal; no generalized seizure spikes. For the
next several weeks I titrated–or gradually reduced the medication-I
took one less pill, of three, every two weeks until I finally took my
last dose of phenobarbital on October 16, 1986.
On October 17, 1987, while I was a freshman at the
University of Wisconsin-Platteville, my mother sent me a card in which
she had written, “Congratulations on one year seizure- and
medication-free.” We were both very proud of what I achieved.
The hot shower incident occurred in 1990. The
hot soup incident occurred in 1993.
Chapter Three:
Are These Seizures?
The Hot Soup Incident
I poured myself a glass of root beer and ladled a
bowl of my homemade vegetable soup in beef broth then took both of
these to my chair. Because so many people were in the living room
of the small apartment I shared with my husband Brian, they sat in the
big block wooden chairs with cushions and matching couch. I sat
on a black folding chair that usually accompanied a square card
table. After I tried a spoonful of the soup, I discovered it was
extremely hot. So I set the soup aside and drank some root beer.
That feeling of dizziness occurred again. It
had been a few years since I felt it. I had to ward off any
possible seizure, so I put my head between my knees. Then I lost
consciousness and fell forward.
When I awoke, Brian was shouting, “Lori, you’re
okay; you’re at home!” over and over. I was
unconscious for so short a period of time that Brian didn’t even make
it across the room to me before I woke up. But then he was there,
holding me in his arms, and I was crying, “Twelve years, my
license!” I feared that I had blown a twelve-year seizure-free
record and would lose my driver’s license that I finally gained in
1992.
Even though I was not incontinent nor did I vomit, I
still had to change my clothes: I was holding my root beer when I
fell, and soda spilled all over my shorts. When I went back out
into the living room, I explained to our friends, “This incident might
have been a seizure, though it’s unlikely because this wasn’t like the
seizures I had as a child.”
When I sat back down in the chair, I noticed that it
was neatly folded and leaning against the wall. “Who folded the
chair?” I asked.
Brian chuckled, “Actually, when you fell forward,
the chair went back. It folded itself against the wall.”
Despite the seriousness of the moment, I had to laugh.
The Wisconsin Council on
Developmental Disabilities
I started a new job at the Wisconsin Council on
Developmental Disabilities in June 1993. As was my habit, I told
each of my colleagues one by one about my seizure disorder. The
Monday that followed the game, I told my supervisor, Steve, about my
epilepsy, and the incident that had occurred over the weekend.
“I’m still not sure if it was a seizure.” I said,
“None of the signs of my seizures occurred during what happened
yesterday at home.”
Steve was a tall and jolly-looking guy. All
you had to do was add the white hair, beard, and the red suit and you
had a perfect Santa Claus. He smiled at me behind his thin
wire-rimmed glasses. “Have you contacted the Epilepsy Center
South Central?”
“I already know of the ECSC. They helped me
when I was a child.”
Steve said. “Even if you didn’t have a
seizure, you still might want to contact them. They offer a broad
range of services.” Maybe Steve knew something about the previous
two incidents that I didn’t. Maybe he realized long before I did
that what happened in the shower and in my living room were more than
just problems with the heat, but I didn’t want to accept that.
While I worked at the Council, I discovered
that epilepsy is considered a developmental disability. According
to the State of Wisconsin, a developmental disability is “a disability
attributable to brain injury, cerebral palsy, epilepsy, autism,
Prader-Willi Syndrome, mental retardation, or another neurological
condition closely related to mental retardation or requiring treatment
similar to that required for mental retardation, which has continued or
can be expected to continue indefinitely and constitutes a substantial
hardship to the affected individual.” I never thought of myself
as being disabled–no one ever used the term to describe me. I
didn’t exactly fit the definition of someone who is disabled. I
just have epilepsy. The only way my epilepsy could classify me as
developmentally disabled is regarding independence. I have never
lived alone. I have always had a roommate or lived in a
dormitory.
Betsy’s Advice
Later in the week after the hot soup incident, I met
with my best friend Betsy who by now was a registered nurse. I
wanted to ask her advice on what I should do about this latest
incident.
We sat in a bookstore coffeeshop, poring over
magazines and lattes. “Before I tell you what happened,” I said,
“I need to know if you’re bound by law to report on matters that could
affect a person’s driver’s license or anything like that.”
“Lori, the laws in the state of Wisconsin aren’t so
strict. All medical personnel have to do officially is keep
accurate patient records. You’re not my patient, so I don’t have
to keep a record of anything, including this conversation.”
After I explained what happened she said to me, “If
I came to you with this story, what would you tell me?”
The answer came easy, “I’d tell you that if you
didn’t go to the doctor for a checkup, I’d drive you there
myself.” Enough said.
So I made an appointment with my primary
physician. She was a wonderful woman who was easy to talk
with. When I explained to her what happened, she ordered my third
EEG.
The results were negative: no seizure
activity. That combined with my statement that this wasn’t like
the seizures I had as a child led my doctor to believe that it wasn’t a
seizure. She agreed with my husband that these two isolated
incidents were caused by heat (the hot shower and the hot soup)
shocking my system. Satisfied with that wonderful piece of news,
I went on with my life.
Humor and Epilepsy
I became an active member of the Epilepsy Foundation
again, just to catch up on the latest information. The Council
even sent me to an epilepsy seminar in May of 1994. The day the
brochure arrived in the mail, I was so excited I was jumping around.
“Don’t have a seizure.” said Connie. She
worked on the same floor that housed the Council, and she and I had
become friends. One of Connie’s sons had cerebral palsy, and she
was very sensitive to the needs of people with disabilities.
“Don’t worry; I don’t plan on having any more
seizures, just learning more about them.”
“Do you have epilepsy?”
“Yes.”
“I’m sorry, Lori. I didn’t realize.”
Connie went from being funny to serious in a matter of seconds.
“Connie, do you know what to do if a person has a
seizure in the water?”
“No, what?”
“Throw in the dirty laundry!” I said as I
flapped my arms. I wanted to let her know that I do have a sense
of humor regarding my condition. In fact I almost got a detention
for telling that joke to a high school classmate on the first day of
the swimming section of P.E.
The Epilepsy Foundation in the United States
publishes a newsletter called Epilepsy
USA, which is a very good publication loaded with information on
helping those with epilepsy, and the newsletter reports on the latest
research being done in the field.
In March of 1996, Epilepsy
USA ran an article regarding a joke by a comedian named
Briggs: “Did you hear about the restaurant opened up by people
with epilepsy? Best seizure-salad anywhere.” I loved the
joke, but the Epilepsy Foundation hated it and wanted to know the
opinions of the epilepsy community. I wrote them a letter which
included the following.
I would like to address the “Seizures
& Sensitivity” letter. The first time I heard the joke, it
was from another comedian named Rob or Rick Dukaman (I believe I have
misspelled his name, and I do apologize) and the joke was “Did you hear
about the restaurant that was opened by disabled people? They
serve the best seizure salad anywhere.” Ironically I heard this
joke the night before I attended a seminar on epilepsy, and I laughed
uproariously. Not all people with epilepsy find epilepsy jokes
painful. I love epilepsy jokes and remember all those I
hear. I have known my entire life that epilepsy isn’t curable
(yet) and having another seizure is always a possibility with potential
injury or fatality. One of the ways I have dealt with the emotional
difficulties of my disorder is with a sense of humor.
People need
to laugh and especially at themselves. I know that epilepsy must
be taken seriously, but does that mean we can have no humor at
all? Having seizures in public doesn’t have to be any more
humiliating than tripping and falling in front of a group of
people. If children are taunting a child who has epilepsy, then
those children need some serious education on seizure disorders and
what having seizures mean, and the child needs to learn to ignore the
mockery (by walking away for example) or to deal with the jeers
possibly with a sense of humor. Think of how a comedian deals
with a heckler. It’s important for a child with epilepsy to learn
how to handle these situations while still young because these
situations may occur well into adulthood, or throughout the entire
lifespan.
A
friend of mine, who also has epilepsy, is a very funny comedian, and he
has many jokes about epilepsy in his repertoire. That doesn’t
mean he thinks his epilepsy is solely a laughing matter-he takes his
condition very seriously-it means that he has found an excellent way of
dealing with the emotional stress of his seizures and an amusing way of
informing people that epilepsy isn’t something to fear.
Mr.
Briggs’ comment that he’s “an equal opportunity offender” shows that he
treats all people the same, and isn’t that what anybody with a
disability wants? To be treated like everybody else?
Granted, it’s a rather dubious form of equal treatment, but it is
equal. We have to remember that there are both bad and good means
of equal opportunity. It is a double-edged sword that can cut in
either direction.
In the
meantime, go and have a good laugh; and I do mean this in all
sincerity, it seems as though you could use one.
Unfortunately Epilepsy
USA quoted me out of context in their next edition. They
only printed, “Mr. Briggs’ comment that he’s ‘an equal opportunity
offender’ shows that he treats all people the same, and isn’t that what
anybody with a disability wants? To be treated like everybody
else?” I was disappointed, mainly because I sounded like an
idiot.
The Board of Directors
Early in August of 1995, Art Taggert, Director of
the Epilepsy Foundation of South Central Wisconsin, sent me some
brochures I had requested. His care package included a note,
Lori,
Would
you consider being on the Center’s Board of Directors? Let me
know. The election takes place in November at the annual meeting.
-Art
I was thrilled and honored to be asked and could hardly wait until
November.
Chapter Four:
Seizures Again
All Night Restaurant
I worked a day shift, and Brian worked second
shift: 3:30 pm–11:30 pm. If I wanted use of the only car we
owned, I had to pick him up because the city bus stopped running by the
time he was done with work. Late on the night of Monday, August
21, 1995, when I picked him up, he asked if I wanted to go out to eat.
“Sure, Honey, I’m hungry.” I said.
“Where would like to go?”
“It’ll have to be an all-night restaurant.
Everything else will be closed.” He said.
We went to the closest all-night restaurant to the
house we had purchased earlier that year. Outside was sweltering
heat, but inside the restaurant the air conditioning was cranked so
high I was freezing the moment I entered the building. When we
were seated, the waitress asked us if we would like anything to drink
right away.
“I’ll have a cup of hot herbal tea.” I
said. I was so cold.
Brian ordered his usual, “I’ll have a diet cola.”
After we placed our food order, Brian and I were
talking and holding hands across the table of our booth. Then the
dizziness came again. I tried to tell Brian I was having an
aura. The only word I had time to say was, “I’m...” before I was
unconscious.
While I was unconscious, a strange thing
happened: I felt like I was dreaming. I was at work trying
to fix the photocopier again, which was a very common thing for me to
do at work. When I woke up, I knew my name and whom I was with,
but I didn’t know where I was.
“Where am I?” was my first question
Brian explained, “We’re at a restaurant. You
were unconscious. I considered asking someone for help, but you
woke up so quickly. You didn’t fall because I kept my grip on
your hands while you were out. Lori, what happened?”
The same thing that happened in 1990 and 1993
happened again. This time there was no mistake: I knew I
had a seizure; I could tell by the way it felt.
Brian knew how important my driver’s license was to
me. He also knew how important it was to me that I take care of
my health, specifically my epilepsy.
I didn’t go to the work the next day or the day
after that. I had been seeing a resident and a neurologist named
Dr. Beinlich for problems with headaches, and I kept calling their
office trying to make an appointment. I had to go back to work on
Thursday because I was out of sick leave. I finally reached
Beinlich and scheduled an appointment for the following Monday, my 26th
birthday.
An (Un)Common Birthday
The director of the Wisconsin Council on
Developmental Disabilities at the time, Jayn Wittenmyer, and I shared a
common birthday: August 28. She brought in carrot cake
decorated with flowers, and I brought in cinnamon rolls I made from my
mother’s recipe.
My neurology appointment was late in the day.
I remember checking in at the reception desk, then sitting in the
waiting room and worrying. I recalled that day in church more
than 14½ years previous when I told my Poppy that I didn’t feel
so good, and the diagnosis that followed.
Probably the most important key to a diagnosis of
epilepsy is a description of the seizure. Brian had been the only
witness for all of my adult episodes. The information I gave my
doctors came directly from Brian’s account of what happened. I
told Beinlich and the resident the descriptions of all three incidents
over the past five years.
“I have the same aura I had as a child, but while
I’m unconsciousness, there’s no emesis or incontinence. Instead,
Brian says I slump and make a weird sighing noise. Then I twitch
a little.” I shook my arms up and down in the same gesture Brian
showed me last week. “I’m only unconsciousness for about thirty
seconds.”
Dr. Beinlich’s diagnosis was quick and short, “Yep,
those were seizures.”
I started to cry.
I wasn’t seizure-free for 14½ years as I had
thought, only for nine years. All three incidents were
complex-partial seizures.
“But my last EEG read normal.”
“Complex-partial seizures don’t show up on
EEGs. I’ll order another EEG, but I doubt we’ll see
anything. I also recommend you start taking anti-epileptic
medication again.”
“Not phenobarbital again.” I said.
“No, not for complex partial seizures. You
should take carbamazepine, and you should take it for at least 3-5
years–maybe for the rest of your life.”
“How about four?” I said.
“Why four?”
“Because four years from today I turn 30, and that’s
when I want to start having children.”
“Okay. I’ll call the prescription into your
pharmacy.”
After Beinlich and the resident left, I called
Kathleen, a friend of mine, to come pick me up because I knew I
shouldn’t drive.
“Kathleen, this is Lori. The doctor says I’m
having seizures again. I’m at his office, and I shouldn’t drive
home. Can you come pick me up?”
“Unfortunately, I can’t, Lori.” She said, “I
have some errands to run before your party. Are we still on for
tonight?”
“Yes, I’ll call you if the plans change.”
I decided to drive myself home. When I arrived
back in my car, I leaned up against the steering wheel and cried some
more. I just let the tears pour out. While tears may
cleanse the soul, this time I was left with just a dull ache.
When I arrived home, I called Brian. He knew
what the news was even before I said it; he could hear it in my
voice.
“Hold on a moment, Sweetheart,” he said then
he put his hand over the phone. When he came back he said, “Are
you okay to pick me up?”
I should have thought of that first. Brian
worked about a couple of miles from the hospital. Going to pick
him up was the last time I drove for a while.
On the way home Brian asked me, “Do you still want
to go out for your birthday?”
“Of course,” I said, “I need my friends to
cheer me up.”
A Birthday Celebration?
The Nitty Gritty is Madison’s “Birthday Bar.”
People celebrating the day they were born receive a free, although
small, gift mug and free tap beer or soda all evening. Marsh
Shapiro, the Gritty’s owner, makes his money from the celebrant’s
friends buying food and drinks, particularly birthday shots. The
interior of the bar/restaurant is covered with black and white photos
of people who have celebrated their birthdays at the Gritty over the
years. One depiction was a woman who celebrated a decade worth of
birthdays and had the mugs lined up to prove it. Other pictures
included twins or triplets, a few centogenarians, and a few local
celebrities.
When I walked into the Gritty, some of my friends
were waiting: Kathleen had a Mylar balloon floating above her,
and Betsy was laden with gifts as usual. In total, ten people
came to celebrate my birthday, and I really needed a celebration.
Betsy asked me how I was doing.
“The party helps,” I said, “but I have to take
medication again.”
“Which one?” Betsy asked.
“Carbamazepine.”
“Then why are you drinking alcohol?”
Carbamazepine, like virtually every other medicine on the market, has
side effects which include intensifying the effects of alcohol.
“I haven’t started taking it yet. I’ll take my
first dose tomorrow.”
“Okay.” One of the best things about Betsy the
nurse is she understands the patient’s need for quality of life,
including the want for a beer after bad news. I figured I’d cut
the alcohol and start the medication first thing in the morning.
Surrendering My License
On Tuesday, August 29, 1995, Brian drove me to the
Department of Motor Vehicles. I felt like a teenager again having
to be chauffeured around by an important man in my life. Only
this time my husband rather than my father was driving me. I was
going to surrender my driver’s license–not fight for it.
The east side DMV office was closed on Tuesday
mornings, which was the latest in this chain of disappointing events.
“Well,” I said, “shall we see if the west side
office is open?”
“I guess.” Brian said. He wore a frown on his
face as he cranked the wheel to turn around. His tone of voice
that told me he was irritated. I didn’t blame him. First he
has to wake up early after having been out late the previous
night; and he’s not a morning person anyway. He was taking
me to surrender my license, which he knew meant he would have to drive
me virtually everywhere, and the inconvenience of having to travel to
the other side of town to wait in line at the DMV. Not a fun
morning.
Fortunately the Madison West DMV has a number-taking
system. Upon entering the room, you select a number from a
machine based on your business that day: driver’s licensing
issues, license plate issues, commercial license issues, id cards,
etc. The customer doesn’t have to wait in line, but can sit down
until the appropriate number is called. Huge scoreboard-like
signs around the room let the customers know what number is being
served for which service. I selected a tag for driver’s
licensing, and we sat down to wait.
When I was called, I explained to the man behind the
counter that I needed to surrender my driver’s license.
“Why?” he asked.
“Because I have epilepsy, and I just had a seizure.”
He seemed confused, “And you are giving up your
license?”
“Yes,” I said, “that’s what the law requires me to
do.”
“Um, I’ve never dealt with this situation
before. I’ll have to ask my supervisor. Excuse me.”
I propped my head on my arm over the counter as I
waited. I knew that mine was an unusual circumstance. In
1991 a driver with epilepsy killed two girls in front of East High
School. The newspapers, much to my outrage, overplayed the role
of the driver’s epilepsy and mentioned very little about the
“recreational” pharmaceuticals the man had taken before the
accident. The newspapers believed that the laws regarding drivers
with epilepsy weren’t tough enough. I understood the position
they presented: having a seizure behind the wheel could be
dangerous not only for the driver, but for others on the road.
However, the media didn’t realize the troubles I went through as a
teenager to gain just a learner’s permit.
In 1987, the same year I turned eighteen, several
disability advocacy groups such as the Wisconsin Council on
Developmental Disabilities and the Wisconsin Epilepsy Association
successfully lobbied the state legislature for fair laws regarding
drivers with epilepsy. The driver needed to be at least ninety
days seizure-free to have a driver’s license, provided the driver’s
neurologist agreed.
The supervisor was a nice woman who said, “You’re
here to surrender your license?”
“Yes, how soon can I get it back?”
“Ninety days from your seizure provided both your
doctor and the Medical Review Board approve.”
“Uh, oh.” I said. I had a hard enough time
getting my license, and I hoped I wouldn’t have a hard time again
later.
The supervisor understood my sentiment. “Don’t
worry. The procedure has been updated for more efficient
decision-making.”
“Which means I’ll hear ‘no’ faster?” I didn’t
mean to sound cynical, but I didn’t have much faith in the DMV since my
original attempt to gain a learner’s permit.
“Which means the Review Board person usually
rubber-stamps the decision of the doctor.” Of course.I should
have realized this when I saw the application’s updated question, “Have
you had a seizure in the last five years?”
The Letter
Our next stop was the Epilepsy Foundation, which was
located in an office building not too far away from the west DMV.
Mercifully Art was free to meet with me. He stood up from behind
his desk, and I noticed for the umpteenth time just how tall and almost
lanky he was, like a basketball player. He hugged me as he told
me he was there for me. “What can I do to help?”
“I’m still not up on the latest information.
Are there any new pamphlets or books I’ve yet to see?”
Art handed me a book. “This just came in
yesterday for me to review. I don’t have time to read it, but I
bet you’ll make time.” The title read A Guide to Understanding and Living with
Epilepsy by Orrin Devinsky M.D. (F.A. Davis, Co., 1995).
The cover was decorated with Van Gogh’s “Irises” which was appropriate
considering the late impressionist had epilepsy. In fact some
people think the ear injury was seizure-related.
“Thanks, Art.” I said as I stood to leave.
“Let me know if I can do anything to help.
Remember the support group meets on Tuesday afternoons.”
After Brian drove me to work, I sat at my computer
and typed a letter:
Dear Friends, Family, Colleagues, and
Doctors:
As you may or
may not have heard by now, I’m having seizures again. On Monday,
August 21, I had a complex-partial seizure. This kind of seizure
starts in one small area of the brain, then spreads over a larger
portion of the brain. For me this current seizure type included
an aura (or warning state of dizziness and changes in light perception)
that lasted about fifteen seconds and quickly progressed into an
unconscious state for about twenty to thirty seconds. While
unconscious I slumped a little, then I twitched a couple of times, but
I did not have an emesis nor was I incontinent; thus this is a
vast improvement from my childhood episodes. However, I was
mildly disoriented upon gaining consciousness. My neurologist has
put me on an anti-epileptic drug called carbamazepine to control these
seizures.
If I have a
seizure and you are around, here is what you do:
1. Don’t
panic! Douglas Adams’s advice is good for any situation, seizures
especially.
2. If I have
the chance to warn you, I will. Unfortunately these seizures
don’t give me as much warning time as I had before.
3. Note the
time (duration) and any unique occurrence (twitching, eye movement,
etc.). These are very important pieces of information used in
diagnosis and prognosis.
4. If I fall,
try to ease me to the ground and point my face downward in case of
emesis. It is not necessary nor always recommended to try to
catch me–just help me so I don’t injure myself.
5. While I am
unconscious, there is no need to hold me down or put anything in my
mouth. I may twitch, but it is unlikely that I will move
around. I cannot swallow my tongue; putting something in my
mouth would probably injure me rather than help me.
6. Let the
seizure run its course. There is nothing you can do to stop it.
7. When I
regain consciousness, I may be disoriented. On the 21st the first
question I asked Brian was “Where am I?” Please answer any
questions I may have.
8. I may be
tired or thirsty. Please understand my needs and help accommodate
them.
9. It is not
necessary to call an ambulance. Usually I will only need these
few first aid techniques described here. If, however, my seizure
lasts more than five minutes, or I have repeated seizures one after the
other, then send for an ambulance. This may be a condition called
Status Epilepticus and is very life-threatening. It is also very
rare.
10. People
may stare, offer help, or just ask stupid and/or embarrassing
questions. My advice: accept the help with grace, the
stares with dignity, and the questions with humor.
This morning
I voluntarily surrendered my driver’s license, as I am obligated by law
to do, and replaced it with an identification card. If I remain
seizure-free for ninety days, then I will be eligible to reapply for my
license with full driving privileges restored because I voluntarily
surrendered it. During this period, I may need help with rides to
various activities, and I thank those (like my husband and my father)
who already have generously offered chauffeur services.
I can still
lead a normal life (well, as close to normal as I ever come); I
just may need a little extra understanding and assistance now and
then. We all need help at some point in our lives; this is
my time. Thank you all for your support and love.
Smile,
Lori
I wrote number ten
especially for my mother. Even though she was great about my
condition when I was a child, I wasn’t sure how she would react to this
setback. Since 1995 I have given these instructions to my
friends, colleagues, siblings, etc., and I’ve had to explain to most of
them that Douglas Adams is a British author who wrote the popular
series called The Hitchhikers’ Guide to the Galaxy, which contains in
the story a book that has in “big friendly letters on the cover, the
words Don’t Panic.”
My colleagues at the Council were incredible, of course, just like my
classmates back in sixth grade. They helped me count down the
days until I could regain my license. One Tuesday, a colleague
said to me, “Two weeks.”
“Thirteen days,” I said. She smiled because
she knew why I made the distinction.
Chapter Five:
Living With Epilepsy, Part II
Frustration, Confusion, and Fear
The person who has been most supportive, of course,
is Brian. Shortly after my second diagnosis, he said, “I have to
tell you how proud I am of you. You have chosen to take care of
your epilepsy by going back on medicine. You have shown
responsibility by turning in your driver’s license. And you
showed a lot of courage by writing your letter. I am so proud of
you, and I love you.”
I really needed his love and support.
When I turned in my driver’s license, I needed to rely on others for
help with things I previously had taken care of by myself. My
father drove me when I needed to buy Brian’s birthday present, when I
went for my bimonthly haircuts, and when I needed to take my cats to
the vet. I felt like I had lost my independence. Here I
was, 26 years old, and I was still relying on my father to chauffeur me
around. I felt like a teenager again, and I hated my teenage
years.
I had to ride the bus to and from work each
day, and when I arrived home in the evenings, I usually just stayed
home. I felt like I couldn’t go out and do anything anymore
because I couldn’t drive there. I was very lonely. One
evening my neighbor arrived home from her second job at 10:30 in the
evening. I immediately went outside and invited her in to
talk. She probably understood what was going on because I gave
her a copy of the letter. I appreciated her company and her
kindness. Despite her exhaustion, she stayed and chatted with me
until 11:00.
My spirits had fallen, and I didn’t realize how much
until Betsy called me one evening.
“Scott and I just had a fight,” Betsy said of her
husband, “and I feel like going out shopping. Care to join
me? I’ll pick you up, and we’ll head to East Towne.” She
referred to the mall on my side of town.
Two months had passed since my last seizure.
Two months since I went out and enjoyed myself. I am always
grateful to Bets for taking me out. My spirits needed a shopping
trip.
I soon learned that having seizures and epilepsy did
mean that there are some things that I can’t do. Kathleen was
training to be a pilot, and she told me that the Federal Aviation
Administration forbids anyone with epilepsy from becoming a
pilot. I know this should bother me, but I understand their
position. Besides, I hate flying.
One day when I checked the mail, I noticed someone
had slipped a flyer in my front door, which advertised a blood drive
taking place at a nearby church. I called the Red Cross to ask if
I could donate blood while taking anti-epileptic medication.
“The medicine isn’t a problem.” the nurse on the
line said, “When was your last seizure?”
“At the end of August.” I said.
“I’m sorry, but we require that a person be
seizure-free for at least three months before donating blood.”
Just like the DMV. I felt very frustrated.
Fear was an emotion that I felt with my adult
seizures that didn’t occur with my childhood seizures. Many fears
are companions to epilepsy because seizures can be very dangerous if
they occur during some common activities: walking up and down
stairs, cooking a meal, taking a bath, riding a bicycle, being with
strangers or being alone. I learned that I can’t let these fears
control my life. I have to use the stairs, there’s no elevator in
my house; I have to cook meals so I can eat. Precautions
can be taken, however. Brian bought me a bicycle helmet. I
could take showers, or if I really wanted to take a bath, I did
so at a time when Brian was in the house and could check on me.
As for being alone, I called my husband every night when I come home
from work to let him know that I arrived safe.
I ordered another Medic Alert© bracelet and
have worn it ever since. Unfortunately the first year I wore it,
I felt as if I was tagged like a head of cattle.
One evening while sitting in the recliner of my
living room, I felt an incredible wave of confusion. I couldn’t
concentrate. I felt like I was trying to think, but my mind was
full of misty clouds. I didn’t understand what was happening, but
I knew I should do something about it. I thought about calling
the doctor, but my pharmacist would probably be easier to reach.
Then I remembered that my pharmacy gives written instructions with each
medicine it dispenses. I read the pamphlet that described
carbamazepine, and under the side effects was listed, “may cause
confusion.” Okay, I felt normal then. Sometimes I had a
hard time remembering if I took my medicine. Dr. Beinlich had
prescribed three pills a day: morning, afternoon, evening.
Aside from counting the number of pills in my bottle, I had no way of
keeping track. So Brian purchased a pill box that held a week’s
worth of pills. When lucid, I filled the container, then I could
just look in it and count up to three pills to determine if I had taken
my daily doses.
I Can Do Anything
My relapse damaged–but did not destroy–my
self-esteem. Frustration, loneliness, and fear took their toll on
me. However, I didn’t succumb to these feelings as a child, and I
certainly didn’t succumb to them in 1995. I was raised to believe
that I can do anything. Epilepsy can’t stop me from achieving my
dreams and goals. People with seizure disorders can lead normal
productive lives with just a little help. I set out to prove that
statement true.
After Brian and I purchased our first house in the
Spring of 1995, I purchased a book on candlemaking from a local craft
store. Throughout the Summer, I purchased the various items I needed to
make candles: wax, wicks, molds, color, and scent had to be purchased
brand new from the craft store. I combed the second-hand and
resale stores for the bigger items: a metal pitcher, a double
boiler, an old cookie sheet, etc. In early September, I found the
last item I needed: an ice pick for drilling wick holes. At
first I was afraid to make candles because of the dangers involved with
hot wax and the possibility of having a seizure. My seizures were
infrequent, so I decided not to let my epilepsy control my life.
On an evening in late September I made a tall round
pillar candle colored blue and scented with jasmine. When Brian
came home, he was glad that I didn’t injure myself.
“It’s perfect, Sweetheart.” he said as he handled
the candle.
I beamed from his praise.
The Beauty Pageant
During the Summer of 1997, I participated in a
beauty pageant for married women. Having the courage to put
myself in front of judges and hot lights in a pageant wasn’t difficult
as a woman with epilepsy–why should my epilepsy prevent me from
participating? My simple precautions: wearing a Medic Alert©
bracelet, informing those around me, making sure I take my medicine,
etc. are more than enough to take care of seizures if the need
arises. No, the real courage to participate in a beauty pageant
is apparent when you realize that I was 114 pounds overweight at the
time. Why did I even try? Because every contestant received
a crown and banner for being in the pageant.
Of course I didn’t win. I didn’t even make the
top ten (out of fifty contestants), but I did win a trophy. The
emcee described the Mrs. Organization award going to the contestant who
“best handled the difficult paperwork, aggressively pursued sponsors,
made sure ad copy turned in was correct, and assembled the required
wardrobe in record time.”
My brother, who was seated in the audience, said,
“That’s not Lori.”
When my name was called, I laughed as I walked to
the center of the stage to receive my trophy. Fran shouted out,
“But you should see her house!” Organized doesn’t mean I have to
be a good housekeeper.
Everyone was proud of me: my husband, my
parents, my extended family, my colleagues, my friends admired my
courage-even my skinny best friend, Betsy. I was proud of me.
Golden Birthday
My golden birthday was on the 28th of August, 1997.
I decided it was a good time to stop counting; why wait until I’m
30? To celebrate the occasion, I had a party with a
Winnie-the-Pooh theme. Who says you have to be a child to have a
child’s birthday party?
The idea started brewing two years before when I was
shopping for candlemaking supplies, and I noticed the candy making/cake
decorating supplies in the same aisle. On the bottom shelf was a
kit to make a doll cake, which has a doll on top and the cake is shaped
and decorated like a wide hoop skirt. I always wanted one of
those when I was a child, but my mother never made or ordered one for
me. I held that against her for years. Shortly after I saw
the mold in the craft store, I decided I would have a big party for my
golden birthday, and I would have a doll cake. During the
two-year planning process a thought occurred to me: did I ever
tell my mother I wanted a doll cake? My resentment melted away
like ice cream in the sun.
Many friends and family came to celebrate what I
billed to be the last birthday party I’m going to have until I turn
100. To do something extra-special, I asked that in lieu of gifts
people bring non-perishable food items or personal care items to be
donated to the local chapter of the Salvation Army. We played
Pin-the-Tale-on-Eeyore, but couldn’t crack open the Pooh-shaped
piñata because it rained all day. Everyone who wanted to
had a chance to try on my crown from the pageant. Betsy took a
couple of noisemakers and blew them out her nose to make noise.
My nephew William, who was almost three, had a great time with Uncle
Brian setting off noise poppers that blew confetti all over the
place. The birthday celebration was great.
Returning Adult Student
Another goal I set for myself is finishing my
bachelor’s degree. I quit school in 1990 because I couldn’t
afford to keep going. In December of 1996, I started work at an
academic department at the University of Wisconsin-Madison, and I
started taking classes in the Fall of 1997. Every time I tell
someone I’ve gone back to school they say, “Good for you!” with the
exception of my high school choir director whom I saw on campus one
day. I will graduate in August 2000 with a degree in English and
an emphasis in Creative Writing.
Chapter Six:
Future Concerns
Now my biggest concerns regarding my epilepsy center
around my future children and my medicine. Although clinical
evidence is lacking, carbamazepine can cause some severe birth defects
such as neural tubal defects, developmental delays, and cleft
palate. During my semi-annual appointment with Dr. Beinlich in
August of 1999, we discussed options.
“Lori, I don’t need to remind you that epilepsy
isn’t curable. You’ll most likely be on meds for the rest of your
life.”
“But I don’t want to put my future children at
risk. You know the potential side effects. It’s better to
be medication-free than to be taking drugs while pregnant. My
seizures are so infrequent that I think the medication could cause more
harm than a seizure could.”
Beinlich knew the risks better than I did.
“Well, you should be okay to go off medication long enough to give
birth to and breast feed your children.” Then he advised, “Make
sure you get plenty of sleep to avoid seizures, and start pumping the
folic acid and vitamin K. They’ll help you have a healthier
pregnancy.”
With Dr. Beinlich’s guidance, I stopped taking
carbamazepine. Before I become pregnant, though, I have to lose
weight: obesity can cause neural tubal birth defects also.
Coupled with risks of diabetes, high blood pressure, difficult
pregnancy and extensive (as in longer than usual) labor. I’d
rather not have any children than put them through excessive risks.
The possibility that I might not be able to have
children also exists. The fertility rate for women with epilepsy
is 25-33% less than the general populace (Yerby). This statistic
may be due to the eugenics of the fifties and sixties. Even in
the liberal State of Wisconsin, women with epilepsy were forbidden by
law to marry. In some states, these same women were oftentimes
sterilized without their consent. I’m so concerned about the if
that I’ve tried to find a fortune teller who would be able to tell me
if I am able to have children–not whether or not I will have them, or
if they will be healthy, happy, etc. I just want to know if I am
physically able to have children. It may sound silly, but it is a
genuine concern. Mercifully I have the best husband on the
planet. One day I asked him, “What if I can’t have children?”
He replied, “Then we can’t have children.”
Although epilepsy can be inherited, the risk of
passing epilepsy on to my children only goes up 1-2 percent over the
general populace. To explain it better: imagine that I have
100 kids, and a woman without epilepsy has 100 kids (ouch!). The
data shows that five or six of her children may be diagnosed with
epilepsy. In comparison, six or seven of my children may be
diagnosed with epilepsy.
I’m not worried about telling my future children
about my epilepsy and what to do if I have seizure. I’ve had
enough practice over the years talking about epilepsy to people of all
ages. I think of the more obvious concerns of how they will be
treated by their friends and others if “Mom” has a seizure when others
are around. Or even more frightening: harming them
inadvertently while having a seizure. Despite all the advocacy of
the last twenty to thirty years, there are still some human service
agencies and courts who believe that a woman is an unfit mother solely
because she has epilepsy, which enrages me. Anyone who
would try to take my children away from me for this reason would have
one hell of a battle. I know my rights, and I know where to find
the resources for help. If and when I do become a parent with
epilepsy will be a topic for another book.
Chapter Seven:
Epilogue
I have been spent the last five years overcoming the
setback of being diagnosed with complex partial seizures. The
phase of my life that included loneliness, fear, and frustration after
having seizures again has ended. I have worked hard to achieve my
goals. As I finish this memoir, I am nine days away from my
college graduation, though I will still have to go to summer school to
finish my degree. I exercise three to five times each week and
monitor what I eat, and I am losing weight, which feels wonderful.
What does the future bring? I hope and pray
that children are in my future. I also hope that I will never
have another seizure. Until research finds a cure, however, I
will always have epilepsy.
The End For Now
Lorin
Killoy.com
