Off That Bus: Visions of an Epileptic Mind
By Sarah Grahn
()
About this ebook
br> Sarah Grahn was introduced to epilepsy in the rural seclusion of northern Minnesota. Its trials and influences have since accompanied her to various locations in both the upper and lower peninsulas of Michigan. She currently resides near Traverse City, Michigan with her husband and three children. Her perseverance and dedication to her family has been the inspiration for sharing this story.
Sarah Grahn
Since her early days in elementary school, Sarah Grahn often felt a bit “off”, but even she had no idea that her struggles would get compounded during an ordinary ride on a school bus. On that bus, she had one painfully vigilant dream that forever changed the course of her life and altered her perspective on personal control and self respect. After tumultuous twenty year passage filled with ”traveling charley horses” and terrifying imagery, she finally arrived at a place of revelation and resiliency. From all of her moments of “chaos and static”, she discovered a spiritual awakening and just how important the unfettered support of family and community is to personal triumph and acceptance. Sarah Grahn was introduced to epilepsy in the rural seclusion of northern Minnesota. Its trials and influences have since accompanied her to various locations in both the upper and lower peninsulas of Michigan. She currently resides near Traverse City, Michigan with her husband and three children. Her perseverance and dedication to her family has been the inspiration for sharing this story.
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Off That Bus - Sarah Grahn
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 joints 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 passed, 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 remember of the rest of that night was very vague and surreal. The memory consisted of my parents and me standing at the admittance desk at the local hospital in Grand Rapids, Minnesota. I remember 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 remember the lady at the admittance 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 remember 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