Off That Bus: Visions Of An Epileptic Mind 4h176w

OFF THAT BUS

Visions of an Epileptic mind

Sarah Grahn

Copyright © 2012 by Sarah Grahn.

Library of Congress Control Number: 2012923030 ISBN: Softcover Ebook

978-1-4797-6156-2 978-1-4797-6157-9

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

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Contents

Foreword

My Poetic Insight

The “Lucid” Dream

Social Dilemmas

“Oh My God”!

The Mental Bucket

Life After High School

College Will Be Different

Choosing A Career Path

A More Empathetic Perspective

The Theatrical Cavern

The Full Brunt

My Boyfriend’s First Experience

Friendships

My Internship

An Honest But Disrespectful Response

Employment And Epilepsy

Return To The Neurologist

Dark Cavern—Myself

The “Professional Position”

Starting A Family

Pregnancy

The Projected Agony

Our Move

The Medication Issue

How Long Will It Take

The Feature Presentations

A Dramatic Change

Distressing Phone Call

Journey Into Motherhood

An Entirely Different Play

Sweet Dreams All Aboard

Seizure Management

A More Progressive Approach

Options

Return To The Theatre

The Consultation

A Renewed Hope And A Fresh Perspective

Sources Of Comfort

Still A Maybe

Brambles And Briars

The Surgical Process

A Completely Different Twist

The Second Operation

Awake And Engaging

Second—Hand Puzzle

Post-Surgical Feelings

New Anxieties and Steppingstones

My Own Kind Of Therapy

Evaluations And Tribulations

Clarity And Cognition

“Barricade Of Orange Barrels”

“All Consuming Pothole”

Resignations And Gratitude

“Epilepsy’s Life Lessons”

Living Museums

Final Thoughts

Foreword

My Poetic Insight

Throughout my life with epilepsy I wrote a variety of poems and a kind of diary of my struggles and emotions. I realized soon after my diagnosis that there were therapeutic benefits of writing about my ordeal. I eventually developed the larger more impactful notations of the diary into a set of two essays. The first came primarily from my early ideas about my seizures and concluded with a more intellectual evaluation of my experiences. This essay became my opening chapters of my book. The second one came from a more recent and mature stand point. It focused on the psychological components of my seizures and gave the narrative a more emotional and spiritual twist. I have since developed this essay into the final chapters of my book. Within these pages, I also included some of those poems which give direct insight into the most pivotal stages of my life.

The “Lucid” Dream

It started out just like any other day at school, only this day was the day before Christmas break started. The bus route continued on as normal, with me falling asleep in the monotony of that hour-long bus ride to school. This time though, I felt more lucid, because I could hear conversations around me. The atmosphere seemed more like a theater than a bumpy school bus. Then the feature presentation switched on like black lights against the surrounding darkness. I could see distant stars as if picturing a clear winter’s night, complete with all its bone chilling effects. In an instant, the chill became a burning sensation, as if lava was now coursing through my veins. Glancing off to my left, my fingers, then my forearm piece by piece were being disassembled at the ts and floating away to the vast expanses of outer space. I desperately tried to gather my body parts with my right hand, but was suddenly distracted by a hot, popping sensation within my mouth. This was followed by an immediate disassembly of my legs and then my right arm, this time beginning at the shoulder and working down to my fingers. My only reaction was to reach with my left hand, again attempting to collect my body parts. Then, as if I had been caught telling one fantastic fib, I realized my actions were in vain. Both arms were gone, leaving me without the ability to reach for anything. Then the lights burned out and the stars faded—complete darkness quickly prevailed. I woke to sound of the bus coming to its final destination of the morning. Although I anticipated the day to be fairly easy, I could not concentrate on much of anything anyways. Instead, I silently toughed out the nervous feeling within my stomach, wondering if I would make it through the day without getting sick. The stomachache and residual lack of coordination of an interrupted sound sleep eventually subsided as the morning classes came to a conclusion. As the end of the day approached, I was still horribly affected by my dream. I sat down on the bus, completely relieved to be going home for an extended vacation. Kids who had been sitting in the seats next to me on the ride that morning began to ask me about my dream. They asked me why had my arms and

legs been flailing and kicking so much. “That must’ve been some dream you were having,” one boy said with a laugh. I gave my best attempt at a smile, not knowing how to explain the contents of the dream or why it left me with so much hurt. That night, I did my best to describe this painfully realistic, yet nonsensical dream to my mom. She halfheartedly tried to interpret any possible reasons for such a strange event; and then returned to her last-minute Christmas preparations. A few days ed, I blew off the dream is just another illustration of a sometimes warped thirteen year old mind. I was lying in bed one morning, reveling in the laziness of Christmas vacation when the burning sensation returned. This time, I knew I was not dreaming. Again, it felt as though my bones, while being subjected to some type of internal furnace, had been transformed into a molten, somewhat pliable state. Then with great force, my left hand initiated a progressive coiling reaction throughout my body. This was very briefly interrupted by a hot popcorn sensation within my mouth. As the progression reached the final point of my right fingers, my left arm was then propelled into a stiff pawing motion, as it was trying to connect instinctively but blindly with my right hand. I was then finally released from that internal torture. I awoke, stunned, dazed and slowly realizing that I had in fact fallen back asleep but becoming very scared this would continue whether I slept or not. The New Year was fast approaching with the countdown seemingly into its final hours when the intense heat and coiling effects took hold me once again. I was sitting in our living room, watching the Christmas editions of my favorite TV shows, wide awake and fully knowing how this torment would play its course. I stood up, hoping to outrun the demons from within, yelling “it’s starting again, please help” before eventually collapsing just past the kitchen door. What I of the rest of that night was very vague and surreal. The memory consisted of my parents and me standing at the ittance desk at the local hospital in Grand Rapids, Minnesota. I the soft lighting of the lobby and the harsh lighting of the hospital’s stark main entrance. I know tests were performed, but I only the lady at the ittance desk upon our departure. She mentioned as we were leaving that I was the second person who had come to the hospital that night with similar symptoms and we were the same age and had left with a diagnosis of epilepsy.

My parents and I then followed up with our family doctor. He prescribed Dilantin. What I thought would be a kind of medicinal cure, was not. I found out within the first days back at school that it would not be this simple. As the first hour English class resumed instruction, a strong pulsating, tingling sensation again brought me to a devilish frenzy. I ran to the teacher, frantically telling her that I had to go. Then I dashed out the door and down the narrow corridor screaming “NO” over and over again. She, with her petite stature and three inch platform shoes, tried desperately to keep up with me as I exited the corridor and approached the top of three flights of stairs. At that point, I realized that the seizure had fizzled out around my left shoulder, instead of marching upward and across the muscles of my body as it had done before. We then, with jittery awkwardness, slowly descended the stairs to the nurse’s station. My parents were called to come and get me, as I tried to explain to the nurse and the teacher the details of my recent diagnosis and how the medication was supposed to keep me safe.

Social Dilemmas

Even though the dosage of the Dilantin was adjusted to improve its effectiveness, the pulsating, tingling sensation that I experienced in English class continued to be the most frequent experience I would have. Though these seizures were stunted, dissipating at my left wrist or arm area, the threat of a generalized or total body seizure still existed. The medication was able to keep me functional, and I quickly learned how to gauge the severity of these sensations. I was then able to determine how close they were to generalizing and how I should react to those stronger internal vibrations. After that first experience in English class, I realized that I couldn’t immediately panic, because I only drew unwanted negative attention. I became more proficient at describing my seizures, but my focus remained limited to the sensations I felt, because I never saw external visible manifestations of a seizure. Even with the medicine minimizing my seizures, I was still concerned about the impact that my epilepsy would continue to have on my everyday school relationships. Ever since I can I was always considered a typical “tomboy” enjoying the rough-and-tumble activities of the neighborhood boys. Riding dirt bikes, climbing trees and swinging upside down on the monkey bars were just a few of the somewhat risky things I did in elementary school. By upper elementary school I had expanded my interests to a wide variety of sports. I had developed a particular interest in the team sports such as basketball, volleyball, soccer and softball. Through these sports, I developed most of my school friendships. It seemed to be the only tangible connection that I had with other kids. So, as I entered the realm of junior high school, my participation in the extracurricular sports programs became very important to me. After my diagnosis in the eighth grade, I worried that my social life would get turned upside down. My doctor assured me that, other than a temporary “static electricity in my brain“, I was normal in every way. Having this assurance, I continued to do many of the things that I participated in before I had my first seizure, including those extracurricular sports programs. I figured that even though there may be an increased risk of injury, I needed to continue on with those meaningful activities. My coaches did not seem too concerned with my

seizure disorder either, so I was still able to enjoy many successes while playing. My successes came in spite of the reality that while Dilantin had its minimizing effects, it still did not allow for my complete keenness. During games as well as practices, my concentration was consistently disrupted because of the tingling sensations in my left hand. These breaks in my concentration sometimes resulted in errors or missed opportunities, but luckily they didn’t last long or come in succession. Therefore, my performance was not negatively impacted enough to be “benched“. I learned to play through the brief distractions and shrug off the mistakes I made. Although I felt a little guilty when the mistakes affected my team’s momentum, I also recognized the dilemma I would be in if I were to disclose each unseen seizure episode to my coaches. Instead of receiving their constructive critiques, I would undoubtedly be withdrawn from the game altogether and that was the last thing I wanted. I did realize that my behavior was a bit selfish, but I also knew that my positive contributions to the team still outweighed my faults.

“Oh My God”!

Effectively dealing with my epilepsy and those “consistent disruptions” eventually became even more imperative to my athletic and social involvement as my I completed one of the most monumental transitions of my adolescence. Two years following my diagnosis, my family and I moved from the rural seclusion of northern Minnesota to Frankfort, Michigan. In Minnesota, I had kept a small core of friends who played volleyball or basketball with me but still felt self-conscious around the other kids. I sensed that they were still wary about and my alarming reactions to my ever looming seizure potential. Our move to Frankfort gave me a perfect opportunity to start over. I had matured a lot since that first disturbing panic in English class. By the time I entered high school I was able to more efficiently gauge the intensity of the oncoming seizure and had developed believable strategies for disguising my symptoms and removing myself from crowded situations. I took every precaution to ensure that my seizures or being a “spaz” remained my little secret. I also knew that a public display would not bode well on anyone’s mental health, so I felt my coping strategies were justified. In Frankfort, I was finally free of having to explain any distressful conduct related to my epilepsy. As it turned out, my personality and social awkwardness kept me from being popular but my sports participation continued successfully with those profitable strategies until my senior year. Then on the day of the final match of senior year volleyball season, I had that dreaded, secret-exposing seizure during the afternoon study hall period. I had just transferred from my “home room” in the stinky post-lunch cafeteria to the supposedly more tranquil setting of the school library. I was sitting alone at a table toward the right, front corner of the library when I felt the usual side effects of my lunchtime dose of medicine kick in. The side effects of Dilantin made me quite drowsy so I put my head down on top of my books for a small cat nap. It wasn’t long before I heard the librarian state, “This is a study hall—not a nap time. You are to work on your homework or I will send you back to your home room for the remainder of the period.” Despite her warning, I continued to drift toward sleep, until I was jolted awake by a familiar pre-seizure feeling. The

tingling sensations were barely noticeable, as I felt my body list to one side. I then tumbled off my chair and met the carpeted floor with a dull thud. This elicited an “Oh My God” response from the extremely freaked out librarian, and prompted a boy in the back of the library to announce to everyone that I was having a seizure. My parents were called. I regained consciousness to discover that I was lying flat on my back in a completely cleared out library. My mom and dad were sympathetic, but not surprised when the school principal insisted that I be taken home. I tried to convince the adults that I would be fine and fully recovered by game time but to no avail. They determined that it would not be “safe enough” for me to play in that final match. At that moment, I realized that I was always going to be viewed as some type of public safety hazard. When I returned to school the next day, a part of me wanted to tell the librarian that she should have “just let me sleep it off” and then maybe the fatigue would not have triggered my seizure. I later found out that the boy was able to recognize my seizure because he had a dog that had seizures. This was not quite the comparison that a teenage girl desired, so I decided to not draw any further attention to that episode by being “a Smart Alec“.

The Mental Bucket

Life After High School

The summer after high school graduation was one of the best summers of my life. I was just starting to feel the independence of adulthood by making friends beyond school cliques’ and their snooty requirements. I was working at the Frankfort senior center, from seven AM to three PM; hours that allowed me to be free to hang out at the beach for the rest of the day. My big draw was the beach volleyball courts. I was able to get into pick-up games quite easily, and met a lot of summer residents and older year—around residents with good skills and found quality competition. The beach however, was also a tricky environment for me. There were plenty of potential hazards that might trigger a seizure, such as the sunlight reflecting off the choppy waves on a windy day and ing cars reflecting the glaring sun off of the windshields or other shiny objects. Just like during my participation in indoor sports, the tingling sensations continued and were a recurring distraction. But, I loved the game so much, that I was willing to take my chances and play through my temporary angst. As days ed, I was forced to acknowledge the frequency of these tingling sensations and their varying intensities. I began to picture each tingling sensation as a drop of water that was dripping into a “mental bucket” and on the verge of overflowing. Then one night, my bucket reached its max, and I again felt the coiling of my body. This time, it felt as though my body had been turned into a loose piece of electrical wire that was being rolled up onto a giant spool. This seizure was yet another episode that started when I was a sleep, this time on the couch after I came home from the beach. My dad had been sitting in a near-by chair, watching TV when I was shocked into consciousness with the pulsating vibrations. He came over to me repeating, “Relax Sarah just relax.” This phrase was suggested by my original doctor when my parents told him how I reacted to the early stunted episodes. The idea was that if I could remain calm, the seizure would be more likely to dissipate before

convulsions started. This proved to be just wishful thinking on the part of both my parents and me. Even though it seemed to have no bearing on whether or not the seizure would generalize, I took ownership and tried to master staying calm, if nothing else to just divert my concentration from the physical pain as much as possible.

College Will Be Different

Although my grades did not reflect academic excellence by any stretch of the imagination, I was able to experience the autonomy of college, due to the availability of Pell grants and low-interest loans. Even before my epilepsy started, learning did not come easy to me. Throughout elementary school I was always one of the slowest learners, and regularly funneled into remedial study sessions for major subjects like reading and math. With these extra study sessions I was able to stay with my original peer group, and not get “held back“. Even in the early years of school, I knew that “flunking” and then repeating a grade would not have done me any good. The issue wasn’t that I wasn’t able or ready to learn, but that it just took more effort for me. I was lucky that I had ive parents and somewhat understanding teachers, who were also able to see beyond my learning challenges. This did not entirely erase my frustration however, because the study sessions did separate me from peers and ate up much of my “free time“. Many times I felt isolated and rather discouraged with school. Mid way through elementary school I had learned enough about how those study sessions were conducted and, more importantly, how they were perceived of by the other students in my grade. My frustration really reached its peak in the fourth grade, when my social acceptance was once again threatened by my teacher’s so called “educated opinions.” Fourth grade was the year that all of the kids in my class, for some reason, took the initiative to “be friends with everyone.” While this concerted effort had somewhat waned after the first month or so of school, I had, for the first time in my life, an actual group of friends, instead of just one or two other “outcasts.” During this time, I genuinely felt like I was “on par” with the other kids in my class. My inclusion however, would soon be jeopardized when my teacher proposed yet another remedial math class for me to attend. On this occasion, he entrusted me to deliver the note to my parents myself; instead of sending it in the mail or waiting for the parent-teacher conference. In my still immature way of thinking, I continued to resent this idea. I thought that

if I just didn’t deliver the note, then everyone involved would just forget about it. Of course the situation did not go away, and after a week I was feeling the “heat“. The teacher was told by the bus driver, he had discovered the note deliberately stuffed between the stiff vinyl seat cushions and the interior wall of the bus. I was then forced to endure the teacher’s in-depth lecture as to why my attendance was necessary, and on top of that I was given detention for the rest of the week. I again felt trapped by this “necessity“, but ended up trudging my way through it like I had done so many times before. Academically, fourth grade was not an entirely “bad year” though. I finally learned to read with confidence and it was the year I was introduced to the poetry. Through poetry, I developed an overall genuine interest in writing and I began to use it as a problem solving strategy. Writing and poetry provided an escape from the stress of my social and academic woes. Even as a child, I could sense my parents’ relief in knowing that I finally had found at least one reason not to hate school. They made sure to encourage even my smallest attempts to put my thoughts into writing, often sending those writings to my grandma and great aunt for additional affirmation. They also encouraged me to include poems with birthday or Christmas cards that I would make for my relatives. With this newfound interest and my ability to excel in gym class, due to my natural inclination toward sports and physical activity in general, I was able to succeed in my educational opportunities after all. By the time I entered middle school and later, high school I had become a proficient reader with an adequate level of comprehension, which allowed me to adjust my learning strategies. I kept my grades up just high enough to participate in my chosen extracurricular sports programs. My academic struggles were compounded by the mind-numbing side effects of my medication ever since my diagnosis. The fatigue that I attributed to that seizure in high school was undoubtedly the biggest reason that assignments did not get done precisely on time, but I did manage to get them done. While English composition continued to be, by far, my strongest subject, I still experienced obvious struggles in the math and science. I didn’t feel it was for lack of interest in these subjects, but for some reason I just could not the key components of the curriculum. Despite my scholastic difficulties, I did feel more optimistic about my ability to succeed in college because of my parents’ explanations that college was “different.” “College would be much more adaptable to my interests and strong suits,” they said. Although I still felt some apprehension, I packed up all of my

wardrobe and dorm life necessities and headed up north to Sault Ste. Marie, Michigan. I was hopeful and looking forward to a new chapter in my life and another fresh start.

Choosing A Career Path

A More Empathetic Perspective

My parents’ logic proved mostly correct and this time of experimentation and independence had many positive moments. In college, I finally felt socially accepted. I felt like most of the freshmen who were without their proverbial safety nets of parents and the friends that “they grew up with.” The discrepancy of my learning abilities was also mitigated. Everyone had their separate pursuits and d classes, so comparisons did not come into play and isolate me from the norm. Even though I still had to attend many study groups and tutoring sessions to my classes, I had control over choosing to participate. Attending these sessions was also more socially accepted, due to the accelerated pace and rigors of a college education. Retaking classes was viewed as a “bummer“, but was not unexpected. At Lake Superior State University, I developed many new friendships through my love of sports, particularly volleyball. While I only played in the intramural and eventually city leagues, I still found the thrill of a “good kill” or “nice up“. Because of this ion, I determined that I wanted to do something in the sports and recreation field. While many people suggested that I become a writer, I felt that my lack of finger dexterity needed for typing kept this from being a viable option. I also ired the people who were able to work with a more of “handson“, physically active approach. The “ho-hum” atmosphere of desk work really didn’t appeal to me. What I really wanted to pursue was a degree in exercise physiology or athletic training. I knew just from the introductory classes though, that I probably would not make the grades needed to complete the degree’s requirements. I decided to go a perceivably easier route, but still found myself fumbling through the coursework for a degree in Therapeutic Recreation. The curriculum focused on learning the human anatomy and physiology and the vast array of disabling conditions that can affect both the mind and body. While I knew that anatomy and physiology was classified as a “science’ course, I had

convinced myself that my ion for physical fitness and active lifestyles would help me overcome my academic challenges. There was also a psychology component to the curriculum that I more easily understood. I told myself I’d work as hard as I needed to make ing grades in the classes that would challenge me. I was always aware that there was a sizeable chance that I would “flunk out“, but my determination and stubbornness would keep me going. The goals of Therapeutic Recreation were in many ways like those of both physical therapy and occupational therapy, but with an emphasis on “play time” activities. The idea was that games and hobbies could be used to encourage or motivate people to keep up with their physical or cognitive rehabilitation and have as normal of a life as possible. With a degree in Therapeutic Recreation, I would be able one day to work at developing and restoring people’s potential by finding ways to integrate their physical and cognitive skills into existing leisure activities or by setting up tailored recreation programs for them. This would include modifying equipment, game rules and other aspects of the activity in order to allow for participation. I had always considered myself a true sports enthusiast and as an adult, also recognized the significance of sports and recreation in our culture. Therapeutic Recreation or “recreation therapy” as it is sometimes called, also focused on the independent decision-making involved in determining the quality of our recreational pursuits. When I entered this curriculum, The Americans with Disabilities Act was a recent legal enactment which expanded the possibilities for participation in many social venues. This act made sure that public buildings are built or modified where possible to include wheelchair ramps, elevators, larger doors and restroom facilities, handicap parking and other amenities we have grown accustomed to. These amenities allowed people with disabilities to enter many areas that had previously been inaccessible. As a Therapeutic Recreation Specialist, one of my duties would be to maintain this access and to continue to advocate, or speak up for, each person’s right to choose to participate in public social events. The disabilities that were addressed in the Therapeutic Recreation coursework not only included the physical ailments and cognitive impairments, but they also mentioned what were called the “hidden disabilities.” “Hidden disabilities” were comprised of the medical conditions that are not immediately apparent or constantly inhibiting. They included epilepsy, even though I did not personally think of it that way.

I started the curriculum ready to learn about other people’s larger, more distinguishable disabilities only to realize just how little I knew about my own medical condition. Like so many others, I connected epilepsy solely to the convulsive nature of a “grand mal” seizure, but learned that there are actually different classifications and many types of seizures. I learned that seizures are more accurately named according to the kinds of muscles involved and whether or not seizures were generalized, involving the entire body, or partial, only involving certain functions. Any impairment of consciousness is also documented in order to identify a person’s seizure type. The lesson stressed the idea of impaired consciousness since not everyone with epilepsy experiences a “complete black out“. Some people can report a limited acknowledgement of their seizures and surroundings. This distinction made the most sense with respect to my own experiences, since I had always maintained some degree of “internal awareness” as each seizure occurred. With this knowledge, I tried to classify what category my seizures belonged to. While I still had only a limited idea of what my seizures “looked like“, I knew that they definitely involved muscle rigidity, referred to as “tonic” and an impaired but not a total loss of consciousness. I also knew from my family’s s of my seizure symptoms that they involved some shaking or “clonic” features. I determined based on these known details that my seizures were probably the “tonic-clonic” type. This was the term that most accurately replaced the grand mal reference that I was used to. Despite the risks of the “generalized, tonic-clonic” episodes and the annoyances of the tingling sensations, I believed that with this degree and training, I could still safely work and contribute professionally to a more robust society. Given all of my own struggles, though minimal in comparison to the “disabled populations“, I had a more empathetic perspective concerning this career. Just like the people that these services are provided for and marketed to, I was still determined not to make my condition the definition of my existence.

The Theatrical Cavern

Though I did not define myself as disabled in any way, I still had to deal with the realities before me, those being the stress of college itself and therefore an increased possibility of seizures due to stress. Throughout those first years in college, my seizure control continued to slowly wane. So, when my grandmother sent my mom a magazine ad for Felbatol a “new” anticonvulsant medication, I brought it to the attention of my family doctor. He agreed to let me try it and it proved to work as d. This medicine was much more effective and had fewer side effects than Dilantin, which was a standard prescription for many first-time patients. My trial was short-lived however, because of a rare but deadly side effect. I had only been on Felbatol for about nine months when my doctor informed me of this side effect, and promptly took me off the medicine. He cited that although there were only a few reported cases, the risk was still too significant for me to continue on this medication. This infuriated me, and I refused to go back to Dilantin. So, he then prescribed Tegretol, another drug with a similar potential for controlling seizures. Unfortunately, this medicine proved to be completely ineffective. I began to regret my obstinacy when I was again jolted awake from a late afternoon nap in my apartment bedroom. Although I had learned not to panic early on in my life when a seizure began, it was still second nature to try to literally out run the attack. I was only two steps into this futile attempt when I dropped into the same type of theatrical “cavern” and dream state that I experienced on the school bus so many years before. The intense pulsating, tingling sensations again moved up and toward my head, and my muscles began to contract painfully as though I were experiencing “a traveling charley horse“. At this point, I started to innately focus my mind on those internal mental and emotional battles, as if I still had the capacity for logical, coherent thinking. When I was no longer able to hear, see or respond to any external stimuli around me, this convoluted awareness morphed into a dream that brought me to the water’s edge on a beach. I was laying face down, with my head crooked toward the water, slowly succumbing to its ebb and flow. The water was lapping over

my body, affording the only shallow gasps of air and perceptually no exhalation. Then, just like that original “dream“, this vision also disappeared suddenly leaving me with the same uncertainty and residual pain. I reluctantly went back on Dilantin, but made an appointment to see a neurologist near my “home town” in hopes of “getting my hands” on that now questionable drug. I left college for an extended weekend so I could ask for the prescription from a doctor that would surely have “more clout” when it came to justifying risky neurological medications. She just “blew me off“, saying sternly that epilepsy was just something that I would have to live with. Dilantin provided an adequate level of control and therefore it wasn’t necessary to put my life at risk. I left the doctor’s office disappointed that I would still have to endure the “occasional” experience of tortuous progressing seizures that took me into a bizarre dreamlike world. As I continued to experience those periodic episodes, I began to recognize certain reoccurring “plays“. Although each scenario seemed to feel slightly familiar during the seizure, I still had my frightened emotional response. I’d have the impression that “this time was it“. This time, the “nightmare” would surely come to full fruition. Only after I regained full consciousness was I able to entirely acknowledge “the drama and recall it with some detail, but all I could focus on was my intense post-seizure head and stomach aches. The “beach” drama was just one of the visions that entered my knotted consciousness on a regular basis.

The Full Brunt

My Boyfriend’s First Experience

While my social life and friendships revolved mostly around my hobbies and studies, I still lived with many different people pursuing an assortment of careers and belonging to different social networks. It was as a freshman living in the dorms, that I met Jason. Meeting Jason was one of the few enduring friendships outside of my sports participation. As our relationship deepened over the next couple years, I told him of my seizure disorder, but it took some time before he was unlucky enough to witness the full brunt of my condition. His first direct experience with my epilepsy came during my first trip to Iron River, Michigan, his hometown. The usual stress of meeting the family never really developed and my first visit with Jason’s family was quite cordial. His family was just as excited to meet me as I had been to meet them. They set me up in one of the few rooms that had not been taken over with the usual “empty nest” clutter. This guest bedroom was separate from Jason’s old bedroom, even though Jason was just as willing to share his “space“. As soon as everyone went to bed, Jason came to my room for one last good night kiss and some cuddle time. I was lucky that he remained with me because that night, I experienced an unusually long seizure with an extended physical aftermath and a lot of emotional dismay. I had fallen asleep only to be awakened by the coiling of my left arm and a sense that my head was being distorted and floating away from the rest of my body. The coiling sensation took over my entire body and I stayed tightly bound for what seemed like forever. Finally, the seizure ended and I felt fatigue overwhelm me. When I “came to” and recovered some of my coordination, Jason gave me another pill of Dilantin. I then stumbled to the bathroom to get sick. I stayed in the bathroom for several minutes feeling queasy but I was unable to throw up. I finally gave up on the idea and staggered my way to a short set of stairs leading to the living room. I sat on the top stair sobbing as quietly as I could to keep from waking everyone else up, until the post seizure symptoms finally subsided

and I felt secure enough to go back to bed. Jason chose to stay by my side for the duration. He displayed more tolerance than I could’ve expected from anyone. His mom found out about the incident after finding a pill on the bedroom floor that she had analyzed at the local hospital. She asked Jason who then explained the situation to her and she asked why he hadn’t sought out her help. While her nursing background would have been a beneficial resource for him, I found it refreshing that he handled the situation himself and byed the announcements and horrified responses that I had learned to expect. I felt fortunate that Jason was able to accept me and the periodic tonic-clonic episodes. He was able to somehow find the “light” through all the tarnished moments of chaos and static. Over time Jason grew acclimated to my disorder, and he began to recognize my nonverbal signs of distress. My natural reaction to the onset of stronger sensations was to make a fist with my left hand and cup my right hand around the fist. Sometimes, I also found it necessary to close my eyes, turn around or leave the immediate vicinity of what had triggered me. Many times, shutting out or quietly moving away from the trigger was all that was needed to alleviating the problem. We began to refer to these incidents as “ticks” because their durations were usually less than thirty seconds or ticks of a clock.

Friendships

Even though Jason was privy to my chronic condition, most of the time our external friendships were free of these interruptions. As an adult, it wasn’t shame that kept me quiet but the opportunity to discuss my condition rarely came up during the natural flow of conversation. I did inform some of my friends as a freshman and sophomore in college, but it was always a fleeting comment made, with no real questions or dia response to my disclosure. The majority of my seizures occurred while I was alone or during the late night or early morning hours, so I was never really forced to initiate a more in depth discussion. There were a few exceptions however, such as my first experience on the school bus and the high school debacle. One of the most notable adult exceptions happened in the latter years of my college attendance. By then Jason and I had moved off campus together, and had gotten kind of bored with many of the usual oncampus social events. One night Jason met with some of our friends at our house. I arrived later after playing in a volleyball league. Upon my return, I walked through the door and I felt a weird déjà vu type of feeling. I making a kind of visual transition between the full lighting of our kitchen and walking into the more dimly lit living room area. As soon as the temporary blurriness faded, a continuous, rapid stutter of “da“, “da“, “da” began. Then the actual muscles affected became evident. Jason recognized the onset and was able to lay me down on the kitchen floor until my convulsions ed. I awoke to hear Jason giving a quiet explanation to our friends. It wasn’t too long before they decided to go home. Even though Jason was there and once again handled the situation with dignity, our friendship with this couple kind of dissolved within the days after the incident. This wasn’t too disheartening because the friendship was a shallower one, but it did cause me to question how emotionally attached I wanted to get to people. I didn’t feel that they suddenly considered me a lesser person, but just like high school, no one felt comfortable enough to be around or responsible the next time “all hell broke loose“, even if they had basic first aid training.

Throughout those final years in college, I continued to stay on the fringe socially. I figured that I was better off keeping my interactions short in order to minimize other people’s potential discomfort. This strategy would soon be abandoned however, as I had to prepare myself for the “real world” of full-time employment and all its respective personal interactions and responsibilities.

My Internship

An Honest But Disrespectful Response

After five years of long days at the computer lab, typing term papers at a snail’s pace and many “retakes“, I concluded my studies with a three-month nonpaid internship. I had felt “burned out” from the rigors of college for quite awhile at that point, but resolved to stick it out for my integrity. So, I entered this final stage with a mix of relief and enthusiasm, but was very disappointed when it ended with the same honest, but disrespectful, Oh my God type of incident that I experienced in high school. When the internship began, I informed my supervisor about my condition. She asked me if it was under control and I said yes, having only been experiencing those “ticks” for over a year. She said that it wouldn’t change anything, implying that she was tolerant of these kinds of issues and the educational experience would remain intact. The internship was quite stressful, and it was only a matter of time before the stress caught up with me. One day, only three weeks into this new commitment, I was co-facilitating an art class. The art room was one of the largest rooms in the activity department, with large panoramic windows on the east side of the building. These windows allowed for a cheerful amount of natural light to enter the otherwise bleak existence of a small city psychiatric hospital. The windows overlooked a busy parking lot against the backdrop of the heavily wooded landscape. As scenic as it was for an urban area, it proved to be a kind of pitfall for me. During this class, a flash of sunlight, undoubtedly reflected off the mirrors or chrome of a ing vehicle, triggered a generalized seizure. While a nearby nurse at the facility handled the physicality of the event, my supervisor was there to inform him of my condition. The seizure seemed short in duration because I stayed seated in my chair. Once “I came to” I heard my supervisor ask if I was going to have another one. The nurse said no and the situation was then turned back to her care. Then things quickly deteriorated.

She didn’t understand that my coordination was temporarily impaired immediately following a seizure. She was still quite shaken up by the circumstances and intent on returning all to a controlled authoritative environment. She insisted that I sit back in the chair to restore a professional appearance. I tried my best to comply with her requests, but only found myself slumping further forward. After a while, her requests became demands. It became obvious to me that our working relationship would forever be compromised. I was then taken to a “more comfortable” family visiting room and given a glass of water. My coordination, still not completely recovered, caused me to spill the water all over my lap and the puffy, plush couch cushions in that living room setting. This only caused further irritation to my supervisor. After I regained most of my coordination, I was given a ride to the local community college where I was staying in one of the dorms and I was left there in a mix of disbelief and uncertainty. After taking a week off, I returned to a very awkward atmosphere. By the end of that first week back, my supervisor determined that there was no way that I would this internship. I regrouped and found another internship and finished my degree, but I knew then that my career, like other facets of my life, would be constantly subject to that virtual asset—liability scale with less than favorable measurements.

Employment And Epilepsy

Upon my graduation, I settled into the routines of a small variety of nonprofessional jobs. The pay was minimal but at least I had the satisfaction of declaring myself employable. While these jobs utilized some components of my education to varying degrees, they were mainly part-time, seasonal or temporary positions. Although I did perform well enough to keep these positions, I still felt as though I only achieved minimal successes in those settings. I figured that if I displayed enough enthusiasm and persistence, I would eventually overcome this feeling. I would finally experience the full enjoyment that I thought I would acquire with my degree. Even though I was plagued by a desire for an unattainable perfectionism, my employment was only somewhat impacted by the seizure control, because my seizures continued to occur outside of my job schedule. So, for the most part, I was able to keep my personal life with epilepsy separate from the work relationships. This became important to me because, after all of the experiences with friends, school personnel and supervisors, I realized that seizure episodes were handled more according to the personalities of the witnesses as opposed to any prior instruction on my condition. When the seizure control did present a problem, Jason would assist me with transportation and other things so I could continue to work, but ultimately my pay rate did not warrant the added inconvenience. Many times relocating for Jason’s career provided me with an alternative and perceptibly positive reason for my departure. My perception of how these situations tended to be handled was confirmed during the only time my co-workers witnessed a seizure. I was employed at an adult foster care home at the time. Seizure disorders are quite prevalent in this population but it did present additional concerns among my peers, such as when transporting residents to and from various appointments and social outings. The situation was proactively addressed by making sure that I was always scheduled with someone else that could provide that service. Jason was able to adjust his schedule to accommodate me for awhile, until a career move once again provided a more convenient and advantageous exit from my employment.

The episode at the AFC home was not only handled differently, but the seizure itself was also unlike any of the previous. This was the first seizure that manifested convulsions without impairing my coordination or consciousness. Instead, it only produced a ridged left arm and the same rapid, stuttering gibberish that was witnessed by our friends. When it began, I reacted with my standard practice of trying to “walk it off” or remove myself from the probable trigger. I walked around the front yard but eventually looped back into the living room still displaying the physical symptoms. A co-worker calmly stayed with me but did not draw further attention by clearing the room or physically manipulating me. With time to regroup, I was then allowed to continue working. I was not sent home as had happened in previous public episodes. Even though this was not an all out internal assault like a generalized tonic-clonic seizure would have been, the calm observation and peer gave me hope that not everyone felt compelled to dramatize the event more than necessary.

Return To The Neurologist

Jason’s latest career move took us from Michigan’s Upper Peninsula to the land of the “trolls” below the Mackinac Bridge. We would have preferred to stay in the eastern UP, but we were at least closer to my family “down below the bridge“, in the Lower Peninsula. I also had access to better medical services associated with the larger more metropolitan area of Traverse City and its neighboring communities. We settled into our new home in Cadillac, and I began to see a neurologist for my seizure disorder, instead of continuing to bumble along with family practitioners. Due to insurance issues, I was only able to be referred to the same neurologist who had blown me off all those years ago. Both she and I had gotten married and changed our last names between those two appointments. After I recognized who my appointment was with, I thought about trying my luck with another neurologist in the area. But, if it meant paying the full price for each doctor visit instead of the ten dollar co-pay for the same advice, I figured that our personality differences could be tolerated. She did give me a little more respect this time, because I came to her with a referral, but I still sensed her indifference and disregard. Despite her negative appeal, I figured that she still had a better understanding of brain disorders and their treatments, so I was better off with her care. This time, I was able to explain all of my symptoms, including the tingling sensations or stunted episodes and “stuttering” incidents to her. She said that the tingling sensations were “just auras” even though I knew that those were the beginning stages of a progressing, larger seizure. She called the stuttering incident a partial seizure because the convulsions did not involve my entire body. She only seemed interested in fully progressed or generalized seizures. These were the seizures that had an increased potential for injury and required additional restrictions, such as no driving, operating machinery or, as she put it, “any other activity that could hurt yourself or other people“. I understood this advisement as the “do not do anything potentially dangerous or that would otherwise scare the living hell out of the unsuspecting public” speech or, in short, “the public safety hazard speech“.

She amended my diagnosis to complex-partial epilepsy to reflect the various symptoms that I reported to her as well as the “small scar” that was shown on an MRI (magnetic resonance imaging) brain scan. Even though she did not seem too concerned about the everyday disruptions of the” auras“, she did understand my contempt for Dilantin. She added another medicine, Trileptal, to my regimen and I eventually switched over to it as a mono-therapy. This medicine managed to keep my generalized seizures at bay for a while until it too seemed to lose its grip. I was then told once again to deal with the occasional “break-through” seizure.

Dark Cavern—Myself

Entering from consciousness One thought Strange though familiar One feeling of panic Each time different but similar No escaping my boundaries Sight focusing inward Attempts at sounds Awkward and disturbed A stormy siege Movement disorganized Uncontrolled— Like rolling thunder Taking its course Then there is calm An end to this dark cavern— And I, myself begin to realize

“Dark Cavern—Myself” was written soon after I started seeing a neurologist about my epilepsy. It is a poetic rendition of how I tried to explain my seizures. It speaks to my psychological state as I felt the physical pain march across my body during those tonic-clonic seizures. It also touches on the idea of the visual imagery in the moment of “my sight focusing inward“.

The “Professional Position”

Dealing with “occasional” seizures became nothing more than a way of life for me so, I decided to move on and make the most out of my college degree and my life in general. I felt pressured to pursue my own career, even though I knew that I would probably end up experiencing the same frustration that I ed so well from my first internship. Because I didn’t want to be seen as a “quitter“, I continued to look for a more “dignified” job. Finally I landed that coveted position, but still found myself a fledgling and feeling inadequate despite my preparation and positive presentation. While I contemplated “giving up” not too far into this employment, my decision was really confirmed when I yet again succumbed to another seizure and its climactic visual imagery. Working alone late one night, I again toppled onto the carpet and into the coming attraction of my own personal horror film. This time, the scenario concentrated on the sounds that I heard within my head as the “static” set off the area of my brain responsible for sensory interpretations. The sound I heard resembled a lawnmower moving closer to me as I envisioned myself lying face-down on the grass completely paralyzed. The fear of a painful confrontation with the lawnmower’s spinning blades brought on an overwhelming panic. Then the vision once again vanished, leaving me to experience the remaining convulsions and fatiguing aftermath. When I regained consciousness and was able to recognize this drama as a “repeat” but my concentration quickly switched to the post-seizure rug burn and the awful head and stomach ache I was feeling. By the time I had resigned from that “professional” position, I realized that my primary objective and justification for my college attendance as well as being employed was that I might be regarded as normal. I went back to the less stressful environment of nonprofessional positions that still capitalized on my interests and utilized at least some elements of my education. Eventually, I lost interest in obtaining a career all together and the illusions of normalcy that it would provide.

Starting A Family

Though I still felt somewhat inadequate, working in less stressful jobs allowed me to enjoy the company of coworkers and both the youth and adult clientele that we served. It was through these moments that I found a completely different direction that I wanted to take my life. After sharing family stories and my experiences of working with kids, I soon realized that I just couldn’t forego those pivotal experiences of having children. Although my family doctor in Cadillac questioned my ability to get pregnant at my initial appointment, I still had the mindset that it would eventually “just happen.” His concern stemmed from the fact that I had already been living with Jason for a few years at that point without ever having any indications of impending motherhood. After a few more years of only working with kids and hearing other parent’s narratives, I had gotten impatient and decided to actually try to get pregnant. As with all of my other life ambitions, this too included its share of tribulations and disappointments. Along with the limited seizure control, Jason and I had to deal with the challenge of infertility. Infertility felt like another inadequacy on my long list that I had to personally contend with and now I had just dragged Jason into the midst of it. I told him that if I couldn’t have any kids that it was okay if he wanted a divorce. I was utterly sick of being a “weak link” or just plain unable and I didn’t want to be the epitome of those traits anymore. I honestly believed that being a mom was something I would be good at but, once again I lacked the ability to prove it. He kept telling me that we were in this struggle together but, I feared future resentment if I couldn’t conceive. After several months of “trying“, I began to discuss the issue with our family. My parents were initially apprehensive with my decision to start a family but understood my reasons and always ed my determination to become a mother. Jason’s family and childhood community quickly sympathized with our troubles and set up prayer chains on our behalf. As our families continued to talk about the subject, I became convinced that it had to be something minor because, other than the epilepsy, I was basically

healthy and within the normal age range of an expectant mother. My sister in law kept telling me about her other family and friends that had nothing more than a simple virus or clogged fallopian tubes and insisted that I should not give up hope. I went to see my family doctor and concluded that I should seek the help of a gynecologist. I made an appointment with a local gynecologist, who ran all of the standard fertility tests. In all of these tests, Jason and I checked out healthy so I agreed to try a medicine that was supposed to increase the amount of eggs that mature each cycle of the ovulation. This medicine was nothing more than a nightmare, producing vast mood swings and no change in my ovulation. We pursued next artificial insemination which proved to be once again ineffective. Next I was referred to a fertility specialist, who again ran more tests with no clear reason why I couldn’t conceive. With all of this information we then had to make the decision of what to try next. Should we try to go the adoption route and risk being disqualified because of my medical condition or continue on with the fertility doctor? The statistics were still in our favor for me to carry a healthy baby to term. We knew that we did not have the money to just “jump ship” and pursue the adoption avenue right away. We decided to try invitro fertilization. The process of invitro meant daily injections of hormones, “egg collections” and Jason’s “brown bag” contributions. These, along with the fertility specialist’s know—how, would hopefully enter us into the realm of parenthood. When all these things were finally “mixed,” it was determined that the percentage of the fertilized eggs was very small in comparison to the amount of eggs that were “harvested“. Even though our chances were quite slim, we were thankful to still have some “viable” hope. Each time I went through the actual implantation process, we were given an educated guess of our chances for success and a couple of glossy photos of the microscopic embryos, which looked like tiny bubbles suspended in aqua colored water of a swimming pool. After a couple weeks, I returned to the clinic for the official pregnancy test and waited anxiously for the result. The first attempt ended with heartbreak followed by more months of the same. After each negative answer, I sauntered outside to our backyard fire pit with those pictures of those tiny bubbles in the midst of that pretty blue, my written thoughts of the month and a box of matches and set my hopes ablaze like a pitiful self memorial. I’d stay there until each tarnished image had given way to

a fragile, singed gray pile of ash that were my dreams and desires of the last few weeks. Then, I picked myself up and prepared for the next go around. After all of those dashed attempts and a multitude of prayers, I finally became pregnant. It was a very tension filled time, and without question it was also my greatest lifechanging experience.

Pregnancy

The Projected Agony

It was no more than one week after we heard the good news that I started “spotting” and felt my heart sink with the prospect of “trying something different.” I went back to the fertility doctor and braced myself for the disappointment. I hopped up on the examining table and awaited the doctor’s confirmation. Then I heard it—the dreaded “oh no.” He then followed up with “you have three.” I leapt off the table as though I had rocket boosters on my feet and danced around the tiny exam room. He then said “You don’t understand.” This is a very difficult pregnancy.” I replied “I don’t care” and got ready to share my excitement with Jason, since he had been unable to go to the appointment with me. I left with a referral to see a perinatologist, a doctor specializing in high-risk pregnancies. My doctor cautioned me about spreading the news to friends and family too early. “Just because you have three now does not mean that you will be giving birth to three,” he said. I called Jason from the parking lot. I could practically feel the pulsing of his jubilation through the phone, but I also gave him the same caution about not telling the rest of our family, until after the first trimester. The pregnancy continued normally, with the exception of quicker weight gains than a singleton pregnancy. It was this exception, and the drudgery of dealing with the all day version of “morning sickness,” that made it impossible to correctly regulate medication doses to control the seizure potential. I first started experiencing problems with seizure control about two months into my pregnancy. I had yearned for this experience for so many years but the high risk reality soon curbed my enthusiasm and tenacity. I was alone one afternoon when the first “big seizure” hit me. When I regained consciousness I was lying on the floor only able to move my head from side to side and thinking “what have I gotten myself into, maybe I don’t want to go through with this.” These were devastating thoughts in light of all the painstaking effort on my part to make pregnancy possible. By the time I regained

my coordination, I realized that I may never receive the gift of pregnancy again. With this understanding, I knew that I was past the point of no return, and I needed to find the fortitude to endure from that point forward. I called my neurologist to inform the office about my situation and stated that I was just starting to have problems with seizure control. The receptionist said that they usually didn’t get involved until after the first trimester, when weight gains become an issue. The lady obviously didn’t understand carrying triplets accelerated the process a bit. After some “run-around,” I finally got an appointment for the next week. At the appointment, I was given a lab request for med level check and told that by the end of the next month, they would no longer be accepting insurances. Upon hearing this, I again thought about trying my luck with another neurologist but thought that I should stay put where the doctor knew my history—this wasn’t the time to be shopping around for unknown doctors. At two and a half months along, I again thought I saw the beginning signs of a miscarriage. Jason took me to the obstetrician’s office and he was able to confirm that the babies were still there and active. I couldn’t even begin to describe my relief. My doctor put me on “bed rest” but it felt more like “house arrest” because there were no definite time limits on normal daily living activities. He just advised me to keep my exercise to a minimum. He also mentioned that a “multiple pregnancy” usually goes longer without the stress of a work environment. I had already quit one job due to its physical nature and frequent bouts of morning sickness but had continued on with my less physically demanding job. Now, it was time to inform my other employer of my doctor’s advisement to stop working. Thankfully, she was very understanding, and did not require me to give her the standard two-week notice before quitting. My coworkers were genuinely concerned and gladly took over my scheduled hours. A couple of weeks later, I visited the perinatologist who said that those signs are a phenomenon of triplet pregnancies, thought to be caused by a rapid expansion of the uterus at that point in the pregnancy. This news calmed my nerves a little but I still continued with that “house arrest” for the remainder of the pregnancy. The idea that we would go through this time with bullheaded independence was the plan but it was entirely erased from my mind by the end of the third month and the announcement to our families. By that point, the pregnancy began to require more emotional and physical assistance than even Jason could provide. Since Jason’s family lived so far away from us, they mainly contributed spiritual

encouragement and emotional counsel. My parents still lived in Frankfort, which was closer to our house, so they were able to provide much of the physical aid as well as boosting my morale. They accompanied me to my frequent doctor visits as Jason prepared for his “last hurrah” at deer camp before the babies arrived. By the time he left I had been experiencing many of those “stuttering” seizures like the one I had while working at the AFC home—but at least the generalized, tonic-clonic seizures held off.

Our Move

Not only were we dealing with the tenuousness of those first few months of my pregnancy, but we were also contending with the fact that Jason’s office had moved from Cadillac to Traverse City. While the company move did not impact me directly, for the sake of commuting to and from work, Jason started a house building project of our own in South Boardman, with the help of a contractor. After a few months, our new house was ready for us to move in and we prepared for the transition right before Christmas. Although we anticipated this move, it wasn’t the best time of the year to be shifting gears and moving house. It really wasn’t advised with a high risk pregnancy and my obstetrician made sure that both Jason and I were well aware of it, but we had already been committed to this move. He told Jason that “she is the last thing to be moved out of the old house and the first thing to be moved into the new house“. Jason being the loving and ive husband gladly complied. We also planned to transfer to another obstetrician in Traverse City. He was equipped to handle triplet pregnancies and the delivery at Munson Medical Care, a larger hospital with a more advanced neonatal intensive care unit. From that point on I was taking regular trips into Traverse for my appointments. It did make it convenient though, because my neurologist’s office was also located in Traverse, so the two appointments could be made for the same day. Combining the trips was the most practical and beneficial way of doing things since I continued to have problems with the medication and seizure control, and the stress of how these issues could affect our babies’ health.

The Medication Issue

How Long Will It Take

I was still hounded by nausea well past the first trimester’s hormonal adjustment which continued to exacerbate the medication issue. Prior to pregnancy, I took for granted that the medicine stayed in my system, with only the few typical side effects. During this phase of my life however, I had been dealing with the question how long will it take Trileptal to be absorbed by my body. The neurologist could give me no definitive time frame. I had to figure it out on my own. As it was, I could rarely swallow anything without throwing it up within a half hour later. Many times I ended up taking multiple doses, in order to assure myself that a full dose was absorbed by my body. Obviously I went through my prescription faster than expected and required additional prescriptions, with higher doses. My neurologist was unhappy with my self-regulation but there were few alternative options. The ill-advised self-regulating almost insured a “toxic” reaction, when a single dose ended up being sufficient and my blood level became too high. This toxic reaction felt similar to being drunk, with an added kind of psychedelic attribute. The first time the psychedelic effects took hold of me, I was lying on the couch after my usual post-dinner nausea and multiple trials of “keeping the medicine down“. The fatiguing side effects began to kick in and my mind relaxed a little. What I felt next however, was anything but reassuring. The fatigue was quickly followed by a numbing feeling in my mouth and my tongue started to feel as though it were two inches thick. My vision then began to distort with wavy lines similar to watching an old dying TV screen when the picture would flip upwards in a series of thick, wavy bands. I immediately panicked and found myself displaying the drunken stagger of an alcoholic. Jason rushed me to the ER where doctors preformed the usual blood pressure and heart rate checks and brought in an ultrasound machine to evaluate the babies’ condition. The babies were “hanging in there” but I still had to wait for the side effects to dissipate. From that experience on, I suffered through this

“high” many times and eventually learned to sleep it off. For the rest of my pregnancy, I was concerned about what this medicine was doing to our babies. My doctor and I tried everything to combat the extremes including taking massive quantities of liquid pediatric doses without success. At that point I began to wonder for the babies’ sake, if it would be better to forego the medication all together. But, both my obstetrician and my neurologist advised against it because of the risk of severe seizures and the potentially serious injuries that could result from falls or other similar occurrences. In the last couple months of my pregnancy, I was having weekly appointments with my neurologist, as well as my obstetrician. My mom had accompanied me to most of those appointments by that time. We had a routine of having morning appointments and then going out for breakfast afterwards. While I seemed to survive the nausea during breakfast, the toxicity of the Trileptal did not allow me to enjoy that reprieve. One morning the toxicity became even more pronounced than usual. After my appointments, my mom and I proceeded to the Flap Jack Shack for our usual breakfast. As I started to hoist myself from the booth after eating, the drunken stagger kicked in and I of course tipped over. My mom assisted me to another booth where I stayed with my head down hysterically asking her, “What is this doing to my babies?” She tried to assure me that the placental barrier was strong enough to filter out the drugs, but all I could think about was a kind of fetal alcohol syndrome and the guilt I would feel with that prognosis. Everyone else in the restaurant was obviously concerned but thankfully left my mom to handle the situation. Much to everyone’s relief, I finally regained control of my emotions, as side effects subsided and we promptly left. I did return the next week, so I could give a limited explanation to the restaurant staff and calm their nerves. I think they appreciated this and were then more able to continue to enjoy hearing the exciting news of how the babies were progressing.

The Feature Presentations

A Dramatic Change

As my body had continued to expand throughout the various stages of my pregnancy, I became increasingly attentive to the “feature presentations” that played out in some of those tonic-clonic seizures. You see, just as my body size and shape had changed, so did the focus of those internal plays that accompanied my seizures. This change became undeniable as I approached the third trimester. I began to recognize one theme in particular as increasingly meaningful. This drama concentrated on the feeling of falling or tipping over and was markedly different than the previous visions. The scene opened with me sitting on some type of city bus, reminiscent of my first seizure which happened on the school bus. Just like the vision on the school bus, my surroundings appeared to be dimly lit but, this time I sensed a more comfortable atmosphere. I didn’t experience the temperature extremes or rapid fluctuations that I felt during the original “dream.” While I felt more confined in this setting, I still had more leg room than a typical school bus afforded. The seat also had a little more cushion to it which gave me the impression that I was on different kind of bus. No sooner was I able to acknowledge my surroundings when the bus suddenly tipped onto its side. I found myself spilling into the aisle, unable to grab anything or even brace myself for the fall. Instead, I landed head first onto the floor, completely paralyzed and exhibiting only a fixed blank stare. As I anticipated the bus to continue its rolling momentum, the familiar fear of doom began to set in. This is where the drama began to deviate from the usual hanging climax of horror. Instead of disappearing from my mind without a true conclusion, I had a small breakthrough in conscious clarity, a revelation of sorts. This revelation came to me as a reassuring thought and a momentary sense of acceptance and resiliency.

I did experience this vision earlier in my pregnancy, however it was in this latter stage that I was not only able to acknowledge its significance but was also able to recognize the words as words I had heard before. The recurring vision slowly raised my acceptance level and I really began to appreciate its subsequent affirmation from that point forward. Though I recognized the words as the same, regaining full consciousness still never afforded me the ability to them exactly despite many attempts. Because my brain needed some extended time to “reboot” itself to full function, I figured this was the reason for my lack of recall. The sentence structure seemed complex, as though it was a carefully written age, but the message was definitely simple and profoundly insightful. After all of my attempts, I could still only paraphrase the sentence as “when I get off this bus, I will be all right.” While I recognized the entire thought as significant, I believed that it was the one ordinary word “when” that gave me a newfound acknowledgment that I was safe to return to a fully functioning life.

Distressing Phone Call

I sorely needed the kind of internal resolve that the “bus” drama provided, as my brain and body continuously experienced that besieging electrical storm. The “lightening in my life” was probably the most intense when the perinatologist began to prime our babies for the impending entrance into the proverbial “murky waters” of this world. Between six and seven months along, I was given one of two doses of a steroid to prepare our babies lungs for an early delivery. By the next morning, I was experiencing the full impact of the prescription warning labels that Jason and I had scoffed at. One of the potential side effects was a reduced effectiveness of anticonvulsant medications, but it was only listed as a “potential” so I didn’t take it too seriously. Then I had two generalized seizures within one hour of each other. The first one hit me just before Jason was going to get ready for the day. It didn’t take too long for me to recover from the seizure. Jason then showered and was out the door within fifteen minutes later. He made sure that I was okay before he left, and I waited a few more minutes before I “waddled” to the more comfortable conditions of our living room couch. As soon as I sat down, I was overtaken by the second seizure. This was the first time that I’d ever had two seizures in such a short period of time and I wondered what might happen if this series were to continue. When I regained all of my faculties, I frantically called Jason. My most immediate concern of course, was how this episode would affect the health of our unborn children. I have only limited memories of anything after that distressing phone call, so this is Jason’s . Jason had rushed out the door, although not with excitement, to go to an early morning dentist appointment. He said that he had just been seated in the dentist chair, getting the x rays when he received my call. Upon hearing my distress, he rushed out the door, still donning the not so attractive blue paper bib around his neck. He then had to traverse his way from Cadillac through the perils of a major snow squall to the rural “goat path” leading to our South Boardman house. When he finally arrived, I managed to choke down some more Trileptal in attempts to

prevent another episode. We grabbed the second dose of the steroid, and again braved the storm on the way to the emergency room at Munson Medical Care. At the ER, the now expected “high” of my medication kicked in and I was again exhibiting the signs of impaired coordination. I was hooked up to the fetal heart rate monitors and the doctors were able to determine that the babies were still tolerating my body’s disturbing wrath. I then had to face the reality that I would have to take the second dose of the steroid, in order to increase the chances of a healthy delivery. I took that second dose and tried my best to mentally prepare for the next onslaught of seizures. I was very fortunate that I did not experience another similar incident.

Journey Into Motherhood

The worry of a high risk pregnancy soon gave way to a complicated delivery. My C-section was scheduled for March 17th. We would have preferred to have had it scheduled for a different day, being St. Patrick’s Day is typically known to be a “drinking holiday“, but that was the only day that my obstetrician was available. When the date was chosen, I asked the doctor if he was sure that I couldn’t go past the 34-week general term for triplets. He reiterated that it was standard practice, because the babies would run out of room in my womb after that point. Even though I was still uneasy about the early delivery, I did have to it that I was ready to be done with the pregnancy. Once an exact date was chosen, we informed my neurologist and asked about how we should deal with the oral doses of my medicine. This detail was very important because we had to be at the hospital very early in the morning, so the medical staff could prepare me for the operation. She told me that there was no intravenous form of Trileptal so I was to take the morning dose as scheduled. I was very nervous about this direction because I knew that there would be some blood loss, and consequently, my medication level would drop during surgery. Despite this apprehension, I followed her guideline and hoped for the best. Once Jason and I were taken into the delivery room, I underwent the first procedure of the operation. This consisted of istering a spinal block to numb my body from the chest down. The spinal went higher than expected and I soon began to feel like I couldn’t breathe. I managed to suck in enough air to whisper my distress to Jason. He hastily relayed the information to the medical staff. The anesthesiologist tried to assure me that I was in fact breathing but I just could not feel it. He then said that if I didn’t calm down, they would have “put me under” and I would miss the birth. I didn’t go through this pregnancy not to witness the most important part, so I calmed down and procedure progressed quite quickly from there. We barely had time to scan the crowded room, having an assigned team of nurses for me and each baby to assist with the operation, when the babies were “popped” out. Then the beautiful sound of crying filled that small delivery room.

We had just a brief look at them before they were whisked away to the neo-natal intensive care unit. We were so consumed by the process that Jason forgot or didn’t realize that the hospital’s didn’t allow anyone other than him to announce the successful birth to the rest of our family. Everyone was getting quite worried with each minute that lapsed since the scheduled start of the C-section. After a couple hours, Jason finally came out to inform our family that everyone was doing fine. The news of a successful birth was quickly overshadowed by a series of three back-to-back, generalized seizures I had by the mid-afternoon of our babies’ birthday. As I was continuing to recover in a room in the maternity ward, I started to seize. Jason stayed alert to the duration and physical signs and pressed the call button for assistance. I had just started to “wake up” when I was immediately overtaken by a second episode. Again, I stayed conscious just long enough to hear Jason push the call button before I blacked out. I then came out of that seizure just long enough to tell Jason “here we go again“. By this time, Jason was vigorously pushing on that call button but no one came. I regained consciousness, this time for good, as a nurse finally entered the room. The hospital staff then tried to track down my neurologist to figure out what should be done for me. She was unable to be reached at that time, so the neurologist who was on call for the day started me on the intravenous form of Dilantin until my neurologist could be informed of my situation. This frustrated everyone involved to say the least. The back-to-back episode ended Jason’s plans of attending a celebration dinner with our family, and delayed my first visit to the NICU until the next day. That incident was only the beginning of a very stressful journey into motherhood. On March 18th, Jason finally wheeled me down to the NICU. I sat there in awe as Jason introduced me to Hannah, Justin and Isaac in their encapsulated little units with monitors attached to them. The nurses assured me that they were doing well, and that much of the monitoring was precautionary. I held their tiny little fingers as though they had just been molded out of clay and waiting for the drying process to be complete. I’m sure that any mother of a newborn can attest to this, but seeing those precious little infants made the physical anguish and emotional distress well worth the price. The babies stayed in the NICU during the first month, because they had not developed the “sucking reflex” that usually forms at about the 38th week of a

pregnancy. They were breathing on their own, but needed to be fed with feeding tubes until the reflex finally kicked in. During that first month, my mom and I stayed at the hospitality house d with the Munson Medical Care. It was a complimentary feature available to family of current patients. This stay allowed us to be present for most of the feedings. Jason could then reserve his time to arrive there for the early morning ones before he went to work. During this time, we often referred to our feelings that we were “just renting” the babies because they, of course, could not be taken out of the unit and we weren’t required to be present for every little activity of their development.

An Entirely Different Play

A month after their birth, our babies finally came home. Jason and I had just gotten fully acclimated to being first-time parents, but my epilepsy presented its own set of extra concerns. Contrary to the doctors’ notions, the seizure control remained an obvious problem despite my physical recovery. The “bus” depiction continued to infiltrate many of those frequent occurrences, but the more recent seizures still began to take an even greater toll on my mental and emotional health. My mom was there to aid in the normal child care of three impatient infants, and Jason shared those responsibilities after long workdays and short bouts of sleep. It became clear to me that I would need to rectify this epilepsy to independently function as the primary caregiver. I felt a sense of desperation and urgency, and I knew that a solution to this dilemma would also take time to figure out. In the mean time, we were just going to have to deal with current circumstances, and hope that my status would return to those “occasional” tonicclonic seizures that I experienced before my pregnancy. Hannah, Justin and Isaac began to develop some semblance of independence by the beginning of autumn. At this time they were about six months old and were finally holding their own bottles. They were even eating pureed vegetables and cereals from a spoon. These were tremendous mile stones, because they allowed us to actually get other things accomplished during that time. This was also the time of the year that had typically been devoted to hunting, and Jason began to grumble about the idea of missing deer camp. Although Jason’s parents came down to help out with the babies not too long before, the three were gaining new grounds with each ing day, and only so much could be recorded in pictures. So, I asked Jason if his mom would mind if I stayed with her while he went to deer camp. Their established camp was located within a couple hours from his parents’ house, so Jason could come in from hunting camp early if he needed to. The idea was a “hit“, and we prepared for the first long journey to Iron River as new parents. We carefully mulled over the logistics of traveling with the three babies in their car seats, two dogs with their kennels, a good amount of baby supplies and Jason’s hunting gear. Jason’s engineering skills were put to the test, but he managed to fit everything in and away we went.

Although this was an exciting but exhausting time, I thought it would be a good reprieve from the constant anxiety over the still fragile state of my seizure control. I did not have any delusions about the predicament improving, but if it provided even a small diversion then maybe the intensity and frequency could be minimized. I had one tonic-clonic seizure during this time. One morning, about one week into our stay, I was again shaken out of a deep slumber and into another personalized theatrical production. While the “bus” drama had been far and away the most frequently occurring play, this one was entirely different. Instead of falling, I felt my body levitating off of a black comforter in a dimly lit room with black interior. I saw a straw broom floating in front of me and felt compelled to reach for it. My arms felt stiff, as though they were crumpled and rusted pieces of metal that were pinned to my torso. Never the less, my arms extended with excruciating vigor, trying to touch that now elusive object. I first extended my right arm twice, with precipitate clenches unable to grab onto it. Then my left arm made a couple of blind swipes before the illusions quickly vanished, leaving me on the verge of consciousness. Even though this drama seemed to be more painful, it did not possess the fear factor that plagued the previous depictions. Therefore, it did not leave me with the same emotional misery.

Sweet Dreams All Aboard

As if an early spring day Surely it’s deceiving Though calming winds blow Ushering in the evening As the sun cautiously melds Into the Earth I think back to those nights Shortly after your birth The buildings lit up Like checkerboards Those cascading city lights Our futures so bright From so fragile, so adored To bikes and aviation Toy trucks and trains and dollies galore I love always and wish you the best Sweet dreams all aboard

The inspiration for this poem was derived from the atmosphere of one midwinter thaw, just before our babies’ first birthday. During one nap time, I was looking out the window at the warm sunlight and I envisioned how their lives would progress over their early childhood development and the activities that I looked forward to.

Seizure Management

A More Progressive Approach

By the time January had approached, I was still having regular visits with my neurologist to try to resolve the seizure problem. After many “tweaks” of Trileptal and the associated blood level checks to again find an effective dose, I was still experiencing many seizures. Most of those seizures were very strong “ticks“, some partial or “stuttering” seizures and others were the demoralizing tonic-clonic seizures. At that point, both my neurologist and I had decided to try Keppra, another “newer” anticonvulsant. Keppra was just as ineffective as Tegretol had been so many years before. When I told my doctor that it wasn’t working, she insisted that it would if I just pushed past the transition period. I tried again to go through the transition but to no avail. Then, I set up an appointment to discuss my issues with Keppra in further detail. As I met my doctor at the door way of the examining room I noticed that she was already displaying the nonverbal signs of her determination that I had just “copped out.” During that appointment I explained that each time I tried to back off the Trileptal with a full dose of Keppra in my system, I went into a fullblown seizure. She looked at me as though I was a child questioning a parent’s authority and said that I could try a different medication, but the chance of breakthrough seizures was inherent in any medicinal alteration. It was disheartening to know that I was considered nothing more than a thorn in her side. With a feeling of utter despair, I slowly rose from the chair and numbingly made my way to the front desk to pay for what I considered to be a complete waste of money. I still felt defeated as I ambled through the waiting room and out the clinic doors. As soon as I hit the parking lot though, my despair became anger and frustration with her disregard and the fact that I was still relegated to Trileptal. With this frustration, I knew that I needed to find an alternative; there had to be a more productive intervention elsewhere. From almost the time of my initial diagnosis, I knew that brain surgery had been

performed to alleviate the worst of cases. Throughout my adult years, I periodically asked about the surgery becoming more available as a regularly accepted practice. Each time, I was given the same answer, implying that I would have to be experiencing daily tonic-clonic seizures or be in an unending seizure or “status” before I would even be considered for such a procedure. Even as I broached the subject of pregnancy, I never questioned the accuracy of these “professional opinions“, until the reality of parenthood dictated a more progressive approach to the seizure management. I began to research the other non-medicinal options on the internet. I had heard from one of my brothers-in-law of a device called a “Vagus nerve stimulator.” He met a lady whose voice periodically rose in pitch and asked her for the reason. She said that she had the device implanted to abate her seizures and that the momentary vocal change was just a minute trade-off for a greater level of seizure control. I kept this in mind as I stroked the computer’s keypad with my usual clumsiness. I figured that if my neurologist’s objections were correct, then I would at least have some other reason to ask her for a referral to a specialist. I called the company that manufactured the device for more information. They sent me an extensive information packet explaining the types of seizures it is used for, a description of the insertion process, and its documented success rates. I made an appointment to again plead for the opportunity to speak to a specialist. While what I really wanted was to “get the crud cut out of my head,” my chances still seemed too minuscule to continue on with that argument. So, I gathered all of my research and once again headed off to the combative environment of my neurologist’s office. I placed the most influential information about the Vagus nerve stimulator in the front of my overstuffed paper folder and, with headstrong determination, sat down on a chair in the well manicured waiting room. I placed the folder as neatly as possible on my lap as I exchanged faint smiles with the clinic’s receptionist. The nurse finally called me to the same stuffy room as I had been in so many times before. I again tried my best to be upbeat and cordial. Not too long after the nurse exited the room, my doctor appeared with her usual arrogance. This time, I didn’t even bring up the subject of other medicines but instead immediately opened the conversation with, “I have found a different surgery that I would like to try.” I should have known better than to use the word “surgery” because after that, the rest of my sentence clearly fell on deaf ears as she

reiterated the same old tired response. She said “medication is your only option” and continued on with her notations in my file. She remained adamant that my seizures were still not “severe enough to warrant such drastic measures.” I stubbornly told her, “Then you have the next seizure because I am sick of them.” She responded with a comment on her own problems and that “it would be nice if I would just be happy.” At this point, I started to choke back my tears as I could feel my resolve being deflated. Then, she continued on to ask “why would you put yourself through that?” When I heard that question, choking back tears no longer was necessary as rage began to fill every nerve of my body. While I briefly thought about throwing her through the wall, I knew that it would not get me the referral I needed. Instead, I boldly demanded the referral. Finally, she said, “Well then, I guess I can’t help you.” I responded, “NO, you can’t!”

Options

Being a Michigan resident, my natural first investigation into finding a specialist started with the University of Michigan. I found the clinic name and phone number, so I was well prepared to get a referral from my neurologist. After that heated argument in my last appointment, I finally got her to refer me to the U of M clinic. Though I was committed to this pursuit, actually getting that timely appointment to plead my case was a bit more convoluted. The earliest appointment available was six months down the road. I was then told by the clinic’s receptionist to call back in a few days to see if any cancellations could reduce my waiting time. Like many other people in this “fast-food” culture, “waiting my turn” to see an epilepsy specialist was practically as excruciating as my seizures themselves. At that time, I considered myself an “immediate neurological nightmare“, so I kept calling each day until I was finally able to move my appointment to only three months away. I endured a couple more tension-filled weeks, before I received a phone call from my other brother-in-law. He said that his wife had recently gotten a job at doctor’s office next to Saint Mary’s Hospital in Grand Rapids, Michigan. Located in the same building where she worked was a recently opened epilepsy clinic and they suggested that I give this clinic a try. I carefully weighed my options because I was not sure that I would receive the same quality of care from a relatively unknown clinic. But, my lack of patience kicked in and I also figured that my original referral would be somehow be “tainted” by the disregarding comments from my former neurologist. The fact that Grand Rapids was also a whole lot closer to South Boardman than U of M, prompted me to call for an appointment at this “unknown” clinic. I was pleased to hear that I could get an appointment with only a two week wait. I took that appointment and gathered all of my research that I had accumulated for my first visit with a doctor who was actually interested in this condition. At the time, I also kept the appointment at the University of Michigan just in case I needed a second opinion.

Return To The Theatre

Despite initial and legitimate reservations from family and friends, my decision to pursue my surgical options was met with their continued prayer and . Everyone in our family had become well acquainted with those seizures and my distraught reactions to them. They also knew that the actual manifestations and my insecurity would eventually cause unrest in our kids’ very impressionable young minds. The last thing we wanted was for our kids to be afraid to be left alone with me. I thoroughly hated the idea that they one day will have to know “how to handle the situation“, especially as young children. As we waited for the opportunity to plead my case for brain surgery, I tried my best to avoid the seizure triggers and be extra attentive to the intensity of the tingling sensations. Even with those precautionary measures, I still experienced one tonic-clonic episode and I was again immersed in the wonder of yet another mid-seizure vision. This one actually brought me within the walls of some kind of “old town” theatre. Although I have never been to an opera house, its interior looked like it belonged in the set of the movie, “Pretty Woman“. By this point in my life with epilepsy, I was almost welcoming those internal plays in hopes that the “bus” drama could pull me through the uncertainty of those stifling seizure moments. But, as I was overtaken with another nocturnal episode, I found myself standing against a balcony of a darkened theatre’s upper deck. The left side of the balcony immediately started to break away from the rest of the second floor. I had been standing among a crowd of people but soon found myself on the floor, paralyzed, sliding down the plummeting, slippery surface. I then began to sense feet stepping over me and I expected a complete collapse. Then, without any kind of sophisticated age, I realized that the balcony stopped its perilous descent. Though it did not come in a moment of profound epiphany, I just knew that it had totally stopped. After that soothing acuity I was then released from the internal play. I came back to the reality of a few exaggerated muscle twitches in my legs and then, the usual post-seizure nauseous feeling.

As I lay there in bed, awaiting the return of my coordination, I realized that, just like the “bus” drama, this play also differed from any previous scenarios. This was the first drama since the “dream” on the school bus that I could recall with vivid detail without recognizing its reoccurring attribute. The vision was so vivid that I have often wondered whether it was an actual dream that I was shaken out of as the seizure began. That being said, I also know that this vision had all of the classic trademarks of a mid-seizure drama, especially during this time of my life when the predominant focus was the feeling of falling. While I found the vision interesting, at the time, I could only turn my head toward Jason and tell him that I was sorry for waking him.

The Consultation

A Renewed Hope And A Fresh Perspective

Over eighteen years had ed since that original “dream” when I entered the doors of Saint Mary’s Epilepsy Clinic in Grand Rapids. I found the initial consultation extremely uplifting. We were able to discuss all of the issues that I had been dealing with, along with the options that I had researched prior to arriving at St. Mary’s. At this appointment, the epileptologist suggested I try Lamictal. This medicine was then added to my regimen to try to stabilize my condition. The Lamictal and Trileptal “cocktail” was only slightly more effective, but at least I had a renewed hope and a fresh perspective on this torment and my future. It was during this consult, the doctor, Jason and I decided to pursue brain surgery before I resorted to the less “invasive” alternatives. This was the exact news that I was hoping for. I went home and canceled my appointment at U of M and never looked back. I was very grateful that I was finally scheduled for the testing required for surgical candidacy. Throughout the following year I was subjected to a large variety of scans, tests and monitoring. Some of these scans included an updated MRI (magnetic resonance imaging), a PET (position emission tomography) scan and an EEG (electroencephalogram). After all of these scans, my doctor was then able to get a better picture of the internal structure and functioning of my brain. The first scan was the MRI. Although I had had this scan before, shortly after my diagnosis and while seeing my former neurologist, I can’t say that I was looking forward to lying completely still inside its giant tube that made me claustrophobic. It was so sterile and loud, not even the head phones and music that I was given by the technician drowned out its alternating bursts of rattling and high frequency sounds. I resisted the claustrophobic reactions and tried my best to be perfectly still, so the powerful magnetic field, radio frequency pulses and computer used in this “contraption could get the necessary detailed photos of

my brain. These pictures were taken in quarter inch “slices” and they highlighted any lesions or abnormalities. They were then viewed by my doctor from the bottom, front or side perspectives before my next appointment. From a compilation of these slices, she was able to see that there was a part of my right brain that had actually shrunk due to a very old injury, not just a small scar. She mentioned to us that this was probably a result of oxygen deprivation around the time of my birth. The next test was the PET scan which involved swallowing a radioactive material called “a radio tracer.” As I entered the small room where the radio tracer was given to me, I listened to the technician’s assurance that it was safe; I didn’t have to worry about any future cancer-causing side effects or other illnesses. I was so intent on finding out if I was going to be qualified for epilepsy surgery that the safety of this procedure didn’t even cross my mind. He had obviously run into this question from other people in the past, so I patiently waited for him to finish the explanation. Then the technician turned the lights off and told me to relax while tracer accumulated in my brain. The accumulation of this radio tracer allowed the metabolic activity in my brain to be studied. The actual machine, a PET scanner, with the help of a computer then created a threedimensional color image of the structure and functional processes of my brain. The EEG was another test that I had some previous exposure to. I knew going into this procedure that it consisted of temporarily gluing small metal plates or “electrodes” onto different parts of my scalp. I had already been told that these electrodes along with its amplifier and recording machine allowed the staff to measure my brain’s electrical activity. I asking how this process worked and it was explained to me that the electrical impulses were converted into a series of wavy lines or “brain waves.” The night prior to this test I was told to get as little sleep as possible in order to measure the brain waves in both an awake and sleep state. I initially thought that this would be easy because I was already accustomed to waking children and stress induced insomnia. Ironically though, I think that I ended up getting more sleep that night than I had gotten in a long time. So, when it came to that portion of the test I tried as hard as I could to rest. I was able to relax but I never really did fall asleep. Therefore, I began to wonder just how accurate these test results would be. As I entered this procedure, I knew that I hadn’t followed the first instructions

completely, so I made every effort to follow the rest of the directions as closely as possible—in order get valid results. I certainly didn’t want to repeat any test because it would not only waste my time and money but would also delay my surgical candidacy. After I was hooked up with the electrodes, the technician directed me to perform simple actions such as blink my eyes and move other parts of my body. In order to replicate some seizure-like brainwaves, I was also asked to do more demanding actions such as breathe deeply for a couple minutes, referred to as hyperventilation. I took as many quick, deep breaths that I could until the technician told me to slow down a little. She didn’t think that I would be able to keep up the pace for the entire period. My entire body started to feel frightfully numb and tingly but, I was determined to prove her wrong. She later commented that most people don’t even try to put that much effort into that exercise. Then, she subjected me to a variety of different stimuli such as strobe lights to try to induce the electrical disturbances. The strobe lights were the most nerve racking part of the test because I knew that similar lighting situations was my most frequent trigger. This time, my anxiety was even greater because of my consistent hypersensitivity to that stimulation. I escaped this EEG without having the dreaded seizure, only to find out that I would then be itted to the epilepsy monitoring unit for up to a week. This time would allow the staff to further evaluate of my brain waves via an extended period of time hooked up to EEG electrodes. Extended monitoring was scheduled for the next week which gave me a lot of time to question whether or not I had enough courage to continue on to the next level. I grew more afraid because I was told that the staff would also be reducing my medications to purposely cause seizures in order to watch my physical symptoms. Even though the thought of inducing a seizure scared me, I decided to accelerate the process in order to lessen the days I would have to be away from my family. I didn’t take my entire dose of medication the night before or the morning of my ittance, thinking that I would survive seizure-free until the next day. Although this calculated risk seemed favorable at the time, by that afternoon, as I was going through the meticulous process of getting the electrodes glued to my scalp, I began to question whether or not reducing my meds had been wise. While the technician was adhering the electrodes, I could feel the “ticks” coming faster and stronger and all I could do was “pray” that I would not have a seizure before I was hooked up to the machine. I silently thought about telling her to hurry up because if I had a seizure right away then it might be a few more days before I would have the next one. I did manage to make it through the hook-up

and ended up having the first of two seizures later that night. Along with the battery of sophisticated brain scans, I also had to undergo a series of cognitive or “neuropsychological” testing that included the usual IQ tests and evaluation of my psychological status. During this process, I was evaluated for my auditory and visual memory, verbal, verbal comprehension, visual—spatial, fine motor and executive functioning skills. While the fine motor speed and dexterity, memory skills as well as the verbal usage and comprehension skills seemed self-explanatory, the visual spatial and executive functioning skills were a bit more challenging for me to understand what they entailed. These specific tests however, were probably the most interesting to undergo. They included activities that evaluated my ability to develop and implement effective problem solving strategies, and how well I was able to quickly switch back and forth between specific tasks. The switching back and forth between tasks was referred to as “cognitive flexibility“, which I didn’t even realize was a specific ability that was actually measurable. From these neuropsychological tests, the psychologist could then determine which parts of my brain and what functions were impacted by the abnormality seen on the brain scans. As it turned out, the fine motor and most of executive functioning tests indicated some cognitive deficiencies. While I was able to effectively problem-solve, I had trouble with the cognitive flexibility and the planning, organizing and integrating complex visual information. From the psychologist’s explanation of what was involved in organizing and integrating information, I understood this as a problem with being able to organize the visual information in my memory so I could recall and utilize it later. These deficiencies were probably the source of much of my academic difficulties.

Sources Of Comfort

Just like during the postpartum months, I had many seizures throughout this preoperative work—up. Many of the seizures were a result of the stress involved in the evaluation process and the few that were actually induced for the purposes of studying their onset and physical manifestations. While the seizures varied in intensity, they always broke my concentration and wasted my precious energy required for dealing with the activities of three very demanding toddlers. During this time I was sensitive to even the smallest of triggers. This was particularly evident at Jason’s office Christmas party during the year between my initial consult and the eventual determination of my surgical candidacy. That year, the party was set in a kind of rustic cabin setting of a conference room at Ranch Rudolf, located not too far away from our house. In this room, there were several tables set up in long rows, with votive candles decorating every couple feet or so of each row. Not only were there candles flickering, but there was also a nice fire in the fireplace to set the scene. It was the presence of these two seasonal amenities that proved to be just another snag in the jovial moments of my social life after parenthood. The continual flickering of each candle as people talked or walked by were setting off many of my “ticks“. While none of them seemed strong enough to generalize, the repetitive nature was still concerned me. I knew that these candles were causing a large majority of the problem, so I started to face the fireplace in hopes that a bigger flame would not elicit the same pseudo-strobe light effect. I had normally enjoyed the warming ambiance of a fireplace, but even this inviting atmosphere provided no reprieve from the sensations and my subsequent worry. I managed to fight the distress so that we could at least partake of the meal and gift opening, but those small seizures forced us to leave before the party actually concluded. The ridiculous sensitivity just perpetuated my shaky emotional condition. The continued sensitivity only brought about more seizures, followed by another increase in my anxiety. This was same vicious cycle that I experienced during my pregnancy and never finding a solution to this problem was what I began to

fear the most. One of the few sources of comfort during this time, especially during those generalized occurrences, came from Jason’s actions of trying to securely hold onto me. Although this is not the recommended basic first aid training procedure for dealing with tonic-clonic seizures, it provided me with a little external control that I obviously did not possess myself. I still felt the physical pain of the muscle contractions as they marched across my body, but the control that Jason provided at least kept the most excruciating parts of my envisioned left arm swings to a minimum. This allowed me to “wake up” a little less distraught because my mind did not go through those “nonsensical visual tangents” as much. When Jason was not with me during those “big” seizures, and even during some of the times that he was present, I was fortunate that many of these incidents included the same “bus” scenario and provided me the internal resolve like so many times before. It still seemed to replicate that same central thought like a recorded message and a comforting promise to find a solution to my problem. Although the thought continued to give me a glimmer of hope, I remained nervous about what that solution might be. I had always desired a cure but also had to brace myself for the possibility that surgery would not provide the resolution I dreamed of. Even with this uneasiness, I was thankful to have that supplementary comfort and sense of resiliency, even if it was just for a moment.

Still A Maybe

Each of those pre-surgical tests proved to have positive results, moving us closer to making brain surgery a realistic possibility. After that extensive evaluation, I was disappointed to hear that the answer was still a “maybe“. It was very difficult for me to remain optimistic, but I was reminded that at least I did not get an apologetic “no“. While the epileptologist was able to determine that my seizures were all originating in the same area of my brain, the extended EEG monitoring could not pinpoint an exact “focus” or precise onset location using the regular scalp electrodes. I would have to undergo a more advanced procedure in order for the doctor to obtain that information and arrive at a conclusive answer for my surgical candidacy. For this procedure, I had to be temporarily transferred to the University Hospitals of Cleveland for a two-week invasive surgical and monitoring process. This process consisted of placing an “electrode grid” directly onto the surface of my brain and further studying the brainwave characteristics as well as the physical manifestations. Although the long trip down to Ohio required quite a bit of sacrifice from everyone, including my immediate and extended family, our efforts definitely were worth any inconveniences. My mom was going to watch the kids for the first couple of days until Jason’s parents could take over for the remainder of our two-week absence. While I knew that Justin, Isaac and Hannah were going to be well taken care of, I also knew my schedules and healthy diet guidelines were going to be “fudged” a little. Although the grandparents were looking forward to having so much “bonding time” with our kids, I didn’t think they realized just how exhausting three busy little two-year olds in one house could be. I knew that parenthood had given them the necessary wisdom, but the trio had a way of running away with the show if you did not physically keep up with their perpetual motion and redirect their inquisitive nature. As it turned out, I was correct. Jason and I found out that our warning to keep all car doors locked was not followed and resulted in a very dead battery when Justin, Isaac and Hannah snuck in and pushed every button that they could find. While I’m sure that the incident produced a little frustration, it was yet another comical example of how

quickly they moved and their ever increasing cleverness. When I came home I would undoubtedly have my work cut out for me to return things to a more organized routine and the appropriate level of discipline. We expected the drive to University Hospitals to take about six and a half hours, which was long enough to spend in a car. My excitement was practically overflowing when we left, and I anticipated the trip to go fairly smoothly. While the travel was wrought with the same potential seizure triggers as I had been dealing with on a daily basis, there was no room in my mind for this kind of concern. It was at the University Hospitals of Cleveland that I would finally undergo the surgery I desperately wanted. The trip down started out fairly uneventful, aside from the typical in route confusion and frantic scanning of the map. Then, already a few hours into this trip, we stopped at Mc Donald’s for dinner. As I stood in line to place our order, I felt the same déjà vu feeling seep into my consciousness. I survived the dinner without incident, but not too long after getting on the Ohio turnpike, I stared to seize. It only ended up being a partial seizure, but it still forced Jason to pull over in order to deal with the situation. Not only was I feeling the stress of post-seizure after effects, but Jason’ s heart was also thumping from the having to do some quick maneuvering in order to pull to the side of the road. We then continued on with our journey with an increased cautiousness and extra vigilance for those triggers. On our way to Cleveland, I thought about what questions I would ask the doctors, as they explained the step-by-step procedure that I would voluntarily submit to. This was going to be the first time we met with the doctors who would perform the actual surgery, so I wanted my questions to be pertinent an as concise as possible. After careful consideration, the only question that I really wanted answered was what if I had a seizure on the operating table. Surely this situation would not be conducive to any “precision cutting“. When we met with the epileptologist, I made sure to ask him this question. He told me that it wouldn’t happen. He said it with such confidence that I felt that I had no other choice but to believe him. This trip down to the University Hospitals of Cleveland was what we thought would be kind of a “dry run” since we were, after all, only going down to meet the epileptologist and the surgeon a few days early. Then we would come back, having our kids more adjusted to our absence. Eventually we would leave for the extended time allotted for the actual surgery and post-surgical recovery period. When we met the epileptologist however, he wanted to it me to the

monitoring unit a few days early, so I could be evaluated with the usual EEG scalp electrodes before they placed the electrode grid on my brain. I had already determined that the monitoring and more precisely, the med reduction and induced seizures, was the most dreaded part of the pre-operative work-up and now they wanted me to endure it again. I had prepared myself for the surgical experience, but loathed the idea of being in the monitoring unit three times during the course of my year-long evaluation. My ittance was contingent on whether or not the insurance company would actually agree to cover the procedure. Insurance companies are known to be quite stingy, so I figured that I would still be traveling home with Jason to finish packing for our long absence. The doctor’s istrative staff was able to convince the insurance company to pay for it, which left Jason to go home on his own. He did return for the planned period of time so he could assist the staff in identifying the early warning signs of my seizures, such as my wincing and making a fist with my left hand.

Brambles And Briars

Brambles and briars I approach with a smile Because… Knowing I will heal Makes it all worth the while.

This was just a single thought as I was preparing to go down to Cleveland to remind myself to remain optimistic during this time of departure and apprehension

The Surgical Process

A Completely Different Twist

After my early entrance into the monitoring unit was complete, the scalp electrodes were removed. I was then prepared for the first of a two-part surgical procedure, which exposed my brain for the placement of that electrode grid. Then the surgeon replaced the incised portion of my skull and scalp, wrapped my head including the grid and electroencephalogram attachments, and sent me to the epilepsy monitoring unit for the invasive EEG monitoring and brain mapping segment of this process. While in the monitoring unit, my brain waves were again studied via the EEG. The electrode grid was able to record even the smallest of “ticks“. The monitoring staff began to tell me that the grid was so successful that the doctor might not need to induce any more generalized seizures to get the necessary information. But, just as Jason and I started to feel some relief, the staff let us know that my doctor still wanted one tonic-clonic seizure recorded. I was then subjected to another med reduction and the known seizure triggers, to induce what we hoped would be my last tonic-clonic seizure. After spending my entire existence with epilepsy trying to escape those “demons“, I didn’t know how many more of these deliberate confrontations I could emotionally endure. But, because I was so determined to rid my life from them all together, I knew that this request needed to be fulfilled. So, I told Jason that I was just going to have to “buck up and take it“, even though I still dreaded the anticipation and feared their arrival. The brain mapping presented a completely different twist to my time in the monitoring unit. I’d already been exposed to the seizure induction process since the time of my pre-surgical evaluation in Grand Rapids, but now the doctors had direct access to my brain and a kind of overriding control of my body. I felt like I was a real live puppet—like the story of Pinocchio on rewind. I don’t

the entire procedure but I knew it consisted of stimulating each electrode on the electrode grid. The stimulation was accomplished by applying a very weak electrical current to those electrodes, and then asking me what I was feeling and where I was feeling it. The physical observations and any interruptions in my abilities to perform the doctor’s requests were also recorded. With all of the accumulated information, the doctor was able to ascertain what functions were controlled by which areas. While I still have only limited memories of the procedure, I do the triggering of the tingling sensations and the muscle contractions in my left hand. I also seeing “stars” cross my line of sight in an angular pattern. The brain mapping was performed in my room in the monitoring unit, so Jason was also there to witness this process. After the brain mapping had concluded, he seemed somewhat freaked out by having just witnessed the electrical manipulation of my muscles, particularly the stimulation of the “suspect area“. He later told me that it was really unnerving to watch my head turn and my eyes roll back in my head as though I were overtaken by an actual seizure. In my case, the left hand sensory part of my brain was confirmed to be onset of my seizures. I was extremely lucky because there is a very thin divide between the parts of the brain that control the sensory functions and motor functions of the body and if the trigger had been on the motor side it would have been considered inoperable. Even though the trigger was on the “good” side, there was still a risk that I would lose my ability to voluntarily move my fingers or entire hand.

The Second Operation

Awake And Engaging

After a week of monitoring and testing, I underwent the second operation, where the surgeon removed the damaged parts of my brain. The surgery was quite involved. Although I was not conscious and therefore had no memory of the grid placement surgery, I have vague recollections of the second surgery, because I needed to be “awake” and engaging for the procedure to be precise. In the surgery, I felt a wide range of physical sensations, frustration and piercing pain. The first thing that I recall was being asked to count down from what I thought was a ridiculously easy number. I only counted back a few numbers before I just “lost my train of thought“, and felt the frustration as I heard the surgical staff acknowledge my inability. I knew the answer was somewhere in that “rattle trap” of a memory but, for some reason, I just could not retrieve it. I think the counting down might have been the initial stage of a perceivably more amplified version of the brain mapping, because I was able to hear the surgical staff’s recognition instead of having no awareness of that response. While I don’t know if the doctor actually used a stronger electrical current for this stimulation than during the original process or if it was just the now surfacing anxiety of my surgical reality, I continued to feel this increased intensity. After the frustration of my counting experience, the next thing that I from the operation was undergoing the portion of the brain mapping that focused on my sensory and motor functions. My conversations with the doctors started out with normal tones and inflections as the stimulation began. Then they became heightened exclamations and eventually I was just saying ouch, ouch, ouch. Towards end of this segment of the operation, I continued to experience the stimulation, but the doctors were no longer asking me what I was feeling and where. Then I felt “it“. I felt the pain and the panic as I began to sense a seizure progressing. The first thought that popped into my mind was that the doctor was wrong with his statement that I wouldn’t have a seizure on the operating table.

Despite the initial panic, I managed to somehow find the capacity to trust that my doctor knew what he was doing. Ultimately he was in control and the seizure did stop without generalizing. The brain mapping was then followed by an extremely sharp plucking sensation within my head. Although I’m sure that they were not using pliers or tweezers, I envisioned that they were. As the sharp plucking began, I begged them to “please stop” with a wimpy whisper. A lady on the surgical team explained that they could give me a local anesthesia to dull the pain but that I needed to remain conscious. I don’t accepting the local, but I did not feel any relief. At that point, I settled down and tried to keep my “whining” to a minimum. After what seemed like forever everything stopped—background noises, plucking sensations, everything. At this time, I said” please be done“, “please be done“, please be done” in a very feeble voice. The same lady replied that they were almost done but thought that they could go a little further if I agreed. I faintly said “yeah” and she asked me if I was sure. I replied that I could handle it, even though I had no idea how. I then endured a shorter duration of plucking but I felt my strength being depleted at a much faster rate. Finally, I heard “there is only two minutes left—what would you like us to tell your husband“? I whispered “tell him that“. Then I guess I just drifted off to sleep because that was the last thing I ed.

Second—Hand Puzzle

In a broken box I have been rendered. Forced to fit in, Many minds have surrendered. Though intended to be… Completed, I have been opened many times, Then depleted. Only the committed, Creative and smart See me as the picture Devoid of missing parts.

“Second hand puzzle” was originally intended to be a “puzzle project” to show my gratitude to everyone who ed me in finding that renewed hope and fresh perspective and the determination to pursue a more fulfilling future. The project was to consist of a puzzle with the poem written on the full picture, and then disassembled minus a few strategic pieces. I was then going to give the project to my family to put together, in order to read the poem. I wanted the project to be something they could do while I was in surgery, but I never got the supplies together until well after my operation. Later on, I finally completed a version of the project myself as a way to conclude my recovery and reflection process.

Post-Surgical Feelings

The day after my second operation, I moved from the ICU to a room on the general floor. There, I was further greeted by the intense headaches, strange visual distortions and a feeling like my left hand had been replaced by a block of wood. I was given painkillers for the headaches and was finally ready to resume some of the usual daily living skills, such as taking a shower. I insisted that I shave my legs and this is when the visual distortions became apparent. I was going about the motions of drawing the razor up my leg, but I couldn’t get over the sense that I was going in the opposite direction. My left hand continued to feel like a piece of wood, but the doctors were quite surprised and pleased that I displayed voluntary movements so soon. I was even able to manipulate things with my fingers. Jason soon had me practice picking up grapes to further improve my coordination and finger dexterity. The doctor was so amazed by my post-surgical capabilities that he had assembled a video crew to tape some of the preliminary neurological testing on the second post-operative day. In the interest of further research and surgical advancements, I agreed to participate in that process. The tests were quite simple. They involved closing my eyes and telling the doctor if I felt various touches of the back of my hand, palm as well as each individual finger. He also exposed my hand to warm and cold objects and asked me if I could discern between the two. While I am sure that I did not each test with flying colors, the doctor and video crew seemed impressed with the results. There was however, one noticeable glitch in my post-surgical outcome. After the first day or so of post-operative interactions, Jason started to notice that I had no awareness of anything in the vicinity of my left side. He asked the doctors about this and the simple, “follow my finger with your eyes” test indicated that that there was a definite visual deficit on my left side. Although they made note of this issue, they also said that it was still too early to determine if it would be permanent. My physical status continued to improve with each day, but my psychological state was still very fragile. I needed constant assurances that they “took it all”

even though no one could give me a 100% definitive answer as to how much of the damaged tissue remained. Doctors, nurses and Jason sympathized with my anxiety, but were getting somewhat irritated by my constant questioning. I then became even more appreciative of all of the cards and letters from everyone continuing to convey their thoughts and prayers. After about three days post-op, I had recovered enough to walk around the hospital floors and even go to the cafeteria for dinner. This made me feel more optimistic about the surgical outcome. The visual deficit and distortions however, made my travels awkward at best. It was as though I were walking in a narrow tunnel yet I felt like I had gotten lost in a “paper bag“, not able to negotiate even the simplest of floor plans. Not only were the visual distortions noticeable while walking, I was also unable to follow the visual images of a TV program, which impacted my ability to follow its plot. Reading even presented its own set of problems. When I looked at a menu, magazine or other reading material, I felt like I was trying to read two columns of a newspaper simultaneously. This gave me the impression that both of my eyes weren’t tracking together and I was unable to concentrate. In order to read anything, I had to close one eye and read with the other. On my fourth postoperative day, I was even allowed to be taken off the hospital grounds. At this point I started to feel like I had “finally gotten out of the woods” and that a cure was right around the next bend. The next bend however, proved to be further away than we had hoped. That night, Jason went for a walk around the college campus d with the University Hospitals. He held onto my left arm and steered me around the light poles and other people. I still felt as though I were walking in a kind of fog, not quite able to discern anything beyond the right side of my immediate surroundings. We stopped at a street side Qdoba restaurant and I waited in line to order. I found the menu confusing but I was allowed to linger there by the other customers, who could undoubtedly see the part of my scar that could not be covered by the bandana. Despite the confusion and disorientation, I enjoyed my meal and the fresh air of the park—like setting. As we reentered the hospitals general floor though, a fuzzy, hazy, dizzying feeling overwhelmed me. We found our walk and the dinner out so enjoyable that we didn’t arrive back at the general floor before the doors were locked for the night. We had to be buzzed in and awaited the door to open, when the same type of seizure manifestations

began with a stiffening upper body and stuttering sounds. Jason then informed the staff that I was having a seizure and a nurse came to assist. I that the stuttering started to annoy me after a while, as I heard Jason speak to the nurse. These limited convulsions continued on for a few minutes until it finally generalized. I finally blacked out shortly after their acknowledgment of this progression. I was then transferred to a critical care unit temporarily, until a room was made available in the epilepsy monitoring unit to further evaluate my condition. While in the monitoring unit, the staff wanted to perform some of the tasks that I had performed during my previous times hooked up to the EEG machine, but I refused. As frightening as the surgery had been, I knew that if they could still measure seizure activity, they wouldn’t allow me repeat the operation to remove any remaining scar tissue. Therefore, I didn’t want to subject myself to any more deliberate seizures. Even though I refused to cooperate, I remained in the monitoring unit until my planned discharge on the seventh post-operative day.

New Anxieties and Steppingstones

Our travel back to northern Michigan was almost unbearable because I was exposed to all of those seizure triggers, such as bright flashing lights and reflections of the sun. At that moment, I don’t think I had ever wished more for a “beam me up Scotty” teleportation type of transit system to circumvent all of the stimuli. Although I couldn’t wait to get home and see my kids and the rest of my family, I did not want to leave the security of the hospital staff and the medical technology. My return home from the invasive testing, monitoring and surgical protocol presented me with a whole new set of anxieties. I was still very much on that long, terrifying road to physical and especially psychological recovery without any guarantee from the very gifted and knowledgeable doctors. The assistance of my entire family continued to be necessary in the early stages of my recovery. At that point, everyone primarily focused on the physical aid, just trying to maintain the routines of three very inquisitive “raccoons” as I regularly referred to our busy two year olds. Emotional counsel was an obvious necessity too, as I reentered the family dynamic after a two and a half week absence. One of the most memorable examples of this need came only hours after my return home. I was sitting on the front porch when Hannah, Justin and Isaac reluctantly approached me with perplexed expressions. I began to wonder if they would ever see me the same, since my shaved head and large surgical scar seemed to scare them. I wanted to know if they would consider me as someone who they could rely on again. Fay, my mother-in-law, assured me that love would prevail and that their apprehension would subside as I continued to display my love for them. “You are still their mom” she said. Everyone made sure to facilitate my reentry with an almost awkward reintroduction to our cautious trio. Even with these genuine attempts, I felt as though I had somehow lost that innate connection to motherhood. But Fay was right, love did prevail and by the next day, the kids warmed up to me as they had recognized my caring voice and inflections. Although the topic of religion never

entered into that particular situation, it was the tangible moments that the power of prayer soon became evident to me as well. I had never considered myself even the slightest bit religious. Like many other kids, I was introduced to God and the Bible through Sunday school classes that my sister, brother and I attended with the other kids in the neighborhood. While my mom grew up attending Catholic schools, by the time she finished high school she did not have a good relationship with her mom. Due to this poor relationship, she disconnected herself from many of the things closely associated with my maternal grandmother. She eventually met my dad who was indifferent about the subject at best. So when my brother, sister and I grew old enough to participate in those Bible schools and church camps, he allowed our attendance as long as we didn’t come home and shove those ideas it down his throat. I think my mom still recognized the benefits of the teachings but our involvement was more of a social affair than anything else. Although I had learned to appreciate the weekend with a sense of spiritual freedom since my early days in kindergarten, my limited exposure to those Sunday school classes was anything but positive, because of my frustration with academic situations. Therefore, I chose to pursue more successful interests and activities and over time, developed my own personal apathy and even skepticism towards Christianity as a whole. I think the most pivotal moment of my disassociation happened when I was around eight years old. One Sunday I was sitting around a table with the other kids my age who were attempting to delve into the Scripture. I felt completely confused and awkward by the fact that I had no idea where they were in the Bible and the message that was being presented. I had the Bible open to some arbitrary page, pretending that I knew what was being discussed. At this point in my intellectual development I had not yet developed the reading capabilities of my peers. Due to this issue and its associated embarrassment, I found myself in these awkward moments many times throughout the course of the regular school hours, and here was yet another chance to show off my stupidity. By the time it was my turn to read a few ages, I found myself looking over to where my mom was helping the kindergartners, instead of listening to my class discussions. The kindergartners were having fun making and decorating popsicle-stick crosses. My teacher then realized my cluelessness, ripped the Bible out of my hand, and began to impatiently thumb through the pages. This

only brought about further negative attention and humiliation. I told myself to “forget this” and chose to further withdraw from the group. While I don’t believe that this was the last time that I attended any kind of church services, I decided at that point that this elective had no relevance or positive application my life. By adulthood, I was all but completely convinced that the existence of a higher power didn’t matter to me. So, when prayer was introduced to me during these latest life quests, I initially considered it just a nice gesture. While I was told that these prayer chains had been set up fairly early in our fertility woes, I had no idea just how many people were actually participating. I continued to give a halfhearted “thank you” to the few people who mentioned it, until I finally recognized that its constructive influence had in fact seeped into my everyday existence. Despite some residual skepticism, I still found myself thanking God every morning when I woke up from a seizure—free night and praying this trend would continue. Even in this early stage, I knew that this trend would provide the necessary steppingstones to each phase of my physical as well as my emotional recovery.

My Own Kind Of Therapy

At this time in my life, I was also finally able to utilize some of those Therapeutic Recreation methods with confidence, even though it was just for my own therapy. As with any kind of pivotal life experience, these treacherous personal itineraries had forced me to apply every piece of knowledge that I have obtained, in order to achieve the most favorable outcomes. My natural inclination for sports and recreation resurfaced as I was still dealing with many of the postsurgical “side effects” during those few first few days back at home. The most noticeable of these side effects was the changes to my vision. While the distortions cleared up within a few days after my surgery, my doctor determined that I lost a significant portion of my left peripheral vision. The tunnel vision that resulted from this loss also, for some reason, affected my ability to handle bright lights. Direct sunlight provided too much stimulus for my eyes and mind to handle, resulting in a dizzy feeling when I looked up as well as the same type of headaches that experienced in the first week after my second operation. Although the stimulus seemed too great, I knew that I needed to do something to correct the problem. I started wearing sun glasses, even inside the house, and moved on to my next course of action. This is where shooting baskets came in. I used the mechanics of looking up at the glassy backboard to aim and rebound the ball to redirect my concentration from the physical pain. Although this might have been just a placebo effect, it seemed to improve my situation. By a week or two I was no longer having headaches or the dizzy feelings upon looking up. I could then concentrate on learning to compensate for the permanent left peripheral vision deficit. As the weeks and months wore on, I had adjusted to this issue as well. Most of the residual problems concerning the peripheral vision mainly dealt with objects or people that were in the immediate vicinity of my left side. To some extent this remains an issue even to this day. The self prescribed therapy was also useful, again with the application of basketball skills, for improving my finger and hand dexterity as much as possible. Just like the feelings that I experienced in the hospital, my hand

regularly went numb after continual usage. As a way to deal with this numbness, I started to the basketball from one hand to the other, concentrating on quickly and intently gripping the ball. The reason I chose a basketball for this exercise was because basketball’s rough exteriors provided additional sensory stimuli. After a day or so, Norm, my father in law, realized what I was doing, and started spending time playing catch with me. If nothing else, his participation made the exercise more interesting. After awhile, we began to change it up a bit by introducing bounce es to the “therapy” and even varying the intensities and directional angles of each throw. Again, this exercise may also have been just a placebo, but it at least gave me some control over my recovery. Eventually, the numbness gave way to a constant “pins and needles” feeling and later receded to a minimally noticeable decrease in my ability blindly feel textures and soft touches with my left hand The only time that this decrease really became evident during the course of normal daily activities was when I was trying to put my left hand into a finger glove. In the years following my operation I had particular and somewhat “comical” problems fitting my hand into a softball glove, in attempts to help to improve our kids’ T-ball skills. While I found this to be frustrating, Jason couldn’t stop laughing as he watched me struggle. Finally, I determined that I would need a different kind of glove, such as a first baseman’s glove with less finger slots to make this exercise successful.

Evaluations And Tribulations

After the first post-operative month, I had my first follow-up appointment at Saint Mary’s Epilepsy clinic in Grand Rapids. For this appointment, another MRI was taken and my doctor was able to show me the results at the appointment. This MRI showed an even larger “hole” in my brain. Pictures of the preoperative and postoperative MRIs were printed out for me, so I could compare the two scans side by side. I found it quite interesting that I was in fact functioning without those missing parts. It was also kind of funny when Jason asked the doctor—if I had to be careful not to shake my head from here on out because of the “empty space“. She replied “no“, I wouldn’t have a problem because that space was filled in by the normal fluid that protects the brain. This process usually happens within the first day or so after the surgery. She, of course was correct, because I have never had a problem with moving my head, other than the light sensitivity that I overcame after those first couple weeks following my surgery. In the next month, I had my one follow-up with the neurosurgeon and the epileptologist at the University hospitals of Cleveland. The neurosurgeon commented on how he appreciated my tenacity during the surgery. He said that “I was extremely strong and courageous to let them go as far as they did“. I thanked him for that comment but said that all I could is how much I whined during the surgery. He said that “he didn’t that“. The epileptologist again brought a video crew to document the same kinds of neurological testing that was performed in the second post-surgical day. While I again had only a limited idea of my performance for each test, the doctor turned to the video crew and commented that it was “quite remarkable, yes.” Jason and I then asked him about the still present peripheral vision loss. He said that it would most likely be permanent and mentioned that it may have resulted from me having a “small stroke” during the operation. I started to cringe as I ed during the explanation of my preoperative MRI that my epilepsy probably resulted from oxygen deprivation, also referred to as a stroke. My fear, at that point, was that I would be left with another, new defect that would cause seizures. Either way, I was just going to have to “roll with the punches” and hope

for the best. I forcefully shoved this possibility out of my mind as Jason and I concluded that we were definitely better off without the scar tissue on my brain. We made sure to convey that the surgery was still well worth the trauma, time and expense necessary to bring a previously unattainable level of seizure control to fruition. A couple months after my follow-up appointments in Cleveland, I was again asked to return to University Hospitals. This time, it was for a feature in the University Hospitals news publication. I was flown from Traverse City to Cleveland for an interview and photo shoot. This was very exciting, but extremely exhausting and when I returned home late that same night, I found out that my brain and body still had limitations. As I was sitting around our kitchen island, recounting my day to my mom, I started to see flashes of light enter my conscious. At that time I thought that I was just “tripping” as though my brain was recapping my anxious exposure to the test flashes of the professional photo shoot. After a few more minutes the flashes became more frequent but still not distressing. Then a few more minutes ed and the flashes seemed to be pulsing in congruence with my heart rate and I began to panic. I immediately grabbed my left hand as I had been conditioned to do at the beginning of those progressing seizures. In this panic, my heart rate continued to climb and the pulsing intensified with that increase but I did not actually feel any sensations or muscle contractions radiating from my fingers or any other parts of my body. Jason and my mom were watching me “freak out” but also noticed that I was still engaging them in conversation, Although the conversation was upsetting, I was not manifesting any of the typical signs of a seizure. They began to tell me that this was “something different“. Eventually I calmed down and the symptoms gradually subsided, but it still left me wondering if this was some “new kind of seizure“. I promptly went to bed and then called the doctor in Cleveland the next day. I wanted to apologize for “ruining his article” because I no longer felt that I was the “poster child” success story that he wanted me to be. He said, due to its slow onset and no other physical symptoms that it may have just been a mild migraine but I still retained some skepticism. Since then, I have not experienced another episode like that.

Clarity And Cognition

Throughout the first few arduous months, I was slowly gaining confidence that the surgery was a success despite that one postoperative seizure and the questionable migraine. By mid way through that first post surgical year, I finally felt emotionally ready to inquire into the specific features of my seizures. Before this time, I had such a poignant connection to the traumatic “internal awareness” that I couldn’t bring myself to discuss the exterior attributes with greater detail. At the sixth month check-up, I asked my doctor the one question that had nagged me for years. Why, if I experienced a seizure as an advancing or traveling sensation and muscle tensing, did everyone else just see generalized, total body convulsions? She said that, in my case, once the “trigger” was stimulated; the “electrical activity” spread too rapidly to physically see a beginning location. Then, the doctor added that I could see the video of the seizure recorded during my time in the epilepsy monitoring unit. I considered that idea for only a few seconds before I gave my hurried reply. I would rather watch a video of my surgery than to see myself convulsing. With a peaked interest, she asked me if the staff at the University Hospitals had recorded my surgery. I said “no but it would have been cool if they had.” Although my hasty response made it obvious that my psychological mending was far from complete, the intrigue into the operation was blooming within me. Investigating what occurred during an epilepsy surgery became a positive diversion and a turning point in my overall healing. Along with the newfound intrigue, I also began to thoroughly reflect back on this tumultuous time of my life. Beyond trying to explain the initial dream, I never really talked about the seizure’s mental wrath. By the time I regained full consciousness, this was nothing more than a secondary concern. It definitely had an influence on my emotional condition but “coming out” of the episode gave me the assurance I needed. At last, I had the poise to examine this undisclosed hidden feature. As I thought about the subject, I soon recognized that the focus divergence of the more recent theatrical dramas had indeed changed my preseizure viewpoint and mid-seizure acceptance level. I had to concede that I was completely enamored by that revelation of the “bus” drama. After all of those

years spent fighting those futile heartrending battles, I found it quite amazing that one single, spontaneous but complex thought could produce such a calming effect. This was the result that I was never able to achieve when I told myself to “relax“. I was so impacted by that thought that I not only tried to the exact words, but would try to consciously induce the vision just before the mind and body siege overwhelmed me. Despite my efforts, I was never able to set the scenario in motion myself. This had always left me to wonder where the clarity had come from. I suppose I could have rationalized that, because I was having many more seizures then I had previous to my pregnancy, probably occurring in longer durations, some amount of clarity was bound to break through. But given the timing of such a drastic deviation from the commercial—like format, I began to ponder other explanations as well. I was never able to reach any acceptance or reassurance amid the powerful grasps of a progressing seizure until I had new lives dependent on my physical and emotional safety. It then occurred to me that maybe, just maybe, all of those prayers from family, friends and their corresponding communities somehow reached me. In that case, ultimately I have God to thank for the healthy lives of our beautiful children. I have God to thank for this revelation that fostered the much needed courage, strength and perseverance to pursue and endure a high risk pregnancy and the previously unattainable success of a complex brain surgery. These spiritual speculations were still fairly fresh in my mind as I entered the seventh month and the post-operative neuropsych evaluation. I thought that the comforting clarity as well as my therapeutic efforts would surely contribute to more positive results. My emotional recovery was definitely progressing, granted, little by little and I really believed that I would eventually make it through this entire ordeal. This evaluation confirmed the sensory deficits in my left hand, as well as an even more pronounced decrease in my ability to manipulate small pegs with my fingers. I figured that this is probably due to the slight residual numbness at my fingertips. The preoperative results in this area were not exactly stellar so that difficulty really wasn’t a surprise. Although these tests indicated that there were in fact noticeable deficits, I still think that my therapeutic efforts were productive. They certainly were not a hindrance in any way, and if nothing else, assisted me with the emotional recovery by providing a diversion from the constant anxiety. The rest of my cognitive testing proved to be similar to my

preoperative test results, actually indicating a slight improvement in my memory but there was no real noticeable change in the other cognitive areas. Even though I was continuing on with my Morning Prayer routine and was satisfying surgical fascination, I realized I still needed more assistance with the psychological aspect of my healing. From all of the worry that accumulated over the course of my pregnancy, pre-surgical evaluation and postsurgical recovery, I had continued to experience the signs of anxiety such as insomnia and a constant state of jitteriness. Finally, I put my pride aside and was prescribed an antidepressant to alleviate the symptoms. My sleep improved and I finally felt like I could function without taking several naps. Getting better sleep also eased much of the bothersome jitteriness. By the end of the first post-operative year, I functioning much better and I still had not experienced any tonic-clonic seizures or even any of the sensory auras that we had so often referred to as “ticks“.

“Barricade Of Orange Barrels”

By my first annual post-surgical appointment with the epileptologist, I felt that I was ready to take on the responsibility of getting a driver’s license. This was more frustrating than I even imagined. I suddenly felt as though my recovery progression had been somehow diverted into a proverbial barricade of orange barrels at a pending construction zone. As I started to check into the process, I was faced with my doctor’s reluctance based on the grounds of my left peripheral vision loss. She initially refused to fill out the state-required medical clearance and evaluation forms, citing her legal and ethical liability. After all of the angst, diligence and persistence that I put forth to make my surgical success a reality, it was really disheartening to realize that I was still considered a “public safety hazard“. Along with the initial inquiry with my doctor, I also pursued the other parts of this process. This consisted of medical evaluation of my overall physical and mental competency. Through the initial assessment that was performed by the Munson Medical Care occupational therapy department, I was scheduled for an appointment to see an ophthalmologist, to find out if my total vision met the minimum state requirements for driving. Despite having this appointment, I still did not receive the medical clearance forms needed in order for the “driver’s rehabilitation” program to obtain a temporary license for me. This temporary license was essential for their “on the road” evaluation of my physical skills and mental processing. After a few weeks of even more persistent inquiries, I finally convinced my doctor that she would be sending the medical clearance forms to the driver’s rehab program and not to me personally. Her concern was that if the forms were sent to me, than I would automatically be cleared without any vision tests performed. While I did understand her concern, all I was really asking for was the chance to be evaluated appropriately. At the ophthalmology office, the tests concluded that my visual acuity and overall peripheral vision did meet the state requirements. I ed the driver’s rehabilitation evaluation and was recommended for a restricted license, basically

fitting my comfort level of small town situations. The next step was ing the driving test at the Secretary-of-States office. This process was also wrought with delays which included weather-related closings, the assessor being on a medical leave and the state-required physical assessment by a family physician, which I had not had within the last year. Apparently, after all of vision questions had been answered, the ophthalmologist’s evaluations had no bearing on my physical assessment, even though that had been the sole issue all along. Once those delays were finished, we then had to deal with the technicality of Jason having put the updated car insurance card into our truck before the old one had expired. Because we had no immediate proof of insurance for that exact day, the test was once again postponed. Eventually, I did an unrestricted driving test but have continued to stay within my comfort zone of small town and rural settings. Even this limited utilization has been a tremendous asset because South Boardman is basically a rural area with very few public transportation options.

“All Consuming Pothole”

During the second postoperative year, my anxiety decreased quite significantly. By midway through that year, I was able to discontinue the antidepressant altogether. Although the Trileptal was decreased a little shortly after my surgery, due to a slight toxicity, I was still taking both Lamictal and Trileptal through my second year. At this time, I was still free of those tonic-clonic seizures and the sensory auras as well. By the third postoperative year, I was able to totally withdraw from Trileptal. This was very exciting and I begin to wonder if there would be a day that I would not be taking any medication at all. I completed this withdrawal and remained completely seizure free. A few months after my third annual postoperative follow-up in Grand Rapids however, I found out fatigue still had a more pronounced effect on my abilities. This conception was like hitting an all-consuming pothole on a recently paved highway. It caught me completely off guard and spun me into the shadows of my troubled former self. In late August, I again found myself in the same type of nonstop, on the run situation that I had when I was flown down to Cleveland. We had been trying to cram all of our summer promises to our kids into basically a two-week period. After a long day of activities involved with our church “fun in the park” day, I sat down for dinner at a distant picnic table. The “fun in the park” was an annual community outreach event and Jason and I had been there all day with our kids, setting up and taking down the various food tents and portable yard games. The fatigue caught up with me when I was sitting at the table, away from the remaining group of people. After awhile, I decided to see what Jason was doing on the other side of the park. I walked up to him, looked at the people who were standing or sitting in front of us and then, felt a strange tongue tied feeling come over me. I started to ask Jason when he thought we would be leaving but could only utter a slow, drawn-out series of uhs. Jason’s first response was a stern “What are you trying to say?” Throughout the course of a typical day, I often forget a key word that I needed to convey my thoughts. I think I have always had this problem, but sometimes Jason’s patience with me gets kind of worn thin with this matter. This time though, he realized that I really could not speak and his “seizure response” kicked in. Ever since we

returned home from Cleveland three years before, Jason had been pretty adamant that the trials of epilepsy and my surgical experiences were “behind us“, but on this day even he reverted back to some of the pre-surgical hysteria we tried so hard to distance ourselves from. He started to hold on to me but instead decided to pick me up as though I were a “sack of potatoes” and then headed for our truck. His reaction infuriated me but I did understand his concern. I guess his “emotional recovery” wasn’t quite the swift departure that he had claimed it to be. I sat in the enger’s side of the truck, trying to assess the situation. I was still upset with Jason but even more disappointed with myself. “Why did I try to fight through that feeling?” There was an obvious disconnect between what I was trying to say and actually saying it. I once again wondered if this was some kind of “new seizure“. There was a voluntary element to the incident however, that made it inconsistent with my pre-surgical episodes. It only lasted a few seconds before I gave up trying to speak, so it was hard for me to know for sure. I did have the same type tongue-tied feelings in the years prior to this experience, but I was always expecting the pre-surgery seizure symptoms to develop. It usually caused me to pause and sort of prepare myself those partial “rapid stuttering” seizures to start. In the anxiety of the moment, I had never tried to push through or disregard the feeling before this fateful day. But, because these feelings never amounted to any physical manifestations, I chalked them up as “just anxiety or plain old tiredness” and figured that I was strong enough to overcome and function through them. I was genuinely surprised and disappointed to find out that I was wrong. Eventually, I did ask the nurse practitioner at Saint Mary’s Epilepsy clinic about the incident but she also could give me no definitive answer on whether or not this was another “new kind of seizure“. Jason, playing the devil’s advocate, said “even if it was a small seizure, our lives still had been drastically improved from where we were three years before“. From time to time, I still experience the tongue tied feelings, particularly when I am really tired, but I have learned to wait for a few seconds until the feeling es before continuing to speak.

Resignations And Gratitude

By my fourth postoperative year, I had relaxed quite a bit about my medicine and found myself inadvertently skipping doses with no ill effects. The only indicator that I had concerning this issue was a jittery feeling similar to those I had while I was experiencing the constant anxiety. Before my surgery, if I had been so much as four hours past my scheduled dose, I would have been “in a world of hurt“. Having no ill effects gave me a newfound optimism that maybe I could at least reduce the Lamictral. With the approval of my doctor, I tried two different times to gradually reduce the Lamictal by 100 mg. Each time, I survived the first week of the reduction seizure free and without any other symptoms. By the beginning of the second week however, I was left with insomnia and that constant jittery feeling but still no tonic-clonic seizures. As slight as the insomnia and jitteriness seemed, they still had a profound impact on my ability to function. Although reducing the medicine by 50 mg did not give me any problems, it also did not simplify my life. If I chose to reduce that dose by a 50 mg, I would have to cut the 100 mg pill in half, which would just take longer for me to set up my pill counter for each week. Because my reasons for reducing the Lamictal did not include a “toxic reaction“, I decided not to mess around with my medicine anymore. I guess I have resigned to the fact that I will have to take the medication for the rest of my life. I am now in my fifth postoperative year. I have been able to participate in my kids’ activities and schooling more than would’ve ever been possible had I not had the surgery. Our lives are very busy and I have no time to deal with those seizures and the physical and emotional aftermath. I consider myself very fortunate that I do not have to deal with those issues anymore. One of the greatest accomplishments of this surgery was that my kids may never have to know what to do if mom has another seizure. While they have vague memories of my being gone, they don’t what our lives were like prior to the surgery. As of now I have yet to talk to them about my epilepsy or the operation. Through their school and social interactions, they have been exposed

to a few people with some more pronounced cognitive or physical disabilities. From their exposure, they are learning that God blesses each individual with their own set of capabilities and challenges and that they should be grateful for all of the activities that they are able to do. Soon, I feel that they will be able to understand the aspects of this “hidden” disability and I will be able recount this perilous time to them. For now though, Jason and I are just enjoying their innocence and exuberance and my ability to participate in their lives.

“Epilepsy’s Life Lessons”

By the end of that first year of post-surgical evaluations and spiritual speculations, my recovery was well on its way to coming full circle. Through this progression, I gradually embraced a kind of personal “paradigm shift“. This shift gave me an expanded perspective that I could have never fathomed to be possible before my surgery. Going through the operation had opened up a wider dialogue concerning my life and epilepsy in general. Now, after five years, I am finally able to see this condition as my family has seen for so many years. The expanded perspective has enabled to more fully appreciate all of epilepsy’s life lessons. These are the morals that my family and I had learned throughout the course of those difficult times. One lesson was that I did not need to be “at my wits end” with general neurologists, who displayed little interest in epilepsy or its lifelong complications. Their approval was not necessary for me to initiate a more productive investigation into the best possible treatment options for my unique situation. Prior to researching the non-medicinal alternatives, I had been unaware that epilepsy specialists existed. I was glad to discover that this condition is not viewed by everyone as some kind of benign annoyance or adverse liability. I was very fortunate that my case was not met with the continued surrender from the elite medical professionals at Saint Mary’s Epilepsy Clinic, but was referred to the University Hospitals of Cleveland for even more specialized care. I will be forever thankful for their dedication to research and advancements in epilepsy treatments. Due to these advanced treatments, I know that I finally have the first realistic possibility of complete control. I had also gained the wisdom that my life is not about trying to outrun the” demons from within“. Instead, it’s about finding comfort amid the chaos and overcoming the metaphorical counterweight of insufficiency. I now understand just how lucky I was to maintain that awareness that I perceived as a kind of condemnation for so many years. While I would’ve preferred to have just “blacked out completely” with no awareness or memory of those scenarios, I would’ve never acquired the acceptance and mental fortitude to eventually

endure the added physical and emotional pain of those most recent life conquests. Although I finally felt validated concerning those scholastic struggles, I know that unlike many people afflicted with this condition, I was competent enough to participate in my own treatment plan. Therefore, I was able to actively engage medical personnel in the surgical consultation and evaluation process. I was especially intrigued by all of the information that could be obtained through the pre and post-surgical cognitive testing as well as the medical technology. My capabilities also had immense benefits during the brain mapping and resection components of my surgery, as I was required to be conscious and coherent while the operation took place. Through my own fortitude and problem solving, as well as my college education and work experience, I was also able to facilitate a more successful outcome, even if it only contributed to my psychological recovery. All of this understanding enabled me to value my accomplishments more, and gave me further incentive to strive toward a more fulfilling future. The most indispensable moral, however, was to recognize the importance of a close—knit family and community network and all of their physical, emotional and spiritual contributions that were made. It was through their devotion that I was able to stay grounded when so much of my life appeared to be up in the air and out of my reach. I learned that God will see me through the obscurity, and that I can rely on our collective determination to get us through the rest“ of those ancillary tribulations. Given all of the trials and trauma, acceptance and fortitude, I realize that my brain is never going to be normal. I know that I will always have to compensate for those long-standing cognitive deficits. I have learned to live with the vision impairment and sensory loss that serve as reminders that surgery has its tradeoffs and limitations. Though not as frequent or distressing, I still experience indescribable visual and emotional flashbacks of the thoughts and scenarios that possessed me during some of those seizures. When I am really exhausted, I can lie down and still sense the left side off my head and body starting to distort like cartoon ghost animations, floating to the top of the T.V. screen. Other times, I awake from a nightmare that an advancing, coiling charley horse is overtaking my legs and torso. Although these sensations seem so real, no actual symptoms have materialized. I have come to appreciate them as fleeting neurological tokens of where I have been and how far I have come.

Despite, or perhaps in light of these acknowledgements, I have been blessed with a kind of personal integrity that I would not have achieved without the challenges and spiritual awakening. It was because of these revelations that I have the gratifying sense of having truly gotten off that bus!

Living Museums

It’s amazing, God’s gift of awareness To manipulate our surroundings, To create, care and caress, To unfold life from within, To wrap with comfort, To reveal our existence, To have chances to know That we are living museums With hearts, minds and bodies that grow.

“Living Museums” describes the continuing revelation that we should all be thankful for all that God has given us and the blessings that we have yet to receive. I am certain that we continue to grow even long after childhood and our awareness of this is a blessing in and of itself. Because of this awareness I was able to appreciate the recorded message and comforting promise within those times of pain and insecurity.

Final Thoughts

This book was written to give people the understanding that epilepsy isn’t something to be cast aside as just a minor problem. I know that I am very fortunate to be able to give this kind of insight. I believe that my mid-seizure awareness was a gift even during those times that it seemed like a curse. I feel that many readers with this condition will be able to relate to my experiences at least on some level. While I also realize that some readers will think that my story is just that, a nice piece of fiction, I wrote it based on my memories and perceptions of my seizures and my interpretations of the medical explanations that were given in my case. My goal wasn’t to reiterate technically sound definitions of medical terminology, but instead to take the reader on a journey into those little known features of my seizures, in order to offer an alternate perspective on epilepsy and its everyday problems. I chose to use complete anonymity of everyone other than family to maintain a consistency in my writing. Because I was not going to give the names of those individuals who I felt wronged me, I chose to leave most other names out of my story. While I hold Saint Mary’s Epilepsy clinic and the University Hospitals of Cleveland in the highest regard, I think that their quality of services extends beyond the medical staff assigned to my case. I recognize that there many types of seizures and they all carry their unique sets of complications and inconveniences, and that not everyone who experiences tonic-clonic seizures has that “internal awareness“. That being said however, I don’t want to give anyone the impression that their condition, whether painful or not, does not warrant the attention of specialists. As I have learned the hard way, there is no replacement for quality care. I would also like everyone to know that there is validity to divine interventions, you just have keep, or in my case pry, your mind open to its potential. I know that I have been given the strength to continue. Nothing was more liberating than the thought “I WILL get off that bus“, even when the ride seemed too long and treacherous to believe. I also recognize my eventual “dismount” truly required a collaborative effort from everyone and, in a spiritual and emotional sense, their

willingness to be on that ride with me.